AiArthritis Voices 360 Talk Show: Recent Episodes
International Foundation for Autoimmune & Autoinflammatory Arthritis
On Sunday, join International Foundation for AiArthritis and fellow patient cohosts as they lead discussions in the patient community as well as consult with stakeholders worldwide to solve the problems that matter most in the AiArthritis community.
Exercise is one of the most recommended ways to manage AiArthritis diseases, yet for many patients, staying active can feel overwhelming. Pain, fatigue, disease flares, and mental health challenges often make the advice to "just exercise more" unrealistic. In this episode, Leila P.L. Valete and Eileen Davidson explore what research and lived experience reveal about movement, physical activity, and exercise for people living with AiArthritis diseases.
Drawing from research presented at EULAR 2026, patient lived experience data, and their own personal journeys, Leila and Eileen discuss the barriers that prevent people from staying active and why movement looks different for everyone. They also explore the connection between physical activity and mental health, highlighting how anxiety, depression, and chronic pain can affect motivation while sharing practical strategies that make movement more accessible.
Whether you're just getting started or adapting your routine during a flare, this episode offers realistic guidance, trusted resources, and encouragement to help you find movement that works for your body.
Episode Highlights:
- What EULAR 2026 research revealed about exercise and non-pharmacological care
- Common barriers that make physical activity difficult for people living with AiArthritis diseases
- The connection between movement, mental health, and long-term disease management
- Patient experiences with adapting exercise during flares and changing symptoms
- Practical movement ideas and trusted resources to help you stay active safely
Links & Resources* Just One Move - https://justonemove.ca/ * Arthritis Research Canada Education Series - https://www.arthritisresearch.ca/education-series/strong-with-arthritis/ * Arthritis Foundation - https://www.arthritis.org/health-wellness/healthy-living/physical-activity/getting-started/your-exercise-solution * Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org * Donate to Support the Show:www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co-Hosts:
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
Connect with Leila:
Tiktok: @Lupuslifestyle.lei
Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints, Healthline, Chronic Eileen or can be found being a mom to her son Jacob.
Connect with Eileen:
Twitter: @ChronicEileen
Every year, the AiArthritis team returns from EULAR with new research, expert interviews, and important conversations. This year, they also gathered lived experience data from the community to better understand how the topics discussed at the conference compare with what patients experience every day.
In this episode, host Leila P.L. Valete is joined by patient representative James Hollen to revisit the biggest themes from EULAR 2026, including fatigue, pain, mental health, and the impact of disease on work and daily life. They share what the community told us through lived experience surveys, reflect on James' first EULAR conference as a patient representative, and explore why patient voices are becoming an essential part of research conversations.
Whether you followed our Go With Us! coverage or are hearing about EULAR for the first time, this episode highlights how lived experiences help shape better research, more meaningful conversations, and a stronger future for patient care.
Episode Highlights:
- What lived experience surveys revealed about fatigue, pain, mental health, and quality of life
- How patient perspectives aligned with key research presented at EULAR 2026
- James' reflections from attending his first EULAR conference as a patient representative
- Why patient voices are becoming an essential part of research and healthcare innovation
- How community feedback will help shape future AiArthritis Voices 360 conversations
Links & Resources:* Fatigue Survey: https://bit.ly/fatigueLED + Fatigue EULAR: https://youtu.be/0e57fykYImc * Mental Health & Exercise Survey: https://bit.ly/mentalhealthLED + Mental Health & Exercise EULAR: https://youtu.be/Akc5So6ePd0 * Pain Survey: https://bit.ly/painLED + Pain EULAR: https://youtu.be/Y7vFImtSfBw * Work & School Survey: https://bit.ly/workandschoolLED + Work & School EULAR: https://youtu.be/fzygxv1CewU * Cell Therapy (CAR-T) Survey: https://bit.ly/celltherapyLED + Cell Therapy (CAR-T) EULAR: https://youtu.be/f7fkAK_u94o * AiArthritis Talk Show Community Response Form: https://bit.ly/AiArthritisVoices360Response * Playlist to All Videos: https://youtube.com/playlist?list=PLZW5ZyvNnYl1_ZCVQQCw2ucGik3rrICMP&si=pkUFTjGGA29RjbSU * Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org * Donate to Support the Show:www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co-Hosts:
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
Connect with Leila:
Tiktok: @Lupuslifestyle.lei
AiArthritis was built by listening to patients. For more than 15 years, conversations within the community have shaped programs, resources, research initiatives, and advocacy efforts designed to improve the patient journey. In this episode, Leila and Tiffany discuss AiArthritis' next chapter and how the organization is expanding its commitment to collecting, analyzing, and acting on lived experience data.
The conversation explores what lived experience data is and why it matters. Patient stories can help identify unmet needs, improve healthcare conversations, influence research priorities, and drive meaningful change. Leila and Tiffany also share how AiArthritis is creating new opportunities for patients, care partners, and advocates to contribute their experiences and ensure every voice is counted.
Whether you have participated in an AiArthritis program before or are just discovering the organization, this episode offers a behind the scenes look at how patient experiences become real world impact. It also highlights new ways to get involved and help shape future programs, resources, and advocacy efforts.
Episode Highlights:
- How sharing your experience can help improve care for future patients
- Why AiArthritis is expanding its focus on lived experience data
- Real examples of patient feedback leading to new resources and solutions
- New ways to participate in research and community driven initiatives
- What's coming next for AiArthritis Voices and patient engagement
Links & Resources* Mystery Patient Guide: https://www.aiarthritis.org/undiagnosed * JHA/HCP Communication Toolkit: https://www.aiarthritis.org/JIACommunication * Submit Your Rant: https://www.aiarthritis.org/rant * WTHellth Website: https://wthellth.org/ * Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org * Donate to Support the Show:www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co-Hosts:
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @tiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
Connect with Leila:
Tiktok: @Lupuslifestyle.lei
Vagus nerve stimulation has been a hot topic in the AiArthritis community, and for good reason. In this episode, host Tiffany sits down with Dr. Vibeke Strand, Adjunct Clinical Professor in the Division of Immunology/Rheumatology at Stanford University, to explore what VNS actually is, what the research shows, and why it could be a game changing option for people who have not found success with traditional treatments.
Whether you have struggled to find a treatment that works or are simply curious about what is emerging in the rheumatology space, this episode shares useful information you can bring to your next doctor's appointment.
NOTE: As of April 2026 this device is only available in the United States. We will keep you updated as it becomes available elsewhere!
Episode Highlights:
- What VNS is and how it connects to inflammation in AiArthritis diseases
- How VNS differs from traditional biologics/DMARDs and whether it can be used alongside them
- What the research says about its effectiveness beyond just pain relief
- Who might be a good candidate and how to start the conversation with your care team
Links & Resources* Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org * Donate to Support the Show:www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co-Hosts:
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @tiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
Dr. Vibeke Strand is an Adjunct Clinical Professor in the Division of Immunology/Rheumatology at Stanford University, where she has taught since 1993, and previously at University of California, San Francisco. Dr. Strand has also served as a consultant in clinical research and regulatory affairs to pharmaceutical and biotech companies since 1991. She has been a clinical rheumatologist for more than 40 years, previously in subspecialty practice in San Francisco, as a clinical investigator, and subsequently senior positions in clinical research at three pharmaceutical/biotech companies before embarking on her consulting practice.
Among her many accomplishments, Dr. Strand has authored over 450 original publications, is a Fellow of the American College of Physicians, and a Master of the American College of Rheumatology.
Sleep problems are one of the most common and most frustrating experiences for people living with AiArthritis diseases. In this episode, Eileen Davidson breaks down why getting a good night's rest can feel nearly impossible when you're living with an AiArthritis disease, and shares what has actually helped her along the way.
Eileen explores the many reasons sleep is so disrupted by AiArthritis diseases, from pain and stiffness to the role that chronic inflammation plays in interfering with the body's natural sleep cycles. She offers an honest, personal reflection on what sleepless nights really look like from a patient's perspective and why this issue deserves more attention in conversations about disease management.
Whether you're lying awake wondering if anyone else understands what you're going through, or you're looking for practical steps to try tonight, this episode offers both validation and real, actionable guidance from someone who lives it every day.
Episode Highlights:
- Why sleep is uniquely challenging for people living with AiArthritis diseases
- The connection between inflammation and disrupted sleep
- A personal reflection on what sleep struggles really feel like
- Small, realistic habits and strategies that can actually make a difference
Links & Resources* Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org * Donate to Support the Show:www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co-Hosts:
Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints, Healthline, Chronic Eileen or can be found being a mom to her son Jacob.
Connect with Eileen:
Twitter: @ChronicEileen
A new diagnosis can bring relief, fear, and uncertainty all at once. In this episode, Leila and Deb share advice from the AiArthritis community on what they wish they had known right after being diagnosed with an autoimmune or autoinflammatory arthritis disease.
Leila and Deb explore the importance of trusting your body, especially when tests are inconclusive or symptoms are dismissed. This episode highlights how self advocacy, second opinions, and clear communication with your care team can shape your experience. Community members also reflect on the emotional side of diagnosis, including grief, patience, and the mindset shift that comes with learning to live with chronic illness.
Whether you are newly diagnosed or supporting someone who is, this episode offers validation and practical guidance for navigating the early stages of the patient journey.
Episode Highlights:
- Why trusting your body matters, even when tests are unclear
- How self advocacy and second opinions can change your care experience
- The emotional impact of diagnosis and the importance of grace and patience
- Practical tools like symptom tracking, rest, and shared decision making to support long term management
Links & Resources* Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org * Donate to Support the Show:www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co-Hosts:
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
Connect with Leila:
- Tiktok: @Lupuslifestyle.lei
Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.
Connect with Deb:
- Facebook: @deb.majcherconstien
- Instagram: @debconstien
- Twitter: @debconstien
Oral health is often treated as optional or cosmetic, but for people living with AiArthritis diseases, it can have a real impact on pain, fatigue, nutrition, and quality of life. In this episode, Leila and Bridget explore why oral health deserves a place in routine disease management and why so many patients are never told their symptoms are disease related.
The episode looks at how autoimmune conditions and common medications can affect the mouth, from dry mouth and gum inflammation to delayed healing and increased infection risk. It also breaks down the connection between oral health, the immune system, and systemic inflammation, helping patients better understand why issues can show up even when oral hygiene is strong.
Join us on this episode to hear practical, gentle strategies for protecting oral health when saliva is reduced or sensitivity is high. The discussion emphasizes adaptation over perfection and reinforces that oral health challenges are not personal failures, but part of living with complex chronic disease.
Episode Highlights:
- Why oral health is often overlooked and why it matters in autoimmune disease
- How inflammation, medications, and reduced saliva affect the mouth
- The link between oral health and conditions like Sjögren’s, rheumatoid arthritis, lupus, and scleroderma
- Gentle, realistic strategies to protect teeth and gums without causing more harm
Links & Resources* Go With Us! To ACR 2025: Oral Health: https://www.youtube.com/watch?v=q5XlwG4cNXo * See more about co-existing conditions, disease management & more www.aiarthritis.org/patientjourney * Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org * Donate to Support the Show:www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co-Hosts:
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
Connect with Leila:
- Tiktok: @Lupuslifestyle.lei
Bridget Dandaraw-Seritt founded a patient based organization that advocates for access to compassionate care and provides community support. She’s a published author on therapeutic cannabis, presents at medical conferences, and is engaged in the policy making process.
Connect with Bridget:
Facebook: Advocates for Compassionate Therapy Now
As we close out 2025, this special episode looks back on some of the most impactful conversations from this year. This episode reflects on key moments that captured the real experiences of people living with AiArthritis diseases and the topics patients told us mattered most.
Listeners will hear powerful conversations exploring what it means to parent while managing chronic illness, the often overlooked neurological symptoms of lupus and Sjögren’s disease, and the long journey many mystery patients face searching for answers. These episodes go beyond symptoms to explore the emotional toll, physical obstacles, and systemic hurdles patients navigate, showing why knowledge and advocacy can transform the patient journey.
Whether you are hearing these stories for the first time or revisiting them, this episode brings the voices, clinical insights, and lived experiences that shaped AiArthritis patients in 2025.
Episode Highlights:
- Parenting and family life while living with chronic illness
- Neurological symptoms in lupus and Sjögren’s disease and why they are often missed
- The mystery patient experience and the impact of delayed diagnosis
- Why patient voices continue to drive education, awareness, and change
Links & Resources* Mystery Patient Guide: www.aiarthritis.org/undiagnosed * IgG4-RD Resource :https://igg4ward.org/education-and-resources * Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org * Donate to Support the Show:www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Remission is no longer an abstract idea for people living with AiArthritis diseases. Thanks to earlier diagnosis, better treatment options, and growing global awareness, more patients are reaching remission and staying there. In this episode of AiArthritis Voices 360, Health Education Manager Leila P. L. Valete sits down with Neil Betteridge of the Global Remission Coalition to explore what remission truly means and why it is becoming a realistic goal for many.
Together they unpack how remission differs from basic disease control and why that distinction is so important for daily life. They also talk through the emotional and practical impact of reaching remission, the role of early action, and the barriers that still prevent many patients from accessing timely care. The conversation highlights what sustainable remission looks like in the real world and how better education, support, and policy attention can help more people get there.
Whether you are newly diagnosed or years into your patient journey, this episode offers a grounded and hopeful look at the road to remission and the steps that can make a life-changing difference.
Episode Highlights:
- What remission really means and how it differs from basic disease control
- Why remission improves quality of life, mental health, and daily function
- Key factors that help patients reach remission including early diagnosis and timely treatment
- Common barriers patients face like limited access to specialists, treatment delays, and lack of information
- What it takes to sustain remission through monitoring, adherence, and patient support
Links & Resources* Global Remissions resources: www.globalremission.org * AiArthritis remission information: https://www.aiarthritis.org/remission * Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org * Donate to Support the Show:www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co Hosts:
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
Connect with Leila:
Tiktok: @Lupuslifestyle.lei
Neil Betteridge developed juvenile arthritis at age three, an experience that shaped his lifelong commitment to advocating for people with chronic diseases. He has led major patient organizations in the UK and globally, including serving as CEO of Arthritis Care and now as Senior Director of the Global Alliance for Patient Access, where he also chairs the Global Remission Coalition.
With decades of experience in public affairs and patient engagement, Neil has advised health ministers, worked with the Royal College of Physicians, and held key leadership roles in international networks such as the Global Alliance for Musculoskeletal Health and EULAR. His work continues to advance policy, access, and better outcomes for people living with chronic inflammatory conditions.
Connect with Neil:
Website: www.globalremission.org
X/Twitter: https://x.com/Neil_Betteridge
Cannabis has come a long way since we last covered it in 2020. With more patients using CBD and medical cannabis to help manage chronic pain, inflammation, anxiety, and sleep issues, it is time for an important update. In this episode, AiArthritis Health Education Manager Leila P. L. Valete is joined by co-hosts and patient advocates Eileen Davidson and Bridget Seritt for a real conversation about what has changed, what we still need to learn, and what patients should know before trying cannabis for autoimmune and autoinflammatory arthritis.
The hosts explore how research, attitudes, and medical discussions around cannabis have evolved. They share their own experiences using CBD and cannabis, discuss new findings from rheumatology research, and highlight the ongoing need for better access, safety education, and provider awareness. The conversation also looks at how stigma is shifting as more patients and clinicians see cannabis as a legitimate part of symptom management rather than a last resort.
Whether you’re new to the topic or already using cannabis as part of your treatment, this episode offers clear guidance, personal insight, and a thoughtful look at its role in patient care.
Episode Highlights:
- How conversations around cannabis and CBD have evolved since 2020
- What new research says about its role in managing pain, sleep, and mental health
- Patient experiences using cannabis alongside traditional treatments
- Benefits, risks, and the ongoing debate around medical versus self-directed use
- How access, education, and stigma continue to shape patient choices
Links & Resources* Go With Us! to EULAR 2025: Should Doctors Prescribe Cannabis for Autoimmune Disease?: https://www.youtube.com/watch?v=iw-KJWbKpuo * Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org * Donate to Support the Show:www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co Hosts:
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
Connect with Leila:
Tiktok: @Lupus.lifestyle.lei
Instagram: @Lupus.lifestyle.lei
Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints, Healthline, Chronic Eileen or can be found being a mom to her son Jacob.
Connect with Eileen:
Twitter: @ChronicEileen
Instagram: @ChronicEileen
Facebook: @ChronicEileen
Bridget Dandaraw-Seritt founded a patient based organization that advocates for access to compassionate care and provides community support. She’s a published author on therapeutic cannabis, presents at medical conferences, and is engaged in the policy making process.
Connect with Bridget:
Facebook: Advocates for Compassionate Therapy Now
We have all had those moments where the healthcare system leaves us throwing up our hands and asking, WTH?! From outrageous medical bills and denied prescriptions to hours on the phone with insurance companies, people everywhere share the same frustrations. That is why AiArthritis launched the global #WTHellth?! campaign, a place to rant, connect, and turn stories into change.
In this episode, Co-hosts Tiffany Westrich-Robertson and Ray Patnaude introduce the campaign and explain how your everyday frustrations with healthcare access, insurance, and prescription costs can be transformed into powerful patient experience data (PED). By collecting thousands of stories, WTHellth?! helps government leaders, policymakers, and insurers see the real barriers patients face.
Whether you share your rant on social media with the hashtag #WTHellth?! or submit your story directly at www.wthellth.org, your voice matters. Together, we can turn frustration into action and make sure patients everywhere are part of the conversation about healthcare reform.
Episode Highlights:
- How to share your story and create impact with the #WTHellth?! campaign
- Common patient frustrations, from step therapy to unaffordable prescriptions
- How ranting together creates both emotional impact and usable patient experience data
- How collected stories will be used to drive healthcare reform and policy change
Submit Your Patient Story: wthellth.org
Links & Resources* Participate in Patient Experience Survey: https://bit.ly/PatientWhy * Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org * Donate to Support the Show:www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co Hosts:
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @tiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
Ray Patnaude is a patient advocacy leader with over a decade of experience advancing patient-centered health policy and education. Living with psoriatic arthritis, he brings authenticity and passion to his work, amplifying patient voices while developing innovative educational tools for advocacy organizations worldwide. As manager of AiArthritis’ Knowledge = Empowerment program and the #WTHellth?! campaign, he drives impactful initiatives that empower patients and shape meaningful health reform.
Due largely to a really complex healthcare system, prescription drug affordability is a growing challenge in the United States. Good news! Efforts are happening RIGHT NOW by several government representatives to try and address it. But improvements are moving forward without asking patients what prescriptions THEY can or cannot afford - and they aren’t asking WHY this is.
In this 360it spin-off episode, AiArthritis CEO, Tiffany Westrich-Robertson, and Grassroots Advocacy Manager, Vanessa Lathan, discuss the importance of understanding “the patient why” and how YOU can share your experiences TODAY to help guide the solutions.
Drawing from new data in the Ensuring Access through Collaborative Health (EACH)/Patient Inclusion Council (PIC) Coalition Prescription Drug Affordability & Unaffordability Patient Experience Project, Tiffany and Vanessa explain that the reasons behind affordability vary and all people treated by high retail cost medications should continue to share their why. Then we can collect enough voices, find enough patterns, to guide the government on how to help us. t.
This broadcast highlights why patient voices must guide healthcare reform and how you can - and should - take part in the ongoing Patient Experience survey to ensure solutions reflect real experiences. If you’ve ever skipped or stretched medication, faced unexpected insurance barriers, or worried about paying for prescriptions, this episode highlights why your voice is essential in shaping solutions.
This effort is led by over 80 patient organizations and groups in the USA working together. Any diagnosis, any medication, it’s not autoimmune arthritis or autoinflammatory arthritis disease only.
Episode Highlights:
- Why affordability isn’t just about price, but also insurance design and access.
- What new survey results reveal about skipped doses, Medicare challenges, and reliance on financial assistance.
- Why including diverse patient voices is critical to building real solutions.
- How you can participate in the Patient Experience survey and join ongoing efforts to improve prescription drug affordability.
Participate in Patient Experience Survey here: https://bit.ly/PatientWhy
Links & Resources* Patient Lead Survey Results: https://eachpic.org/each-pic-releases-results-from-patient-led-survey-on-drug-affordability/ * Patient Experience Project and Link to the 10 Minute Survey: https://eachpic.org/patient-experience-project/ * PIC Voices: https://eachpic.org/pic-voices/ * Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org * Donate to Support the Show:www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co Hosts:
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @tiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
Vanessa Lathan is the Grassroots Advocacy Manager at AiArthritis and a consultant with the Patient Inclusion Council, where she leads efforts in diversity, equity, inclusion, and accessibility. Living with Undifferentiated Connective Tissue Disease, she is passionate about advancing racial health equity and disability rights, with a focus on improving care for Black women with invisible illnesses.
CAR-T Therapy is one of the most talked about advances in autoimmune research today, offering new hope for people living with AiArthritis diseases such as lupus, myositis, scleroderma, and Sjögren’s. In this episode, co-hosts Leila P.L. Valete, AiArthritis Health Education Manager, and Tiffany Westrich-Robertson, CEO and Original Founder of AiArthritis, explain what CAR-T is, how it works, and why it matters.
They walk through the treatment process step by step from collecting a person’s own immune cells, to reprogramming them in a lab and reintroducing them so the immune system can reset. This episode highlights promising results from early clinical trials including patients reaching remission and stopping other medications, while also addressing safety, access, and what is still unknown.
Whether you’re a patient, caregiver, researcher, or advocate, this episode explains what’s happening in CAR-T research and why it could represent a major shift in how AiArthritis diseases are treated.
Donate to Support the Show:www.aiarthritis.org/donate
Episode Highlights:
- What CAR-T Therapy is and how it works with AiArthritis diseases
- Why B cells are an important target in conditions like lupus and Sjögren’s
- Early results from clinical trials showing remission and organ improvement
- Safety considerations for patients in CAR-T studies
- Who may qualify now through trials, and what wider access could look like in the future
- How to stay informed on CAR-T research
Links & Resources:* Sign up for Go With Us! to Conferences program: www.aiarthritis.org/gowithus * Sign up for the Research Database: www.aiarthritis.org/database * Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co Hosts:
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
Connect with Leila:
Instagram: @lupus.lifestyle.lei
LinkedIn: https://www.linkedin.com/in/leila-pl-valete/
Facebook: @leilaaiarthritis
TikTok: @lupus.lifestyle.lei
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @tiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
In this follow-up episode, AiArthritis Health Education Manager Leila reflects on her personal pregnancy journey with lupus and Sjögren’s, while sharing key fertility and pregnancy insights from EULAR 2024.
She highlights emerging research and clinical recommendations on preconception planning, navigating medication decisions, and coordinating care between rheumatologists and high-risk OB-GYNs. Leila also offers practical tips based on her own experience from managing disease activity during pregnancy to advocating for your needs throughout the journey.
Join us on this episode if you’re actively planning for a family or simply want to understand how AiArthritis diseases can impact fertility and pregnancy.
Donate to Support the Show:www.aiarthritis.org/donate
Episode Highlights:
- Hear EULAR 2024 updates on fertility and pregnancy
- Learn what current guidelines say about safe medications for conception, pregnancy, and breastfeeding
- Understand the importance of low disease activity before and during pregnancy
- Hear Leila’s firsthand story of managing pregnancy with lupus and Sjögren’s
- Discover why early conversations with rheumatologists matter even if you’re not trying to conceive yet
- Explore the emotional and mental health side of pregnancy with chronic illness
- Get tips for building a supportive care team including maternal-fetal medicine specialists
Links & Resources* Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co Hosts:
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
AiArthritis is bringing you along for the journey as part of our Go With Us! Program, this time straight from the EULAR 2025 in Barcelona. In this episode, we’re spotlighting key research updates that matter most to patients living with AiArthritis diseases.
Our 'co hosts, Leila, Tiffany, Deb, and Eileen, are on the ground at EULAR, reporting back with fresh insights into patient-prioritized topics. You’ll hear how nutrition and microbiome research is shifting how we understand inflammation and autoimmune risk, why CAR T-cell therapy is creating buzz as a potential path to long-term remission, and what new research is saying about enthesitis in spondyloarthritis. Plus, learn more about the debate on the pros and cons of cannabis use for chronic pain management. This episode brings the conference experience straight to you with a focus on what it all means for real patients.
Donate to Support the Show:www.aiarthritis.org/donate
Episode Highlights:
- Insights from new research linking diet and gut health to autoimmune activity
- What CAR T-cell therapy could mean for the future of treatment
- A deeper look at enthesitis and how it’s being understood in spondyloarthritis
- How the medical community is reevaluating the use of cannabis in treatment plans.
Links & Resources* Go With Us! To EULAR 2025 YouTube Playlist: https://www.youtube.com/playlist?list=PLZW5ZyvNnYl3wsrI7usV495JH2OMfUdzN * Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co Hosts:
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints, Healthline, Chronic Eileen or can be found being a mom to her son Jacob.
Tiffany Westrich-Robertson is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Deb Constien is a medically retired Registered Dietitian and a Representative for AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.
Managing AiArthritis diseases are challenging but what if the entire model of care could change for the better? In this episode, Leila is joined by Dr. Jin Lee, co-founder and CEO of IMIDeology, a virtual and in-person clinic dedicated to diagnosing and treating immune-mediated inflammatory diseases (IMIDs) like spondyloarthritis, lupus, Crohn’s, and more.
Dr. Lee shares her journey from caregiver to changemaker and how IMIDeology is improving access, diagnosis, and treatment through an innovative, patient-first approach. The conversation also explores chronic pain education and why it’s so often misunderstood in IMIDs. Leila and Dr. Jin Lee share how to describe IMIDs more effectively and how patients can better advocate for pain support.
Plus, hear about IMIDeology’s pain management study and upcoming Autoimmune Patient Summit, designed to educate and empower the IMID community. If you’ve ever felt unheard or overlooked in your care journey, this episode offers fresh ideas, support, and a hopeful vision for the future of IMID treatment.
Donate to Support the Show:www.aiarthritis.org/donate
Episode Highlights:
- Learn how Dr. Jin Lee’s caregiver journey inspired the founding of IMIDeology.
- Understand what IMIDs are and why a multidisciplinary approach to care matters.
- Discover how virtual rheumatology clinics are changing access to diagnosis and treatment.
- Get practical advice on describing and managing chronic pain with your care team.
- Hear how you can participate in IMIDeology’s pain management study and upcoming Autoimmune Patient Summit.
Links & Resources* IMIDeology Website: https://www.imideology.com/ * Autoimmune Patient Summit: https://www.imideology.com/event-details/autoimmune-patient-summit * Join the Join Management Study: https://www.imideology.com/pilotstudy * Go With Us! To EULAR June 11-14 https://www.aiarthritis.org/conferences * Mystery Patient Guide: www.aiarthritis.org/undiagnosed * Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Cohost:
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
Connect with Leila:
Tiktok: @Lupuslifestyle.lei
Dr. Jin Lee is the Co-Founder and CEO of IMIDeology, virtual and in-person clinical network dedicated to supporting patients with chronic inflammation and autoimmune conditions such as IBD & lupus. With firsthand experience navigating the healthcare system as both a patient and caregiver, Dr. Lee is a passionate advocate for those living with immune-mediated inflammatory diseases (IMIDs). Dr. Lee has worked across the healthcare ecosystem in pharma, payer, and provider innovation, leading efforts in product development and commercialization. She also invests in the future of healthcare as a limited partner in three angel funds and serves on multiple startup and nonprofit boards, including past roles with the American Heart Association and the Healthcare Businesswomen’s Association. Dr. Lee is a Presidential Leadership Scholar, selected by four U.S. Presidential Centers, and was honored as one of the “100 most impactful women and allies shaping the future of biopharma, healthcare, and life sciences” by Biopharma Leaders of Color (BLOC).
Connect with Dr. Jin Lee:
Website(s): https://www.imideology.com/
- Facebook: https://www.facebook.com/IMIDeology
- Instagram: https://www.instagram.com/imideology1/
- LinkedIn: https://www.linkedin.com/company/imideology/
- YouTube: https://www.youtube.com/@imideology
- TikTok: https://www.tiktok.com/@imideology
AiArthritis diseases can be difficult enough to manage—but what happens when the symptoms don’t fit neatly into a diagnosis? In this episode, AiArthritis Health Education Manager Leila shares her perspective on the “mystery patient” experience, those living with serious, ongoing symptoms but still searching for answers.
Leila revisits key conversations from past episodes and introduces new resources, including our updated Mystery Patient Guide and the AUTO + Inflammatory Arthritis = X or YZ Project, which explores lesser-known or overlapping conditions like IgG4-related disease (IgG4-RD). She also shares the powerful story of a real mystery patient navigating the challenges of being undiagnosed for years.
If you or someone you love is living in diagnostic limbo, this episode offers validation, education, and practical tools to help guide your journey and highlights why improving awareness and research for this often-overlooked community is so essential.
Donate to Support the Show:www.aiarthritis.org/donate
Episode Highlights:
- Learn why some patients remain undiagnosed for years and what defines a “mystery patient.”
- Hear a real patient story that illustrates the challenges of navigating misdiagnosis.
- Understand how overlapping conditions like IgG4-RD complicate the diagnostic process.
- Discover key takeaways from the IgG4-RD Educational Summit, including treatment updates.
- Explore tools and resources available to support those still searching for answers.
Links & Resources* Mystery Patient Guide: www.aiarthritis.org/undiagnosed * Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp * IgG4-RD Resource :https://igg4ward.org/education-and-resources * Start Your Team for World AiArthritis Day: givebutter.com/aiarthritisday25 * World AiArthritis Day Information: www.aiarthritis.org/aiarthritisday
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Cohost:
Leila P.L. Valete is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus & Sjögren's. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @Lupus.Lifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others.
Connect with Leila:
Tiktok: @Lupus.lifestyle.lei
Autoimmune diseases like lupus and Sjogren’s disease are often associated with joint pain, fatigue, and organ involvement, but their impact on the nervous system is less commonly discussed. In this episode, Dr. Julius Birnbaum, a leading expert in neuro-rheumatology, joins us to explore the neurological manifestations of these conditions and what patients need to know.
From brain fog and memory issues to more severe complications like neuropathy, Dr. Birnbaum explains how these diseases affect the brain and nerves, why symptoms can be challenging to diagnose, and the latest advancements in treatment.
If you or a loved one live with lupus or Sjogren’s and have experienced unexplained neurological symptoms, this episode provides clarity, validation, and expert insights on what to look for and how to advocate for proper care.
Donate to Support the Show:www.aiarthritis.org/donate
Episode Highlights:
- Understanding the link between autoimmune diseases and the nervous system.
- Common neurological symptoms in lupus and Sjogren’s
- Why neurological symptoms are often overlooked or misdiagnosed.
- The latest research and treatment approaches for managing neurological complications.
- How to advocate for proper testing and care if you suspect neurological involvement.
Links & Resources* Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Cohost & Guest:
Dr. Julius Birnbaum is a distinguished rheumatologist with 20 years of experience and the only physician in the U.S. trained as an internist, neurologist, and rheumatologist. He completed his medical training at Columbia, Mount Sinai, Jacobi Medical Center, and Johns Hopkins, where he later pioneered a Neuro-Rheumatology Clinic to treat complex neurological complications of autoimmune diseases. Dr. Birnbaum has authored over 30 publications in prestigious medical journals and has been a featured speaker at national and international rheumatology conferences. Currently, he serves as Associate Professor of Rheumatology at the University of Pittsburgh Medical Center (UPMC) and Division Chief of Rheumatology at UPMC Mercy Hospital, where he continues to teach and mentor medical trainees. Outside of medicine, he enjoys sports like basketball, swimming, and running, which he shares with his wife and three children in Wexford, Pennsylvania.
Connect with Dr. Birnbaum:
Book: Living Well With Autoimmune Diseases: A Rheumatologist’s Guide to Taking Charge of Your Health - https://bit.ly/41XrpZR
Website: https://www.juliusbirnbaum.com/
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
Connect with Leila:
Tiktok: @Lupuslifestyle.lei
Parenting is challenging, but adding a chronic illness like rheumatoid arthritis brings unique obstacles. In this episode, co-host Eileen shares her journey of raising a child while managing RA, from coping with fatigue and pain to adjusting expectations.
She’s joined by her 12-year-old son, Jacob, who offers his perspective on growing up with a parent who has a chronic illness. Together, they discuss the struggles, unexpected lessons, and ways they support each other. Whether you're a parent navigating chronic illness or looking to understand its impact on families, this episode offers insight, advice, and encouragement.
Donate to Support the Show:www.aiarthritis.org/donate
Episode Highlights:
- Eileen shares her journey of parenting with RA, from early diagnosis to raising a preteen.
- The biggest struggles of parenting with chronic illness, including fatigue, guilt, and daily challenges.
- Jacob’s perspective on having a parent with RA and how it has shaped his life.
- The unexpected positives—how chronic illness has taught Jacob responsibility, independence, and empathy.
- Practical tips for parents with chronic illness, including self-care, communication, and asking for help.
Links & Resources* Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp
Connect with our Cohost:
Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints, Healthline, Chronic Eileen or can be found being a mom to her son Jacob.
Connect with Eileen:
Twitter: @ChronicEileen
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
What does it mean to be diagnosed with undifferentiated disease (UD)? In this episode, Tiffany Westrich-Robertson, AiArthritis CEO and founder, unpacks this complex diagnosis, sharing her personal journey from being a mystery patient to receiving a UCTD diagnosis. Tiffany explains how undifferentiated disease fits into the autoimmune.autoinflammatory spectrum, its implications for treatment, and why early intervention is critical.
Join us on this episode to explore what undifferentiated disease means, how early treatment can improve outcomes, and the latest research shaping diagnosis and care.
- Tell us YOUR undifferentiated disease story: https://bit.ly/3EfuWsT
- Check out our social media channels for posts about UD and weigh in
- Sign up for our AiArthritis Research Database, where we are studying UD at www.aiarthritis.org/database
Donate to Support the Show:www.aiarthritis.org/donate
Episode Highlights:
- Learn more about undifferentiated disease, including why it’s so important to know it can be the final diagnosis OR it could branch off to a “full blown” autoimmune or autoinflammatory disease, including one of ours that include inflammatory arthritis as a major clinical component. Either way, UD IS a real diagnosis.
- Explore the connection between undiagnosed “mystery patients”, an undifferentiated diagnosis, and how UCTD and other undifferentiated conditions fit into the spectrum of autoimmune and autoinflammatory diseases.
- Understand the importance of early intervention and how it can lead to remission and improved outcomes.
- Discover the role of biomarkers, precision medicine, and risk stratification in guiding treatment plans.
- Hear how AiArthritis is advancing research and offering resources to help patients navigate undifferentiated disease.
Links & Resources* Explore more from the “Go With Us to Conferences” program: www.aiarthritis.org/conferences * Early Symptoms of AiArthritis Study: https://www.aiarthritis.org/Early-Symptoms-Study * Go With Us to EULAR 2023 - Ig-G4, UCTD, RMDs and the Brain: https://www.youtube.com/watch?v=1w2Ouk-ItFk&t=264s * Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Join us for a special episode where we reflect on the top three most-listened episodes of 2024! Leila revisits these engaging conversations that resonated deeply with the AiArthritis community, covering mental health, navigating the patient journey, and reproductive health. These episodes highlight the challenges and triumphs of living with autoimmune diseases, offering practical strategies and heartfelt support. Whether you're a patient, caregiver, or ally, this roundup of impactful discussions provides valuable insights and inspiration to carry into 2025.
Donate to Support the Show:www.aiarthritis.org/donate
Episode Highlights:
Mental Health and Autoimmune Diseases:
- Explore how autoimmune diseases impact mental health for patients and caregivers, including strategies to manage stress, anxiety, and emotional challenges.
- Discover practical self-care techniques, mindfulness practices, and tools to promote emotional resilience.
Navigating the Patient Journey:
- Learn about the Patient Journey resource, designed to help individuals navigate every stage of their autoimmune disease experience, from diagnosis to remission.
- Find guidance on managing symptoms, communicating with healthcare providers, and accessing support networks.
Reproductive Health and Autoimmune Diseases:
- Gain insights into how autoimmune diseases can affect reproductive health, including safe birth control options and the impact of medications on fertility.
- Learn about resources and expert advice for planning pregnancies and managing reproductive challenges.
Links & Resources* Explore more from the “Go With Us to Conferences” program: www.aiarthritis.org/conferences * Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
In this episode, our co-hosts share key takeaways and important updates from the American College of Rheumatology (ACR) Convergence 2024. Leila, Tiffany, Cristina, and Deb discuss cutting-edge therapies, chronic pain management strategies, and groundbreaking research on conditions like lupus, Sjögren’s, and psoriatic arthritis. Join us for an insightful and empowering conversation that highlights the strides being made in the AiArthritis community.
Donate to Support the Show: https://www.aiarthritis.org/donate
Episode Highlights Discover how innovative CAR-T treatments are paving the way for remission breakthroughs in autoimmune diseases. * Learn surprising insights about how obesity influences inflammation and disease progression. * Get practical strategies from Stanford’s renowned self-management program to take control of your pain. * Explore cutting-edge imaging techniques and therapies that offer new hope for early diagnosis and better care. * Find out how menopause impacts autoimmune patients and the tools available to navigate this life stage.*
Links & Resources* Explore more from the “Go With Us to Conferences” program: www.aiarthritis.org/conferences * Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
In this episode, co-hosts Leila and Brittany dive into the power of patient voices in transforming the healthcare experience for the AiArthritis community. They bring empathy and validation to stories submitted by listeners, highlighting real struggles with insurance, pharmacy issues, and the emotional toll of chronic illness. Brittany also shares key takeaways from the recent Autoimmune Community Summit, covering practical tips for self-management, understanding the influence of environmental factors, and the importance of owning and sharing your story to drive change.
This episode is packed with relatable stories, actionable advice, and encouragement for anyone navigating autoimmune challenges. Tune in for new ways to elevate your voice and join a supportive community that understands.
Episode Highlights* Leila and Brittany discuss the impact of elevating patient voices in the AiArthritis community. * Patient-submitted stories reveal real challenges with insurance, pharmacy issues, and living with chronic illness. * Key insights from the Autoimmune Community Summit highlight the importance of self-management and environmental factors. * Tips on using personal stories in healthcare advocacy help patients drive meaningful change. * AiArthritis’s "WTHellth" project aims to address systemic barriers in healthcare. * The hosts share tools like communication aids and advocacy programs for patient empowerment.
Links & Resources* Submit Your Story or Rant: aiarthritis.org/rant * Patient Journey Resources: aiarthritis.org/patientjourney * Advocacy Program Information: aiarthritis.org/advocacy * Communication Aid for JIA Patients: aiarthritis.org/JIAcommunication * Follow Our Conference Coverage: aiarthritis.org/conferences * Read Our Blog for Patient Perspectives: aiarthritis.org/blog
Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp
Donate to Support the Show: https://www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co-Hosts:
- Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
Connect with Leila:
- Tiktok: @Lupuslifestyle.lei
- Brittany Murray is a dedicated AiArthritis volunteer who has been living with Psoriatic disease for over 30 years. She loves to share her story to help others with AiArthritis diseases and to assist with advocacy and education work around hot topics like prior authorization and step therapy. She also started a blog and social community called ChronicDiseaseDiary to build a community of empowerment, love and support for those with chronic diseases or caretakers of those with chronic diseases.
Connect with Brittany:
- ChronicDiseaseDiary
In this episode of AiArthritis Voices 360, co-hosts Leila and Eileen discuss a project focused on organizing essential resources for patients navigating the AiArthritis journey, from undiagnosed symptoms to remission. They share their personal experiences living with lupus and rheumatoid arthritis, exploring the complexities of managing chronic illness and the challenges of early diagnosis. Tune in to learn about AiArthritis’s new online social community and how you can contribute your story and help develop more resources for patients. This episode is perfect for patients and caregivers seeking guidance and support on their health journey.
Share your ideas on resources that we can add to the patient journey by emailing us at info@aiarthritis.org, submit your patient story on each different section of the patient journey and join our online social community!
Episode Highlights* A breakdown of the six stages of the patient journey and how resources are organized. * Personal stories from Leila and Eileen on living with AiArthritis diseases. * The importance of early diagnosis and how it affects long-term outcomes. * Strategies for caregiver support and understanding comorbidities. * Learn how to contribute your story or join the new AiArthritis social community.
Resources & Links:
- Check out our patient resources: www.aiarthritis.org/patientjourney
Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp
Donate to Support the Show: https://www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co-Hosts:
- Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
Connect with Leila:
- Tiktok: @Lupuslifestyle.lei
- Eileen is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints, Healthline, Chronic Eileen or can be found being a mom to her son Jacob.
Connect with Eileen:
- ChronicEileen
In this episode, our co-hosts bring you an exclusive look into the AiArthritis “Go With Us!” to Conferences program. We dive deep into EULAR 2024, the European Rheumatology Research Conference, where patients and co-hosts reveal groundbreaking advancements in AiArthritis research. Discover the latest on CAR-T therapy, innovative pain management tailored for patients, the role of opioids in addressing pain and fatigue, and practical strategies for battling brain fog. Gain valuable insights and practical advice from fellow patients and experts. Don't miss this episode packed with cutting-edge information!
If you're eager for more, join us for our next journey to the ACR conference in November. Visit AiArthritis.org/conferences for more details and to sign up!
Episode Highlights* Overview of the Go With Us to Conferences program, which allows patients to virtually join and learn from major rheumatology conferences like EULAR and ACR. * Tiffany, CEO and person living with non-radiographic axial spondyloarthritis, discusses CAR-T therapy and its potential to achieve remission in autoimmune diseases, particularly in lupus patients. * Deb, AiArthritis volunteer and person living with rheumatoid arthritis, presents on patient-tailored pain management, emphasizing multi-dimensional approaches to address different types of pain. * Becky, AiArthritis volunteer and person living with Sjogren’s Disease, explores the relationship between fatigue, pain, and opioids, highlighting the challenges of treating these symptoms in autoimmune patients. * Leila, AiArthritis Health Education Manager and person living with Lupus Nephritis and Sjogren’s Disease, covers cognitive dysfunction (brain fog), offering strategies for managing this common but under-discussed symptom in autoimmune diseases.
Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp
Donate to Support the Show: https://www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Resources & Links:
- Join the Go With Us Program for ACR in November: https://aiarthritis.org/conferences
Connect with our Co-Hosts:
- Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
- Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.
- Deb Constien is a medically retired Registered Dietitian and a Representative for AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.
- Becky Hosey is an AiArthritis volunteer, a healthcare professional, and also a person living with Sjogren's disease.
Welcome to a milestone episode of AiArthritis Voices 360 Talk Show! Join us as we celebrate our 100th episode by revisiting three of our most impactful discussions that have resonated deeply with our listeners.
Episode 73: "Arthritis" Awareness - It’s Complicated! Dive into the complexities of arthritis awareness with our co-hosts as they share personal stories of delayed diagnosis and the profound impact it had on their lives. Discover why education and awareness for AiArthritis diseases are crucial in transforming patient journeys.
Episode 80/81: RheumyRounds: The Good, The Bad, and The Ugly - Improving Office Visit Communication In this dynamic episode, our co-hosts are joined by Dr. Al Kim, a renowned rheumatologist, to explore the intricacies of patient-doctor communication and how it can be improved. Learn about the key elements that can enhance patient care, streamline diagnosis, and ensure appropriate treatment through effective communication strategies.
Episode 90: Why Won't They Diagnose Me? Uncover the mystery patient stories shared by our co-hosts, highlighting the struggles of obtaining a proper diagnosis. This episode emphasizes the importance of access to information and relatable experiences in navigating the often complex diagnostic journey.
Join us in this special 100th episode as we reflect on these powerful stories and discussions. Gain valuable insights into the significance of education, awareness, and research in the AiArthritis community. Don't miss out on this celebratory highlight reel that underscores the essential aspects of improving lives through informed conversations. Tune in and be part of the journey!
And if you want to help this talk show expand to reach more people in the AiArthritis community, please donate to support us here : https://www.aiarthritis.org/donate
Episode Highlights* We revisit 3 of the most popular episode of the talk show to highlight important topics for the AiArthritis community * Cohosts share their stories of delayed diagnosis and the importance of education and awareness to receive proper treatment earlier * Dr. Al Kim shares about how patient-doctor communication can be improved from both the physician and patient sides. * Cohosts share stories of being a mystery patients to shed light on the diagnosis journey and help others navigate its complexities * Learn how to be a part of the show and share your story!
Resources & Links:
Share Your Rant Story: https://www.aiarthritis.org/rant
Submit your Doctor Visit Story: https://www.aiarthritis.org/gbu
Find Juvenile Communication Information Aids: https://www.aiarthritis.org/jiacommunication
Submit Your Mystery Patient Story: https://forms.gle/mnM5FeS6LsLvFSiY7
Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp
Donate to Support the Show: https://www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
In this episode, co-hosts Charis Hill and Jae Walker delve into life after COVID-19, focusing on the unique challenges faced by individuals with AiArthritis diseases. They discuss the importance of continued precautions in healthcare settings, share their own personal experiences, and offer practical advice for staying safe. Tune in for an insightful conversation on navigating the ongoing reality of COVID-19 while managing chronic illnesses.
Episode Highlights* Understanding the ongoing complexities of COVID-19 for immunocompromised individuals and those on immune-suppressing medications. * Jae and Charis share their journey living with chronic disease, their experience with COVID-19 and managing COVID prevention now. * Discussion on recent public health recommendations and the importance of wearing masks, social distancing, and testing. * Addressing the need for safe healthcare environments and advocating for better protections for high-risk patients. * Encouraging listeners to resume mask-wearing, improve air quality, and initiate conversations with healthcare providers about safety measures.
Join us for this episode to gain valuable insights and actionable steps to protect yourself and others in the AiArthritis community.
Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp
Donate to Support the Show: https://www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Resources & Links:
- Jae’s blog - When I Had Co-Vid: https://creakyjoints.org/living-with-arthritis/coronavirus/patient-perspectives/when-i-had-covid/
- COVID Keeps Rising in Bay Area Wastewater. What to Know, From New Variants to Symptoms: https://www.kqed.org/news/11987343/covid-bay-area-wastewater-variant-symptoms-isolation-guidance
- CDC “People with certain medical conditions” page: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html
- CDC page “How to protect yourself and others” https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/prevention.html
- People’s CDC resource page for requesting COVID healthcare reasonable accommodations: https://peoplescdc.org/2023/05/09/ada-rights-workshop/
Connect with our Co-Hosts:
Charis Hill, who uses they/them pronouns, is a disability activist, writer, speaker, and model living with conditions such as Axial Spondyloarthritis and Ehlers Danlos Syndrome. They use narrative engagement to advance social justice for multiply-marginalized disabled people and have been featured internationally in media and the documentary "Becoming Incurable." Charis has written for HealthCentral, Healthline, and Business Insider, and has been recognized by the Arthritis Foundation and Spondylitis Association of America for their advocacy work.
Connect with Charis:
- Twitter: @beingcharisblog
- Tikok : @beingcharisblog
- Facebook: @beingcharis
Jae Walker, who uses they/them pronouns, is a blogger, writer and artists living with conditions such as rheumatoid arthritis, Sjogren's, and small Fiber Polyneuropathy Hypothyroidism. They are an advocate and artist sharing artwork around chronic fatigue, chronic illness, and pain from the patient perspective.
Connect with Jae:
- Threads: @JaelehWalker
- Instagram : @UnexpectedAdvocate
- Facebook: @UnexpectedAdvocate
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
In this episode, our co-hosts Estela and Juana delve deep into the often overlooked but critically important topic of mental health for those living with AiArthritis diseases. They discuss the significant impact these health challenges have on both the body and the mind, supported by eye-opening statistics that 52% of patients with autoimmune diseases are diagnosed with a mental health condition within a year. Tune in to hear Estela and Juana break down the science behind these connections, share their personal experiences and provide practical strategies to manage mental health while navigating life with AiArthritis diseases.
Episode Highlights:
- Defining AiArthritis diseases and their comprehensive impact on mental health
- Discussion on the challenges of living with unpredictable flares
- Juana's personal experience with rheumatoid arthritis and lupus and their impact on her mental health
- Importance of self-care strategies such as rest, nutrition, exercise, and mindfulness techniques.
- Benefits of therapy, counseling, and connecting with social support groups.
Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp
Donate to Support the Show: https://www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co-Hosts:
Estela is the President and co-founder of Looms for Lupus, a nonprofit providing advocacy and support for those affected by Lupus, Fibromyalgia, and mental health issues. With over 30 years in healthcare, she currently supports private practices with electronic medical records and office workflows. Estela co-founded Looms for Lupus in 2011 after her sister's near-fatal battle with Lupus and Immune Thrombocytopenia, channeling her passion into empowering and supporting the community. She collaborates with initiatives to increase diversity in clinical trials and advocates both locally and nationally.
Connect with Estela:
Facebook:@estelamata @looms4lupus
Instagram: @estela_mata @looms4lupus
Twitter: @estelamata @looms4lupus
LinkedIn: @Estela Mata-Carcamo
Website: www.looms4lupus.org
Juana is the co-founder of Looms for Lupus, a nonprofit supporting Lupus survivors, their families, and caregivers. Diagnosed with Rheumatoid Arthritis and Lupus in 2009, she facilitates bilingual support groups and advocates nationally for Lupus, Fibromyalgia, and Mental Health. Juana has served as a patient advisor, consumer advocate, and is a member of several advisory councils and task forces. Professionally, she is a Children's Social Worker for the Los Angeles Department of Children and Family Services.
Connect with Juana:
Facebook: Juana Mata
Instagram: @juany_mata
Twitter: @Matajuanamata
LinkedIn: Juana Mata
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
In this episode, Leila shares the exciting plans for the upcoming World AiArthritis Day on May 20th with AiArthritis. Delve into why raising awareness for AiArthritis diseases is crucial and discover ways you can actively participate on the global initiative. Through flashback segments, our co-hosts dissect the layers surrounding the term "arthritis," unraveling misunderstandings, family judgments, and the complexities of distinguishing AiArthritis from other conditions. Tune in for insightful discussions on diagnosis delays, access to treatments, fostering better health outcomes and how you can be a part of World AiArthritis Day!
Episode Highlights:
- AiArthritis plans for World AiArthritis Day on May 20th
- How listeners can actively engage in the global initiative
- Common Misunderstandings of Arthritis
- Significance of raising awareness for AiArthritis diseases and the complexities of distinguishing AiArthritis from other conditions.
- Patient insights into diagnosis delays and the effects on treatment plans.
Interested in getting involved?
https://www.aiarthritis.org/aiarthritisday
https://twitter.com/aiarthritisday
https://www.instagram.com/worldaiarthritisday
https://www.facebook.com/AiArthritisDay
Fundraiser: https://givebutter.com/AiArthritisWAiAD24
Race-a-Thon: https://www.facebook.com/events/1511735302713694/
Donate to Support the Show: https://www.aiarthritis.org/donate
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co-Hosts:
- Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @Lupus.Lifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.
Connect with Leila:
Instagram: @lupus.lifestyle.lei
TikTok: @lupus.lifestyle.lei
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
In this episode, co-hosts Leila, Estela, and Kerry delve into the crucial topic of social wellness amidst living with AiArthritis disease. They explore the essence of social wellness, its significance and sharing personal insights on navigating social lives while managing health challenges. Join our co-hosts as they discuss both the supportive and challenging dynamics of maintaining an active social life with an AiArthritis disease and how online communities can positively impact social wellness. Drawing from community questions and experiences, they offer invaluable advice, practical tips, and thoughtful modifications to foster social fulfillment despite potential barriers. Tune in to learn how to prioritize social wellness in the face of chronic illness.
Episode Highlights:
- Definition and exploration of social wellness, emphasizing its importance in maintaining overall well-being.
- How social wellness can negatively and positively affect your AiArthritis disease
- Discussion on the cohosts' personal experiences with their social lives and how they navigate social interactions while managing their health conditions.
- Insights into the reactions of family and friends to the cohosts' social needs, highlighting both supportive and challenging aspects.
- How you can utilize technology to connect to your community to positively impact your social life.
- Answering community questions and comments regarding social wellness by sharing practical advice, tips, and modifications for fostering social fulfillment despite potential barriers.
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co-Hosts:
- Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @Lupus.Lifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.
Connect with Leila:
Instagram: @lupus.lifestyle.lei
TikTok: @lupus.lifestyle.lei
- Kerry is a writer and patient advocate living with fibromyalgia, rheumatoid arthritis, sarcoidosis, Sjögren's syndrome, and small fiber neuropathy/dysautonomia (to name a few). As these conditions took their toll and she became less physically able, Kerry became empowered to use her voice to advocate for herself and for patients like her. She is currently working on "Kaleidoscope," a collection of rare disease stories.
Connect with Kerry:
Instagram: @buttahflyk
Twitter: @buttahflyk
Facebook: @floatlikeabuttahfly
Website: http://bit.ly/floatlikeabuttahfly
- Estela Mata is the President and co-founder of Looms for Lupus, a non-profit organization that provides Lupus, Fibromyalgia and Mental Health Awareness, advocacy, and support to those living with these conditions, their loved ones, and caregivers.
Connect with Estela:
Instagram: @estela_mata @looms4lupus
LinkedIn: @Estela Mata-Carcamo
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Curious about how volunteering with AiArthritis could transform your life and the lives of others?
In the latest episode of AiArthritis Voices 360 Talk Show as co-hosts Leila, Michael, Jenni, Deeanne, Patrice, and Deb share heartfelt stories of their journey into volunteering with AiArthritis. From personal experiences to the profound impact AiArthritis has had on their lives as patients, they delve into the transformative power of community support. Discover why volunteering is vital and how the AiArthritis community has become a lifeline, offering understanding, empathy, and empowerment.
Join the conversation and learn how you too can make a difference by getting involved with AiArthritis. Find out more here: https://www.aiarthritis.org/volunteer
Episode Highlights:
- Dive into the intriguing stories behind our volunteers' journey to AiArthritis.
- Hear how AiArthritis has reshaped lives and inspired resilience in our volunteers.
- Explore why volunteering is the key to driving progress for the AiArthritis organization and community.
- Discover the profound support and empowerment found within the AiArthritis community.
- Learn how you can make a difference and get involved with AiArthritis today.
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Connect with our Co-Hosts:
- Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @Lupus.Lifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.
Connect with Leila:
Instagram: @lupus.lifestyle.lei
TikTok: @lupus.lifestyle.lei
- Jen
Connect with Jen:
Podcast : My Spoonie Sisters
Instagram: @gracejully_jen
@my_spoonie_sisters
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
This is an AiArthritis Voices 360 REWIND, where we are bringing back the first RheumyRound episode from 2020 where we opened the conversation on improving doctor office visits! Also note - you will hear the acronym IFAA, which we used prior to using AiArthritis.
Join us as our co-hosts, Tiffany and Kelly, and guests, Dr. Kim and Jerik Leung, explore the important dynamic between patients and doctors in healthcare communication. Through insightful dialogue and shared experiences from both the patient and physician perspective, we uncover strategies to enhance mutual understanding, empowering patients to articulate their needs and doctors to listen attentively. Together, we champion the importance of empathy and effective communication in achieving accurate diagnoses and personalized treatment plans for those navigating AiArthritis diseases.
Episode Highlights:
- Do patients and rheumatologists' goals and expectations during an office visit align?
- The significance of effective patient-doctor communication in managing AiArthritis diseases
- Strategies for patients to articulate their concerns and needs during office visits
- Techniques for doctors to actively listen and engage with patients to improve diagnostic accuracy
- Shared experiences and insights from both patients and doctors on navigating communication challenges
- How doctors can integrate social determinants of a patient's health in the clinical setting
- Related Episodes:
- RheumyRounds: PART ONE The Good, The Bad, and The Ugly - Improving Office Visit Communication: https://www.aiarthritis.org/talkshow-ep80
- RheumyRounds: PART TWO The Good, The Bad, & The Ugly - Improving Office Visit Communication : https://www.aiarthritis.org/talkshow-ep81
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
Meet Our Host:
- Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @tiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
- Kelly Conway is a speech-language pathologist, author/blogger, and a patient advocate. She has been living with autoimmune arthritis since age 14 but wasn’t formally diagnosed until age 32. That diagnosis has changed more than 5 times over the past 18 years. Through social media, she connected with fellow patients and cofounded the International Foundation for Autoimmune and Autoinflammatory arthritis. Kelly believes in the power of the patient voice and sharing our stories to raise awareness, education, and advocacy.
Connect with Kelly:
Blog: www.asmyjointsturn.com.
Meet our Guests:
- Dr. Kim is an Assistant Professor of Medicine and of Pathology & Immunology at Washington University School of Medicine. He also founded and directs the Washington University Lupus Clinic. Dr. Kim’s research group is focused on addressing the unmet needs of human systemic lupus erythematosus (SLE), including understanding and leveraging the biomarker potential of complement activation products, testing novel noninvasive imaging platforms such as photo acoustics to detect lupus nephritis, understanding the relationship between sleep quality and lupus activity, and restoring eroded social support in patients with SLE.
Connect with Dr. Al Kim
Instagram: @washulupusclinic
Twitter : @AlHKim
- Jerik Leung doctoral student and Woodruff Fellow in the Behavioral, Social, and Health Education Sciences department at Emory University. His current research interests involve characterizing pathways linking structural social determinants of health with individual health outcomes in chronic disease. He is specifically interested in how structural factors shape how people living with chronic disease manage their conditions, interact with their health care providers, access care, and engage with their communities. Jerik is currently working with faculty advisor Dr. Cam Escoffery to evaluate the implementation of several epilepsy self-management programs. For his dissertation research, he intends to focus on issues relevant to people living with lupus.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360! In this episode, Leila, the Health Education Manager at AiArthritis, delves into the impact of AiArthritis diseases on reproductive health, sharing insights from the RNS and ACR 2023 conferences. Leila delves into the myriad challenges individuals encounter, including delayed puberty, heightened disease activity during menstrual cycles, and the heightened risks associated with unplanned pregnancies. Navigating the intricate landscape of family planning within the AiArthritis community, we discuss the significance of birth control methods and the impact of medications on fertility.
Drawing from personal experience with lupus, Leila discusses preserving fertility, assisted reproductive technologies, and navigating family planning. Join us on this episode to learn more about reproductive health with AiArthritis diseases and hear Leila’s personal experience with family planning!
If you have questions or would like to share your own family planning story, please feel free to email Leila at Leila@AiArthritis.org.
Episode Highlights:
- Explore the latest research insights on how AiArthritis diseases affect reproduction from the RNS and ACR 2023 conferences.
- Join Leila on a personal journey, navigating reproductive health with Lupus.
- Uncover challenges in family planning, from medication impacts to the significance of birth control in AiArthritis.
- Learn about medication effects on fertility and preservation strategies for those with AiArthritis.
Resources & Links:
- https://mothertobaby.org/
- http://lupuspregnancy.org/
- https://www.mamasfacingforward.com/
- https://www.graceandable.com/pages/chilliredcompressionglove
- RNS Go With Us video about Lupus and Pregnancy: https://youtu.be/tgeIW0pxF8M?feature=shared
- ACR Go With Us video about Reproductive Health: https://youtu.be/rYGs1fevQWU?feature=shared
- Related Episodes:
- Ep 11: Oh Mama! Pregnancy Planning with a Chronic Illness : https://www.aiarthritis.org/talkshow-ep11
- Ep 51: Oh Mama! Physical and Emotional Support Postpartum : https://www.aiarthritis.org/talkshow-ep51
- Ep 89: Surgery with an AiArthritis Disease : https://www.aiarthritis.org/talkshow-ep89
Meet Our Host:
- Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.
Connect with Leila:
Instagram: @lupus.lifestyle.lei
LinkedIn: www.linkedin.com/in/leila-lagandaon
Facebook: @leilaaiarthritis
TikTok: @lupus.lifestyle.lei
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
This episode is a 360it revisiting the topics put on the table during Episode 88 : Biosimilars - Interchangeability & Switching 2023
Join us in this breakout 360it from Episode 88 Biosimilars : Interchangeability & Switching 2023 as we dissect the Inflation Reduction Act (IRA) and its potential fallout on patient access to diverse treatment plans. Tracing the historical trajectory of the IRA, we uncover its role in price negotiations and the concerning shift in investments away from critical drugs tailored for specific diseases. This reallocation poses a tangible threat to the availability and diversity of treatments, including for those living with AiArthritis diseases. As we dive into the landscape of healthcare policy, the discussion emphasizes the pressing need for IRA improvements to consider the long term well-being of patients. Without these crucial enhancements, we will have a future with not only fewer innovative treatments but potentially less treatment options available.
Join us in fighting for improvements to the IRA and patient involvement in treatment access.
Episode Highlights :
- The history of Medicare Part D and its positive impact on healthcare
- What is the Inflation Reduction Act
- Why the IRA price negotiations are important to understand and how it will affect your treatment access
- How healthcare R&D will be negatively impacted by the IRA price negotiations
- Consequences to Patients of Drug Price-Setting Policies for patients
- How can patients get involved in the IRA price negotiations
- How the IRA will disincentivize small molecule drugs and indications for treatment plans
Resources Mentioned In This Episode:
- AiArthritis Biosimilars Hotline: https://www.aiarthritis.org/biosimilars
- EMA - What Is A Biosimilar : https://www.ema.europa.eu/en/human-regulatory/overview/biosimilar-medicines-overview
- ASBM Statement on CMS drugs list announcement - https://safebiologics.org/medicare-price-negotiations-will-jeopardize-patient-access-to-new-medicines-result-in-worse-health-outcomes/
- ASBM webinar on IRA - https://safebiologics.org/july-26-webinar-on-ira-medicare-price-negotiations/
- An educational microsite for patients to learn more and read news articles - www.IRAPatientInfo.org
Meet Our Co-Hosts & Guests:
- Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @tiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
- Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colorectal Cancer Alliance and was longtime board member of the Alliance became CEO in January of 2008 and ran the CCA for nearly 5 years, before undertaking his next venture, the Global Colon Cancer Association (GCCA).In addition to his work in the colon cancer community, Spiegel is an active advocate for health care policies both in the US and now worldwide. He is a co-founder and currently serves on the steering committee of the Alliance for Safe Biologic Medicines (ASBM). He is on the Board of Directors, and in December 2014 was elected to Chair, of the Digestive Disease National Coalition (DDNC),a founding member of the Coalition to Increase Clinical Trial Participation and in May of 2016 he began a three year term as a member of the Board of Directors of the International Alliance of Patient Organizations (IAPO) where he chaired the fundraising committee. Spiegel has won multiple awards for his work in patient advocacy.
- Michael Reilly, Executive Director of Alliance for Safe Biologic Medicines, has served as the executive director of ASBM since its inception in 2010. He has more than a decade of experience in the federal government developing and implementing healthcare policy. Mr. Reilly served as the associate deputy secretary at the U.S. Department of Health and Human Services (HHS) from 2005-2008 responsible for policy development and implementation, as well as regulatory oversight for issues involving CMS and the FDA. In addition to serving as the associate deputy secretary, Mr. Reilly served as a senior advisor to the assistant secretary for public affairs and the assistant secretary for planning and evaluation at HHS from 2002-2005. Mr. Reilly has been quoted in a series of FDA publications and co-authored many articles on biosimilars for the Generics and Biosimilars Initiative Journal. He has also presented to health regulators worldwide, including the Australian TGA, Health Canada and the World Health Organization (WHO).
- Charles M Clapton. Mr Clapton has nearly two decades of Capitol Hill experience, Notably, he served as health policy director for the Senate Committee on Health, Education, Labor, and Pensions, aiding the passage of the FDA Safety and Innovation Act (2012). He also played a pivotal role as a lead Republican staffer during the Affordable Care Act's congressional deliberations. He also impacted the House Ways & Means and Energy & Commerce Committees by shaping Medicare Part D prescription drug benefits, revise drug payment methods for Medicare Part B, and Medicaid changes in the Deficit Reduction Act of 2005.
- Thomas Barker represents healthcare providers and payers before the Centers for Medicare & Medicaid Services (CMS) and other components of the Department of Health and Human Services (HHS), Congress, and the Department of Labor. Tom is a former commissioner of the Medicaid and CHIP Payment and Access Commission (MACPAC), an advisory body that provides policy advice to Congress and the states on the Medicaid and CHIP programs. He is one of the authors of the firm's Medicaid & the Law blog, www.medicaidandthelaw.com, which highlights and explains current legal and policy issues in the Medicaid program.
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Join us in this episode as co-hosts Tiffany and Deb share a recap of the 2023 ACR, American College of Rheumatology Conference and how these topics specifically affect AiArthritis diseases. Tiffany and Deb also share an insight into our program, “Go With Us!” to Conferences. The Go With Us program allows patients to attend these conferences in real time and get updates on different important or emerging topics for AiArthritis diseases.
In this episode, the co-hosts discuss some main conference topics, both pharma and non-pharma, such as how precision medicine can greatly benefit patients by matching correct treatment plans, how existing treatments are being retested for subgroups and how lifestyle can impact your treatment. Learn common questions doctors receive from patients about their day to day life such as exercise, stress and diet and their advice on how lifestyle modifications can also help to alleviate symptoms. Don’t miss this patient recap of the 2023 ACR conference!
Resources & Links:
- To join the Go With Us program, click here: https://www.aiarthritis.org/conferences
- To learn how to volunteer with AiArthritis, check out our program here: https://www.aiarthritis.org/volunteer
- Come be apart of the AiArthritis Research Database here: https://www.aiarthritis.org/database
- To learn more about JIA project, click here: www.aiarthritis.org/JIAcommunication
- Nutrition Resource for Patients : www.tiny.ucsf.edu/rheumnutrition
Episode Highlights:
- How lifestyle modifications such as exercise, stress and diet can help alleviate symptoms
- Understanding what parts of your immune system is being triggered by your disease for matching to the best treatments
- Discussion on how early should early intervention be done for JIA
- The importance of understanding precision medicine to improve matching the correct treatment plan for your AiArthritis disease.
- AiArthritis Go With Us program where you are able to attend the conferences such as ACR and EULAR in real time to understand current and emerging topics that relate to AiArthritis diseases.
- New therapy option in the very beginning stages being discussed at ACR that has the potential to suppress and protect from autoimmune arthritis diseases.
- Why supporting research is so important for the development of AiArthritis treatments
Meet Our Host:
- Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @tiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
- Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.
Connect with Deb:
- Facebook: @deb.majcherconstien
- Instagram: @debconstien
- Twitter: @debconstien
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
This is an AiArthritis Voices 360 REWIND, where we are bringing back two short episodes that were recorded way back in 2019, because chances the topics are very important! Also note - you will hear the acronym IFAA, which we used prior to using AiArthritis.
The first segment revisits an episode where Tiffany is joined by Dr. Apostolos Kontzias to explore the distinction between autoimmune and autoinflammatory diseases. In the second segment Tiffany discusses the importance of differentiating between arthritis types to improve the misunderstandings that are associated with arthritis and, in turn, will help expedite detection. Join us in this episode discussing AiArthritis’s mission to improve awareness and understanding of these conditions.
Episode Highlights:
- Innate vs adaptive immunity
- The difference between autoimmune and autoinflammatory diseases as well as the subcategories such as age and onset
- If patients do not have positive labs or biomarkers, it does not mean they do not have an autoimmune disease
- Listening to your patients is important because every patient is different.
- Importance of doctors and nurses understanding of the different types of arthritis diseases to increase early detection.
Meet Our Host:
- Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @tiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
Meet Our Guest:
- Dr. Apostolos Kontzias is the Vice Director, Center of Autoinflammatory Diseases at Stony Brook University, Renaissance School of Medicine. Dr. Kontzias is one of the national and international experts in the field of autoinflammatory diseases/periodic fever syndromes. His subspecialty interest includes seronegative spondyloarthritis and Sjögren’s syndrome.
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
At AiArthritis, we represent those diagnosed, their care partners/support network, and the undiagnosed (often called the “Mystery Patients”). This episode is for those struggling to get diagnosed. Join co-hosts Tiffany, Kerry and Danielle as they share their personal diagnosis struggles and delve deep into the challenges many other patients face on their diagnosis journey. From navigating initial symptoms to facing dismissive healthcare providers due to 'normal' blood work, we're talking about common hurdles that delay diagnosis, then encouraging YOU to share your experiences and perspectives as well. Together, we will create a Patient-Led Guide to an AiArthritis Disease Diagnosis.
There are life-altering consequences of not getting diagnosed early, including decreasing chances to achieve remission and increasing the likelihood of comorbidities (such as multiple AiArthritis and related diseases, heart disease, and even Alzheimer’s and dementia). The guide we create will help the undiagnosed recognize signs their diagnosis journey may be getting derailed and understand crucial questions to ask health professionals during pivotal visits.
Share your story to help create a patient-led guide: https://bit.ly/undiagnosedadvice
Episode Highlights:
- Explore the common struggles patients face while seeking a diagnosis, including being dismissed by doctors and misinterpreting 'normal' blood work.
- Hear unique stories from Danielle, Kerry, and Tiffany, revealing the emotional and physical toll of diagnosis delays.
- Discover how delayed diagnoses can lead to irreversible damage and additional health complications.
- Learn the value of patient advocacy and the importance of asking the right questions during doctor visits.
- Help us complete our initial Patient-Led Guide to an AiArthritis Disease Diagnosis! https://bit.ly/undiagnosedadvice
Meet Our Co-Hosts:
- Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @tiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
- Kerry is a writer and patient advocate living with fibromyalgia, rheumatoid arthritis, sarcoidosis, Sjögren's syndrome, and small fiber neuropathy/dysautonomia (to name a few). As these conditions took their toll and she became less physically able, Kerry became empowered to use her voice to advocate for herself and for patients like her. She is currently working on "Kaleidoscope," a collection of rare disease stories.
Connect with Kerry:
Instagram: @buttahflyk
Twitter: @buttahflyk
Facebook: @floatlikeabuttahfly
Website: http://bit.ly/floatlikeabuttahfly
- Danielle is a career educator, wife, and mother of 3. She was diagnosed with Rheumatoid Arthritis and Primary Biliary Cholangitis after years of unproductive medical investigation. She is dedicated to educating fellow AiArthritis patients about the importance of liver health and metabolic testing. In her spare time, she also co-hosts a podcast with her husband and 10 year old daughter about the importance of film history for the next generation.
Connect with Danielle:
Website: https://www.omnibusride.com/
Email: 1in20000special@gmail.com
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Tune in to the latest episode of AiArthritis Voices 360 Talk Show, where your co-hosts Leila, Deb, and Kerry candidly share their personal journeys of undergoing surgery while living with AiArthritis diseases. In this episode, the co-hosts delve into their surgical experiences, including the pivotal surgeries they've had due to their conditions. From Deb's journey triggered by a bunion removal to Kerry's hip replacement due to the complex interplay of autoimmune conditions or Leila’s gastric sleeve surgery due to weight gain from treatments, the trio reflects on the unexpected intersections of surgeries and AiArthritis diseases.
They discuss the preparations they navigated before surgery, the challenges they faced with doctor clearances and insurance, and provide valuable insights for fellow AiArthritis patients, including the crucial questions to ask healthcare professionals. Listen in to gain a unique perspective on surgeries with AiArthritis diseases and discover firsthand the resilience and strength that arise from these experiences.
Share your questions here: info@aiarthritis.org
Episode Highlights:
- What surgeries each co-host has had and whether they are related to their AiArthritis disease
- What preparation is required before surgeries with an AiArthritis disease
- What questions patients should ask their doctors to prepare for surgery
- Co-hosts share their recovery journey
Meet Our Co-Hosts:
- Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.
Connect with Leila:
Instagram: @lupuslifestyle.lei
LinkedIn: www.linkedin.com/in/leila-lagandaon
Facebook: @leilaaiarthritis
TikTok: @lupuslifestyle.lei
- Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.
Connect with Deb:
- Facebook: @deb.majcherconstien
- Instagram: @debconstien
- Twitter: @debconstien
- Kerry was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities
Connect with Kerry:
Instagram: @buttahflyk
Twitter: @buttahflyk
Facebook: @floatlikeabuttahfly
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
This episode is a Step 5 - revisit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process.
What do patients need to know about the upcoming changes to biosimilars and interchangeability in 2023?
In this episode, Tiffany is joined by esteemed guest experts Michael Reilly, Dr. Ralph McKibbin and Andrew Spiegel to explore the crucial distinctions between interchangeability, automatic substitution, and non-medical switching. Gain valuable insights into how these differences impact patients not only in the USA but also on a global scale.
In addition, our guests discuss the latest proposed bills in the US regarding biosimilar interchangeability, offering expert perspectives on the legislative developments and their implications for patients and healthcare providers alike.
Join us on this episode as we explore the latest updates in biosimilar interchangeability and share ways to raise your voice against non-medical switching without physician involvement.
Episode Highlights :
- What is the difference between Interchangeability, Automatic Substitution, and Non-Medical Switching?
- Latest proposed legislation regarding biosimilars interchangeability
- The importance of physician involvement in biosimilars interchangeability
- What is the chance of original biologic failure if you fail the biosimilar? (and other patient submitted questions)
- Updates on biosimilars advancements in the US and around the world
- What are Automatic Substitution Laws?
- How to become involved in the fight against the new legislation proposed to remove “interchangeability” protections in switching
Resources Mentioned In This Episode:
- AiArthritis Biosimilars Hotline: https://www.aiarthritis.org/biosimilars
- EMA - What Is A Biosimilar : https://www.ema.europa.eu/en/human-regulatory/overview/biosimilar-medicines-overview
Meet Our Co-Hosts & Guests:
- Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @tiffanyAiArthritis
- Twitter: @TiffWRobertson
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LinkedIn: @TiffanyWestrichRobertson
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Ralph McKibbin, MD, FACP, FACG, AGAF is the Chairman of Alliance for Safe Biologic Medicines. Dr. McKibbin is a practicing gastroenterologist at Blair Gastroenterology Associates in Altoona, PA. He is past president of both the Pennsylvania Society of Gastroenterology and of the Digestive Disease National Coalition (DDNC). He sits on the Member Advisory Panel of the Pennsylvania Medical Society; and is a member of the Pennsylvania State Cancer Control Consortium. Dr. McKibbin has written extensively on the issues of non-medical switching and insurance industry utilization management techniques including step therapy and copay accumulator adjustments.
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Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colorectal Cancer Alliance and was longtime board member of the Alliance became CEO in January of 2008 and ran the CCA for nearly 5 years, before undertaking his next venture, the Global Colon Cancer Association (GCCA).In addition to his work in the colon cancer community, Spiegel is an active advocate for health care policies both in the US and now worldwide. He is a co-founder and currently serves on the steering committee of the Alliance for Safe Biologic Medicines (ASBM). He is on the Board of Directors, and in December 2014 was elected to Chair, of the Digestive Disease National Coalition (DDNC),a founding member of the Coalition to Increase Clinical Trial Participation and in May of 2016 he began a three year term as a member of the Board of Directors of the International Alliance of Patient Organizations (IAPO) where he chaired the fundraising committee. Spiegel has won multiple awards for his work in patient advocacy.
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Michael Reilly, Executive Director of Alliance for Safe Biologic Medicines, has served as the executive director of ASBM since its inception in 2010. He has more than a decade of experience in the federal government developing and implementing healthcare policy. Mr. Reilly served as the associate deputy secretary at the U.S. Department of Health and Human Services (HHS) from 2005-2008 responsible for policy development and implementation, as well as regulatory oversight for issues involving CMS and the FDA. In addition to serving as the associate deputy secretary, Mr. Reilly served as a senior advisor to the assistant secretary for public affairs and the assistant secretary for planning and evaluation at HHS from 2002-2005. Mr. Reilly has been quoted in a series of FDA publications and co-authored many articles on biosimilars for the Generics and Biosimilars Initiative Journal. He has also presented to health regulators worldwide, including the Australian TGA, Health Canada and the World Health Organization (WHO).
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Are you tired of feeling frustrated and unheard when it comes to your doctors, your disease, and all the challenges that come with it? Wish you had a platform to let it all out and find understanding?
Welcome to AiArthritis Rant Discussions - Inspired by Am I The @$$hole? Brace yourself for a new series that will give you a voice and an outlet to vent your frustrations. In this episode, our co-hosts Leila, Charis, and Patrice dive into the rants submitted by our AiArthritis community and they'll react, comment, and delve into topics that resonate with so many.
From stories of triumph over disease denial to the maddening experience of feeling invisible while in pain, this episode covers it all. Get ready to join us as our co-hosts fearlessly read aloud submissions from the AiArthritis community, sharing rants, vents, and personal stories. Together, they'll explore the burning question: Are you the @$$hole?
If you would like to share your own rant with us for the next episode in this series, submit it here! www.AiArthritis.org/Rant
Episode Highlights:
- Co-hosts react to rant submissions from our AiArthritis community
- Overcoming disease denial
- How to handle being mistaken for looking “healthy”
- How to explain your pain and symptoms when you have “standard level” test results
- Dealing with adverse reactions to medication from your doctor
- Join our next series by submitting your own AiArthritis rant!
Our Co-Hosts:
- Leila is the Health Education and Engagement Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.
Connect with Leila:
Instagram: @lupuslifestyle.lei
LinkedIn: www.linkedin.com/in/leila-lagandaon
Facebook: @leilaaiarthritis
TikTok: @lupuslifestyle.lei
Charis Hill, who uses they/them pronouns, is a disability activist, writer, speaker and model living with many conditions including Axial Spondyloarthritis (axSpA), Ehlers Danlos Syndrome (EDS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. Charis’ multi-tiered work uses narrative engagement to advance social justice for multiply-marginalized disabled people. Charis’ story is regularly featured internationally in media outlets and in the documentary: "Becoming Incurable." In addition to Charis' leadership on patient advocacy organization committees and regular speaking engagements about health and disability, they boast bylines in HealthCentral, Healthline, and Business Insider; including cover stories for Arthritis Today and Spondylitis Plus magazine; and they have been awarded by the Arthritis Foundation and Spondylitis Association of America for their work on legislative advocacy for state and federal policy efforts.
Connect with Charis:
Twitter: @beingcharisblog
Tikok : @beingcharisblog
Facebook: @beingcharis
Patrice was diagnosed with Polymyalgia Rheumatica. Patrice has been in remission off and on during these last 11 years. Patrice also has had several comorbidities: severe hearing loss which resulted in her now wearing hearing aids, a Baker's Cyst, a vein ablation, plantar fasciitis, pseudo gout, and she also has osteopenia. Patrice has been a volunteer with AiArthritis for over 2 years and has been co-host and a host for the podcast several times. Patrice went to EULAR virtually with AiArthritis in 2020 and 2021 and attended the virtual ACR conference in 2021 with AiArthritis.
Connect with Patrice:
Facebook : @PatriceJohnson
Twitter: @patrice.johnson315
Instagram: @patrice.johnson315
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
In this episode, Tiffany will discuss how different organs can be impacted by the disease and the difference between an organ being part of a disease and being a comorbidity. Tiffany will be exploring some examples of organs being affected in various diseases such as eyes, heart, gastrointestinal, and kidneys, as well as a newer autoimmune disease, IgG4, that is commonly being diagnosed for patients alongside their AiArthritis disease. It is crucial for patients to be proactive in their healthcare by asking their healthcare provider about organ involvement - as part of their disease or as a potential comorbidity- and what steps they can take to next manage their health.
This episode is just the start of this conversation! Tiffany will be joined by Eileen and Deb at EULAR 2023 in Milan, Italy, as part of our “Go With Us!” To Conferences program. While there we will be recording updates for you from all sessions that cover this topic, which will be available soon after on our YouTube channel/Go With Us! to EULAR 2023 playlist.
- Want to get insider information from our visit to EULAR 2023 and first notification of new materials we create from attending? Sign up at https://www.aiarthritis.org/conferences
- Share your AiArthritis disease comorbidities questions with us here! info@aiarthritis.org Subject: Comorbidities
Episode Highlights:
- Understanding the complexities of comorbidities with AiArthritis diseases
- Sharing the different comorbidities that commonly occur with AiArthritis diseases
- Learn which organs are commonly affected by comorbidities and what your risks are
- Understand IgG4, a newer autoimmune disease more and how it may be diagnosed alongside AiArthritis diseases
- How to attend conferences with AiArthritis and learn more about comorbidities
- Learn more about your AiArthritis disease by joining us at conferences, sharing your questions, joining AiArthritis Voices service or participating in the AiArthritis Research Database
Our Co-Hosts:
- Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Have you ever experienced the frustration of not being able to get a diagnosis, or worse, receiving the wrong one?
In this episode, our co-hosts Tiffany, Kelly, and Kerry, dive into what it is to be a mystery patient. In addition, they each share their personal experiences of being a mystery patient, and the challenges they experienced with delayed diagnosis.
They discuss the emotional toll that comes with being a mystery patient, including the frustration, anxiety, and uncertainty that can linger for months or even years. We also explore the physical consequences of delayed diagnosis and the correct treatment.In addition, our co-hosts explore the importance of sharing our mystery patient stories to learn from one another, help ease the burden of being a mystery patient and provide support to others along the journey.
Whether you're a mystery patient or have had similar experiences, this episode sheds light on the lessons learned, triumphs, and struggles that many face and why your story matters. Share your story with us today at aiarthritis.org/mysterypatient and help us all learn more about AiArthritis diseases.
Episode Highlights:
- What is a mystery patient?
- Kerry, Kelly and Tiffany share their own personal stories of their mystery patient journey and the impacts of a delayed diagnosis.
- The importance of sharing your diagnosis journey story so we can learn from each other and understand how to help others along in this process.
- The mental and physical toll that occurs with a delayed diagnosis
- Is it ethical to treat Undifferentiated Diseases if it can be treated other ways?
- How sharing your story can help uncover the best questions to ask during your doctor visits
Our Co-Hosts:
- Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
- Connect with Tiffany:
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
- Kerry was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities
- Connect with Kerry:
- Instagram: @buttahflyk
- Twitter: @buttahflyk
- Facebook: @floatlikeabuttahfly
- Kelly Conway is a speech-language pathologist, author/blogger, and a patient advocate. She has been living with autoimmune arthritis since age 14 but wasn’t formally diagnosed until age 32. That diagnosis has changed more than 5 times over the past 18 years. Through social media, she connected with fellow patients and cofounded the International Foundation for Autoimmune and Autoinflammatory arthritis. Kelly believes in the power of the patient voice and sharing our stories to raise awareness, education, and advocacy.
- Connect with Kelly:
- Facebook: @Lolabellaquin
- Twitter: @Lolabellaquin
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Have you or your family been affected by juvenile arthritis? On this episode, Tiffany is joined by Rochelle Lentini, CEO and President of Purple Playas Foundation, who have united with other specialists and families to identify additional tips to improve communication.
During this episode, Rochelle and Tiffany discuss this new collaboration project between AiArthritis and Purple Playas Foundation, along with Rheumatology Nurses Society and Novartis, to create discussion aids and question guidance to help families improve communication with all the professionals they meet along the way.
Tiffany and Rochelle also provide suggestions that can offer some hope to families struggling to get answers. If you would like to share your story, insights, or recommendations to help us create these new tools to help those navigating through their Juvenile Arthritis journey, please fill sign up using our Google form at www.aiarthritis.org/jiacommunication
Episode Highlights:
- Rochelle shares the difficult, frustrating, and lengthy diagnosis process for her son’s Juvenile Arthritis
- Common symptoms to look out for with Juvenile Arthritis
- What types of doctors you might see along the diagnosis process
- Importance of symptom tracking with your children to provide as much details and data to your physician as possible
- Tips on best questions to ask your doctor when seeking a diagnosis
- How to improve patient-doctor communication for better understanding on both sides
- How to communicate with your child and give them a voice when interacting with their doctor
- Purple Playas and AiArthritis are coming together to collaborate on new resource tools for parents and children seeking a Juvenile Arthritis diagnosis
- How to get involved in the new resource tool and share your insights and recommendations for improvements
Thank you to Novartis for supporting the Journey Improvement Aids (JIAs) for Juvenile Idiopathic Arthritis (JIA) - Detection, Diagnosis, Treatment project.
Our Co-Hosts:
- Tiffany is the CEO of the International Foundation for AiArthritis, and uses her professional expertise in mind-mapping and problem-solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
- Rochelle Lentini, M.Ed. is the CEO/President of the Purple Playas Foundation and an early childhood education national consultant/trainer. She has RA and her son has juvenile arthritis, hypogammaglobulinemia, and other overlapping conditions. Rochelle has over 40 years of experience working with children with disabilities and their families and is a nationally recognized speaker. Her passions include family-centered support, inclusion, and inspiring hope for kids with chronic illnesses.
Connect with Rochelle:
- Facebook : @PurplePlayas
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Join us for this episode where the co-hosts, Tiffany and Leila, share their personal journeys of being diagnosed with AiArthritis diseases. Tune in to hear how their journey of being diagnosed and misdiagnosed and the lessons they learned throughout the process.
We also delve into the exciting new resource tool developed by AiArthritis, which helps patients navigate the process of seeking a diagnosis, understanding symptoms, and asking the right questions of their doctors. Plus, we invite other patients to share their stories and provide insights for those just starting their Auto + inflammatory arthritis journey. Join us for an informative and uplifting conversation on Auto + inflammatory arthritis diseases.
If you would like to share your story, insights or recommendations to help improve our new tool, please fill out the Google form on www.aiarthritis.org/diseases
Episode Highlights:
- Leila and Tiffany share their different stories of being diagnosed with their diseases
- Importance of resources for auto + arthritis diseases for patients to compare their symptoms to and hear other patients stories
- How to best be supported on the journey of discovering what your disease may be when you show first signs of symptoms
- What questions are recommended to ask your doctor when searching for a diagnosis
- List of different symptoms you may experience with auto or arthritis diseases
- Best advice for patients seeking AiArthritis diagnosis
Links Mentioned:
Come share your stories for the new AiArthritis Ebook : The Good, The Bad & The Ugly : AiArthritis.org/gbu
- Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
- Leila is the Health Education and Engagement Manager at AiArthritis. She manages the AiArthritis Voices Program. At 8 years old, she was diagnosed with immune thrombocytopenia (low platelet count). She spent a lot of time in the hospital trying different infusions and therapies; including prednisone - yuck! Rituximab ended up being the biologic that saved her life. From that experience, she knew that she wanted to be able to help people just like all the healthcare workers at UCSF helped her through that difficult time
Connect with Leila:
Instagram: @lupuslifestyle.lei
LinkedIn: www.linkedin.com/in/leila-lagandaon
Facebook: @leilaaiarthritis
YouTube: LupusLifestyle.Lei
TikTok: @lupuslifestyle.lei
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Welcome to part 2 of the Rheumy Rounds episode where we bring Rheumatologists and patients to the table. During this episode, we are going to be discussing the good, the bad and the ugly in office visits. In an effort to improve office visits and patient experiences, we are creating an Ebook with a collection of all your stories.
During this episode, Deb Constein and Tiffany Westrich-Robertson share their experiences as patients and Dr. Al Kim shares his perspective as a physician. In addition, we highlight the importance of active listening and communication during office visits. Join us on this episode to hear more insights, research and information on best practices to improve your experiences as a doctor or patients.
If you are interested in sharing your patient experience for our new Ebook, send your stories over to aiarthritis.org/gbu
Episode Highlights:
- AiArthritis is creating an Ebook with a collection of patient stories of the good, the bad and the ugly to study these interactions and help improve patient care.
- Deb, Tiffany and Dr. Al Kim share their experiences with undiagnosed and misdiagnosis and patient care
- Importance of active listening as a physician so you can work together to find a proper diagnosis or treatment
- How best to set expectations as a physician for treatment options
- Importance of doctors managing their emotional reserve when seeing patients in the office daily
- Best practices at building better doctor-patient communication in the office
Links Mentioned:
Come share your stories for the new AiArthritis Ebook : The Good, The Bad & The Ugly : AiArthritis.org/gbu
- Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.
Connect with Deb:
- Facebook: @deb.majcherconstien
- Instagram: @debconstien
- Twitter: @debconstien
Dr. Kim is an Assistant Professor of Medicine and of Pathology & Immunology at Washington University School of Medicine. He also founded and directs the Washington University Lupus Clinic. Dr. Kim’s research group is focused on addressing the unmet needs of human systemic lupus erythematosus (SLE), including understanding and leveraging the biomarker potential of complement activation products, testing novel noninvasive imaging platforms such as photo acoustics to detect lupus nephritis, understanding the relationship between sleep quality and lupus activity, and restoring eroded social support in patients with SLE.
Connect with Dr. Al Kim
Instagram: @washulupusclinic
Twitter : @AlHKim
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Welcome to another Rheumy Rounds episode where we bring Rheumatologists and patients to the table. During this episode, we are going to be discussing the good, the bad and the ugly in office visits. In an effort to improve office visits and patient experiences, we will be collecting YOUR stories and examples of Good, Bad, and just downright Ugly office visits. We will turn this collection into an eBook and AiArthritis (patients) and rheumatologists will read your submissions and work together to create recommendations to improve office communications (citing YOUR examples!)
During this episode, Kerry Wong and Tiffany Westrich-Robertson share their experiences as patients and Dr. Lisa Zickuhr shares her perspective as a physician. Together on this episode, we highlight the importance of communication, compassion and openness in bettering patient-doctor relationships.
IF YOU ARE A PATIENT/FAMILY OR RHEUMATOLOGIST, PLEASE SUBMIT YOUR STORIES FOR THIS PROJECT AT https://www.aiarthritis.org/gbu
Episode Highlights:
- AiArthritis is creating an Ebook with a collection of patient stories of the good, the bad and the ugly to study these interactions and help improve patient care.
- Kerry, Tiffany and Dr. Lisa Zickuhr share their experiences with undiagnosed and misdiagnosis and patient care
- How a doctor can approach a patient who they are unable to diagnosis in the beginning stages
- Patients need to be receptive to a physician's message as much as a physician needs to be empathetic to the patient
- The importance of knowing what to do next or monitor for if you’re tests come back negative so the patient doesn’t feel left without any direction
- Information sharing between the doctor and patient can be the difference between a bad and good interaction even without diagnosis
Links Mentioned:
Come share your stories for the new AiArthritis Ebook : The Good, The Bad & The Ugly : AiArthritis.org/gbu
- Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
- Kerry was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities
Connect with Kerry:
Instagram: @buttahflyk
Twitter: @buttahflyk
Facebook: @floatlikeabuttahfly
- Dr. Lisa Zickuhr
Dr. Zickuhr is a rheumatologist and clinician educator who devotes half of her time to caring for patients with autoimmune rheumatic diseases and half to educating physicians in training. Her clinical interests lie in treating patients with systemic lupus erythematosus and other related conditions. She also cares for patients using telemedicine and is interested in the best ways to teach health care professionals how to communicate with and examine patients virtually.
Connect with Dr. Lisa Zickuhr:
Instagram: @washumedicine
Twitter : @WUSTLmed
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Patient involvement in research is key to developing knowledge and understanding around the many AiArthritis diseases. As a person living with AiArthritis diseases, there are lots of ways you can get involved with patient research such as clinical trials, surveys, focus groups, data banks and more. You can even elevate your participation through conference attendance and being part of the research team!
In this month’s episode, we join our co-hosts Tiffany, Deb, Kerry and Eileen, all living with AiArthritis diseases, as they discuss the importance of patient involvement in research. During this episode, the co-hosts will share their own experiences in patient research, how inclusion criteria impacts the ability to participate, what factors to consider before joining and how to find patient research opportunities. Join us in this episode as we discuss clinical trials and start the important conversation of patient research.
Episode Highlights:
- Patient’s Experiences in Clinical Trials
- Inclusion & Exclusion Criteria For Clinical Trials
- Why it is important for patients to be involved in research
- How do you find patient research opportunities
- What to consider before joining patient research
- Types of patient research to participate in
Links Mentioned:
www.aiarthritis.org/clinicaltrials
www.clinicaltrials.gov
Meet Our Co-Hosts:
- Tiffany Westrich-Robertson is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWRobertson
-
LinkedIn: @TiffanyWestrichRobertson
-
Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.
Connect with Deb:
- Facebook: @deb.majcherconstien
- Instagram: @debconstien
-
Twitter: @debconstien
-
Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints, Healthline or Chronic Eileen.
Connect with Eileen:
-
Twitter: @Chroniceileen
-
Kerry Wong was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities
Connect with Kerry:
- Instagram: @buttahflyk
- Twitter: @buttahflyk
- Facebook: @floatlikeabuttahfly
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
This episode is a Step 2 - an initial visit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process.
DEIA : Diversity, Equity, Inclusion, and Accessibility. Each of these elements that affect patients daily should be considered when thinking about patient diagnosis, physician care, treatment plans, research, lifestyle choices, and societal inclusion.
In this month’s episode, we join Tiffany from AiArthritis, Estela Mata from Looms 4 Lupus, and Charis Hill - disability activist, as we are going to be discussing this topic. Each co-host has their own story to share, their experience with DEIA, and how it has impacted their patient journey as well as our community. Join us as we just scratch the surface in this important, but necessary, topic.
Episode Highlights :
- What is DEIA?
- How diversity affects representation in clinical data and can lead to a delayed diagnosis
- How equity and the accessibility patients may have to physicians, treatment types, providers, household income and lifestyle choices affects potential treatment and care plans
- The importance of including diverse groups in clinical data
- What social determinants should be considered when determining approach to care
- AiArthritis’ patient lead research program
- How healthcare biases contribute to patient disparities
- How to increase digital accessibility for patients
Resources Mentioned In This Episode:
- ‘About Damn Time’: Disabilities Get Represented at Emmys and Beyond https://sarcoidosisnews.com/columns/about-damn-time-disabilities-get-represented-emmy-awards-disability-representation/
- Subconscious vs Unconscious: The Complete Comparison Learn about Unconscious vs Subconscious mind: definition, synonym. How to manage minds Subconsciously and Unconsciously: https://diversity.social/unconscious-vs-subconscious/
- Physicians and Implicit Bias: How Doctors May Unwittingly Perpetuate Health Care Disparities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3797360/#:~:text=All%20of%20society%20is%20susceptible,ethnicity%2C%20gender%20or%20other%20characteristics
- Race, Ethnicity, and Disparities in Rheumatology Educational Materials https://onlinelibrary.wiley.com/doi/10.1002/acr.24602?elq_cid=26233150&elq_mid=64639
Meet Our Co-Hosts & Guests:
- Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWRobertson
-
LinkedIn: @TiffanyWestrichRobertson
-
Estela Mata is the President and co-founder of Looms for Lupus, a non-profit organization that provides Lupus, Fibromyalgia and Mental Health Awareness, advocacy, and support to those living with these conditions, their loved ones, and caregivers. In 2011 she co-founded Looms for Lupus when her sister almost lost her life to Immune thrombocytopenia and Lupus; she is alive today because she advocated for herself. Estela has supported her sister and her passion to help others has evolved to “iLOOMinating”, Engaging, Empowering and Supporting the community as a whole to take control of their overall healthcare.
Connect with Estela :
- Facebook:@estelamata @looms4lupus
- Instagram: @estela_mata @looms4lupus
- Twitter: @estelamata @looms4lupus
- YouTube: Looms4Lupus
-
TikTok: estela.mata
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Charis Hill, who uses they/them pronouns, is a disability activist, writer, speaker and model living with many conditions including Axial Spondyloarthritis (axSpA), Ehlers Danlos Syndrome (EDS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. Charis’ multi-tiered work uses narrative engagement to advance social justice for multiply-marginalized disabled people. Charis’ story is regularly featured internationally in media outlets and in the documentary: "Becoming Incurable." In addition to Charis' leadership on patient advocacy organization committees and regular speaking engagements about health and disability, they boast bylines in HealthCentral, Healthline, and Business Insider; including cover stories for Arthritis Today and Spondylitis Plus magazine; and they have been awarded by the Arthritis Foundation and Spondylitis Association of America for their work on legislative advocacy for state and federal policy efforts.
Connect with Charis:
- Twitter: @beingcharisblog
Donate to Support the Show: https://www.aiarthritis.org/donate
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
This episode is a Step 2 - an initial visit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process.
As more treatment options are moving towards Biosimilars, many questions are being raised by patients. What are Biosimilars? Are they safe and effective? Are there downsides? Upsides? What are doctors' opinions on Biosimilars? What should I do if I am switched to a Biosimilar?
These are all questions that are at the forefront of our minds when living with AiArthritis diseases. This month, we invited patient advocates, doctors and coalition leaders to join the conversation to discuss and answer the many questions someone living with AiArthritis may have. Join us this month as we break down Biosimilars, share opinions, concerns, research, and resources so patients can better understand Biosimilars and what their availability means for their treatment plan.
Episode Highlights :
- What are Biosimilars?
- The main concerns patients have with switching to Biosimilars
- What is Non-medical switching? Automatic Substitution? Interchangeability?
- Biosimilars are safe and effective and are recommended for patients to use if it does not interrupt continuity of care
- Regulations and the physicians involvement with switching patients to biosimilars
- First steps to take if you are asked to switch to a Biosimilar
- Research and resources to learn more about Biosimilars
Resources Mentioned In This Episode:
-
- AiArthritis Biosimilars Hotline: https://www.aiarthritis.org/biosimilars
- Biosimilars Patient Advocacy Toolkit: World Patients Alliance/Global Colon Cancer Association
-
ASBM/GaBI Webinar: KEY SUCCESS FACTORS FOR BIOSIMILAR UPTAKE IN EU and US - Good overview of US and EU markets:
-
- Key Factors for Successful Uptake of Biosimilars: Europe and The US : https://www.youtube.com/watch?v=R5DlKPpMjDk
- Non-Medical Switching of Biologicals/Biosimilars : Canada, Europe and The US : https://www.youtube.com/watch?v=A5nJkCJM32M
- Non-Medical Switching : Physician Perspectives : https://www.youtube.com/watch?v=R9ULgUQEcZ0
- GaBI Whitepaper on Canadian Substitution Policies: http://gabi-journal.net/a-critical-review-of-substitution-policy-for-biosimilars-in-canada.html
- GaBI Whitepaper on US Biosimilar Market Catching Up to Europe: http://gabi-journal.net/a-white-paper-us-biosimilars-market-on-pace-with-europe.html
- GaBI Whitepaper on Lessons from the European Biosimilar Markets: http://gabi-journal.net/policy-recommendations-for-a-sustainable-biosimilars-market-lessons-from-europe.html
Meet Our Co-Hosts & Guests:
- Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @tiffanyAiArthritis
- Twitter: @TiffWRobertson
-
LinkedIn: @TiffanyWestrichRobertson
-
Ralph McKibbin, MD, FACP, FACG, AGAF is the Chairman of Alliance for Safe Biologic Medicines. Dr. McKibbin is a practicing gastroenterologist at Blair Gastroenterology Associates in Altoona, PA. He is past president of both the Pennsylvania Society of Gastroenterology and of the Digestive Disease National Coalition (DDNC). He sits on the Member Advisory Panel of the Pennsylvania Medical Society; and is a member of the Pennsylvania State Cancer Control Consortium. Dr. McKibbin has written extensively on the issues of non-medical switching and insurance industry utilization management techniques including step therapy and copay accumulator adjustments.
-
Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colorectal Cancer Alliance, now the leading US based national patient advocacy organization dedicated to colon cancer. Mr. Spiegel, an attorney, besides being a co-founder of the organization and longtime board member of the Alliance became CEO in January of 2008 and he ran the CCA for nearly 5 years, before undertaking his next venture, the Global Colon Cancer Association (GCCA).In addition to his work in the colon cancer community, Spiegel is an active advocate for health care policies both in the US and now worldwide. He is a co-founder and currently serves on the steering committee of the Alliance for Safe Biologic Medicines (ASBM). He is on the Board of Directors, and in December 2014 was elected to Chair, of the Digestive Disease National Coalition (DDNC),a founding member of the Coalition to Increase Clinical Trial Participation and in May of 2016 he began a three year term as a member of the Board of Directors of the International Alliance of Patient Organizations (IAPO) where he chaired the fundraising committee. Spiegel has won multiple awards for his work in patient advocacy.
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Michael Reilly, Executive Director of Alliance for Safe Biologic Medicines, has served as the executive director of ASBM since its inception in 2010. He has more than a decade of experience in the federal government developing and implementing healthcare policy. Mr. Reilly served as the associate deputy secretary at the U.S. Department of Health and Human Services (HHS) from 2005-2008 responsible for policy development and implementation, as well as regulatory oversight for issues involving CMS and the FDA. In addition to serving as the associate deputy secretary, Mr. Reilly served as a senior advisor to the assistant secretary for public affairs and the assistant secretary for planning and evaluation at HHS from 2002-2005. Mr. Reilly has been quoted in a series of FDA publications and co-authored many articles on biosimilars for the Generics and Biosimilars Initiative Journal. He has also presented to health regulators worldwide, including the Australian TGA, Health Canada and the World Health Organization (WHO).
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
This episode is a Step 5 - a revisit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process
Over the last couple of years, the world has watched as COVID-19 has evolved into variants that differ slightly from the original virus. We’ve seen vaccinations and boosters work, yet we also know that new strains are somewhat resistant to high level protection. COVID treatments have emerged to help those who are immunocompromised - like those with AiArthritis diseases who are on immunosuppressive treatments - but can we access them and, if so, how?
We've been on quite an emotional and physical rollercoaster, and it’s not over. Should we be concerned about “Long COVID” and “Post COVID”? What is research showing about COVID in our rheumatology population? Join Tiffany, Patrice, and Deb - all persons living with AiArthritis diseases and who also all have experienced COVID recently - as they share the latest research, guidance, and their own personal patient-guided opinions - in regards to the world of COVID in 2022.
Episode Highlights :
- What are Long COVID and Post COVID and how either can affect someone with AiArthritis diseases?
- The key factors that increase risk of getting COVID
- Evolution of COVID and the relevance of current COVID research
- The first steps to take if you are someone with AiArthritis diseases and diagnosed with COVID
- How to access medication to prevent COVID for those who are immunocompromised
- The impact self care and your mental health can have on developing post COVID
Resources Mentioned In This Episode:
- Exploring the Link Between COVID-19 and Autoimmunity Can Help Patients With Long-Haul COVID: https://www.rheumatologyadvisor.com/home/news/exploring-the-link-between-covid-19-and-autoimmunity-can-help-patients-with-long-haul-covid/
- Long COVID is associated with poor mental health in patients with rheumatic disease: results from a 14-month longitudinal study: https://academic.oup.com/rheumatology/article/61/Supplement_1/keac133.074/6573114
- COVID-19 Outcomes Similar in Patients With and Without Immune-Mediated Inflammatory Diseases: https://www.rheumatologyadvisor.com/home/conference-highlights/eular-2022-coverage/covid-19-outcomes-similar-in-patients-with-and-without-immune-mediated-inflammatory-diseases/
- Still testing positive after day 10? How to decide when to end your COVID isolation : https://www.npr.org/sections/health-shots/2022/06/30/1108615724/positive-test-isolation
- The EULAR 2022 Debate: Will COVID-19 have a long-term impact on rheumatology practice? : https://rheumatology.medicinematters.com/eular-2022/covid-19/debate-long-term-impact/23124564
- Post-COVID-19 Tachycardia Syndrome: A Distinct Phenotype of Post-Acute COVID-19 Syndrome : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8356730/
- Risk Factors for “Long Haul” COVID-19 in Rheumatology Outpatients in New York City : https://acrabstracts.org/abstract/risk-factors-for-long-haul-covid-19-in-rheumatology-outpatients-in-new-york-city/
- COVID-19 in people with rheumatic diseases: risks, outcomes, treatment considerations: https://www.nature.com/articles/s41584-022-00755-x
- Coronavirus FAQ: Biden had a Paxlovid rebound. Is that common? What's it all about?: https://www.npr.org/sections/goatsandsoda/2022/05/20/1099176613/coronavirus-faq-i-took-paxlovid-i-felt-better-then-symptoms-rebounded-whats-up
- Long COVID is associated with poor mental health in patients with rheumatic disease: results from a 14-month longitudinal study : https://academic.oup.com/rheumatology/article/61/Supplement_1/keac133.074/6573114
Shout Outs:
Dr. Al Kim:
- Website: https://profiles.wustl.edu/en/persons/alfred-kim
- Twitter: @alhkim
Meet Our Co-Hosts:
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
- Facebook: @tiffanyAiArthritis
- Twitter: @TiffWTobertson
- LinkedIn: @TiffanyWestrichRobertson
Eileen is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others.
Connect With Eileen:
- Instagram: @chroniceileen
- Twitter: @chroniceileen
Patrice was diagnosed with Polymyalgia Rheumatica. Patrice has been in remission off and on during these last 11 years. Patrice also has had several comorbidities: severe hearing loss which resulted in her now wearing hearing aids, a Baker's Cyst, a vein ablation, plantar fasciitis, pseudo gout, and she also has osteopenia. Patrice has been a volunteer with AiArthritis for over 2 years and has been co-host and a host for the podcast several times. Patrice went to EULAR virtually with AiArthritis in 2020 and 2021 and attended the virtual ACR conference in 2021 with AiArthritis.
Connect with Patrice:
- Facebook : @PatriceJohnson
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
This episode is a Step 2 - put the topic on the table for the 1st time - in our 6 Step Patient-Led Problem Solving Process
In this episode Tiffany, Deb, and Bridget talk about personalized therapy, or complimentary, non-pharmacologic options, that are being researched and added to new recommendations for full disease management.
We often talk about the importance of Precision Medicine (which involves finding the best pharmacologic treatment for each person’s individual needs), but as we, as patients, identify what works best for our unique needs, we have to consider all options (both pharmaceutical and non-pharmaceutical). Just as with our biologics and other disease modifying treatments - where one works for one person and not the other - we need to think about alternative therapies the same way. For example, just because you “tried diet”, did you try all the diets?
We all need to find our own right combination of therapy - but what does that look like to you? Then we also need access to that option, which can be challenging, but together - with AiArthritis - we can fight to make access a reality!
*All main episodes that air on the 1st Sunday of each month are either Step 2 in our 6 step problem solving process (first time the topic is on the table) OR a Step 5, which is a revisit to the table. In a Step 2, we are putting a topic on the table for the first time to open conversation - and continue break out conversations (360its) to further explore what is most important to patients. Make sure your voice is counted!
Show Notes: Episode 75 – “The Whole Picture: Holistic, Personalized Therapy”
00:36 – Tiffany welcomes listeners.
01:05 - Tiffany is joined today by AiArthritis Voices 360 recurring co-hosts Bridget and Deb.
01:15 - Deb Constien was diagnosed with Rheumatoid Arthritis at the age of 13.
01:50 - Bridget Serrett has multiple autoimmune diseases and genetic conditions.
02:49 - Today’s topic is personalized, complementary, non-pharmacologic therapies.
03:50 - In order to manage a systemic, whole-body disease, we need holistic treatment options.
05:36 - Deb is a dietitian, although she is currently medically retired.
07:00 - Deb did not have access to complementary therapies when she was younger because they are expensive and not covered by insurance.
07:41 - Deb does not have any inflammatory triggers, so she did not find relief from any particular diet.
09:09 - Always tell your doctor if you are taking any supplements because they need to know anything you are taking to manage your medications.
09:21 - Bridget has tried every complementary therapy she could find.
09:38 - She also has found that most people do not have access to quality complementary therapies due to prohibitive costs.
10:47 - Tiffany has always been interested in complementary therapies, especially exercise.
13:30 - There is an access barrier for most patients to the recommended complementary therapies because most are not covered by insurance or national healthcare systems.
14:28. - Data drives access, but the voices of patients about their need for access are also. Important to eliminating barriers to these therapies.
15:21 - Tiffany explains clinical practice guidelines.
16:28 - Clinical practice guidelines provide justification for access to insurance companies and national health programs.
17:07 - Deb is on the panel for the American College of Rheumatology to develop clinical practice guidelines for holistic, complementary therapies.
17:15 - Deb and Tiffany explain the ACR panel process for developing clinical guidelines.
23:53 - Many people have a limited amount of covered physical therapy sessions per year, which can lead to difficult choices about how to prioritize health needs.
26:35 - Personalized treatments are unique to the individual, so what works for one patient may not work for another.
29:01 - The elimination diet requires a lot of discipline and consistency to even find out if it works for someone.
30:52 - Access is important, and having the ability to find the combination of therapies that work for a patient is critical to successful treatment.
32:10 - Tiffany discusses the AiArthritis initiative in partnership with FORWARD National Databank for Rheumatic Diseases to collect patient information and conduct research to try and improve early detection / intervention and patient individuality as it relates to precision medicine and personalized therapies.
35:39 - Even Dr. Al Kim who is very invested in holistic guidelines does not spend much time during patient appointments on complementary therapies because the subject is currently very nebulous and inaccessible.
37:18 - There is some concern that unethical actors may take advantage of vulnerable patients when we incorporate providers that are not part of the traditional medical field.
40:17 - Chronic pain is getting its own code in the healthcare coding system.
40:43 - Tiffany explains the ICD-11 coding system and how this will help patients.
42:33 - Deb attended a EULAR session called “Not Another Pill: Integrative Pain Management Approaches” at the 2022 EULAR Conference in June.
43:40 - The Biopsychosocial Model is the gold standard for addressing chronic pain and includes a requirement that providers believe their patients and value them.
47:23 - Being dismissed by doctors causes significant delays in diagnosis and access to treatments, which contributes directly to poorer patient outcomes.
49:23 - Having a code for chronic pain may help eliminate barriers to treatment options that result from doctors being afraid their licenses will be in jeopardy with government regulating authorities for prescribing controlled substances too often.
50:51 - When patients go to a doctor who doesn’t believe them it can cause PTSD within the aiarthritis patient community.
52:24 - Sometimes when patients believe they are receiving treatments in blind placebo trials, they report improvement even though they are not really receiving any medication, which is called the placebo effect.
52:41 - Researchers wonder if the placebo effect could help uncover a mind-body connection that could help treat chronic pain.
53:15 - For more information on the mind-body connection research, check out our YouTube channel for a video on this topic.
53:55 - Complementary therapies are necessary because we need options for people who want to use fewer or no pharmacologic treatments.
55:40 - We need to hear from you on this topic! Email us at podcast@aiarthritis.org or find us on social media @IFAiArthritis on all platforms.
56:03 - Visit our website (aiarthritisvoices.org) to join our AiArthritis Voices program.
58:20 - For more information on medical cannabis or to get involved in advocating for legal access to medical cannabis, you can connect with Bridget on Facebook @cprcofcolorado (new website coming soon).
1:00:38 - To continue this conversation, donate to support the show, or for information on any of our initiatives, please visit us @ aiarthritis.org.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
This is a Step 5 Episode*
In this episode, Tiffany, CEO of AiArthritis, is joined by Catherine Ames, from the Young Patients’ Autoimmune Research & Empowerment Alliance, both persons living with AiArthritis diseases and both who attended the 16th Annual Personalized Medicine Conference in May 2022. Precision Medicine (PM) may currently be in the cancer space, but it’s quickly moving into the autoimmune/autoinflammatory space and there are some things they want you to know. What is it? Why is it important to understand and what can you do to make sure you can benefit most from it as it enters our space?
They talk about its impact on prevention (yes, we said it), early detection, diagnosis, and even matching treatments based on genetic profiles and biomarkers (blood, tissues, for example). Also, PM may be a solution to capping the high cost of healthcare, which means it’s as much of a research issue as a public policy issue.
*All main episodes that air on the 1st Sunday of each month are either Step 2 in our 6 step problem solving process (first time the topic is on the table) OR a Step 5, which is a revisit to the table. In a Step 5, we are ready to take action to solve a problem (create a resource, ask to join a project, etc.)
Show Notes: Episode 74 – “EveryONE’s Voice Precisely Matters”
00:52 – Tiffany welcomes listeners.
01:12 - Tiffany is a patient living with non-radiographic axial spondyloarthritis.
01:32 - Tiffany is joined by Catherine Ames, a college student living with Lupus.
04:10 - Catherine is here today to represent the Young Patients’ Autoimmune Research & Empowerment Alliance which works to include patients age 16-23 in medical research.
08:00 - Catherine and Tiffany met at a conference on Personalized (Precision) Medicine.
08:28 - AiArthritis distinguishes between Personalized Medicine and Precision Medicine because Personalized Medicine is more about patient preference and Precision Medicine is based on biomarkers.
10:01 - The conference they attended was largely dedicated to treatment of cancer more so than treatment of autoimmune disease because cancer treatment really spawned the field of Precision Medicine based on genetic sequencing of excised tumors.
13:07 - AiArthritis and AREA are at the forefront of Precision Medicine research in the autoimmune arena because most experts don’t anticipate serious breakthroughs in the immunology sphere with regard to Precision Medicine until 2025 or later.
15:05 - The keynote speaker of the conference talked about the importance of teaching the FDA and other regulatory agencies about innovative research.
17:08 - Early intervention with Precision Medicine could reduce the risk of comorbidities and increase the odds of achieving remission.
18:30 - Precision Medicine is intended to be expanded beyond cancer to other spheres within medical care, but there are access issues within the current healthcare system, especially in the United States.
19:23 - Precision Medicine has the potential to decrease healthcare costs in any system by intervening early to avoid patients developing complicated and expensive conditions.
23:20 - One example of Precision Medicine applications in AiArthritis is the use of biomarkers within RA to predict more aggressive forms of the disease.
24:10 - The reality is that AiArthritis diseases require expensive treatments that impose a significant cost burden on all healthcare systems, but only a minority of patients will respond to any specific treatment.
26:20 - The current practice of trial and error of drugs that have never even been tested in a clinical setting on a specific subgroup of autoimmune patients is wasteful and inefficient.
30:47 - AiArthritis encourages patients to get involved in clinical research by participating in the FORWARD National Databank or via other means.
31:27 - Visit AiArthritis.org/research for more information on how you can get involved in any of our research efforts.
33:33 - The concept of Precision Medicine sounds wonderful, but many patients are facing seemingly insurmountable barriers to access to care that may make them reluctant to participate in data collection efforts that might help move the field along.
38:16 - High costs of healthcare are driving access issues within all healthcare systems, so Precision Medicine should eventually - by way of reducing costs - increase access for all people.
45:18 - If patients could find treatments that better matched their specific conditions, they could improve their quality of life even if their disease is too advanced for remission to be possible.
46:00 - Tiffany and Catherine discuss pharmacogenetics.
49:43 - Pharmacogenetics has the potential to help match patients with the right pharmaceutical therapy based on their genome.
51:12 - Pharmacogenetics also has potential to anticipate drug-related toxicity before a patient develops an adverse reaction.
54:08 - Visit AiArthritis.org/research or aiarthritis.org/advocacy to get involved in promoting Precision Medicine.
55:01 - You can find Catherine @ChronicallyCatherine on social media or email her at chronicallycatherine@gmail.com.
55:35 - Find Young Patients’ Area @yp_area on instagram or email them at youngpatientsarea@gmail.com.
56:29 - Tiffany thanks Catherine for her contributions to today’s episode.
57:03 - Tiffany invites listeners to participate in any of the ensuing 360its following this episode.
58:12 - If you have something to say about today’s episode, email us at podcast@aiarthritis.org or submit an anonymous comment at aiarthritis.org/rant.
58:56 - We are @IFAiArthritis on all social media platforms.
59:10 - Stay tuned for our brand new talk show website that will be premiering soon.
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Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
In this revisit to the table (Step 5 in our problem-solving process), Tiffany, Katie, Effie, Eileen, and Kerry discuss the many layers around the word “arthritis” including: 1) Misunderstandings around the word that can lead to delays in diagnosis, family and friend judgements, and the different type associated with “AUTO” diseases; and 2) Complexities that exist when trying to identify the AiArthritis from other potential comorbidities (Osteoarthritis, bursitis, enthesitis) and how clarity about this could help with detection, access to the right treatments, and overall better health outcomes.
This conversation takes many turns, all which address issues identified from lived patient experience. Why is differentiating arthritis types important? How many of us referenced family history to expedite diagnosis? How does public, family, and even doctor misunderstanding of our diseases play into diagnosis and exploring potential comorbidities? How accurate is the literature in regards to arthritis prevalence in comparison to what patients report to be true? They even started brainstorming the development of a new tool that could help the public, patients, and health providers better understand the layers of our diseases as well improve communication and overall disease journeys.
Now it’s YOUR turn to weigh in! There’s a lot to talk about, join us ‘at the table’ so, together, we can change the stories of tomorrow! Submit your comments here, at podcast@aiarthritis.org, on our social platforms at Facebook, Instagram, Twitter, or LinkedIn @IFAiArthritis.
Show Notes:
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- 00:53 Tiffany (CEO, non-radiographic axial spondylitis) introduces the show and co-hosts, Katie (Programs & Communications Manager, rheumatoid arthritis), Eileen (“Chronic Eileen” rheumatoid arthritis), Effie (“Rising Above RA”, rheumatoid arthritis), and Kerry (“Float Like a Buttahfly”, sarcoidosis).
- 3:13 Tiffany officially welcomes Elieen and Kerry as the newest recurring Co-Hosts!
- 3:37 Explains a new addition to the show - the “360its!”, where any topic or comment from the episode is eligible to spin off into different conversations in any communication format (facebook live, twitter,
- 4:37 Topic is around the word arthritis, as a Step 5 (revisit to the table) issue, because in the US it’s Arthritis Awareness Month and May 20th is World AUTOimmune & AUTOinflammatory Arthritis Day
- 6:35 Co-hosts start the conversation by answering the question, “Why do YOU think the type of arthritis associated with our diseases - and differentiating it from other types - is so important?” All co-hosts share their stories and perspectives.
- 11:17 In the stories shared, the co-hosts outline a journey from “What’s wrong with me?” to “Misunderstandings” to “public education” and “doctor education” and “overlap of types of arthritis (also Osteoarthritis) or other comorbidities.” If we (patients, public, families, doctors) better understood arthritis and the types we could improve detection, referrals, diagnosis and, in turn, improve quality of life, increase rates of remission, and lessen unnecessary disability. This can lead to better overall healthcare and improved costs for healthcare systems.
- 12:52 Tiffany opens the conversation to discuss anyone’s experience with relatives having our diseases. Did anyone say, “Did you have a history of autoimmune/autoinflammatory disease in your family and, if so, did anyone say to you when figuring out what was going on with you, ‘Hey, this person has XYZ, maybe you have something in that family?” They continue discussing this and determine in their cases the connection between family history and detection/diagnosis was not common. This is an opportunity to discuss further because family history and communication about it could expedite diagnosis.
- 17:18 Kerry puts this perspective on the table - Not all families talk about things like illness, so in those cases knowing family history is hard. But given we know AiArthritis diseases are part genetic, this could be a key factor that could either lead to quicker diagnosis, or prolong diagnosis.
- 18:16 Kerry - Talking about the statement “It’s all in your head” - “Once I had something visible - rash on my legs, swelling - I could say ‘I’m not making this up!” Bloodwork was fairly normal except a positive test for autoimmune thyroid, which led to a sign of diagnosis. But it took the visible plus some type of autoimmune direction in bloodwork to get there.
- Most agree, they only realized other family members had something similar after diagnosis. Could this be in part also because it’s not understood by families that ANY of out 100+ “AUTO” diseases counts as family history?
- Tiffany explains the importance also of knowing family history, as newer research is moving towards prevention - or at least catching the disease very early - based on certain biomarkers + known environmental triggers + family history.
- 21: 12 Conversation continues about family history when it comes to the doctor visit (not asked). Often this leads back to the patient trying to push testing and googling what they have.
- 22:37 Group starts discussing delay in diagnosis journeys, including overlap of symptoms and the arthritic component, and how important the right diagnosis matters.
- A lot of delay in diagnosis for Kerry came from the doctors not understanding so self advocacy became necessary to help them figure it out.
- When you have a rare disease, less knowledge is often present and, therefore, more self advocacy necessary.
- 28:48 Effie revisits the topic of family history and how culture and heritage can impact conversation (“We don’t talk about family illness.”). Or, in her case, as immigrants, a lot wasn’t documented. This has, in part, encouraged her to start sharing her story to help others have those ah-ha moments.
- 31:11 There are different kinds of arthritis and some of us have more than one, which can lead to confusion in diagnosis (“You’re too young to have arthritis”, “You’re too old to have RA”) and family misunderstandings (“oh I have that too, it’s not that bad”). They discuss why it’s important for patients to know which type they have - or if they have more than one type. Also, how do we differentiate the systemic systems (part of our disease or comorbidity?)
- How does it overlap or is it separate? Is there a way to treat one differently than another and, if so, what should I know? How do I identify where my pain is coming from and what am I doing to trigger this pain - did my meds stop working or is this something new? Also, since our diseases are systemic and affect organs, too - that plays into this as well.
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39:05 This is a Step 5 episode, which means we have discussed these topics enough over the last year, including in this episode, to be at a point where we can head into Step 6 - which is creating a solution. In this case, a resource to help with identifying AUTO + Arthritis (and potential comorbidities) so we can improve detection, diagnosis, and disease management. Things to consider in developing this tool:
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- Name your pain. What kind of pain do I have? (joint, enthesitis, non-joint, fibro pain, bursitis pain?) Where is it located? (Symptom chart) - What disease do I have? How can this resource be used to share with doctor? - Make it patient-led, then doctors review. - Potential comorbidities - Include building vocabulary and considerate of families/juveniles
- 42:50 Group discusses why this tool is also important - often doctors will not connect the dots on their own. Kerry gives an example of a doctor considering pituitary gland involvement because, “That could cover many varied issues.” It’s THAT line of thinking, “What could cover many varied issues?” that doctors need to consider.
- 44:04 “Those with sarcoidosis are thought to have lung involvement so if that’s missing as a first symptom it may be missed.”
- The prevalence of arthritis, and what doctors believe is the correct percentage, may differ from patient-reported prevalence. They give examples of Sarcoidosis. It's thought that only 30% have arthritis, but Kerry hasn’t met one person without it. Recently in Still’s Disease (which includes systemic JIA), research has shown about 25% of patients do not have arthritis - especially as a first symptom. Yet the diagnosis triangle for Still’s taught to doctors is look for arthritis, rash, high fevers.
- Is arthritis part of the disease or a comorbidity?
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49:45 Katie mentions pain evolves in perception and simply getting used to it over time (pain is normal). How does this play into pain reporting? How does measuring pain and personal tolerance and mindset play into this?
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55:25 What if the arthritis isn’t so bad and it’s the AUTO features that dominate. How can we communicate this? The group also discusses the importance of not eliminating arthritis as a clinical component altogether if it is or was part of your disease. (It’s important for our tool. Is it earlier in their disease, later, a later comorbidity/OA developing?)
- 59:05 Tiffany wraps up the show, starting by inviting the audience to weigh in on the tool we started to brainstorm about in this episode. You can submit your ideas at podcast@aiarthritis.org, via messenger on social media @IFAiArthritis, social media posts about it.
- 1:01 Kerry, “Float Like a Buttahfly” can be found on Twitter and Instagram @ButtahflyK and on Facebook Float Like a Buttahfly; Effie Instagram and Twitter @RisingAboveRA and on YouTube RA and Myself, blog: RisingAboveRA.com; Eileen, “Chronic Eileen” can google this name and also writes for CreakyJoints, Healthline, and Arthritis Research Canada.
- 1:02:40 You can find AiArthritis at @IFAiArthritis on social media or on the web at aiarthritis.org/talkshow. While there please Tip the Team by giving a donation so we can continue providing this amazing resource!
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Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Join Tiffany and Deb, both persons living with AiArthritis diseases, then Tiffany and John O'Brien, CEO of the National Pharmaceuticals Council, as they put the topic of importance of innovation & treatment access in research and public policy 'on the table'. Learn how YOU can join efforts to impact change!
Who is 'at the table'?
- Tiffany Westrich-Robertson, CEO AiArthritis, person living with non-radiographic axial spondyloarthritis
- Deb Constien, AiArthritis Volunteer, person living with rheumatoid arthritis
- John O'Brien, President & CEO of the National Pharmaceutical Council (NPC)
In this two segment episode, first join AiArthritis team - Tiffany and Deb - as they put a new show topic "on the table" for the first time: the importance of innovation in research and patient access to the treatments that are best for their individual characteristics. In this episode we introduce questions, like "Why does a treatment work for you and not me?" and "What if we don't tick all the boxes (are 'atypical', including having comorbidities) - how can I still access the best treatment for my unique needs?" The bottom line is that AiArthritis diseases are unique to the individual, and as a result, we may be better off using treatments that are not the same ones our health systems tell us we need to use. For change to happen, we need to hear stories from many patients (not just a few), but there are several barriers to achieving this. However, AiArthritis is working on a solution that involves creative, patient-led public policy classes focusing on four topics - two which are discussed today (innovation in research and value assessments). Listen to Deb and Tiffany explain more!
In the second segment, Tiffany welcomes John to the table, as his organization - the National Pharmaceutical Council (NPC) - published a few of the reports AiArthritis is referencing in our courses. Together they explore how new research can lead to improved patient care and potential access to the right treatment for individualized need and based on patient-doctor decided management. Finally, they start the conversation about value assessments (a complex and difficult process of assigning value and cost to medications), highlighting both an understood need for healthcare systems to provide fair access to all, while considering patient uniqueness and the future of personalized and precision medicine.
Show Notes:
Part One: Tiffany and Deb talk about the importance of innovative research and getting more patient voices involved in public policy (both which influence access to therapeutic care).
:53: Tiffany introduces show, herself (nr Axial Spondyloarthritis), and co-host Deb introduces herself (Rheumatoid Arthritis and several comorbidities)
- 2:25: Tiffany explains the topic of the show today, which involves patients who are not typical, including those with many diagnoses or who do not “check the boxes”.
- 3:35: Today we will focus on the importance of being “average” and “not-so-average”. The time being now for all of us to come forward and speak out in regards to our access to therapies and disease management - through public policy and research efforts. This is especially important for those who don’t tick the boxes, or a model, textbook perfect patient.
- 4:25: Tiffany mentions the second half of the show will feature a guest, John O’Brien, President & CEO of the National Pharmaceutical Council (NPC) who will be discussing their paper, “The Myth of Average”, and the importance of innovation in research and understanding value assessments (or the processes around health systems procedures that help determine which medications we are able to access).
- This is a problem when we don’t all fit a ‘general patient population’ when we are thinking about policies that are centered around access for the average - and in a time when we are moving towards a world of precision medicine (treating the individual).
- How can patients come to the table and make a difference so we don’t lose access to options?
- 5:25: Tiffany and Deb discuss their patient journeys and, specifically, how they would not be considered ‘typical’, or classified in the group of general patient population. “We are all unique.”
- Tiffany further explains how her current diagnosis did not exist a decade ago, so thankfully for research her disease now has a name and treatments that work well for her.
- 8:45: Deb and Tiffany discuss how different therapies work for different people, which is important to understand. “What works for you may not work for me.”
- 9:27: Tiffany asks listeners to think about the evolution of our patient journeys and, as a result, the importance of patients/supporters to stay connected with their legislators (people partially responsible for access to healthcare) over time so they can see that our diseases are not static. They often evolve and, in turn, our treatment needs can change.
- 11:40: Tiffany and Deb discuss the analogy of using cough medicine. Why is “your” cough medicine better? We need to realize drugs in the same classes work differently because they have various differences that, in turn, react differently in each person’s body. “This is why AiArthritis is highly invested in precision medicine, or matching the right person to the right treatment at the right time.”
- We are also invested in personalized medicine, or personal preferences, which also factor in.
- 13:18: Tiffany states the organization's mission to help others, like them, have a voice - alongside other stakeholders as equals - so, together, we can solve problems that impact education, advocacy (public policy), and research.
- 13:45: Tiffany explains the role of ethics in healthcare access, referencing a paper she authored in 2015, the Ethics of Step Therapy, in collaboration with two bioethicists and “bestie” Kathleen Arntsen from Lupus and Allied Diseases, Inc., where AiArthritis learned all about the different roles of ethics for both health providers and doctors. She specifically explains the ethical Principle of Justice, which involves the responsibility to ration healthcare for all. “If we are going to see change, we need to meet in the middle, respectful of the agencies who need to consider access for all."
- 15:50: They discuss show design, in that this is the first time this topic was put ‘on the table’. In 2022, we are starting “360its”, or spin off episodes and segments that will be in a variety of methods and platforms so all people can contribute to this conversation (globally). Then, together, we can all be part of the solution in regards to healthcare access and desire for innovation to continue.
- Keep in mind, perspectives may vary depending on where you live. For example, in socialist societies, value assessments - which tend to favor general patient populations - may be more accepted.
- 17:05: They discuss research and ‘atypical’ factors into this. Cost savings is often based on citing credible research, which is mostly conducted in general patient populations (or whomever signs up to participate!)
- 17:50: Patient stories are vital to helping legislators humanize health access issues, but it’s always a challenge finding stories - or the stories are from the same people. So AiArthritis spent 2021 figuring out why and, as a result, identified several barriers to participation, including lack of clarity and confidence.
- As a result, AiArthritis is launching a patient-led creative classroom program in 2022 that will cover four topics, including innovation and value assessments. Goals: 1) Increase number of patients/supporter voices in public policy and story sharing (including demographic contribution), 2) Recruit our own organization ambassadors, 3) Build confidence, 4) Identify the issue in relationship to self and others (patient to patient invitation to learn how to have a voice).
- 30:10: They discuss how this conversation will 360it and how to get involved in this new program: https://www.aiarthritis.org/advocacy
- 30:55: Part of the program will involve a program library of resources, including featuring The Myth of Average publication by the National Pharmaceutical Council (NPC)- which is why we are talking to John from the NPC next.
- 30:23: Tiffany thanks Deb
Part Two: Tiffany and John discuss innovation in research and value assessments (measurements used, in some cases, to determine patient access to certain treatments)
- 31:39: Tiffany welcomes John to the show, who introduces himself and the NPC
- 32:58: Tiffany explains John is ‘at the table’ because AiArthritis, who has developed a new patient-led public policy education program, is referencing several of the NPC’s publications for the class library (including the Myth of Average). The piece is in keeping with AiArthritis’ core priorities to help foster precision medicine and assess the right treatments for the individual.
- 35:42 John explains that innovation means the never ending search for cures and new treatments and why this resonates with him.
- Why does one treatment work for one person and not the other?
- Uses the example of Tiffany’s journey, as she was diagnosed in 2009 before her disease had a name (nr-axial spondyloarthritis). So researchers were finding solutions for people like Tiffany, the Mystery Patient, and that’s innovation.
- “This is all why it is essential that patients and researchers stay connected during the development process.”
- 39:00: Patients who are atypical, but who are lumped into the general patient population model, may risk being on the wrong treatment and that can have negative consequences. “Putting me on the right treatment that was indicated for my disease made a world of difference. It was like night and day.”
- 40:07: Tiffany tells us a story about her quality of life challenges prior to access to the right treatment, which involved the inability to get out of bed in the morning.
- 40:53: Also, people like Deb - who have exhausted all treatments - what do these patients do? Patients like us need to understanding the importance of research and the public policies that can influence our access to the treatments best for our individual needs. Join AiArthritis’ efforts at https://www.aiarthritis.org/advocacy
- 42:15: John talks about the importance of the patient-doctor decision for treatments, which can be sidetracked if the healthcare system does not cover that therapy.
- Researchers ask, “Why do different individuals have different responses to the same treatments?”
- Furthermore, if the treatment was designed for the general patient population, how will this impact a patient’s access to their doctor recommended therapy?
- The Myth of Average report highlights that age, genetics, ethnicity, behaviors, biology, and other individualized factors are not always considered when rationing treatments on a population level. “Patients should have access to the treatment that their doctor believes is clinically relevant for them.”
- 48:00: Tiffany talks in detail about AiArthritis’ Ethic of Step Therapy investigation (2015) - which has relevant takeaways regardless of health system (location): patient-centeredness, fairness, clinical relevance.
- They revisit the Principle of Justice (from Part One with Deb)
- The ah-ha moment that led to the conclusion of the paper was a result of Tiffany’s inability to be included in clinical trials because she was an atypical patient. She realized that clinical trials include patients who meet a general patient population criteria - the same research that insurance companies cite to justify their cost savings. However, in cases like Tiffany - where the patient is atypical - then the decision should default to the doctor, who is ethically obligated to treat to the individual characteristics of the patient. “Drop mic.”
- 50:44: This ethics paper led to the research work - and public policy work - we do at AiArthritis, in part, because a lot of money goes into this research using the general patient population, yet only 40-60% will respond once that drug goes to market (because the rest of us are atypical). “We need more treatments” for the rest of us.
- Shout out to Autoimmune Association and the Let My Doctor’s Decide Initiative, which AiArthritis serves as an advisor.
- 52:02: John tells a story about how patients/supporters often understand the mechanisms of their disease and the different treatments researchers as well as the company themselves. “So not just at this table, but we have so much to learn from each other - especially when it comes to what the condition is like in the real world.”
- 53:25: John talks about health technology assessments (value assessments), what they are - including some access barriers they may cause (due to lack of transparency, caregiver burden, and drug measurement vs personalized experiences).
- Provides an example of employer based insurance (USA) if an employee is unable to work due to inability to access the best treatment for them.
- 55:42: John defines health technology assessments (HTAs), including the history of them and further discusses Quality Adjusted Life Years (QALYs) - which in his opinion can be discriminatory for people living with disabilities.
- 1:00:08: There is a need to cut costs and have a well distributed system of rationing spending. Even on some HTA websites in their own explanation of how these work they state the process is not designed for the individual but rather for the population. However, in a world that’s moving towards precision medicine, and considering the patients who have exhausted all treatments, how do we ensure value assessments can be fair and considerate of the new science?
- They further discuss the QALY.
- No one is telling employers who are choosing health plans (USA) that if their employee isn’t able to work because they don’t have access to the right treatment that it could end up costing them more in time off, hospitalizations, and overall less work production.
- “This is the risk of using QALY’s when trying to establish population based coverage decisions.”
- Tiffany confirms that it’s difficult to work if you have brain fog, pain, or fatigue.
- 1:03:35: Tiffany reminds the audience that now in 2022 we are spinning off from each episode - any bullet point, any topic segment - and continuing the conversation in a variety of ways so we can include all of you in the conversation. Called #360its. Patients, supporters, legislators, researchers, pharma, etc - we need you all at the table!
- “The people who I always learned the most from are the patients.” Patients need to share their experiences.
- 1:06:00: Tiffany mentions a good 360it would be to discuss the continued need to use shared decision making in healthcare (patient-doctor decisions), because that is also relevant in regards to accessing the treatment that may be innovative and new (if that is the right treatment for us). Personalized and precision medicine consideration.
- 1:07:20: The research the NPC does is to help patients gain access to medications and foster innovation. “What If Groundbreaking Medicines Never Existed?” paper, which outlines where we would be today without drug innovation. Tiffany suggests that people read this, then let’s do a 360it to discuss.
- 1:09:15: Tiffany reiterates the reason John is here is because the work the NPC does is in line with our AiArthritis work to fight for precision medicine (access to the right treatments at the right time for the individual person's needs). As such, we are including a few of their reports in our resource library in our new patient-led public policy education program. Learn more and sign up at https://www.aiarthritis.org/advocacy.
- 1:10:10: Tiffany thanks John for pulling up a seat at the table.
- 1:10:31: Tiffany closes out the show. If you like the show and listen on your favorite podcast station, please subscribe and give us a rating.
- Find all the episodes at our website at www.aiarthritis.org/talkshow
- Also, if you want to help us continue offering this program, please consider a donation, because your support makes this show possible!
- Find us on all social media channels at @IFAiArthritis where you can message us to have a seat at the table or email us at podcast@aiarthritis.org.
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Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
A revisit to the table with Deb Constien, Estela Mata, and Tiffany Westrich-Robertson as they continue discussing the dynamics of support - including needs of the patient as well as others in the patient's support circle. Building on Episode 43 and Episode 48, they start a support tracking tool to help patients and families/friends better assess their needs and how, together, we can work to address them! You're invited to help us continue developing this aid - find out how!
*All our main 1st Sunday of the month episodes are either an initial "put the topic on the table" episode (Step 2 in our organization's 6-step problem solving process) or a "revisit to the table" episode, where we build on a past show because we have moved forward in developing help, tools, or projects around the issue (Step 5 in our organization's 6-step process). Learn more about our process and mission.
Show Notes:
0:55 - Welcome & introduction by Tiffany Westrich-Robertson
1:28 - Introductions to Deb and Estela
1:45 - Estela is a Founder of Looms 4 Lupus, an organization that focuses on the supporter network for lupus patients and others with chronic illness.
2:34 - Deb is a recurring co-host and long term dedicated AiArthritis volunteer.
3:35 - Tiffany explains the mission of the show to put a topic 'on the table' OR revisit the topic, which is what this episode is about. It is based mostly on Episode 43 It's a Family Affair (https://www.aiarthritis.org/talkshow-ep43). This is a step “5” in our six step process (learn more about the stepshttps://www.aiarthritis.org/about-us).
4:54 - The support person can be a family member or a friend, who will have diverse support needs depending on their personalities and coping skills (among other things).
6:11 - Tiffany explains the addition of the #360it to the episodes. Expanding the show to as many formats as we can to keep the conversation going, so that all people can truly have a seat at the table.
8:35 - Estela discusses the impact of Juana's diagnosis, including the different reaction of the family members.
11:08 - They talk about the importance to figure out roles and how to give support from each perspective and personality. This includes "Supporting the support" - helping the spouse and the children figure out what support they need. Also, what can we all do to address support needs for different people?
12:25 - Deb shares a similar story about her family members response to her diagnosis. (her mothers guilt, and the “cheerleader” role of family members).
13:40 - Communication plays a big role because needs can vary so much and change over time.
14:04 - Sometimes people need to go outside of their family circle to get the support that they need. Friends can be your primary supporters.
15:40 - Deb shares a story about an early experience with her husband, who left her after surgery with a toddler and other complications. While she 'gave hints' he should come home, she learned he needed more information regarding how she needed to be supported.
19:20 - Tiffany talks about the evolution of roles and communication dynamics with your support systems over time. She introduces the start of a guide to help identify your support network and the roles they play in the journey. Step One: Who is in your Support Network?
21:28 - Deb’s provides examples of her support system, which includes her extended family members, friends, and church family. This leads to Step Two: Assign Roles.
23:04 - Estela and Tiffany expand into Step Three: What are the needs of each person? Once you identify your supporters then determine who you think you need to go to for each need. Be sure to communicate with each person so they are clear about your expectations.
30:23 - Tiffany mentions considering Step Four: Evolution of Needs, which includes disease journey shifts and new people entering your Support Network.
33:26 - Remember, it's a learning curve for everyone. There will be trial and error but just be patient with each other. People take their own meaning from things, so miscommunications happen. Have a discussion (even repeat back to confirm) to make sure everyone is on the same page. You have to reassess every time to prevent resentment and misunderstandings. Not everyone can fill every support role- and that's okay.
38:32 - Deb addresses disease misunderstandings as a main cause of patient needs for support. She suggests developing a QR code for people to immediately have access to information on our conditions.
40:46 - They discuss additional things to consider, such as learning more about the disease, symptoms, treatments, as well as considering various means of providing support.
47:30 - Tiffany invites listeners to contribute to building this tool and using it.
VIEW OUR OUTLINE HOW TO START YOUR SUPPORT AID HERE
48:00 - Tiffany explains how we are going to "#360it" this episode.
49:08 - Estela's sister, Juana, will host one of the #360it spin offs, focusing on the supporter switch (when the patient turns into a caregiver, for example, motherhood.)
50:16 - #360it spin off episodes can go anywhere - Twitter chat, tiktok, Facebook posts, mini episodes - and can be done by ANYONE! If you want to add to this conversation by sharing your recommendations or stories let us know. You can also just tag us on social @IFAiArthritis and use the hashtag #360it.
52:00 - You can find Estela and Looms for Lupus on Instagram, Twitter, and Facebook @looms4lupus, and Estela on Instagram, Twitter, and Facebook @estelamata. Don’t let the name fool you, they focus on all autoimmune conditions, overlapping mental health conditions and are here to support you. What all these conditions have in common is the need for all of us to support one another!
Find all our projects at www.aiarthritis.org/initiatives and make sure to sign up FOR FREE (all stakeholders) to our AiArthritis Voices program to learn about all our opportunities to be at the table! www.aiarthritis.org/aiarthritisvoices.
Also please consider a donation to the show by Tipping the Team! We can only continue providing resources like this show with the support of our community. DONATE TODAY!
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Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
In this episode, AiArthritis CEO and person living with Axial Spondyloarthritis - Tiffany Westrich-Robertson - and Dr. Lisa Zickuhr - rheumatologist from Washington University - continue the conversation around shared-decision making and its importance around patient-rheumatologist communication. They focus on a research project both are involved in, and that YOU can join! The project aims to explore patient-reported and rheumatologist-reported barriers to virtual care and, in turn, work towards developing shared-decision making guidance for rheumatologist to adopt in e-health situations.
They also took the opportunity to break out into a segment on COVID-19 and shared-decision making, This segment will be separated from the main show soon, available as it's own minisode, as a "360" spin off from our RheumyRounds and COVID-19 & AiArthritis episodes.
SHOW NOTES
00:54 - Tiffany welcomes listeners.
01:04 - Tiffany is the CEO of AiArthritis, one of the many patient co-hosts from around the world, and a patient living with non-radiographic axial spondyloarthritis.
1:30 - Tiffany is joined today by Dr. Lisa Zickhur, rheumatologist from Washington University Rheumatology and the school of medicine. Lisa also has an interest in education and helps train fellows, or “doctors in progress.”
2:41 - Currently Lisa is working with Tiffany and AiArthritis on a shared decision making project - especially in the virtual environment, which is the topic revisited today.
4:50 - Tiffany revisits the methodology of the show, explaining there are 6 steps to all the work done at AiArthritis and the talk show episodes fall into Step 2 or Step 5. Community input happens in Step 3, which we also circle back to after Step 5. Step 6 is when we create resources based on all the input.
5:31 - This is a Step 5 episode
5:50 - Lisa explains her experience in shared decision making and teaching rheumatology fellows.
6:46 - Tiffany revisits the first episode where we “put the topic of e-health on the table” after she and fellow patient Co-Host, Deb, attended EULAR 2018.
7:45 - Shout out to Dr. Auralie Najm, who was speaking at EULAR 2018 about e-health, where there was a debate that e-health was still at least a decade away from implementation.
9:01 - E-health is thrust upon us in 2020, around the time shared-decision making builds in popularity.
9:44 - Shout out to Dr. Al Kim, or Dr. Al, or “just Al”, also from Washington University, who also discussed patient-doctor communication in the original RheumyRounds series, which included addressing “Dr. Google”. But with COVID onset, patients stopped coming to office visits with knowledge and instead turned to their doctors for complete guidance.
10;31 - Lisa speaks from the doctor's perspective regarding early COVID challenges.
11:07 - Tiffany and Lisa talk continue discussing how shared decision making has evolved and now “it’s everywhere.” And it’s why it’s so important right now.
12:25 - Doctors aren’t all still great at shared decision making and it’s good practice for patients to learn how it works and how to engage in it.
13:02 - AiArthritis already has several projects, including this new one with Lisa and Washington University, underway. Learn more at www.aiarthritis.org/initiatives or sign up (FREE) for AiArthritis Voices to stay informed of all opportunities we have: www.aiarthritis.org/aiarthritisvoices.
13:46 - They are also creating tools to help teach patients, fa
14:09 - Lisa talks about another project just completed around e-health, which was to take general telehealth competency guidance and revise it to be more meaningful in rheumatology virtual visits (and for use by rheumatology fellows in training). Some were specific to shared decision making. Tiffany was the one patient representative on the panel of twelve.
17:30 - Lisa tells the audience about the new project Washington University is working on with Tiffany from AiArthritis, along with Catherine McCarthy from the Veterans Hospital and Emma Nolan-Thomas who is a medical anthropology student (and person living with Sjogren’s Syndrome), which aims to identify the best shared decision making practices in virtual rheumatology encounters.You can get involved by signing up at www.aiarthritis.org/initiatives.
19:29 - Tiffany further explains a methodology originally developed by AiArthritis, where patients - trained as professional focus group moderators help facilitate the research. This is incorporated into the Washington University project, with Tiffany as one of the moderators.
21:39 - Special shout out to Washington University for their work including patients as partners in their work.
24:39 - How to get involved in the Washington University project. These focus groups are underway. If spots fill up, you can still be part of the conversation with AiArthritis on this topic. Just sign up to learn more about this and our other research projects at www.aiarthritis.org/research.
26:32 - TIffany and Lisa break out to discuss the importance of continued shared-decision making as COVID-19 vaccination recommendations continue to evolve. They specifically cover the topic of the 4th vaccine for persons immunocompromised. This is going to become its own “360” spin off segment under our RheumyRounds series.
38:44 - AiArthritis has created a letter for patients having issues gaining the 4th dose to share with pharmacies. You can find this and other guidance at www.aiarthritis.org/covid19
41:00 - Tiffany and Lisa close out the episode. Tiffany mentions to visit us on social media at @IFAiArthritis all platforms, email us at info@aiarthritis.org, and please support the show with a donation on our website! www.aiarthritis.org/donate.
Find all our projects at www.aiarthritis.org/initiatives and make sure to sign up FOR FREE (all stakeholders) to our AiArthritis Voices program to learn about all our opportunities to be at the table! www.aiarthritis.org/aiarthritisvoices
________________________________________________________________
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
In this episode, Tiffany Westrich-Robertson (AiArthritis CEO) and Katie Simons (Senior Programs & Communications Manager) talk about the heart and soul of our organization - the volunteers! Meet five volunteers from around the world - Deb, Katie, and Leslie from the United States, Pooja from India, and Judy from Australia - hear from them just how much they've accomplished by joining our team and the impact they've helped us achieve! Learn more about many of our programs and ways YOU can get involved in 2022! Patient voices and all other stakeholders welcome!
Learn more about the following programs mentioned in the episode:
- AiArthritis Voices
- AiArthritis Voices 360
- RheumyRounds
- A Community Team (ACT) - first immunology Innovation in Research winner, Celgene 2015
- A Community Team (ACT) II - utilizing data from atypical patients to justify when it's time to ensure treatment decisions are made by their doctors, who are ethically obligated to treat to the individual needs of patients.
- World AiArthritis Day
- Still's Disease Awareness Day
- Preparing Patients for Precision Medicine
- COVID19 - Actemra Shortage
- COVID19- Shared Decision Making
- Go with Us to Conferences
- NEW IN 2022 - Advocacy/Public Policy Creative Patient-Led Learning!
Sign up to volunteer at aiarthritis.org/volunteer !
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Episode 69: Volunteering with AiArthritis
00:52 - Tiffany welcomes listeners.
01:04 - Tiffany is the CEO of AiArthritis and a patient living with non-radiographic axial spondyloarthritis.
1:11 - Tiffany is joined today by Katie, the Senior Programs Communications Manager at AiArthritis and a patient living with rheumatoid arthritis.
5:50 - Tiffany shares the origin story of AiArthritis as an organization.
14:20 - Tiffany and Katie discuss the role of volunteers in the AiArthritis organization.
16:41 - Judy - a volunteer from Australia - gives her volunteer testimony.
19:43 - AiArthritis strives to provide accurate information and a community space for aiarthritis patients.
22:42 - AiArthritis has developed a free online platform called AiArthritis Voices for all stakeholders to connect and find volunteer opportunities.
25:15 - AiArthritis provides information to patients about new treatment options.
25:49 - Deb Constein - a volunteer from Madison, WI and recurring co-host - gives her volunteer testimony.
32:17 - If we are working on something, volunteers have the opportunity to work on it!
35:49 - Patrice - a volunteer from California and recurring cohost - gives her volunteer testimony.
36:33 - Patrice is a great example of how many initiatives you can be involved in even as a new volunteer.
41:59 - Leslie - a volunteer from Michigan - gives her volunteer testimony.
45:38 - Pooja - a volunteer from India and recurring co-host - gives her volunteer testimony.
54:16 - If you are interested in advocacy, visit aiarthritis.org/advocacy
54:24 - Or visit aiarthritis.org/volunteer to learn about many opportunities for getting involved!
This week join your patient co-host Danielle Dass as she reports back on her experience attending an American Food and Drug Administration (FDA) Public Meeting on behalf of the International Foundation for Autoimmune and Autoinflammatory Arthritis. The meeting was intended to gather information from patients, medical professionals, and industry personnel about the accessibility and utility of safety communications regarding medical devices to better inform FDA practices.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis patient community. This means sometimes we send representatives to participate in events hosted by regulatory agencies like the FDA or the European Medicines Agency (EMA). In this episode, Danielle will explain how you can get involved in this meeting and how you can participate in future opportunities.
After listening to the episode, if you would like to view the FDA safety Communications about medical devices or any other products, you can do so here: FDA Safety Communications
If you would like to leave feedback or comment on the safety communications linked above or any of the issues from the meeting discussed in the episode, please visit FDA Public Comment by January 19, 2021.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 53 – “FDA Public Meeting Opportunity - Patients "at the table”
00:53 - Danielle welcomes listeners
01:05 - Danielle is a patient living with Rheumatoid Arthritis and Axial Spondyloarthritis
01:34 - Today’s episode is about Danielle’s experience participating as a panelist in a public meeting for the American Food and Drug Administration (FDA) about safety communications regarding medical devices
02:08 - AiArthritis seeks to center the patient voice in all conversations in the medical community that impact patients living with AiArthritis Diseases
02:21 - AiArthritis patients often use both implanted and assistive medical devices
03:39 - AiArthritis will use AiArthritis Voices to put stakeholders in touch with volunteers who are interested in participating in things like conferences, public meetings, and other events
05:34 - Danielle talks about the experience of participating as an equal stakeholder and encourages other patients to get involved
09:03 - AiArthritis was the only organization that sent a representative to speak for adult patients at the FDA meeting
09:18 - Danielle explains the purpose of the meeting and what types of information the FDA is seeking
12:23 - The FDA is particularly interested in getting safety information communicated to people who do not have access to the internet, but they did not invite anyone to the panel who could speak to that
13:23 - Danielle explains how listeners can submit comments that will be read by the FDA about safety communications
15:32 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org or visit aiarthritis.org/aiarthritisvoices to continue this conversation with us
15:57 - Danielle invites listeners to connect with us on all social media platforms @ IFAiArthritis or email us @ podcast@aiarthritis.org
16:06 - Danielle thanks listeners and asks everyone to consider supporting the show by donating at aiarthritis.org/talkshow
In this episode, AiArthritis CEO - and person living with axial spondyloarthritis - throws a topic on the table that everyone can relate to...ranting.
We all experience situations of frustration, when something we believe in, we want to happen, we wish could be different hits the point where we must vent. Sometimes that vent is to ourselves, other times it's public for all to see. We rant for support, to bring change, to be heard, or to get something off our chest. Regardless of the reason, sometimes it's just necessary.
Tiffany introduces two issues that are directly related to ranting. The first builds on years of wanting for Patient Organizations to be more accepted and involved at American College of Rheumatology (ACR) annual conventions.
Are you affiliated with a Patient Organization - anywhere in the world - part of the rheumatic or musculoskeletal disease community and interested in uniting with other groups so, together, we can work towards more inclusion in future ACR meetings? Then CLICK HERE to sign on. OR, if you are affiliated with a research collaborative group (research institute, databank, government) and would like to sign on to support increased Patient Organization participation in future conferences, you are also invited to sign. SIGNATURES REQUIRED NO LATER THAN DECEMBER 15TH, 2021!
A letter just for patients who want to have a voice in future advancement of a Patient Track at future meetings - this will be available in January 2022!
Then, Tiffany introduces a new initiative at AiArthritis - Caution: Rant Ahead! Realizing there is no where in our community for people affected with AiArthritis diseases to vent privately, we started a venting platform. Submit your rant, which will not be visible to others outside of our organization. Submit anonymous or leave your name and email, it's up to you. Rants submitted may be discussed on future episodes of this show, on social media, or if enough patients rant about the same issue then maybe even a project! Submit your own rant here: https://www.aiarthritis.org/rant
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Episode 68: RANT AHEAD! Together We Cannot Fail
00:52 - Tiffany welcomes listeners.
01:06 - Tiffany is the CEO of AiArthritis and a patient living with non-radiographic axial spondyloarthritis.
05:28 - One of the programs we have at AiArthritis is “Go With Us to Conferences” which is an initiative to bring patients with us to the two major scientific conferences we attend every year: ACR (American College of Rheumatology Annual Conference) and EULAR (European Alliance of Associations for Rheumatology).
07:20 - This year when Tiffany registered the team attending for 2021, she was annoyed that there was no pass option for Patient Organizations.
09:28 - AiArthritis did not want to attend as sponsors of a booth as we have in past years because our team cannot attend the sessions if they are working a booth.
12:10 - ACR offered passes only for individual rheumatology professionals and members of the press.
14:08 - ACR has an extensive list of individuals who should be members, but patients, patient representatives, and patient organizations are not included on the list.
15:09 - Tiffany made a post on Facebook about her frustrations that patient organizations are excluded from the ACR Annual Conference and Membership.
15:23 - The post received a lot of attention from other patient organizations and patient advocates who have also experienced feeling unwelcome by the ACR.
15:44 - The ACR contacted Tiffany and scheduled a meeting to discuss her concerns.
17:00 - ACR has agreed to include patient representatives and patient organizations in membership and registration options moving forward.
19:52 - There is an open letter other patient organizations can sign on or before December 15, 2021.
21:18 - A letter for patient representatives will be available in January of 2022.
21:34 - You can find all the sign-on letters at aiarthritis.org/ACR
21:43 - This experience led to the realization that patients need a place to rant about issues they are facing in the AiArthritis community.
22:18 - AiArthritis is adding a button on our website that patients can use to rant or vent privately about problems they are having without judgement.
22:37 - Topics that receive the most traffic via this button will become show topics and organizational initiatives.
23:11 - This feature can also be found at aiarthritis.org/rant.
23:27 - Find us on the web at aiarthritis.org or @IFAiArthritis on all social media platforms.
Be sure to check out our top-rated show on Feedspot!
This week join your recurring patient co-hosts Tiffany Westrich-Robertson, Katie Simons, and Deb Constien as they discuss the importance of making informed decisions in the management of aiarthritis diseases in unprecedented times. Our hosts will tackle this issue - as well as the related Actemra shortage, which is forcing patients, like Deb, off of the medications that work best for them in order to accommodate hospitalized COVID patients (most which are unvaccinated).
In order to participate in shared decision-making, patients must have access to accurate and updated information about treatment options, vaccinations, and other pressing health concerns. But how do you know the information you are receiving is accurate in a world where anyone can publish a study without peer review or share a fake website on social media? How do you make the decision that is best for you, your family, and your community when faced with opposing messaging from multiple sources? And what happens when other people’s poorly-informed decisions impact your access to the medicine you need to function?
This is an important episode for everyone to hear whether you are a longtime patient with an aiarthritis disease or a member of the public with no known connection to an aiarthritis patient. Decisions have consequences, and sometimes the consequences impact other people you may not even know.
Please read our Press Release about the Actemra shortage and share with others so they can make fully informed decisions about vaccinations.
If YOU have been impacted by losing access to Actemra, tell us about it HERE.
Episode 67: Show Notes
00:52 - Tiffany welcomes listeners.
01:12 - Tiffany is a patient living with non-radiographic axial spondyloarthritis.
01:30 - Today Tiffany is joined by fellow patient co-hosts Deb Constien and Katie Simons.
01:56 - Deb is a patient living with Rheumatoid Arthritis since the age of 13.
02:58 - Katie is a patient living with Rheumatoid Arthritis.
03:51 - Today’s episode is about making informed decisions in unprecedented times.
04:22 - Tiffany reviews the mission of AiArthritis, as well as the way we tackle initiatives.
07:39 - Deb has been having success with Actemra infusions, but there is currently a shortage as hospitals are buying all of the available doses to treat COVID-19 patients.
09:36 - Deb has significant damage in her hands from long-term RA, so she is not able to administer her own injections.
10:42 - Actemra infusions are stronger than Actemra injections, and rheumatologists are not able to modify the dosage of the injections to make them stronger.
12:16 - Social media is a source of news alerts for many people, but not all of the information they are getting is accurate or clear.
13:51 - Different countries are in different stages in terms of COVID-19 spread, vaccination availability, and medication availability.
16:00 - It is important to pay attention to local news to be informed about vaccine availability because it varies so much based on location.
16:47 - AiArthritis maintains a COVID-19 web page for updated information and current recommendations for immunosuppressed people at aiarthritis.org/covid
18:30 - Deb is in more pain since switching from Actemra infusions to Actemra injections.
19:01 - Genentech is the manufacturer of Actemra, and Deb wonders whether they will increase production of Actemra infusion medication so she can get back on her medicine.
21:03 - Shared decision-making is talking to your rheumatologist, getting all of the information, and then making the best decision together for your treatment based on your individual needs and preferences.
23:22 - Katie’s medication is also on the list of those being used for COVID-19 patients, and she is worried that shortages may impact her as well in the future.
24:26 - Patients are also concerned about upcoming shortages of injectable medications.
25:15 - AiArthritis patients require their medications to function on a daily basis. Their quality of life will be significantly negatively impacted if they cannot access their medications.
26:00 - AiArthritis medications are not interchangeable. What works for one patient does not work for another. Patients cannot just swap medications without consequences if their medications are not available.
27:03 - Actemra is the only drug approved so far for treating hospitalized COVID-19 patients. Hopefully as more drugs are approved, shortage issues will resolve.
27:25 - A high percentage of people who are hospitalized and needing Actemra are unvaccinated for COVID-19.
27:51 - When deciding whether or not to get a COVID-19 vaccine, AiArthritis asks you to consider that if you contract COVID-19 and require Actemra treatment, you are taking medicine away from people who need it.
28:44 - Biologic injections and infusions are complicated to manufacture and take a long time to produce.
30:03 - Some of the Actemra shortages are due to hospitals stockpiling the medicine in anticipation of needing it.
31:36 - AiArthritis patients should not have to sacrifice their quality of life because there are enough vaccines and medications to go around if everyone is making responsible choices and not hoarding.
34:16 - It can take 3-6 months for a new medication to take effect (if it is even going to take effect), and that entire time patients are incurring more damage.
40:50 - Educate your family and friends about the impacts to the AiArthritis community of choosing to not be vaccinated for COVID-19.
43:49 - The Actemra shortage is a crisis situation for the AiArthritis Community, but it hasn’t been well publicized, and not everyone understands that their decision to not be vaccinated is hurting other people.
46:01 - Misinformation is everywhere, especially on social media.
46:23 - Much of the information online has not been peer-reviewed because the situation is changing so fast, and everyone wants to publish their findings immediately even without corroboration.
48:53 - While a lot of information is constantly changing, one fact we know to be true is that the majority of people hospitalized with COVID-19 are unvaccinated.
49:19 - The CDC just published information indicating that no other demographic indicator made people more likely to be hospitalized than simply being unvaccinated.
50:59 - AiArthritis will be taking a team to the American College of Rheumatology 2021 Conference, and you can participate remotely by following along via the “Go With Us to Conferences” program on our AiArthritis Voices platform.
55:01 - To sign up for AiArthritis Voices, visit us online.
55:13 - You can also access the “Go With Us To Conferences” feature here.
56:10 - For updated information specifically on the Actemra shortage, you can follow our coverage here.
56:37 - You can always find us on social media @IFAiArthritis on all platforms.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
This week join your patient co-hosts Tiffany Westrich-Robertson, Cheryl Koehn, and Maarten de Wit as they introduce us to the Pathway of Patient Engagement in Rheumatology Research. Tiffany is the founder and CEO of AiArthritis. Cheryl Koehn is the founder and President of Arthritis Consumer Experts - Canada’s largest patient organization. Maarten is the Chairperson for the Study Group for Collaborative Research for EULAR (European Alliance of Associations for Rheumatology).
Tiffany, Cheryl, and Maarten are all leaders of the ACTion Council - an organization dedicated to preserving the past and advancing the future in patient-involved rheumatology research. The ACTion Council consists of stakeholder groups from patient organizations, health charities, coalitions, non-pharmacologic researchers, government agencies/initiated programs, and industry. Between 60 – 75% of those invited to participate have engaged in research collaboration as patient stakeholders.
Today’s episode is about the Pathway of Patient Engagement in Rheumatology Research, the first deliverable produced by the ACTion Council. The purpose of the initial Pathway is to trace the evolution of patient engagement in rheumatology research, including identifying historical milestones, novel “firsts”, and tools. Then, as patient involvement continues to popularize and branch off into different directions, new entries can be added. New entries will be collected and added in the second half of 2021, and the Pathway will be updated bi-annually.
Tune in to this episode to learn why the Pathway is important, how it can be helpful to you as an AiArthritis stakeholder, and how to avoid tokenism when you want to participate as a patient research partner in rheumatology research.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Episode 66: The Pathway of Patient Engagement in Rheumatology Research
00:52 - Tiffany welcomes listeners.
01:20 - Tiffany is joined by fellow patient co-hosts Cheryl Koehn and Maarten de Wit
02:24 - Cheryl is a person living with Rheumatoid Arthritis and works for Arthritis Consumer Experts - Canada’s largest patient organization.
04:29 - Maarten is a person living with Psoriatic Arthritis and the Chairperson for the Study Group for Collaborative Research for EULAR (European Alliance of Associations for Rheumatology).
07:40 - Today’s episode is about Patient Engagement in the Rheumatology research space and the Pathway of Patient Engagement in Rheumatology Research as developed by The ACTion Council.
08:44 - Tiffany explains the origin of the Pathway project.
10:36 - Cheryl explains how she originally became involved in research collaboration.
18:02 - In 2017, AiArthritis organized a roundtable of the people most involved globally in patient engagement in rheumatology research.
20:13 - The Pathway to Patient Engagement was created by a group of stakeholders that grew out of that roundtable meeting called The Action Council.
21:18 - The Action Council is a patient-led initiative, and 70% of the members are patients living with rheumatic disease.
23:10 - A patient research partner (a term coined by Maarten originally) is a patient who has an equal role on a research team, collaborating on an equal level with other researchers at every stage of the research.
25:41 - The goal of patient research partners is to make the research more patient-centered and more fitting of patients needs and beneficial to improving patients’ daily lives.
25:55 - Patient research partners should ideally be co-authors of the final research publication.
27:21 - Cheryl believes that incorporating patient research partners and having them co-author research publications is the “moral, ethical thing to do.”
27:39 - Living daily with arthritis requires a lot of skill that non-patient researchers do not possess. These skills are fundamental to good research.
29:28 - The patient engagement / patient researcher model must be strategic, scalable, and sustainable.
32:40 - One of the goals of the Pathway is to avoid Tokenism in research initiatives.
33:25 - Simply mandating patient involvement in research doesn’t work due to problems with tokenism.
34:21 - Creators took care to make the Pathway a user-friendly instrument.
35:03 - Mandating patient engagement in research (for funding) is necessary to get researchers to change their methodology, but it is incumbent on the patient community to safeguard against tokenism.
36:38 - One thing you can do to safeguard against tokenism is to refuse to cooperate with any research project trying to recruit patients at the last minute before a funding deadline.
37:35 - If you are offered a position on a research team that does not include co-authorship, refuse it.
37:51 - If you are not given a power title, you will not hold power in the project.
38:26 - The Pathway is a great place to learn if you are new to patient participation in research, but it is also a great place to find models for research if you are already a leader in patient research.
39:59 - Community-led research can be valid, published research even without major research organizations or funding sources involved.
41:24 - You can find the Pathway at rheumactioncouncil.org or on social media @rheumcouncil.
43:43 - There are videos on the website that explain in detail what the tool is and how to use it.
47:04 - Any stakeholder can contribute to the Pathway.
48:16 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow or on any podcast platform.
Be sure to check out our top-rated show on Feedspot!
This week join your recurring patient co-hosts Katie Simons and Deb Constien as they discuss the experience of being diagnosed with arthritis as a juvenile and the importance of differentiating between the different types of AiArthritis diseases. Katie is the Senior Program and Communications Manager for AiArthritis and a patient living with inflammatory arthritis. Deb is a dietitian, an experienced patient advocate and ambassador for the AiArthritis community, and a patient living with inflammatory arthritis. They both discuss the complicated nature of identifying just precisely what their diagnosis is as adults who were originally diagnosed with a juvenile form of arthritis.
This episode will tackle subjects of particular importance to the AiArthritis community such as differentiation of disease types, early intervention, shared decision-making, Stills Disease Awareness, and the experience of living with an invisible illness. Life with an invisible illness can be particularly challenging for children and adolescents, and our co-hosts share their experiences as teens faced with a new diagnosis and limitations. For more information on living with an invisible illness, check out Episode 12: Invisible Disease.
After you listen to this episode, we want to hear from you to keep the conversation going. If you were diagnosed as a young person, are you still using the initial diagnosis? Have you changed the way you describe your condition to others since becoming an adult or since the medical community changed the name of your disease? How do you feel about having an accurate diagnosis or about changing your diagnosis?
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Episode 65: Young and Invisible
00:53 - Katie welcomes listeners.
01:16 - Today’s topic is about being young and diagnosed with an invisible illness, as well as the importance of differentiating between the different types of AiArthritis diseases.
01:31 - Katie is joined by Deb, a recurring co-host who was diagnosed with RA at age 15.
02:05 - Katie was also diagnosed as a juvenile with JIA (juvenile idiopathic arthritis).
02:52 - Both Katie and Deb were treated by an adult rheumatologist because pediatric rheumatologists are very rare if they are available in your community at all.
03:20 - Deb and Katie share their respective diagnosis stories.
09:56 - It can be difficult for juveniles to get peer support because most people assume arthritis only affects elderly people.
11:07 - Friends sometimes stop inviting patients to participate in activities because they don’t understand the physical limitations of people with AiArthritis.
12:25 - Juvenile arthritis patients may find it difficult to continue activities they had previously enjoyed because of pain and fatigue.
14:48 - We want to hear from our listeners: If you were diagnosed as a young person, are you still using the same diagnosis?
15:12 - Stills Disease Awareness Day is coming soon.
15:24 - Stills Disease is actually an umbrella term that encompasses Systemic Juvenile Idiopathic Arthritis and Adult Stills Disease (the difference being whether you were diagnosed before or after age 16).
17:55 - Katie was diagnosed with JRA, but she generally refers to her disease as simply RA or arthritis since becoming an adult.
19:27 - Getting an accurate diagnosis can take many years because doctors don’t believe the patient or symptoms are not obvious or the symptoms do not match any one specific diagnosis readily.
24:01 - Early intervention is critical if the patient is ever going to achieve remission, so identifying the appropriate screening tools and making sure all AiArthritis patients receive them is very important.
25:56 - Especially in very young children, persistent parents are critical to getting an accurate diagnosis and early intervention.
29:37 - Patients living with AiArthritis diseases sometimes feel like they are just waiting for their condition to deteriorate.
30:06 - New medications for AiArthritis hitting the market provide hope for all patients to improve.
33:16 - With regard to changing medications, having surgeries, or any other therapeutic decisions, it’s important that the patient be emotionally ready to proceed.
35:50 - Shared Decision Making between patients and rheumatologists helps ensure that patients are comfortable with the therapeutic choices being made for their care.
37:22 - To continue this conversation, join us in the Facebook group for the talk show.
37:28 - You can also find us on all social media platforms @IFAiArthritis.
38:43 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow or on any podcast platform.
39:04 - Or message us via social media or email us at podcast@aiarthritis.org.
Be sure to check out our top-rated show on Feedspot!
In this episode, Tiffany, Deb, Patrice, and Katie - all persons living with AiArthritis diseases - attended the 2021 European Alliance of Associations for Rheumatology (EULAR) Scientific Congress and convened several times over a few weeks to review the sessions most relevant to our community and to the work we do at our organization.
The sessions reviewed in this segment involved "patient-rheumy communication", which we were happy to see covered so much at the conference! So, while historically all of our debriefs are patient-led only, we decided for the first time to invite two rheumatologists to 'zoom bomb' our discussion. In this review, join Tiffany, Deb, Katie, and Patrice AND Al and Jeff (Dr. Al Kim - Tiffany's own rheumy - and Dr. Jeff Sparks) as they talk about the EULAR session content around communication and office visit needs (patient side and rheumy side). Shared-decision making and the evolution of visits to include discussions on comorbidities (and multi-morbidities) AND associated "holistic" approaches was also visited.
Dr. Al Kim ("Al") is from the Washington University School of Medicine and Dr. Jeff Sparks ("Jeff") is from the Harvard School of Medicine. They were invited to zoom bomb our session right as we were giving our opinions about our rheumy visits. Hey, we need all voices at the table for these conversations, right?!
Today's show is a segment from our "Go with Us!" to Conferences series, EULAR 2021 Scientific Congress patient-led debriefs, all which can be viewed in full on our YouTube Channel). It is also considered part of our Rheumy RoundsⓇ special series, where patients and rheumatology professionals unite - as equals - to discuss problems that, if solved, could improve outcomes in the rheumatology community.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Episode 64: The office visit - viewpoints from both the patients AND the rheumies!
00:53 - Katie welcomes listeners.
01:20 - Katie is joined today by recurring co-hosts Tiffany, Deb, and Patrice and rheumatologists Dr Al Kim and Dr Jeff Sparks.
01:55 - Today’s episode will focus on the challenges of communication between patients and rheumatologists during office visits.
04:28 - What does a doctor plan for in a 10-20 minute visit?
04:34 - Doctors are focusing on maximizing therapeutic use of medications, especially minimizing steroid usage.
05:07 - They then focus on health maintenance issues like cardiovascular disease management.
05:36 - Emotional aspects of living with rheumatic disease or quality of life issues for patients are highly unpredictable and difficult to anticipate, and physicians have limited tools for addressing these concerns.
08:22 - Rheumatologists feel constantly pressed for time because 20 minute appointment slots are never enough time, especially for complex cases, and often the visits don’t even receive the full 20 minutes due to outside logistical complications.
09:11 - The top priorities for Jeff are to get a full interval history of how the patient has been doing since the last visit and to make sure the current medication regimen is correct for the patient.
10:33 - Jeff hopes to get to health maintenance issues before the time expires.
11:53 - How do rheumatologists fit conversations about holistic approaches to disease management in that 20 minute appointment model?
12:07 - It’s almost impossible to do during the standard appointment, so some doctors are trying to connect patients with other resources like dietitians, physical therapists, or even yoga instructors instead of trying to provide those services themselves.
13:17 - An ideal would be to have a multi-disciplinary center where patients see all the specialists in the same day to receive holistic care, but that doesn’t really happen - at least in the American healthcare system.
14:58 - What is the ideal level of preparation for a patient, from the perspective of a rheumatologist?
15:09 - Patients who have 3-10 questions planned in advance, especially when those questions are related to medication regimens or therapeutic plans.
17:24 - Do you have issues with patient compliance with prescribed medications?
18:11 - Patient adherence is definitely an issue, and rheumatologists would rather know if you are not taking your medication and why so they can get you on a medication that will work for you.
19:48 - Rheumatologists are trying to use the term non-concordance in place of compliance or adherence because neither of those terms are consistent with shared decision making principles.
20:02 - Eroded communication between patient and provider is responsible for non-concordance because it leads patients to make their own decisions about certain medications.
24:35 - What are the biggest changes you’ve seen in rheumatology visits over the course of your career?
24:53 - The changing requirements of documentation for medical records has created an incredible amount of bureaucracy that is not helpful to caring for patients and strips away the humanity of providing medical care.
25:58 - To watch the entirety of this conversation, check out our EULAR debrief video #6 on our YouTube Channel.
26:48 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow.
26:57 - Please consider donating at aiarthritis.org because we need your support to keep this show and all of our initiatives moving forward.
Be sure to check out our top-rated show on Feedspot!
This week join your patient co-hosts, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis), and recurring 2021 patient co-host Deb Constien as they welcome two special guests to the table for a new episode of our Special Series on COVID-19. They are joined today by two practicing adult rheumatologists: Dr. Al Kim ("Al") of the Washington University School of Medicine and Dr. Jeff Sparks ("Jeff") of the Harvard School of Medicine *.
In this segment of the debrief, the rheumies update us on COVID-19 vaccinations and new research. Jeff received an abstract award at the conference for his research on COVID-19 disease outcomes for patients taking immunosuppressant medications and Al is doing research, led by Washington University, tracking vaccine response in autoimmune patients.
Shared decision making about therapeutic plans, including vaccination, is the other hot topic for the day! The rheumies and our co-hosts dish about the topics on patients’ minds including antibodies, boosters, and next steps. And Tiffany gives a special thank you to Janssen Pharmaceuticals for investing in the organizations new initiative to prepare patients to engage in shared decision making about COVID-19 and vaccines.
This special episode was recorded during a EULAR 2021 debrief. You can watch the entire, unedited video recording (that also includes Katie and Patrice) HERE. While there, watch all of our EULAR 2021 content on our YouTube Channel.
*Actually, at minute marker 20 in the full video, Al and Jeff zoom-bombed our patient-led debrief, the first time non-patient stakeholders were invited to the table for this series. But it was about rheumy communication, so why not?!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Episode 63: COVID-19, Vaccinations, Shared-Decision Making, & Rheumy Communications
01:37 - Tiffany welcomes listeners.
03:12 - Tiffany is joined today by recurring co-host Deb and rheumatologists Dr Al Kim and Dr Jeff Sparks.
05:16 - Today’s episode will focus on COVID-19 vaccinations and new research on COVID-19, as well as the launch of a new AiArthritis initiative to promote shared decision making regarding COVID-19 vaccinations.
07:47 - Thank you to Johnson & Johnson for funding our work on this important initiative.
09:01 - Jeff explains his award-winning research abstract presented at EULAR 2021.
10:33 - Jeff’s research found that COVID-19 patients who were taking Rituximab and JAK inhibitors prior to diagnosis had more severe disease courses compared to patients who were not treated with these drugs or were treated with different DMARD or Biologics.
10:58 - This is especially interesting because some trials have shown that JAK inhibitors can be effective in treating COVID-19 in patients who were not taking immunosuppressant medications prior to diagnosis.
13:19 - COVID-19 is a unique disease in that it creates a second stage inflammatory state where immunosuppressants can be helpful in preventing death and facilitating recovery.
13:48 - Research from Yale shows that a patient’s ability to produce antibodies effectively in the early stage of the disease is crucial to preventing the more serious form of the disease, so patients taking immunosuppressants have an increased risk of developing severe COVID even though these drugs are helpful in treating the disease in the second stage.
15:32 - AiArthritis (in conjunction with EULAR PARE) just launched the Pathway of Patient Engagement in Rheumatology Research, which features Jeff’s research abstract.
16:32 - What should patients be preparing for before their rheumatology appointments as new information about COVID-19 and vaccines continues to develop?
17:00 - Al still thinks that testing patients for antibodies doesn’t make sense because antibody status is not actionable information from the rheumatologist’s perspective.
17:47 - Prophylactic monoclonal antibodies are substantially restricted because they have only been approved under an Emergency Use Authorization by the FDA, so your rheumatologist cannot just prescribe them for you because your vaccine did not yield COVID-19 antibodies.
18:05 - Booster shots for COVID-19 have also not been approved by the FDA yet, so some patients are lying about their vaccination status to get a second set of shots. Please note that neither AiArthritis nor the rheumatologists appearing in this episode recommend this course of action.
22:21 - Rituximab is generally considered to be a very safe drug, but it elevates risk for patients with COVID-19.
23:06 - This raises questions for doctors about whether they should continue prescribing it in light of the risk that patients may be facing from COVID-19.
23:15 - It will be very important for patients to engage in shared decision making with regard to drugs that elevate COVID-19 risks.
24:11 - Special thanks to Janssen Pharmaceuticals for their support in funding our work on promoting shared decision and helping patients with regard to COVID-19 vaccination decisions.
26:36 - To watch the entirety of this conversation, check out our EULAR debrief video #6 on our YouTube Channel.
26:55 - If you are interested in going to conferences with us, find out how you could attend a conference with us at aiarthritis.org/conferences.
27:11 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow.
27:17 - Please consider donating at aiarthritis.org because we need your support to keep this show and all of our initiatives moving forward.
27:54 - Tiffany thanks listeners for their support.
Links discussed in this debrief:
- 2021 EULAR recommendations for the implementation of self-management strategies in patients with inflammatory arthritis - https://ard.bmj.com/content/early/2021/06/13/annrheumdis-2021-220249
- Exploring intentional medication non-adherence in patients with systemic lupus erythematosus: the role of physician-patient interactions - https://pubmed.ncbi.nlm.nih.gov/33604502/
- Associations of baseline use of biologic or targeted synthetic DMARDs with COVID-19 severity in rheumatoid arthritis: Results from the COVID-19 Global Rheumatology Alliance physician registry - https://pubmed.ncbi.nlm.nih.gov/34049860/
- Glucocorticoids and B Cell Depleting Agents Substantially Impair
- Immunogenicity of mRNA Vaccines to SARS-CoV-2 - https://www.medrxiv.org/content/10.1101/2021.04.05.21254656v2.full.pdf
- Learn more about the Pathway of Patient Engagement in Rheumatology Research: www.rheumactioncouncil.org/pathway
Be sure to check out our top-rated show on Feedspot!
This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constien, Patrice Johnson, Katie Simons, and Leslie Rott Welsbacher as they brief our AiArthritis patient community on the first day of EULAR 2021. Tiffany, Deb, and Katie are the core team members attending the conference, but as part of our "Go with Us! to Conferences" program, we have invited three patients to be part of the experience, too! Joining us for this debrief are Patrice Johnson and Leslie Welsbacher. Patients are one of three pillars of EULAR (researchers and medical professionals make up the other two) and are encouraged to attend and participate in the annual conference. So here we come!
Formerly known as the European League Against Rheumatism, the organization is now called European Alliance of Associations for Rheumatology (EULAR) and is in the midst of hosting their annual conference online for the second consecutive year due to the COVID-19 pandemic. Our first review covers emerging conference themes (inflammation as an umbrella, comorbidities and "multi-morbidities") and covers featured recommendations for disease management.
Whether in person, or attending online, our organization always attends, then does patient-led video debriefs - highlighting lessons learned from sessions and reporting back what is new in research. But we don't just tell you what we learned, we invite you to learn with us. So we invite you to get comfy on your couch with a glass of your preferred beverage, pretend we are all together in Paris (intended location of the conference before it was moved to the virtual platform), and enjoy our debrief of this first round of sessions. Then head over to our YouTube Channel or online patient platform to learn even more!
Also, check out Leslie's blog: Getting Closer To Myself - where she chronicles life with RA and Lupus.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Episode 62: EULAR 2021
00:52 - Tiffany welcomes listeners.
01:41 - Tiffany is joined by recurring co-hosts Deb and Patrice, as well as fellow patient co-hosts Katie and Leslie.
04:04 - Today’s episode is brought to you from the European Alliance of Associations for Rheumatology Virtual Conference 2021 (formerly the European League Against Rheumatism).
07:29 - Collaboration is a major theme of the conference this year.
08:06 - Patients are 1 of 3 pillars in the organizational structure of EULAR (along with researchers and health professionals), so they are welcomed and encouraged to participate in the annual conference.
09:11 - Inflammation is another major theme of the conference, even including a session on the impact of inflammation on dementia.
13:17 - One session Tiffany and Patrice attended was titled “HELP! What do I need to cope with my rheumatic disease?”
14:32 - Patrice gives a brief summary of the session.
18:13 - One of the key themes of the session was the interaction between genetics and environmental triggers and how educating people about potential triggers may help prevent onset of disease in people who are genetically predisposed to develop rheumatic disease.
24:09 - Comorbidity is when the primary disease triggered some other condition, whereas multi-morbidity is when some factor to do with the patient spontaneously triggers multiple disease conditions.
27:33 - The second session the co-hosts attended was on exercise.
28:50 - Tiffany asks the other co-hosts: do you have any fears about exercising?
29:00 - Patrice exercises every day and says movement makes her feel better.
30:20 - In Italy 90% of people living with rheumatic diseases are inactive. In the US around 70% of patients are inactive. In Finland, around 40% of patients were inactive (which was the most active country in the study).
30:49 - Researchers want to know why more patients don’t exercise when the studies show that exercise helps patients feel better.
31:35 - Researchers put a group of 136 rheumatic patients on a high-intensity weight-bearing exercises for 2 years and did not have any more damage or disease progression than the control group.
34:22 - Tiffany talks about the importance of knowing your limits as related to your specific diagnosis. Keep in mind that all exercise advice is generalized and you have to figure out the routine that works for you.
36:15 - Katie talks about working with physical therapists who understand your condition to look for expert guidance on what works for you.
38:00 - The next session the co-hosts attended was on Remission and Lupus: Is remission achievable with today’s drugs?
38:31 - In recent studies, at least 50% of patients were able to achieve at least one remission state.
38:38 - For people who have had Lupus a long time, long-term remission is very rare.
39:15 - Clinical remission without treatment is extremely rare and probably not a realistic goal for patients, but clinical remission with treatment is definitely possible.
42:45 - Patrice asks Leslie: How did you feel about a presenter describing Lupus patients’ quality of life as poor?
43:44 - Leslie discusses people’s perception of Lupus, quality of life issues, and health equity.
52:28 - Tiffany attended a session on multidisciplinary care.
52:48 - Tiffany asks her co-hosts: how many different doctors do you have?
53:00 - Only Deb and Tiffany have teams that work together (both within University systems). Everyone else has doctors that do not talk to each other.
54:10 - Tiffany also attended a session about RA that is difficult to treat , where researchers defined “difficult to treat” as failing 2 or more treatments that use different mechanisms of action.
55:50 - AiArthritis is partnered with OMERACT and EULAR on a study about synovial tissue studies.
56:46 - Aurelie presented at a session based on this research where she recommended 14 points to EULAR about changing physician practices with regard to patient education and biopsy collection.
1:02:00 - This episode will be broken down into smaller video segments and posted to our YouTube channel for anyone interested in watching specific segments.
1:02:44 - All of the videos from EULAR 2020 are also available on our YouTube channel as well.
1:02:55 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow.
1:03:10 - Connect with us on social media @ IFAiArthritis on all platforms.
1:03:30 - Email Katie at katie@aiarthritis.org if you are interested in attending future conferences (please put Go To Conferences in the subject line).
1:03:45 - Please consider donating at aiarthritis.org because we need your support to keep this show and all of our initiatives moving forward.
1:04:21 - Follow Leslie’s blog @ GettingCloserToMyself.blogspot.com.
1:05:00 - Tiffany thanks listeners for joining all of our co-hosts today.
This week join your patient co-hosts Tiffany Westrich-Robertson and Deb Constein as they discuss AiArthritis’ 2021 Annual Fundraising Effort: The Charity Talk. Since many of the members of the AiArthritis community are unable to walk long distances, AiArthritis decided to host a Charity Talk in lieu of the traditional Charity Walk. The purpose is to raise awareness, educate the public about our diseases, and raise money to support the ongoing work our organization does to serve the 450 million people worldwide living with AiArthritis diseases.
Would you like to get involved? You can download free materials to host your own Charity Talk to educate your friends and family about the nature of your disease. Tune in to this special mini episode to find out all the details and get started. We need your help to promote early detection and treatment, help families and friends be supportive of people living with AiArthritis diseases, and help patients grapple with their changing roles in life after diagnosis. All of the money raised from these events will go to support the mission of AiArthritis to elevate the patient voice in global conversations with all stakeholders in education, advocacy, and research in the field of autoimmune and autoinflammatory arthritis.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Episode 61: Charity Talk
00:52 - Tiffany welcomes listeners.
01:13 - Tiffany is joined by fellow patient co-host, Deb
02:15 - On May 1st, AiArthritis hosted a virtual Charity Talk (an alternative to a traditional Charity Walk).
05:28 - A primary focus of the Charity Talks is to create educational materials to communicate to the public that AiArthritis diseases are systemic, full body diseases. They are not “just” arthritis.
06:23 - All of the materials from the event are available for anyone to use to organize their own event to educate friends and family.
09:13 - Lack of understanding or mistaken assumptions about physical abilities can create conflicts between AiArthritis patients and their families or friends.
10:18 - Delayed diagnosis leads to delayed treatment and irreversible damage so educating the public can also help people with symptoms get a diagnosis sooner.
14:03 - The Charity Talk materials also cover the idea of “Who Am I Now?” and how the roles of an AiArthritis patient may have to change after diagnosis
16:21 - Visit aiarthritis.org/charitytalk to download all of the free materials to host your own Charity Talk, especially in the month of May in support of World Autoimmune and Autoinflammatory Arthritis Day (May 20th)
17:00 - Donations are also accepted on the same webpage to support all the work AiArthritis does to help patients living with AiArthritis Diseases worldwide.
17:44 - Tiffany thanks listeners for their continued support.
Be sure to check out our top-rated show on Feedspot!
This week, join your patient co-hosts Kelly Conway and Rick Phillips and special guest Heather Kenjorski for a frank discussion about mental health, AiArthritis patients, and the COVID-19 pandemic. Kelly is a co-founder of AiArthritis and the author of the blog As My Joints Turn: My Autoimmune Soap Opera, as well as a recurring co-host for AiArthritis Voices 360. Rick is the founder of RA Diabetes, a website devoted to people who have both Rheumatoid Arthritis and Type I Diabetes and a returning AiArthritis Voices 360 co-host. You can check out Rick’s recent appearance in Episode 48: Support, which also tackled issues relating to mental and emotional wellness. Heather is a licensed social worker who has experience treating AiArthritis and other chronically ill patients dealing with depression and anxiety.
On February 21, 2021 Kelly wrote a very poignant blog post titled “Not A Me Too Moment” where she spoke very openly about her battle with depression resulting from chronic illness and how the tragedies she has experienced during the pandemic have led to her depression being out of control at the current time. In response to this blog post, Rick shared that he too has been in treatment for many years for depression. They decided to get together and bring in a professional to discuss this topic in more detail for the benefit of all the people listening to the show who may also be experiencing depression, especially those who are not currently seeking help from the medical community for their struggles.
We invite you to pull up a chair and listen in as Kelly and Rick share deeply personal information about their lives that many people avoid discussing due to the stigma attached to mental health. Together with Heather, they will discuss the bravery inherent in asking for help when you need it, how to go about getting help if you think you might benefit from having someone to talk to about your issues, how to recognize when you or someone else may be struggling, and what resources exist for people who are having difficulty accessing mental health treatment. This is an important episode, and you don’t want to miss it.
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Episode 60: Depression
00:52 - Kelly welcomes listeners.
01:30 - Kelly is joined by fellow patient co-host, Rick Phillips and licensed social worker, Heather Kenjorski.
3:03 - Today’s topic is depression among people living with AiArthritis diseases, especially during the COVID-19 pandemic.
04:45 - Today’s episode was inspired by Kelly’s blog post titled “Not a Me Too Moment” on her blog As My Joints Turn: My Autoimmune Soap Opera.
07:10 - Rick wants people to know that medication and talk therapy can help, and there is no need to suffer in silence.
07:15 - Heather, have you seen an increase in patients experiencing depression since the onset of the pandemic?
07:40 - Many of the coping mechanisms suggested for people struggling with depression and anxiety are not possible during the pandemic which has led to an increase in isolation and feelings of sadness and hopelessness.
08:18 - Staying home and quarantining exacerbated people’s existing struggles with depression and anxiety.
10:40 - One study presented at ACR 2020 found that some Lupus patients felt better emotionally at the start of the pandemic because the entire community was experiencing life the way they usually do (avoiding germs, curbside pickup, etc).
12:30 - Some AiArthritis patients experienced extreme emotional stress from being forced to go to work during the pandemic when they felt it was safer to stay home.
16:04 - Heather what are some of the signs and symptoms of depression?
16:31 - People are very skilled at putting on a brave face, so you can’t rely on their outward appearance.
16:52 - Signs of depression may be a loss of interest in things someone used to enjoy like activities, eating, or communicating with others.
17:18 - Sudden loss of appetite or eating much more than normal can both be signs of depression.
17:39 - Fatigue or having no desire to engage with people can be a sign.
17:45 - Depressed people may not take care of themselves like getting dressed, showering, or brushing their teeth.
18:03 - If you can’t look forward to things or feel hopeless, that could be a sign of depression.
18:44 - Anger can also be a symptom of depression.
19:46 - Depression is not a sign of weakness, and life gets better after treatment.
22:30 - Some therapy practices are full right now because so many people are seeking mental health assistance.
23:11 - Heather, do you find that people have a difficult time admitting that they need help?
23:40 - There is definitely still a stigma attached to receiving therapy, and it’s a shame because it keeps people from getting the help that they need.
25:02 - It is courageous to get therapy and address your issues.
25:10 - To stay in a miserable state of mind is not strength.
29:36 - Caretakers often experience serious depression and have limited avenues for emotional support outside of therapy.
30:29 - Heather do you have any other tools (besides medicine and talk therapy) that you find useful in helping people battling depression?
31:06 - Self-care is key for everyone, and it’s something people aren’t necessarily very good at doing.
32:11 - Journaling is a great way to get in touch with your own feelings.
33:02 - Meditation, deep-breathing exercises, and physical movement are all important aspects of self-care.
37:49 - The more people try to avoid their own negative thoughts, the more powerful those thoughts become so learning to meditate and be present with your own thoughts - even if they aren’t comfortable thoughts - can be very important to mental wellness.
39:03 - It may be helpful to remember that depression is not a permanent state; it will end.
40:14 - Chronic illness isn’t the end of the world, but it is a different way of living in the world.
42:30 - How can we help our community identify when they may need help or find help for people who cannot afford mental health assistance?
43:07 - Many communities have assistance for people who cannot afford private therapy, but you need to reach out to your local mental health advocates, mental health society, family services, local hospitals, or even private doctors and ask what is available in your area.
45:08 - Virtual appointments are now available because of the pandemic which has opened many doors for people who lacked transportation to appointments.
49:51 - Like us or message us on social media @IFAiArthritis on all platforms to stay informed and involved or email us at podcast@aiarthritis.org
50:33 - Find all our episodes on our website at aiarthrits.org/talkshow
51:08 - You can reach Rick at info@RADiabetes.com or follow Rick’s blogs at ankylosingspondylitis.net and rheumatoidarthritis.net
51:49 - Please be part of the continued conversation at aiarthrisvoices.org.
52:03 - Kelly thanks her co-hosts and the listeners.
Be sure to check out our top-rated show on Feedspot!
This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she discusses the mission and future projects of The International Foundation for Autoimmune and Autoinflammatory Arthritis and the AiArthritis Voices 360 Talk Show.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. We do this by engaging in a 6-step process (as outlined in Episode 27: The Method To Our Madness) for bringing pressing issues to the table for conversations to create solutions to improve the lives of the 450 million people worldwide living with AiArthritis diseases.
Our organization is constantly evolving to meet those changing needs. As we look to a future where people will be able to interact in person more without the fear of COVID-19, we are excited to transition to a model for the show that will allow us to embrace our original vision of a “touring” talkshow. To prepare for this, we are changing the airing schedule of the show and diversifying our media platforms so that conversations building on core issues raised on the talkshow may be addressed through conversations on other platforms like social media, Youtube, webinars, and in our AiArthritis Voices online forum. We can’t wait to see YOU at the table soon for one of these chats.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Episode 59: Learned Experiences - Let the Evolution Continue!
00:52 - Tiffany welcomes listeners.
01:13 - Today’s episode is about learned experiences and the next evolution of the AiArthritis Voices 360 talkshow.
05:56 - In March of 2020, Tiffany contracted COVID-19, but nobody believed her at the time.
07:52 - Tiffany received her first dose of the COVID-19 vaccine yesterday.
08:23 - AiArthritis has worked diligently to bring constantly evolving information about COVID-19 to the AiArthritis patient community and to involve other stakeholders in these conversations.
11:00 - The organization follows a 6-step process to address issues. These are discussed in detail in Episode 27: The Method to Our Madness.
12:06 - AiArthritis Voices 360 will air 1 core episode the first Sunday of each month, beginning in April 2021.
13:43 - There will be unlimited breakout conversations on a variety of platforms that support those core issues.
14:59 - We are looking forward to an upcoming episode on value assessments used in pricing AiArthritis medications.
15:52 - We also have an episode coming up about health equity and diversity, as well as continued conversations about autoimmune and autoinflammatory arthritis vs other forms of arthritis.
16:25 - To submit a topic for conversation, go to aiarthrits.org/talkshow and click on the button that says “submit your topic.”
17:15 - Sign up to stay informed on all our ongoing conversations by receiving our e-newsletter at aiarthritis.org.
17:45 - Like us on social media @IFAiArthritis on all platforms to stay informed and involved as well.
18:34 - Tiffany thanks listeners.
Be sure to check out our top-rated show on Feedspot!
This week join your patient co-host Deb Constien as she reports from the 2020 American College of Rheumatology Conference on Dietary Modifications and the Microbiome as potential future therapeutic options for the treatment of AiArthritis diseases. Deb is a medically retired registered dietitian who has been living with Rheumatoid Arthritis for 39 years. She attended two fascinating sessions on these topics at the 2020 ACR Conference and gives a State of the Research presentation for all of us who weren’t able to attend the sessions ourselves.
AiArthritis believes that the future of Rheumatology lies in precision medicine and shared-decision-making where a patient’s genetics, lifestyle, environment, and medical history all play a role in determining the best course of treatment to be decided upon by the patient and their Rheumatologist working together. This vision for the future of healthcare would no longer rely on one-size-fits-all approaches to treating disease where patients are subjected to a series of failed medications (ie step therapy) until they stumble on one that happens to work well for their situation.
Researchers believe they are very close to identifying specific biomarkers that can determine a patient’s unique dietary needs that would help - in concert with pharmaceutical therapies - to reduce inflammation levels in the body. Deb walks us through the new research into dietary modifications and the microbiome and their respective roles in managing inflammation levels in patients suffering with AiArthritis diseases, as well as how these might be utilized in the future of precision medicine.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Episode 58:
Diet, Research, & AiArthritis - an ACR Special Presentation
00:52 - Deb welcomes listeners.
01:09 - Deb is a patient living with RA and a recurring Voices 360 co-host, as well as a retired Registered Dietitian
01:30 - This episode is based on two 2020 American College of Rheumatology Conference session titled: Modulation of RA Activity through Dietary Restoration of the Microbiome and Trials of Diet on Rheumatoid Arthritis
02:10 - The microbiome is a new frontier in precision medicine for the treatment of AiArthritis Diseases.
03:59 - Dietary interventions have not yet been established as a complementary treatment for RA like it has been for inflammatory bowel disease, but researchers believe they are close to finding a connection.
04:24 - The microbiome is a promising new way to monitor health and use it as a high dimensional biomarker to improve patient outcomes.
05:35 - Bacteria in your gut can impact inflammation.
06:23 - The Inflammatory Arthritis Microbiome Consortium (IAMC) collected diagnostics from stool and blood to examine bacteria and how inflammation may be connected to each different strain of bacteria found in the intestines.
07:31 - The IAMC is also studying how genetics may impact inflammatory arthritis.
08:04 - One study looked at the impact of a diet high in anti-inflammatory foods on RA patients.
09:31 - The anti-inflammatory diet excluded soy, gluten, and refined sugar, but included some dairy to make it more palatable to the patients.
11:19 - Some patients did not improve at all with the highly restrictive diet, but some had improvements in pain and fatigue.
12:51 - Deb has done a 30 day Elimination Diet to try and identify inflammatory triggers, but none of the common triggers impacted her pain at all.
13:16 - Deb believes that a newly diagnosed patient might have better results than someone like her who has had RA for decades.
15:11 - Pain, fatigue, and general sense of wellness improved for the patients that had measurable results from the diet changes.
15:58 - There was discussion in the session of possibly pre-treating patients with antibiotics or cleanses to prepare patients for starting an anti-inflammatory diet as a potential next step in the research.
19:13 - To discuss this topic in more depth, visit us @IFAiArthritis on all social media platforms, email us at podcast@aiarthritis.org, or sign up to join us inside our new project community AiArthritis Voices @ aiarthritis.org/aiarthritisvoices
20:26 - Follow us anywhere you listen to podcasts and give us a 5-Star Rating
20:38 - To support the show, consider making a donation on our website at aiarthritis.org
Be sure to check out our top-rated show on Feedspot!
A special you to Bristol Myers Squibb and PhRMA for helping to make this show possible.
This week join your patient co-hosts, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis, and Kelly Conway, co-founder of AiArthritis and author of the popular blog As My Joints Turn: My Autoimmune Soap Opera, as they welcome three special guests to the table for a new episode of the Voices 360 Special Series: Rheumy Rounds. They are joined today by three practicing adult rheumatologists: Dr. Al Kim of the Washington University School of Medicine, Dr. Vibeke Strand of the Stanford University School of Medicine, and Dr. Jeff Sparks of the Harvard School of Medicine. In this special episode of Rheumy Rounds, they discuss patient and rheumatologist vaccination hesitation and key education points, while providing insights to assess benefits and risks and promote shared-decision making strategies.
On February 10, 2021 the American College of Rheumatology published clinical guidance on COVID-19 vaccinations which suggests that all rheumatic disease patients should be vaccinated for COVID-19 and provided very specific recommendations regarding modifications needed - if any - to immunosuppressive therapies before and after vaccination. But most patients don’t read press releases from ACR. Not all patients will have an appointment with their rheumatologist between February 10th and the date they may be eligible or able to receive the vaccine in their specific location. This round table discussion seeks to prepare all stakeholders to participate in effective shared decision making conversations between patient and provider so that all members of the community can make the best decision for their own health, as well as the best decision for their families.
So pull up a chair as these three rheumatologists answer patient-provided questions about vaccine efficacy, side-effects, availability, and much more. Then consider getting involved. The COVID-19 Global Rheumatology Alliance is seeking participants for their survey on how the pandemic has impacted rheumatic disease patients. If you are an adult patient living with an AiArthritis disease, or the parent of a juvenile patient, you can sign up to participate in the survey here. But don’t stop there! We also want to hear from you. Reach out to us on social media (@ifAiArthritis on all platforms) or via email (to podcast@aiarthritis.org) and give us your insight on this critical question: how can we get more information to patients about the vaccine and the ACR guidance to facilitate shared decision-making?
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
RheumyRounds is a concept developed by AiArthritis to bring rheumatology professionals & persons affected by AiArthritis diseases to the same table, as equals, to discuss important community topics that, if solved, would improve communication and positively impact outcomes. https://www.aiarthritis.org/rheumyrounds
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Disclaimer: This is meant to be informative, but not to provide medical advice. Every person living with AiArthritis diseases must make vaccination choices based on their self-education then contact their rheumatologist or practicing physician and determine a solution together (shared-decision making). It is important you determine the best course of action for YOU, based on your own individual health situation.
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Episode 56 - Rheumy Rounds: Vaccination Hesitation
00:53 - Tiffany welcomes listeners.
01:56 - Tiffany welcomes her fellow patient co-host and co-founder of AiArthritis, Kelly Conway, and special guests Dr. Al Kim, Dr. Vibeke Strand, and Dr. Jeff Sparks.
02:28 - Dr. Al Kim is an adult rheumatologist at the Washington University School of Medicine in St. Louis, MO and the founder and co-director of the Lupus Clinic.
02:47 - Dr. Vibeke Strand is an adult rheumatologist and a member of the faculty at Stanford University Division of Immunology / Rheumatology, as well as a consultant in new product development in rheumatology.
03:32 - Dr. Jeff Sparks is an adult rheumatologist at Brigham and Women’s Hospital and Harvard Medical School.
04:22 - The idea of the AiArthritis Talk Show is to bring stakeholders to the table for a roundtable discussion, not to conduct interviews.
07:46 - The American College of Rheumatology put out clinical guidance on COVID-19 vaccinations which suggests that all rheumatic patients should be vaccinated for COVID-19 and that all medications rheumatic patients take should be continued with very few exceptions (listed in the document) because controlled disease and avoidance of flares is better for the patient when receiving the vaccine.
10:32 - Some patients are stuck in a misinformation limbo where they were told not to get the vaccine by their doctor before the ACR guidance was put out, but they have not heard that the information has changed.
11:00 - Have you seen any hesitancy among rheumatologists to recommend patients receive the COVID-19 vaccine?
11:18 - Dr. Kim has not seen any of his colleagues in St. Louis tell patients not to get the vaccine, but he thinks they may be in a privileged bubble because of their proximity to the medical school.
12:05 - Rheumatologists normally have control over whether their patients receive a vaccine, but with the COVID-19 vaccine they may not even be consulted by their patients in making the decision. Dr. Sparks says most of his patients seem eager to get the vaccine.
12:53 - Patients are reaching out to their rheumatologists about when they will be able to receive the vaccine, but most states are not prioritizing rheumatic patients for vaccination which causes frustration for both patients and their physicians.
13:19 - Dr. Strand thinks that the reliance on Telehealth appointments may also be limiting the amount of information patients are getting from their rheumatologists.
13:47 - Social media is the source of news for many people, which is a blessing and a curse because it opens up access to lots of information - including misinformation.
14:24 - The weather has also caused a lot of delays in vaccine access for many patients in the US.
15:17 - What if my second dose of the vaccine is delayed beyond the due date?
16:32 - Because of the way the immune system functions, it should be fine to get the second dose a week or even two weeks late.
16:54 - If I have to miss my second dose appointment, can I just make an appointment at a different location and get a different vaccine for my second dose?
17:24 - The vaccines are shipped in paired doses, and your second dose is usually reserved for you. You need to receive your reserved dose so that it doesn’t go to waste. Also there have been no tests on patients receiving one dose each of two different vaccines. It’s very important to receive the second dose that was reserved for you.
18:20 - Data from Israel is showing that vaccinated patients may not be carrying or shedding the virus at the same rate as unvaccinated people.
18:56 - Will my rheumatologist be checking in some way to see if I have an antibody response to the vaccine?
19:10 - No, because that information is not clinically actionable. We can’t do anything with that information, so there’s no reason to subject the patient to a test. We also can’t order the ingredients from the vaccine that would be necessary to test the patient for the presence of antibodies.
20:05 - The antibody response is also not the only thing that determines if a vaccine works for a patient. So even if we could test it, the information would not tell us the whole picture.
21:18 - A lot of the hesitancy Dr. Kim has seen has been coming from patients, either because they are concerned that the vaccine will destabilize their disease; they feel like social distancing is working fine for them; or they want to wait for more information before getting the vaccine.
23:36 - Kelly reports that many patients are claiming that the Pfizer vaccine has fewer side-effects than the Moderna vaccine, which is not true.
24:35 - It is important that patients get both doses from the same type of vaccine (2 doses of Pfizer, 2 doses of Moderna, etc.).
24:56 - Because of the lack of available vaccine doses, patients may not be able to choose which brand of vaccine they get. Is this a problem?
25:18 - There are many reasons patients may be hesitant to get the vaccine, and doctors need to try to understand those reasons in order to help those patients.
26:40 - Patients around the world have access to different vaccines than people here in the US. Eventually American people may have access to more than just the mRNA vaccines, and that may impact patient choice as well.
27:12 - The two mRNA vaccines - Moderna and Pfizer - behave very similarly. Some people have reactions to the vaccine, particularly the second dose, from either brand.
27:25 - Having allergies is not likely to cause you to have an anaphylactic reaction to the vaccine because the agent that they believe is causing those reactions is a common ingredient in household substances and foods.
27:54 - It’s extremely unlikely (less than 1% chance) that you will have an anaphylactic reaction to the vaccine.
28:38 - It is very easy to view the ingredients for the vaccines and compare the list to your known allergies.
29:05 - Having a bad vaccine reaction in the past does not mean you will have a bad reaction to the COVID-19 vaccine, and you’re much more likely to have a bad reaction to the COVID-19 virus than to the vaccine.
29:25 - The mRNA vaccines are very safe.
29:44 - Does it make sense to try and wait for a specific brand vaccine with a 95% effectiveness rate instead of one with an 85% effectiveness rate?
30:18 - Most vaccines have effectiveness rates of 50-70%, so all of the COVID-19 vaccines have efficacy rates higher than that.
31:12 - Those numbers are based on antibody responses, which don’t even reflect the entire response to the vaccine. All of the vaccines approved by the FDA are effective and safe.
31:59 - The vaccines are so hard to get right now that if you are offered a COVID-19 vaccine, you should get it regardless of what brand it is.
34:08 - Is there anything else our listeners should know about getting the vaccine?
34:28 - Many people with rheumatic diseases have autoantibodies, so people were worried that an mRNA vaccine could stimulate an autoantibody response. The data with COVID-19 and the vaccine suggests that it’s still much safer for rheumatic patients to get the vaccine than to get the virus. It doesn’t matter if you have autoantibodies. We still want you to have the vaccine so that you don’t get the virus.
35:39 - The phase III clinical trials for both Moderna and Pfizer were the largest clinical trials for any vaccine ever. The results should reassure all of us that these vaccines are safe and effective.
36:44 - We will still need to wear masks after receiving the vaccination until the pandemic ends.
37:14 - How can we as a community assess barriers and benefits of getting the vaccine? How does that impact shared decision-making?
38:25 - Patients need to discuss 3 things with their rheumies: what are your specific risks for getting the infection? Do you have comorbidities that elevate your risk for complications from the virus? What is your risk for infecting others? All of these questions should impact your decision to get the vaccine.
39:50 - The patient’s specific concerns should really influence the conversation the physician is having. Someone who is eager to get the vaccine should be having a very different discussion compared to someone who is concerned about getting the vaccine.
40:23 - The ACR guidance document states clearly that the benefits outweigh the risks, and all rheumatic patients should get the vaccine.
41:16 - Many patients just want to hear about the basics of the vaccine, but not all of their physicians have all of the information to have informed discussions with their patients.
42:10 - What happens if some rheumatologists refuse to endorse the ACR guidelines and continue to discourage their patients from receiving the vaccine? Should patients still pursue shared decision-making with a doctor who is not complying with ACR?
42:33 - Now that there is an official guidance document from ACR, hopefully everyone can utilize that to support those conversations.
43:22 - Are the ACR guidelines useful for rheumatologists in other countries that may not even be using the mRNA vaccine?
43:47 - The ACR guidelines are very relevant because the guidance is drawn from studying previous vaccines, not the mRNA vaccines specifically. It doesn’t matter whether it’s an mRNA vaccine or where the doctor is located, the science is the same.
45:15 - There are discordances among guidances issued by different organizations. The National Psoriasis Foundation recommended that most patients should continue biologic or oral therapy when receiving their vaccines, but they did not offer any specifics. The ACR guidance did offer specific guidance for psoriatic arthritis patients about biologic usage and the vaccine.
47:04 - We don’t really know the answer for sure about what patients should do with regard to their medications and the COVID-19 vaccine, but the vaccine is so effective that whatever you decide with your doctor should be fine.
48:39 - We don’t have any lab test to measure the efficacy of the vaccine for an individual patient because we don’t know what antibody titer would convey protection against the virus.
50:00 - There are already a large population of people who reject vaccines outright, and then they see news stories that focus on misleading interpretations of data. The ACR guidelines offer clarity and impartial information to patients trying to juggle multiple opinions and information sources to decide what is best for themselves and their families.
52:23 - What can we do to get the ACR guidance information in front of the patients who need it to make the best decision for their health?
53:27 - Disenfranchised patients in particular may not want to hear from their physicians at all. That’s one benefit to operating the vaccination clinics through community health centers.
56:30 - How can patients get involved with clinical research about COVID-19 vaccines?
56:43 - Dr. Kim is expecting to report preliminary data in 2-3 weeks on the efficacy of COVID-19 vaccine response in patients on immunosuppressants.
1:00:10 - Rheumatic disease patients and parents of juvenile patients can participate in a survey with the COVID-19 Global Rheumatology Alliance to help researchers understand the impact of the pandemic on rheumatic disease patients.
1:01:33 - Tiffany thanks Kelly, Dr. Kim, Dr. Strand, and Dr. Sparks for participating in this important episode.
1:02:29 - We want to hear from you on social media, especially Twitter where the rheumatologists are active. We are @IFAiArthritis on all platforms. How can we get more information to patients about the vaccine and the ACR guidance to facilitate shared decision-making?
1:02:50 - Visit aiarthritis.org/rheumyrounds to participate in a survey about your opinions on all of the topics we discussed today.
1:03:13 - If you are a practicing rheumatologist and would like to get involved in a future episode of Rheumy Rounds, there is a link where you can sign up to do that, and we would love to have your input.
1:03:32 - Find Dr. Kim on Twitter @AlHKim where he recommends that all patients receive these safe and effective vaccines.
1:04:07 - Find Dr. Sparks on Twitter @ JeffSparks where he encourages patients to discuss any concerns they may have about the vaccine with their doctor so that they will feel comfortable getting this safe and effective vaccine.
1:04:32 - Dr. Strand wants to remind everyone that the vaccinations are safe and very effective, and this is our best chance at going back to living life as we should be.
1:05:46 - Visit aiarthritis.org/vaccinations to get your questions about vaccines addressed personally.
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We are excited to announce the return of our Rheumy Rounds episode series, starting with a special episode release this Wednesday, February 24th! Joining us at the table are Dr. Al Kim, Dr. Vibeke Strand, Dr. Jeffrey Sparks, and returning co-host Kelly Conway - facilitated by patient host, Tiffany Westrich-Robertson (CEO of AiArthritis). In this special episode, we will be diving deeper into the perceived barriers of vaccination from both a patient perspective as well as that of the rheumatologist. How do we assess the benefits and risks of vaccination? What solutions are available to the AiArthritis community? All this and more will be discussed- be sure to listen this Wednesday and join the conversation!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
This week join your patient co-hosts Tiffany Westrich-Robertson, Charis Hill, Richard Howard, and Jennifer Walker for a round table conversation about the debate surrounding the nomenclature of the Spondyloarthritis disease umbrella. Tiffany is the CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis and a patient living with non-radiographic axial spondyloarthritis. Charis is a disability advocate, the author of the blog Being Charis, and a patient originally diagnosed with ankylosing spondylitis, and while would fit the current description (with radiographic damage), at diagnosis they did not have radiographic damage. Rich is the Chief Mission Advancement Officer for the Spondylitis Association of America (SAA) and a patient diagnosed with ankylosing spondylitis and meets the 'text book' description. Jen is a patient advocate and person diagnosed with both rheumatoid arthritis and non-radiographic axial spondyloarthritis.
In the past few years, there was a move to rename this group of spondy diseases as Axial Spondyloarthritis - which includes a continuum of non-radiographic and radiographic (radiographic synonymous with Ankylosing Spondylitis). This means the traditional Ankylosing Spondylitis term will soon be phased out. As persons living with spondyloarthritis conditions, and members of broader patient communities, they know not every patient is aware of these changes.
Tiffany, Charis, Rich, and Jen all attended an American College of Rheumatology (ACR) Study Group on this topic, but due to time constraints, were not able to fully share their opinions with the doctors and researchers in attendance. During this session, participants discussed the pros and cons of using the umbrella term "Axial Spondyloarthritis" (remove non-radiographic/radiographic subgroups) or keeping the differentiated subgroup names. Furthermore, doctors and researchers pointed out the name may not fully reflect the experience of patients (particularly those with less spine inflammation), and as a result, suggested possibly changing the name again. And finally, doctors posed the question, "What do we call it when we talk to patients, particularly those newly diagnosed? What type of education do we provide them?" As people living with these conditions, who are strong supporters of early diagnosis, education, and precision/personalized research, they have their own opinions about this name evolution. This episode serves as an extension of that session, but with a focus on what patients think, feel, and need...and we are asking all of you to share your thoughts and opinions, too.
- What are your thoughts on another name change? Pros? Cons? If you are a patient, were you even aware that Ankylosing Spondylitis is being phased out?
- What would you have liked to hear when you were diagnosed: an umbrella term or a specific variant name? Why?
- Patients - how should doctors educate us about these conditions?
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. AiArthritis Voices - our online platform designed to deepen these conversations - allows all patients and parents of juvenile patients to attend conferences like ACR through our innovative new Learn and Connect section. So come join us to continue this and other conversations. You can also weigh in on social media @IfAiArthritis on all platforms or by sending us an email @ podcast@aiarthritis.org.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Episode 55: Patients Weigh In What's in a Name - the Spondy Evolution
00:53 - Tiffany welcomes listeners.
01:20 - Tiffany welcomes her fellow Spondyloarthritis patient co-hosts Charis Hill, Richard Howard, and Jennifer Walker.
03:51 - Today’s episode is a continued conversation from an American College of Rheumatology Conference study group about the nomenclature (naming) of Spondyloarthritis.
04:55 - Tiffany shares her diagnosis story and how the addition of the Non-Radiographic Spondyloarthritis diagnosis changed her disease journey.
06:35 - Jennifer had to fight with her doctor to get her diagnosis because rheumatologists are so resistant to acknowledging that patients could have both RA and AxSpa.
08:58 - Changing the name of a disease after patients have spent years fighting for a diagnosis can feel like the rug is being pulled out from under you.
12:10 - Charis feels strongly that having the entire community of patients, physicians, and researchers united behind one name is very important.
13:30 - Ankylosing Spondylitis is now a continuum of Non-radiographic axial spondyloarthritis to radiographic axial spondyloarthritis, but not everyone agrees that these new terms are sufficient to cover the full spectrum of disease presentation in patients with varying symptoms and physiological disease processes.
15:18 - This conversation is relevant for all AiArthritis patients because so many AiArthritis diseases have movements to change names or formally recognize differences in patient experiences.
15:52 - Prior to the name change, people with nr-AxSpa (who are more often women) were told they had “undifferentiated spondylitis,” and their disease progression - which was often more disabling than traditional Ankylosing Spondylitis - was not even acknowledged by their physicians.
18:00 - Rheumatologists often tell patients that the name of their disease doesn’t matter because it doesn’t change how it will be treated, which can be very frustrating for patients.
18:22 - Changing the name of a disease in a patient record can change the treatment options based on what private insurance or national health plans will cover for a given diagnostic code.
19:11 - Information on the internet that is accessible to patients is not always reliable or accurate because information changes so quickly as the research evolves.
25:11 - Doctors favor lumping all patients on the AxSpa continuum under one umbrella.
25:34 - One of the big questions put forth to the study group was: how do we educate patients?
25:58 - As a patient, Tiffany wants to understand where she fits on the continuum so she can build relationships with other patients and know where she is in terms of disease progression.
26:52 - Medical practitioners have a tendency to try and simplify things for patients, but that can be frustrating for people who want a depth of knowledge about their condition.
27:48 - Patient advocates have to juggle their own preferences, the need for scientific accuracy, and the larger patient community’s preferences.
30:02 - The Spondylitis Association conducted a survey of their members, and the feedback strongly indicated a preference to retain the “Ankylosing Spondylitis” name among people who were initially diagnosed that way.
33:08 - Specific names for disease conditions can be validating for patients, but belonging to an umbrella “family” of diseases is also a positive community experience.
34:05 - Over-specificity may be confusing for patients who don’t have a background in medicine.
36:50 - ICD Billing codes heavily influence nomenclature.
38:48 - Patients need to know what they have in order to participate in research projects or participate in conversations that impact their lives.
43:31 - Knowing more about the variants of the disease can help doctors treat patients more effectively.
44:45 - It might be helpful to have a pamphlet that covers the variants of the Spondyloarthritis umbrella for newly-diagnosed patients.
48:19 - It is naive in 2021 to have a disconnect between what doctors tell their patients and what is coded in the medical record since patients all have access to their electronic medical records now.
49:27 - Rheumatologists never distinguish between seronegative and seropositive RA, but patients very often specify which variety they have.
50:27 - The ACR study group did an informal survey of the rheumatologists in attendance and found that 50% of respondents were still giving nr-AxSpa patients an Ankylosing Spondylitis diagnosis.
50:54 - The AiArthritis community - including both patients and physicians - needs to get on the same page with regard to the nomenclature.
51:10 - The next step in this process should be to host conversations between patients and rheumatologists to get doctors to listen and react to the patient perspective.
52:32 - Patients with chronic diseases have long-term relationships with their physicians.
53:13 - Doctors often decide what they think patients need to hear, and it can negatively impact patient treatment when patients aren’t given all the information they need to advocate for themselves and participate in their own treatment decisions.
54:23 - Nomenclature decisions don’t just impact doctors and patients as regulatory agencies, insurance companies, researchers, and the pharmaceutical industry may all want to participate in this decision.
56:20 - Tiffany thanks Charis, Rich, Jen, and the listeners for joining us today.
56:46 - For more information, visit us on social media @IFAiArthritis on all platforms.
57:08 - We especially want to know what you would have liked to hear when you were diagnosed: an umbrella term or a specific variant name?
57:44 - If you are any other stakeholder, we would love to hear from you also on social media or you can email us @ podcast@aiarthritis.org.
58:50 - You can find Jennifer on Facebook, instagram, or Twitter @UnexpectedAdvocate or on the web @ jwalkerart.com.
59:40 - You can find Charis on Twitter @BeingCharisblog or on the web @ beingcharis.com.
1:00:25 - You can find the Spondylitis Association of America @Spondylitis on all social media platforms or on the web @ spondylitis.org or get in touch with Rich directly @RichAHoward on all platforms.
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This week join your patient co-hosts, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis, and Kelly Conway, co-founder of AiArthritis and author of the popular blog As My Joints Turn: My Autoimmune Soap Opera, as they sit down with Dr. Al Kim, Rheumatologist and Founder & Co-Director of the Lupus Clinic at the Washington University School of Medicine. Today’s episode will be a heart-to-heart conversation with Dr. Kim about questions, concerns, and mixed messages surrounding the COVID-19 vaccine.
Tiffany and Kelly, as people who live with AiArthritis diseases and participate in online patient communities, realized patients still had a lot of questions about the vaccine. How might their diseases and treatments affect its safety and efficacy? Should they even get it? They also discovered that not all rheumatologists were recommending the COVID-19 vaccine for patients, despite the general consensus that vaccination is suggested by groups like the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR).
So is the vaccine safe for us? How will our treatments interfere with the safety and efficacy of the vaccine, if at all? And what can we do as a community if rheumatologists are providing inconsistent and misguided advice that patients then share with each other, leading to more confusion and questions? So we turned to an expert who understands the importance of the informed patient’s role in a shared decision-making model.
Dr. Kim and his colleagues are leading a study called COVID-19 Vaccine Responses in Patients with Autoimmune Diseases which seeks to examine the quantity and quality of immune responses generated to the vaccine by autoimmune patients, as well as the safety of the vaccine for those patients. He provides answers to all of our patient-generated questions and provides actionable advice you can use to make the best decision for your own care.
Special thanks to Bristol Myers Squibb for sponsoring our COVID-19 & AiArthritis Series.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
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Disclaimer: This is meant to be informative, but not to provide medical advice. Every person living with AiArthritis diseases must make vaccination choices based on their self-education then contact their rheumatologist or practicing physician and determine a solution together (shared-decision making). It is important you determine the best course of action for YOU, based on your own individual health situation.
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Show Notes: Episode 54 – COVID19 & AiArthritis Special Series - Join patients & rheumys to tackle questions & mixed messages surrounding the COVID19 vaccine.
Questions bolded were submitted by our patient community.
00:53 - Tiffany welcomes listeners.
01:20 - Tiffany welcomes her rheumatologist, Dr. Alfred Kim and fellow patient co-host, Kelly.
02:00 - Today’s episode is about the COVID-19 vaccine and AiArthritis patients.
02:17 - Patients are sharing many differing pieces of information - not all of it accurate or clear - about the safety and efficacy of the available COVID-19 vaccines, so our organization decided to put together this episode, and the information will be added as an extension to our existing website @ aiarthritis.org/covid19 - subpage Vaccines. We will be constantly updating this information as more resources become available.
03:44 - Dr. Kim is an adult rheumatologist on the faculty at Washington University School of Medicine, as well as the founder and co-director of the Lupus Clinic at Washington University.
04:34 - Kelly is a co-founder of AiArthritis, as well as a patient living with Rheumatoid Arthritis and the author of the blog As My Joints Turn: My Autoimmune Soap Opera.
05:42 - Patients will always talk to other patients when making decisions about their own care, so the widespread sharing of misinformation about the COVID vaccine, as well as patient fears and concerns about the effect the vaccine could have on their disease, should be addressed so that all members of the AiArthritis patient community can make the best decision for their individual care.
07:05 - Dr. Kim, can you give us some general background information on vaccines?
07:11 - According to Dr. Kim, vaccines represent the most important modern medical advancement.
07:55 - After the immune system fights off a pathogen, it creates a memory response of the disease and the best way to kill it. Vaccines leverage this function of the immune system to protect patients from specific diseases.
09:03 - Is the COVID-19 vaccine a live virus vaccine?
09:12 - There are four basic types of vaccines: live attenuated (which are not generally recommended for patients on immunosuppressant medications), inactivated, subunit, and toxoid vaccines.
13:03 - Inactivated, subunit, and toxoid vaccines are all safe for patients on immunosuppressive medications.
16:05 - Some patients have already made a decision without accurate information about the vaccine or based on either misinformation about the virus itself or poorly informed advice from their doctor.
16:50 - People only know what they know, but it’s dangerous when they don’t know what they don’t know because then they start acting thinking they have complete knowledge of a situation.
17:07 - “This is a real problem in my mind that there are doctors saying that [the vaccine is] too new.” This science is not new. It has been used for decades. Dr. Kim will elaborate on this point later.
19:30 - The COVID-19 vaccine is not “FDA approved,” but it does have an Emergency Use Authorization from the United States Food and Drug Administration, which effectively does the same thing.
20:10 - Kelly lost her father and uncle to COVID-19 in November and December of 2020, which influenced her decision to get the vaccine as soon as possible.
22:53 - Some patients have even received conflicting advice from different doctors they see, making it very difficult for anyone to make an informed decision.
24:10 - Physicians - like everyone - don’t know what they don’t know.
24:15 - The technology used in the COVID-19 vaccine is new for humans, but it has been used in animals for decades. People who say it is “new” are uninformed, and some doctors are making recommendations to patients based on misunderstandings.
25:21 - Dr. Kim’s faculty is trying to make sure that all doctors in their region understand that every rheumatologist should be offering the COVID-19 vaccine to all of their patients.
26:00 - How is the vaccine going to impact rheumatology patients? Will it cause patients to flare? Will it activate AiArthritis diseases that may be in remission or well managed? Could AiArthritis patients experience significant negative impacts as a result of taking the vaccine?
27:37 - The honest response is: most likely it won’t, but nobody can be sure on an individual level because studies are looking at population level statistics
28:09 - There are significant potential benefits to AiArthritis patients because we know that COVID-19 impacts rheumatic patients more severely than the general patient population.
28:35 - It is possible that patients may experience a rheumatic disease flare for up to a month after receiving the vaccine.
30:10 - The vast majority of rheumatic disease patients, regardless of their medication, will be fine to receive the vaccine and will not experience a disease flare or increased incidence of adverse events compared to the general patient population.
31:56 - If patients have a history of adverse reactions to biologics or other medications, should they be concerned about getting the COVID-19 vaccine?
32:27 - Because the components of the vaccine are very different than those used in biologics or other medications, these are unrelated situations. The likelihood of them having another reaction is very low.
34:36 - Should AiArthritis patients discontinue biologics or DMARDs before or after taking the vaccine to optimize the efficacy of the vaccine?
38:00 - Dr. Kim is advising his patients to continue their medications and receive the COVID-19 vaccine. Patients on Rituximab should assume that their vaccine response will be reduced and deal with that separately.
41:27 - One problem highlighted by the COVID-19 pandemic has been the need for a method of disseminating actionable and trusted information to physicians and patients in rapidly changing situations.
44:58 - Is it true that AiArthritis patients are likely to have reduced antibody responses to the COVID-19 vaccine due to immune suppression? Or that our medications will impact the effectiveness of the vaccine?
45:30 - It is possible that some patients on a few medications (specifically rituximab/Rituxin, methotrexate, and Abatacept/Orencia) may have reduced antibodies, but it is not clear that this will compromise the effectiveness of the actual vaccine.
47:17 - Dr. Kim and his colleagues are leading a study called COVID-19 Vaccine Responses in Patients with Autoimmune Diseases which seeks to examine the quantity and quality of immune responses generated to the vaccine by autoimmune patients, as well as the safety of the vaccine for those patients.
48:09 - The study will also look at how immune responses to the vaccine evolve over time and how immunosuppression impacts long term effects.
49:34 - There is a theoretical risk that patients on immunosuppressants may not be protected to new mutant strains of SARS-CoV-2, so the study will also seek to address this concern.
51:31 - Dr. Kim is hoping to be able to report early results of the study within a month and more detailed results possibly as early as Summer of 2021.
53:41 - Which COVID-19 vaccine should I choose?
53:59 - The Moderna and Pfizer vaccines are very similar, and patients should get whichever version they can access.
54:35 - There was a theoretical risk that the vaccine could have triggered flares in Lupus patients, but the stability changes made to the vaccine coincidentally made the RNA in the vaccine significantly less inflammatory. Lupus patients are now advised to get the vaccine if they can.
58:56 - Bottom line: Should I take this vaccine?
59:22 - The vast majority of rheumatic patients - regardless of medications - will likely have a positive response to the COVID vaccine with minimal issues concerning safety or flares.
59:42 - As previously noted, patients on rituximab/Rituxin, methotrexate, and Abatacept/Orencia may be the exception with regard to vaccine efficacy, but it is still a safe option for them that could convey some protection from COVID-19.
1:00:00 - Dr. Kim would like to see all rheumatic patients get the vaccine to protect them from the potential for severe impacts of COVID infection.
1:00:54 - According to Dr. Fauci, we will be able to relax public health measures (like wearing masks) when 70-80% of the US population has been vaccinated. Until then, everyone should continue taking precautions to avoid spreading the COVID-19 virus even if you have been vaccinated.
1:01:12 - Will I need another COVID vaccine next year?
1:01:25 - Dr. Kim will reach out to a colleague for an answer on this and update us. Follow our website @ aiarthritis.org/covid19 for these updates. Dr. Kim’s best guess is that the vaccine will not need to be re-administered every year because the virus does not mutate as fast as influenza (which does need to be done annually), but boosters may need to be redone every few years.
1:03:23 - This vaccine technology was already in place and was easily adapted, and the vaccines are relatively easy to make. Hopefully this information helps allay fears from people who were concerned that the vaccine was made “too quickly.”
1:03:48 - Tiffany thanks listeners for joining us today.
1:04:34 - If you have additional questions, email us @ podcast@aiarthritis.org or visit us on the web @ aiarthritis.org/covid19
1:04:55 - If you are a person living with these diseases or the parent of a juvenile patient, go to aiarthritisvoices.org and sign up to join our online community space where we will talk more about COVID-19 and all our other projects and events.
1:05:12 - If you love the show, please give us a rating and subscribe wherever you listen to podcasts.
Be sure to check out our top-rated show on Feedspot!
This week join your patient co-host Tiffany Westrich-Robertson, CEO of International Foundation for Autoimmune and Autoinflammatory Arthritis, as she gives our annual “Year End Review” reflection. In honor of this unprecedented year, this episode will not be the usual briefing on the annual accomplishments of the organization. That information is still available on our website at www.aiarthritis.org, and we will be publishing an annual report very soon.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. We seek to improve communication, research, and education and ensure access to the best treatments possible by listening to all voices and perspectives. If 2020 has taught us anything, it should be that everyone can be facing the same set of conditions and have different needs and perspectives based on their lived experiences. We thank you for your support of the show and the organization and look forward to hearing your perspectives in the future.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 52 – “Unprecedented Year in Review”
00:52 - Tiffany welcomes listeners
01:12 - Today’s episode is a year end review for this unprecedented year
03:05 - Some things that are very common in our lives right now like masks and zoom happy hours were unheard of just a year ago
04:36 - Many people feel like others don’t understand their experience during the pandemic
05:39 - Tensions run high from the prolonged stress, economic strain, etc.
06:43 - AiArthritis will be putting out an annual report on our 2020 activities for those that want a detailed accounting of our organizational year in review
08:25 - AiArthritis patients struggles to connect with friends due to fatigue and pain, so normalizing zoom for socializing is a positive step for our community
08:45 - Hopefully the experience of the pandemic will allow others to understand what AiArthritis patients experience as part of their normal lives
09:40 - AiArthritis is focused on improving communication, research, and education and ensuring access to the best treatments possible by listening to all voices
10:05 - Tiffany thanks listeners for their support during this unprecedented year
This week join your patient co-hosts Danielle Dass, Mariah Leach, and Cheryl Crow as they bring an important topic from the American College of Rheumatology Annual Conference to our show - a session that Mariah and Cheryl led at the conference! This episode will be part of a series of planned episodes on postpartum challenges for new mothers living with AiArthritis Diseases. Today’s episode will focus on the emotional and physical challenges of breastfeeding.
Mariah Leach is the founder of Mama’s Facing Forward, a group dedicated to providing support and resources for pregnant women and mothers living with chronic illness. Cheryl Crow is an Occupational Therapist and the founder of Arthritis Life which seeks to provide daily living support for people living with AiArthritis Diseases. They will discuss the decision to breastfeed or formula-feed, resources for new mothers, safe treatment options while nursing, and ways to reduce pain and strain while nursing.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. AiArthritis Voices - our online platform designed to deepen these conversations - allows all patients and parents of juvenile patients to attend conferences like ACR through our innovative new Learn and Connect section. So come join us to continue this and other conversations!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 51 – “Oh Mama!”
00:52 - Danielle welcomes listeners
01:45 - Today’s episode is about breastfeeding with an AiArthritis Disease
02:09 - This episode is a continuation of Episode 11, which was about pregnancy with an AiArthritis Disease
02:23 - Danielle is joined today by Mariah Leach and Cheryl Crow who presented a session at the American College of Rheumatology Conference on supporting new mothers during the postpartum period
02:43 - Mariah and Cheryl introduce themselves
03:04 - Mariah had nowhere to go for support when she struggled as an RA patient in the postpartum period so she founded Mama’s Facing Forward, a Facebook group and website that focuses on pregnancy and parenting with chronic illness
04:18 - Cheryl is an Occupational Therapist and an RA patient who founded Arthritis Life to help arthritis patients navigate their daily lives
06:53 - Breastfeeding is one of the most common postpartum issues new moms want to discuss
07:14 - The decision of whether or not to breastfeed should be a personal one, but many new moms feel a lot of pressure from others to nurse their new baby
08:37 - Breastfeeding isn’t always the best choice for a new mom, especially one living with a chronic illness
08:59 - Fed is best. Choosing not to breastfeed is a valid option for any mom.
10:00 - The Fed Is Best Foundation is an excellent source for information about all feeding options, including breastfeeding, formula-feeding, and even using donor milk
10:39 - Breast is best in a vacuum, but no mother lives in a vacuum
12:36 - Currently there are many treatment options for AiArthritis patients that are safe to use while breastfeeding
13:56 - Women should never have to choose between medicating their AiArthritis disease and breastfeeding
14:13 - Moms who need to take medication while pregnant or breastfeeding should consult Mother To Baby (mothertobaby.org), a website-based resource that collects information to help moms make informed choices
15:15 - If you are experiencing difficulty while performing your activities of daily living (feeding, dressing, changing, or caring for your baby), an occupational therapist can help you find strategies for dealing with both emotional and physical challenges
16:12 - You may have to ask your doctor for a referral since not all doctors know that they can send patients to an OT for help with postpartum issues
17:24 - To reduce pain while breastfeeding, consider the ergonomics of your positioning as well as how you’re holding the baby
18:20 - Having an accountability partner in the home to help remind you to use healthy posture while nursing can be helpful to reduce strain and repetitive stress injuries
20:32 - If you will be bottle-feeding your baby, try to choose a bottle that is easy for you to open and close
20:50 - Moms who will be pumping may benefit from a handsfree breast pumping bra so they don’t have to hold the bottles for extended periods of time
21:13 - Try to choose clothing that is conducive to breastfeeding but does not stress your hands with the closures
22:50 - A breastfeeding pillow can be helpful for supporting ergonomic positioning while nursing, as well as reducing the need to support the baby’s weight while nursing
23:59 - Alternate positions like side-lying or the football hold can also be helpful if holding the baby in the traditional nursing fashion is causing pain for Mom
25:20 - If a position doesn’t work for you, it may be worth revisiting later because your preferences may change as the baby develops or even with a subsequent child
26:33 - If you want more information about this occupational therapy for AiArthritis patients, you can check out Cheryl’s website @ myarthritislife.net or find Cheryl on ticktock (@arthritislife)
27:20 - Mariah invites listeners with chronic illness to join Mamas Facing Forward on Facebook or find her on instagram and twitter (@mamasforward)
28:05 - Mariah and Cheryl will be back for more episodes on this topic soon
29:08 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org or visit aiarthritis.org/aiarthritisvoices to continue this conversation with us
30:05 - Danielle invites listeners to connect with us on all social media platforms @ IFAiArthritis or email us @ podcast@aiarthritis.org
30:17 - Danielle thanks Mariah and Cheryl for co-hosting today’s episode
30:37 - Please consider supporting the show by donating at aiarthritis.org/talkshow
The session from the American College of Rheumatology (ACR) 2020 led by Mariah and Cheryl is called Reproductive Health: Meet Women's Needs. Description: Addressing reproductive health needs is an emergent priority for the rheumatology community. New research provides guidelines for how to safely treat and counsel rheumatology patients about reproductive health. Still, women with rheumatic disease lack needed health information to make evidence-informed decisions about family planning. This panel session will outline the unique needs during the stages of pre-pregnancy, pregnancy and early motherhood of reproductive-aged women diagnosed with rheumatic disease.
This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constein, and Patrice Johnson as they take us back stage at the American College of Rheumatology Annual Conference. This episode will focus on a session from ACR titled “Grit, Gratitude, and Grace” about the impact that positive psychology can have on disease and pain management for AiArthritis patients.
Researchers induced pain in healthy adult military cadets to study the relationship between mindset and pain perception. They found that subjects with more positive attitudes, resilience to adversity, and growth mindsets reported lower pain levels than those who did not share those traits. Scientists have also discovered a link between pain and mental health. Depression and anxiety can even trigger an inflammatory response and the corresponding pain in some people. But patients know that just telling someone to have a positive attitude does not help them, so Tiffany, Deb, and Patrice will dig into the specific ways that you can harness grit, gratitude, and grace to feel happier and experience less pain.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. AiArthritis Voices - our online platform designed to deepen these conversations - allows all patients and parents of juvenile patients to attend conferences like ACR through our innovative new Learn and Connect section. So come join us to continue this and other conversations!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 50 – “Grit, Gratitude, and Grace”
00:52 - Tiffany welcomes listeners
01:37 - Tiffany is joined today by Deb and Patrice, who attended the virtual American College of Rheumatology Conference with Tiffany
02:49 - Patients are increasingly demanding a “whole body approach” to treating AiArthritis Diseases which may include non-pharmacologic therapies
03:31 - One of the sessions at ACR discussed the effect of positive mindset on disease and pain management
06:38 - The speaker focused heavily on how individuals respond to adversity and why some people are more resilient than others
06:59 - When you experience adversity, what happens inside your body?
07:28 - People who are more resilient (ie have grit) tend to experience less pain
08:23 - People with military training tend to have strong resilience, so researchers studied grit in cadets by inducing pain in healthy subjects
09:13 - The cadets with the most positive attitudes had higher pain thresholds and more resilience to pain
09:40 - Other research has shown that depression and anxiety can trigger inflammatory responses and pain in subjects
11:30 - People with a fixed mindset (as opposed to a growth mindset) are more likely to feel depressed and have higher levels of pain
12:24 - There are two types of gratitude: worldly (where you are thankful for specific things) and spiritual (where you are thankful to a higher power for all you have)
13:09 - Keeping a 30 Day Gratitude Journal can help people experience less turmoil, less anxiety, and less pain
14:16 - Deb is thankful in some ways for her disease because it has connected her to so many people and experiences that are very rewarding
15:19 - Grace is a feeling beyond simple thankfulness where you identify a direction and purpose in life
16:35 - People who feel like they have a purpose in life reportedly experience less anxiety, less depression, and better sleep
19:00 - Tiffany, Deb, and Patrice share their self-identified character strengths
22:28 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org to attend more conferences like this and continue this conversation with us
23:26 - Tiffany invites listeners to get involved in any of our projects by visiting us on the web at aiarthritis.org
23:40 - Please consider supporting the show by donating at aiarthritis.org/talkshow
23:54 - Tiffany thanks listeners for their support as AiArthritis Voices 360 celebrates our first Anniversary as a talkshow
Special Series: American College of Rheumatology (ACR) Scientific Meeting 2020, "Go with Us!" to Conferences program
This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constien, and Patrice Johnson as they take us backstage at the American College of Rheumatology Annual Conference. Tiffany and Deb attended two sessions at the conference on Stills Disease, and they brief Patrice and the rest of us on what they learned. Regardless which "auto" disease you have, this conversation is important, as it provides an insider view of what is being taught to doctors to help them expedite diagnosis.
One of the most important take-away messages from the ACR sessions is that doctors need to hear patient stories (or Case Studies) to improve their understanding of our diseases - especially when they are rare, like Still's, or in cases where presentation mimics other conditions.
Join us as we continue attending conferences, like the ACR, in our AiArthritis Voices online community - "Go with Us!" to Conferences program. It's your turn to pull up a seat! Join Tiffany and all the other Voices 360 co-hosts to continue this conversation inside our new, coordinating AiArthritis Voices ONLINE COMMUNITY - where patients unite with others around the world to talk, learn, and connect.
Living with Still's disease? If you are a patient living with Stills or the parent of a juvenile living with Stills, AiArthritis wants to hear from you! Visit our Stills Disease Awareness project at aiarthritis.org/mystills where you can submit your Stills Disease story. There you will also find patient-reported Still's brochures and educational materials for download.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 49
00:53 - Tiffany welcomes listeners
01:42 - Tiffany is joined today by Deb and Patrice
03:02 - AiArthritis Voices Online Community members can “go with us” to conferences, including the American College of Rheumatology (ACR)
04:17 - If you are a person living with an AiArthritis disease, register at aiarthritisvoices.org to join the co-hosts behind the scenes at the ACR
06:36 - The Learn and Connect Section on aiarthritisvoices.org will give you access to a variety of topics covered at ACR
07:11 - Today’s episode will cover a topic from 2 sessions at ACR on Stills Disease
09:03 - Patients diagnosed after age 16 are said to have Adult Onset Stills Disease (AOSD), while patients diagnosed before age 16 receive a diagnosis of Systemic Juvenile Idiopathic Arthritis
09:45 - Stills Disease is the new umbrella term that encompasses AOSD and SJIA
12:39 - Stills Disease is rare and has historically been a difficult condition to diagnose
13:24 - Patients may be diagnosed with AOSD but recall having symptoms as a child, which complicated the diagnosis before the medical community adopted the umbrella terms of Stills Disease
14:20 - The pathology of the way the disease presents is largely the same regardless of the age of the patient
17:58 - Stills Disease is an autoinflammatory disease, which means there is no known trigger to the onset of the disease and results in more systemic symptoms
20:30 - Many Stills patients do not like being associated with the term “arthritis” because as many as 25% of them do not present with any arthritic activity
23:58 - For more information about Stills Disease, you can visit aiarthritis.org/mystills
25:02 - The ACR presenter recommended that patients and parents of juvenile patients keep a journal of symptoms to help doctors diagnose a problem effectively
29:13 - Most juvenile Stills Disease patients have onset before age 5
29:33 - Children that young do not have the communication skills to convey their symptoms, making journaling by the parents so critical due diagnosis
31:03 - Shared decision-making between doctors and patients is critical to satisfactory care
33:25 - Research has shown that active and uncontrolled autoinflammatory disease can act as a trigger for the adapted side of the immune system
35:00 - Stills Disease is a diagnosis of exclusion, meaning it can only be applied to a patient if autoimmune diseases have been eliminated as possibilities
38:26 - If you are a person living with Stills Disease or the parent of a juvenile Stills patient, we want you to share your story at aiarthritis.org/mystills
43:34 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org to attend more conferences like this with us
44:31 - Tiffany thanks listeners and invites them to get involved in any of our projects by visiting us on the web at aiarthritis.org/talkshow or all social media platforms @IFAiArthritis
45:03 - Please consider supporting the show by donating at aiarthritis.org/talkshow
Join Patrice, Effie, and Rick as they share their experiences with support - which all differ per personal relationships and perspectives. That means there are different needs that we must address to help everyone.
Patrice has no support from her spouse, Rick has tremendous support from his, and Effie weighs in on support needs from a single's point of view. They also talk about the needs of all others involved in our journey, as AiArthritis diseases impact every person in our lives. In turn, they too have support needs.
If you are a person living with AiArthritis diseases, what's your experience with support from the various people in your life? What could be improved? What works well?
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 48 – “Support”
00:53 - Patrice welcomes listeners
01:28 - Patrice is joined by Effie and Rick
02:17 - Today’s episode is about support networks
02:43 - Patrice shares her story of living with AiArthritis without any support from her family
03:31 - Patients with AiArthritis may not be able to divorce their spouse if they rely on them financially or for health insurance
04:04 - The national divorce rate in the US is 40%, but it goes up to 75% when one spouse is chronically ill
04:25 - Women diagnosed with chronic illness are 6x more likely to be divorced than a male patient
05:00 - Patrice has built her own network of support among fellow patients since it wasn’t available from her family
05:51 - Volunteering may also provide an opportunity for patients seeking emotional satisfaction
06:19 - Rick shares his support story of being married to a supportive spouse
07:10 - For Rick, the point where he had to cease working was one of the most emotional times for he and his wife
07:59 - Rick doesn’t believe he could live without his wife’s support
09:19 - Effie shares her story of being a single individual in need of support for JIA/RA
10:24 - Loved ones of patients also need support
11:17 - AiArthritis diseases don’t just impact the person who has it, but also everyone around them
11:33 - The co-hosts discuss the issue of demonstrating grace in relationships
12:58 - Patients may feel they need to educate their children in particular since there may be genetic components to AiArthritis Diseases
13:27 - Patients may be plagued by guilt or regrets and need to forgive themselves before they can show grace to others
14:45 - Effie explains Spoon Theory
16:27 - It’s important to forgive other people for not understanding what it is like to live with a chronic illness
19:27 - Knowledge about autoimmune diseases - especially the fact that they aren’t a result of poor choices - is much more available now than it was in previous decades
20:33 - Older generations may be less likely to share about their diagnosis or ask for or offer support
22:36 - An AiArthritis diagnosis doesn’t necessarily define an individual
23:05 - It might be helpful for future generations of a family if a patient keeps a journal of their diagnosis and treatment journey so that this information and knowledge from experience isn’t lost
25:29 - Patrice thanks Effie and Rick for joining in the conversation today
25:43 - All patients and parents of juvenile patients are invited to join our sister site AiArthritis Voices at aiarthritis.org/aiarthritisvoices and meet any of the Voices 360 co-hosts or participate in the conversations about our episode topics
26:15 - Patrice thanks listeners and invites them to get involved in any of our projects by visiting us on the web or all social media platforms @IFAiArthritis
26:38 - Find Rick at RADiabetes.com or on Twitter (@LawrPhil) or on Facebook
26:51 - Find Effie at RisingAboveRA.com or on Twitter and Instagram @RisingAboveRA
27:29 - Please consider supporting the show by donating @ aiarthritis.org/podcast
This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, for a special AiArthritis Watch Party for the announcement of the winners of the 9th Annual WEGO Health Awards. The WEGO Health Awards were created to embody the mission of WEGO Health: to empower patient leaders by recognizing their contributions to the field of healthcare. There are 16 categories of awards that this year included over 13000 nominees and 96 finalists.
AiArthritis is thrilled to announce that we won the 2020 WEGO Health Award for Best Team Performance! We are so grateful to all of our volunteers, staff, and supporters for making this award and all of our work possible. Our mission at AiArthritis is to center the patient voice in ongoing conversations about the issues facing the AiArthritis community and to bring as many voices to the table for those conversations as we can. Whether you have been with us from the beginning or are listening to AiArthritis Voices 360 for the first time, we want you to be a member of our family because only together can we move mountains and shape the future of AiArthritis patient health.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 47 – “Teamwork makes the dreamwork: AiArthritis WINS Best Team Performance 2020”
00:53 - Tiffany welcomes listeners
01:05 - AiArthritis was co-founded by Tiffany in 2011, after she started an awareness campaign to let people know that Arthritis is not just a disease for elderly people.
02:59 - We are a family, and all of our volunteers are members of that family.
04:03 - AiArthritis was 1 of 13000 nominations and 96 finalists for the WEGO Health Awards this year.
05:40 - Hear the reaction when our volunteers found out we won the WEGO Health Award for Best Team Performance.
14:51 - Tune in at AiArthritis.org/talkshow to listen to any of our previous episodes or subscribe wherever you listen to podcasts
This week join us for an AiArthritis Voices 360 first! In honor of World Arthritis Day on October 12, 2020, seven of your recurring Voices 360 co-hosts come together for an essential conversation about educating the public and the medical community about the many different types of arthritis that exist, especially the key differences between Osteoarthritis and AiArthritis. Thank you to Tiffany Westrich-Robertson, Deb Constien, Rick Phillips, Effie Koliopoulos, Patrice Johnson, Suz Schrandt, and Judy Flanagan for participating in this important round table discussion.
Our organization was enlisted in 2012 by EULAR to help bring more attention on World Arthritis Day to the autoimmune/autoinflammatory diseases that also included arthritis, as they felt the day was heavily focused on OA. Since then, we have tried to make sure on World Arthritis Day to really focus on the AUTO + Arthritis so our community is heard.
Join the co-hosts as they dig into misconceptions about arthritis, as well as how the lack of public awareness contributes to poorer quality of life for people living with AiArthritis diseases.
- What do you think of when you hear the word "arthritis"?
- How have misconceptions negatively impacted your life?
- Some push for eliminating the word arthritis from the names of certain diseases, in the hopes that the misunderstandings can be eliminated - but is that realistic? Oh, yes, we go there.
We are putting this conversation on the table so you can join us inside our new and improved AiArthritis Voices online community - starting October 12th, World Arthritis Day - to continue the discussion. Then, together, we can increase educational efforts to combat this issue and bring more understanding to arthritis types.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 46 – “The A Word”
00:53 - Tiffany welcomes listeners
01:20 - Tiffany introduces her panel of patient co-hosts - including Deb, Rick, Effie, Patrice, Suz, and Judy
03:18 - Today’s episode will address the issue of differentiating arthritis types and the loaded nature of “The A Word”
04:00 - The panelists discuss the frustrations AiArthritis patients have because the word “arthritis” is usually associated with elderly people, but most AiArthritis patients have onset when they are young
05:35 - Patients may avoid the word “arthritis” when discussing their medical issues with people because so many people have mistaken assumptions about the word
08:44 - Other patients may be careful to say “Autoimmune Arthritis” to discourage people from thinking about traditional Osteoarthritis
10:46 - Due to poor understanding of the word “arthritis,” doctors may dismiss symptoms in young people or systemic symptoms of rheumatological disease that aren’t related to joint damage
15:17 - Suz discusses the importance of early diagnosis and treatment
18:37 - Treatment for Autoimmune Arthritis diseases usually focuses on preventing joint damage, but often the other systemic symptoms are ignored completely
25:09 - Patients may feel frustrated when they have to explain the difference between osteoarthritis and autoimmune arthritis to others
25:44 - Sometimes people are reluctant to see a Rheumatologist and will only discuss their symptoms with their Primary Care Physician, who may not be able to determine if joint pain is AiArthritis or Osteoarthritis
29:05 - The Stills Disease Community has recently tried to move away from the term “arthritis” due to frustrations around inability to get accurate medical care
31:11 - There are actually over 100 different types of Arthritis, but the majority of people only understand Osteoarthritis and aren’t even aware there are other kinds
32:31 - The public seems to have a better understanding of complex features of other diseases (like diabetes and asthma) than they do about arthritis
34:42 - The Diabetes and Medical communities have spent 20+ years educating people on the complex features of Diabetes to improve patient outcomes
35:58 - Because most people will experience Osteoarthritis at some point in their lives, it is the type of arthritis that is always going to be better understood than others
38:26 - The Lupus Community does not wish to be associated with the term Arthritis, even though Autoimmune Arthritis is a clinical component of their disease
40:09 - Sometimes people fail to understand the seriousness of AiArthritis because they believe patients never die from those diseases
41:24 - The 2020 EULAR conference had many seminars on the systemic nature of AiArthritis diseases because they cause more than just joint damage
42:49 - Many patients wanted the name of their disease changed to distinguish it from arthritis which requires a united global effort of all stakeholders
44:15 - In addition to issues with coding and research, rebranding diseases by name would consume a lot of resources that could be used for research or development of new medications
49:58 - Poor understanding of AiArthritis diseases by the public and medical community takes an emotional toll on patients who feel misunderstood and unsupported
52:36 - The invisible nature of AiArthritis diseases can also cause emotional and physical distress to patients as society places unreasonable expectations on them
54:12 - People are so uncomfortable talking about disease and death that they may inadvertently blurt out unsupportive commentary in a misguided attempt to lift someone’s spirits
59:47 - Join all of AiArthritis Voices 360 co-hosts to discuss this and other topics by visiting aiarthritis.org/aiarthritisvoices to join our new online platform which will be premiering on World Arthritis Day, October 12, 2020
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders so, together, we can solve problems impacting the autoimmune and autoinflammatory arthritis community.
Join Tiffany Westrich-Robertson, CEO, as she explains that each person - and our associated roles - are like marbles. If each stakeholder group is a color, and only one color is in the jar, we will never develop solutions that matter to all stakeholders involved in the problem. So we are evolving the show - and our associated online AiArthritis Voices platform, which will now be available for all stakeholders who wish to participate in the ongoing conversations.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 45 – “For All The Marbles”
00:53 - Tiffany welcomes listeners
02:36 - Today’s topic is an open invitation to all stakeholders in the AiArthritis community to get involved with our mission of trying to solve the most pressing issues impacting disease management and the journey of patients
04:15 - We want all the people involved in this community - not just the patients - to come to the table and help us address the issues our organization is trying to tackle
05:19 - Tiffany explains the AiArthritis logo and how it embodies the organization’s policy of bringing all voices to the table
09:46 - We need as many patient voices at the table for conversations as possible because Tiffany has not had the same experience with her disease that others may have had
11:28 - The organization and the Voices 360 show are evolving to bring more voices into the conversations
14:00 - On October 12, World Arthritis Day, the AiArthritis Voices online platform will open to all stakeholders. Previously it was only available for patients and parents of juvenile patients.
14:42 - All patients and parents of juvenile patients are invited to join our sister site AiArthritis Voices at aiarthritis.org/aiarthritisvoices and meet any of the Voices 360 co-hosts or participate in the conversations about our episode topics
15:15 - All other stakeholders can also join the AiArthritis Voices Forum by visiting aiarthritis.org/aiarthritisvoices
15:41 - Tiffany thanks listeners and invites them to get involved in any of our projects by visiting us on the web or all social media platforms @IFAiArthritis
This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she discusses the mission and future projects of the organization and the AiArthritis Voices 360 Talk Show.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. AiArthritis is proud to announce the impending publication of the first-ever 100% patient-reported symptoms brochure for Stills Disease, launching on September 7th 2020 - Stills Disease Awareness Day. This project could not have been possible without the participation of patients, like you, are willing to donate your time, expertise, and lived experiences.
This talk show was created to help bring more patient voices into the conversation about this and many other projects. We are very excited to transition to bimonthly episodes and incorporate the new AiArthritis Voices online platform to deepen these conversations and move more of our ongoing projects to their ultimate finish lines. We want YOU to join us at the table! Listen to this week’s episode to find out exactly how you can do that in this exciting new phase of the organization’s work.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 44 – “Connecting the Dots”
00:53 - Tiffany welcomes listeners
01:15 - Today’s episode is about how patients sharing their experiences can begin to solve the issues facing the AiArthritis patient community
3:00 - Tiffany shares her diagnosis story
5:00 - Many patients research their symptoms online to try and solve the mystery of what is happening with their body
6:18 - Symptoms recognized by the medical community may not always be consistent with the lived experiences of patients
10:09 - AiArthritis conducted an Early Symptoms Study to identify common patient-reported symptoms of 6 AiArthritis Diseases
11:25 - AiArthritis has a unique process that seeks to solve problems thru ongoing patient conversations
12:57 - One of our projects has been to develop a Stills Disease Pamphlet thru a campaign called “My Stills”
16:06 - The first ever fully patient reported Stills Disease brochures including a comprehensive list of symptoms will be published on September 7, 2020 - Stills Disease Awareness Day
17:38 - AiArthritis plans to repeat this process for all the other AiArthritis patient communities we serve
19:11 - Voices 360 will transition to bimonthly episodes so that the organization can devote more development time to each episode to include as many stakeholders as possible and accomplish as many of our goals as possible
20:18 - All patients and parents of juvenile patients are invited to join our sister site AiArthritis Voices at aiarthritisvoices.org and meet any of the Voices 360 co-hosts or participate in the conversations about our episode topics
20:38 - View all of our projects at aiarthritis.org
22:03 - Tiffany thanks listeners and invites them to get involved in any of our projects by visiting us on the web or all social media platforms @IFAiArthritis
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Juana and Estela Mata, co-founders of Looms 4 Lupus, as they discuss the complicated issues surrounding supporting patients living with autoimmune and autoinflammatory arthritis diseases and their loved ones.
Looms 4 Lupus is an organization dedicated to providing an environment for education and outreach to Lupus and Fibromyalgia survivors and their family members through multiple avenues such as hands-on workshops, informational clinics, bilingual resources, and psychosomatic support groups.
On this episode, Tiffany, Juana, and Estela talk about the need for support for AiArthritis patients from their inner circle of family and friends, as well as the support needs of people who have a loved one with a chronic illness. They discuss the importance of open communication in receiving and providing support and the need for raising global awareness for AiArthritis diseases so that friends and family members of people living with these diseases can better understand their loved ones needs and limitations.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. One of the most persistent problems facing patients is a lack of understanding by the rest of the world. Too often people who are suffering are dismissed, ignored, or belittled because their family members, friends, or doctors do not recognize the symptoms of their disease. You can be a part of helping us change that. We need you to share your story.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 43 – “Support - It’s a Family Affair”
00:53 - Tiffany welcomes listeners
01:30 - Tiffany is joined today by Estela and Juana Mata, co-founders of Looms 4 Lupus
2:40 - Today’s topic is support for loved ones who are AiArthritis patients
2:47 - Tiffany explains the way the talkshow and the AiArthritis organization approaches projects to help improve the lives of AiArthritis patients
4:18 - Estela and Juana discuss their experience as a family supporting Juana’s battle with Lupus and co-morbidities
5:48 - Family members of AiArthritis patients also require support
9:43 - Support may look very different from one family to the next or even among different members of the same family
13:57 - Family members may need assistance to find the best way to help and support their loved one living with an AiArthritis disease
16:30 - Diagnoses that are more familiar to people like cancer tend to illicit immediate support because people may feel more empathy for conditions they understand
18:18 - AiArthritis patients may face judgment from others because people don’t understand their disease or their limitations
19:01 - Patients sometimes feel pressure to be performative with their illness so that their inner circle will be more supportive
22:52 - Communication between the patient and the family is critical to establishing adequate support
31:24 - It may be more difficult for male patients to ask for or accept the help they need from their loved ones
32:28 - Counseling and support groups can be very beneficial in helping families navigate figuring out how to support each other effectively
35:39 - To share your story on this topic, visit our website at aiarthritis.org/podcast
35:51 - If you are living with an AiArthritis disease, check out the sister site to this podcast at aiarthritisvoices.org and meet any of the Voices 360 co-hosts
36:28 - You can also find Estela and Juana @looms4lupus on all social media platforms or by visiting their website at looms4lupus.org
37:27 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org
Join TIffany and Rick as they address the challenges involved as Treat 2 Target has emerged from aggressive treatments for a larger population to treating per the individual and based on the complexity of each disease.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
AiArthritis Voices 360 is the official talk show for the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). You can find us on the web at www.aiarthritis.org.
Show Notes: Episode 42 – “Treat to Target Today with Complex Diseases - Is it possible?”
00:53 - Tiffany welcomes listeners
01:22 - Tiffany introduces Rick, a fellow patient who has Ankylosing Spondylitis and attended a virtual EULAR conference with Tiffany
3:00 - Rick really enjoyed the opportunity to participate in EULAR virtually since he might not have had the opportunity to attend in person otherwise
03:44 - Rick and Tiffany both attended a hot topic session at EULAR called Treat to Target in AxSpa: Myth or Reality?
04:49 - Tiffany and Rick explain the history of “Treat to Target” as a research initiative within the realm of AiArthritis Disease research
10:22 - Tiffany and Rick share key takeaway points that they learned during the Treat to Target session
16:34 - The study presented in the session had some problems in its design that may have impacted the quality of the results
19:58 - Rick discusses his appreciation for the researchers’ ability to recognize and address the limitations of their own study
21:56 - With “Treat to Target” doctors were given specific criteria for treatment and followed up with patients every 4 weeks whereas the “Usual Care” group included doctors who treated their patients however they wanted to treat them and followed up every 3 months. Doctors within the Usual Care group may have been AxSpa experts who were using the same treatments as the other group.
23:24 - Rick discusses the experience of patients who are never even treated by a rheumatologist
25:49 - Tiffany gives an overview of the second portion of the seminar which covered controversies and myths in Treat to Target discussions
28:46 - Accurate disease diagnosis and identification of co-morbidities is essential to implement a treat to target strategy
29:03 - Remission and removal of treatments is the ultimate goal of treat to target strategies, which is a relatively novel goal in rheumatology, but early diagnosis and aggressive treatment is usually necessary to achieve remission
30:26 - The target of treatment may change over time as co-morbidities develop, as the disease progresses or as treatment becomes more effective
32:06 - The second study presented in the seminar lasted 12 years, and researchers had a difficult time keeping participants enrolled in the study for the full duration
36:07 - Forms that patients fill out at rheumatology appointments to measure disease activity are important for clinical researchers, yet doctors are not implementing these forms correctly (or at all) so researchers aren’t able to collect the data they need
41:55 - Numeric pain scales may not be the best way to track AiArthritis pain as a disease management tool
46:34 - It is important to ensure that patient data collection forms are never used by private health insurance companies or public health officials to penalize rheumatologists for the quality of service they are providing to their patients as that is not the purpose of those forms
48:10 - The ideal goal of treat to target is precision medicine
48:30 - The lack of definitive diagnostic measurements like bloodwork or imagine with AxSpa complicates any treatment and research
50:01 - Tiffany thanks Rick for co-hosting this episode
50:12 - Rick is a contributor to rheumatoidarthritis.net, ankylosingspondylitis.net, and radiabetes.com
50:51 - Check out the sister site to this podcast at aiarthritisvoices.org and meet any of the Voices 360 co-hosts
51:38 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org
This week, Tiffany and Patrice discuss the importance of biomarkers. Do biomarkers hold the key to understanding disease severity and predicting disease onset?
In this episode, we talk about biomarkers, or a measurable indicator present in the blood or tissues, and how their presence in our bodies can predict disease severity and guide treatment development. Furthermore, evidence that identifying biomarkers early - BEFORE DISEASE ONSET - could actually prevent a person from developing the disease. Now, there is still the environmental plus genetic factors to consider, but the findings are promising.
While the research focuses on Rheumatoid Arthritis (RA), showing how those who are sero-positive - in addition to having other genetic biomarkers - have a higher likelihood of developing severe disease and bone erosion, Tiffany points out this is similar to Axial Spondyloarthritis, where many of those with non-radiographic disease do not have the biologic HLA-B27 gene that is present in most with radiographic evidence.
The bottom line is that learning about biomarkers can help patients navigate their own healthcare journey, but also could possibly prevent their loved ones from developing these diseases in the future.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
AiArthritis Voices 360 is the official talk show for the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). You can find us on the web at www.aiarthritis.org.
Today Tiffany talks about Posters & Abstracts, or summaries of research, thousands published annually just within the rheumatology community. So, unless the poster is featured in a session, attendees must search the poster database to learn about recent, current, or ongoing research that may be of importance to know.
As we continue our tour of the EULAR scientific conference*, we are inviting patients from around the world to join our team in patient-led Poster/Abstract research reviews. During today's show, Tiffany simulates the simplicity of viewing this short research summary and the value associated with patients (and patient organizations) who are privy about current research efforts.
Poster/Abstract selected for review: Evolving the Management of RA (eRA) program: Educational tools to support daily practice (of rheumatologists)
Listen to the episode to hear the review and to get involved with AiArthritis in expanding research within the patient community!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
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*Since June, our team has been learning from the research presented at the European League Against Rheumatism (EULAR) 2020 annual scientific e-Congress ... and we are inviting those diagnosed with our diseases - and parents of juvenile patients - to join us! Live and online research reviews, watch parties, and more. Sign up today by joining https://aiarthritisvoices.org or learn more at https://www.aiarthritis.org/go-with-us-to-eular-2020.
To learn about RheumyRounds, the break out pilot series for this Talk Show that unites the patient and rheumatology professional "at the table" as equals in conversations that solve problems to improve communication and community outcomes. Want to get involved with RheumyRounds? Learn more at https://www.aiarthritis.org/rheumyrounds.
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AiArthritis Voices 360 is the official Talk Show of the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). Our mission to help others, like us, affected by AiArthritis diseases, have a voice alongside other stakeholders as equals, so together we can solve the problems that impact education, advocacy, and research.
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This week Tiffany (axial spondyloarthritis) and Deb (rheumatoid arthritis) talk about their experiences - and which could be YOUR experiences - having your voice count in research initiatives.
New primary outcomes (endpoints that should be measured) in rheumatology trials where shared-decision making between doctors and patients are required...and patients were part of this historic decision. This was part of the international, collaborative of rheumatology stakeholders - OMERACT (Outcome Measures in Rheumatology).... and Deb and Tiffany were there and they want to tell you all about it!
Learn more about OMERACT.
AiArthritis projects referenced in this episode: * Preparing Patients for Precision Medicine Trials (which includes development of a Shared Decision Making Tool). Learn more. * Changing the World with Your Knee - our collaboration with researchers on the OMERACT Synovial Tissue group where we facilitate focus groups with patients to learn what they need to understand about these studies, which include participating in voluntary knee biopsies, in order to want to be part of the study. Learn more.
Pull up a seat - it's your turn at the table!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis).
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Donate Today! Thank you for your continued support of this show. If you would like to give to our cause, so all patients globally always have a seat "at the table", your gift would be appreciated. Give today!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
We don't represent patient voices, we are the patient voices. We work hard to ensure ALL voices - not just a small percentage of select patients - are counted. And now we have the platforms in place to include everyone's voice who diagnosed with AiArthritis diseases - regardless of geography or disease limitations. We also have the tools and professional experience to bridge the patient conversation with other stakeholders (doctors, nurses, researchers, legislators, drug manufacturers, non-pharmacologic companies, etc) so, together as equals, we can solve the most pressing community problems.
It's finally ready! Two years in the works, but now the communication platforms, led by expert patient facilitators, are in place. An online site, called AiArthritis Voices, will tie in our online conversations, YouTube channel, live "tours", and educational gatherings) with all the topics we cover on our AiArthritis Voices 360 Talk Show. Those diagnosed with, suspected of having an AiArthritis disease, or the parent of a juvenile patient may join this private online site. There you can Talk, Learn, and Connect with many opportunities to improve your own health journey and to help millions of others like you.
Other stakeholders can join as Engagement Partners, who we work with to improve the outcomes of our projects. In turn, we develop solutions with a higher impact to our community.
Listen to this episode to learn more about how our NEW AiArthritis Voices online platform will work in conjunction with this AiArthritis Voices 360 Talk Show to give YOU a voice. In turn, together, we will solve the most pressing issues that will impact education, advocacy, and research.
Learn more about AiArthritis Voices online site at https://aiarthritisvoices.org.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Welcome to AiArthritis Voices 360, the official Talk Show for the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis).
In this episode, Event Host, AiArthritis CEO and person living with AiArthritis diseases, Tiffany Westrich-Robertson, is joined by patient Co-Host, Katie Steele. They speak with Carrie Beach, RN, from the Rheumatology Nurses Society (RNS) about our collaboration to improve patient voices in education and research (featuring our award-finalist Preparing Patients for Precision Medicine project). This is an excellent example of how patients and rheumatology professionals sit "at the table" to discuss projects - because during the conversation we actually came up with a new spin on the collaboration! Listen to learn more about our work together to increase patient (and nurse) education about precision medicine and how YOU can join us!
We also start the episode discussing the patient-nurse relationship and how that window of opportunity while we have the nurses' ear could be better utilized.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE, to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases while honoring the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts. This episode is an excerpt from one of those episodes.
Love the show? Please consider donating so we can continue bringing this amazing resource to you! DONATE TODAY
While we asked Ms. Durazo if we could keep this resource for you to help navigate your challenges with invisible disease, she declined, stating the contract to use the Angela Durazo brand was only agreed upon for a one year term.
You can find several other invisible disease episodes and associated conversations to join! We have connected this show space with a previous episode on invisible disease.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Welcome to AiArthritis Voices 360 - the talk show hosted by the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis), whose mission is to help others, like us, living with AiArthritis diseases, have a voice "at the table" alongside other stakeholders as equals, to solve problems that impact education, advocacy, and research.
This week Tiffany, Deb, and Patrice are learning while having a great time as they have been "at EULAR 2020", which was supposed to take place in Germany June 3-6, but is now ONLINE - through September 1st. In this debrief, which is the third of four, cover the following:
- Award-winning abstracts - focus on working with rheumatic diseases, gut health. We talk in detail about our opinions as patients and focus on some specific projects at AiArthritis related to this topic.
- Patient issues with adherences to treatments: fears, side effects, pregnancy, age - interesting research! We delve more into pregnancy and age in particular - especially regarding current research that moms can be on biologics during pregnancy and the difference in those with long term disease and early on refusing to start treatments.
- Cardiovascular: It's not just RA, research for PsA, Axial Spondyloarthritis and others. These diseases ARE full body! Make sure you remember to take care of the whole body.
- EULAR 2020 Recommendations: New RA and PsA treatment guidelines, involving young people in voicing personal therapeutic outcomes interest (i.e. school, work, relationships, socializing), personalized vs precision medicine, shared-decision making, and patient concerns to address for injection therapy (steroid shots, etc).
The team will take all the information they are learning this month and open the conversation up to YOU in July. Want to "go with us" to EULAR in July? Sign up to learn more HERE.
About Us. To learn more about our nonprofit, please visit www.aiarthritis.org.
Donate. Want to give us a High Five, or two? Your support is vital to helping us continue our work to improve the lives of people living with AiArthritis diseases. Your generosity is appreciated! GIVE TODAY
Related Talk Show episodes:
- Synovial Tissue project: Episode 9
- Precision Medicine vs Personalized Medicine: Mini-Episode 9
- Special Series - COVID-19 & AiArthritis: https://www.aiarthritis.org/covid19
- Episode on pregnancy & research with Mariah Leach from Mama's Facing Forward & Linette Dyer from Mother to Baby: Episode 11
- Shared Decision Making and Precision Medicine: Mini-Episode 15
Related Projects:
- Our Accumulator/Working with lack of biologics project: https://www.aiarthritis.org/accumulator
- Our Preparing Patients for Precision Medicine education and research project GET INVOLVED: https://www.aiarthritis.org/precision...
Want to watch the raw footage of our team recording this episode? Visit: https://youtu.be/ypw5kAW3AyU While there you can view the first two debriefs and learn more how YOU can attend conferences "with us".
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Welcome to AiArthritis Voices 360 At The Table. For our final Wednesday minisode, we have important news to share as we re-structure our podcast to expand our platform to appeal to all potential patients...and so, in turn, more voices can be "at the table". Tune in to learn more about this exciting transformation!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
In this episode, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) reflects on her choices about motherhood. While she never felt the "mother bug" to have children of her own, failed relationships led her on the path to dedicate her life to her career - and ultimately she "birthed" this organization.
Like a parent, she has given her heart and soul into its' development over these 9 years and is proud of the accomplishments she and the other patient leaders have achieved. But she also knows her work as a parent is not over, as there is still a lot of work to do to make sure it succeeds and continues to change lives well after she is gone. Like all children, they need financial support to thrive, to grow, to continue to develop, so she is calling on the public to help make that happen with a donation.
Tiffany ends the episode by thanking her own dad for genetically passing down his business savvy and for being a great example of what it takes to be a parent.
Donate Today!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
This mini-episode originally aired in our AUTO Ball LIVE event (May 16 - 20th on Facebook), but the topic is so important we turned it into a fully produced episode!
Tiffany discusses the importance of raising awareness that the AUTO diseases - autoimmune and autoinflammatory diseases - that include arthritis as a major clinical component are not the same as other types of arthritis. Specific examples include osteoarthritis (due to aging, wear and tear, injury, or excessive pressure on the join), and gout. Failure to differentiate these types of arthritis leads to public confusion, and as a result family and peers may misunderstand the complexity of our challenges. Furthermore, failure to learn arthritis types can lead to delayed detection, diagnosis, and treatment which can cause unnecessary disability, poor quality of life, and inflated healthcare costs.
AiArthritis has launched an AUTO + Arthritis awareness campaign that cleverly uses full body AUTOmobiles to explain our full body diseases. Doing this can differentiate them from the other forms of arthritis! as she teaches you how to creatively compare different arthritis types through Auto-themed activities. Get involved today by creating your own Auto-themed posts so together we can teach the world the differences between our diseases and others that include arthritis! #LearnArthritis
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE, to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases while honoring the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts.
Differentiating Arthritis Types will help all people, with all types of arthritis, gain more understanding - and possible respect - for their condition, will increase detection and referrals, can lead to improved Quality of Life (QOL) and lower healthcare costs long term. The need to differentiate arthritis types, including the focus on a couple dozen autoimmune diseases and autoinflammatory diseases that include arthritis as a major clinical component.
Over 100 autoimmune or autoinflammatory diseases, not all include arthritis. The arthritis is different from other types (like OA or gout). It also can vary in aggressiveness and degree of disease burden. For all, the arthritis differentiates these diseases from the other 100+ and that is why we need to bring light to it.
It’s also equally important to teach both the public and practitioners about the differences so they do not dismiss it (i.e. you’re too young to have osteo, OR if you are older that “it’s not OA so it’s nothing) - lending to delays seeking medical attention.
In this episode, we expand the conversation from patient-reported issues about the need to differentiate arthritis types to including the rheumatologist point of view. What can patients and rheumatologists do to help educate primary care physicians - and other rheumatologists - to consider the AUTO disease features + arthritis to increase detection, referrals, and diagnosis? How can organizations and patient-focused companies get involved?
This episode builds on prior conversations (The Need to Differentiate Arthritis, Typical vs Atypical, and Diagnosis STAT!) and will expand to include more stakeholder voices as we continue the discussion in future episodes - including Rheumy RoundsⓇ and with other nonprofits from around the world. The end goal is to develop materials to educate the public and practitioners about the AUTO + Arthritis diseases and, in turn, increase awareness, expedite detection and diagnosis, and lower healthcare costs associated with delays.
*Rheumy RoundsⓇ is a pilot episode developed by our organization that unites patients and rheumatology professionals at the table - as equals - to discuss issues that, if solved, would improve communication and outcomes.
Who is “at the table”?
Dr. Alfred Kim, rheumatologist and Assistant Professor of Medicine and of Pathology & Immunology at Washington University School of Medicine, and founder and director of the Washington University Lupus Clinic.
Suz Schrandt is a patient diagnosed decades ago with Juvenile (Rheumatoid, now called Idiopathic) Arthritis and patient engagement advocate with a health and disability law background. She recently launched a new patient engagement initiative called ExPPect and is currently serving as the Senior Patient Engagement Advisor to the Society to Improve Diagnosis in Medicine. Schrandt previously served as Director of Patient Engagement at the Arthritis Foundation, and as Deputy Director of Patient Engagement for PCORI.
Tiffany is the CEO at International Foundation for AiArthritis and person living with non-radiographic Axial Spondyloarthritis and other AiArthritis conditions. She uses her professional expertise in mind-mapping, problem solving, and teaching to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
In this week's mini-sode, Tiffany talks about the importance of being counted in research, especially in times when a new disease emerges and only a select few are truly being studied. This is the case with COVID-19, as most research emerging is based on studying people with confirmed positive results. However, due to lack of testing, false negatives (and positives), and other challenges associated with a disease in its' infancy, it's more important now than ever to ensure ALL people, perspectives, and experiences are counted.
Our community is asking many questions about how COVID-19 affected our diseases. The only way researchers can gain enough data to fully answer these questions is if all our experiences are counted. So today we are asking you, if you are diagnosed with an AiArthritis disease and believe you were impacted by COVID-19 (whether you tested positive, or not), please participate in these rheumatology registries:
- COVID-19 Global Rheumatology Alliance. In addition to participating as a supporting organization, our leadership is also involved in the behind-the-scenes research committees as patient liaisons and patient surveys. International. Participate now.
- The Arthritis & Rheumatic Disease COVID-19 Project. This patient-powered study of the Autoimmune Research Collaborative will collect longitudinal data about autoimmune patient experiences with COVID-19 in the USA and Canada only. Sign up now.
- FORWARD: National Data Bank. Participating will provide valuable information to health care providers going forward to help make decisions about how to treat patients with rheumatic diseases who get COVID-19. Participate now.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Your donations are necessary to help us afford to continue the production of this show. Please give today!
Join Tiffany and Deb, fellow patient co-hosts, for the AiArthritis Voices 360 Talk Show as they welcome Dr. Lisa Zickuhr, rheumatologist from Washington University School of Medicine, to discuss the barriers and benefits of e-health/telehealth as we navigate the new world of COVID-19. How are online visits impacting YOUR care with your rheumy? What is working? What isn't? What do we need to improve?
During this discussion, Dr. Zickuhr explains current efforts to streamline e-health visits as we move forward - which patients will be seen in person? Which will use tele-health or video calls? Deb and Tiffany weigh in with their experiences and opinions and they all discuss the need to include patients in the discussions as new protocols emerge. After you listen to the episode send us an email and tell us your opinions and experiences at podcast@aiarthritis.org.
This episode is in conjunction with our organizations' work to improve access to care and doctor-patient communications. It was also an episode that originally aired LIVE during our annual gala, the AUTO Ball, which was hosted on our Facebook page between May 16 - 20th, 2020. You can watch the raw, unedited footage of this episode on Facebook.
Dr. Zickuhr is a rheumatologist and clinician educator who devotes half of her time to caring for patients with autoimmune rheumatic diseases and half to educating physicians in training. Her clinical interests lie in treating patients with systemic lupus erythematosus and other related conditions. She also cares for patients using telemedicine and is interested in the best ways to teach health care professionals how to communicate with and examine patients virtually.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
The European League Against Rheumatism (EULAR) 2020 Scientific Congress, which was supposed to take place in Frankfurt, Germany June 3 - 6 is now being held ONLINE starting June 3 and accessible to patients FOR FREE* through September 1st! Attend with AiArthritis and we will help you navigate the meeting, but also you can join us for post-session conversations, be part of the meetings with other attendees and more! Find us LIVE on YouTube, June 3 at 4pm EST/1pm PST here:
https://youtu.be/bOSHJWGOWY0
Register at https://congress.eular.org/ and sign up to attend with us at https://bit.ly/AiArthritisEULAR20
*Patients with rheumatic diseases can attend for FREE with a doctors note proving diagnosis. All sessions will be available to view through September 1 so there's plenty of time to get set up. In the meantime, you can tune in to learn from what we are learning, regardless of registration. Just sign up at https://bit.ly/AiArthritisEULAR20 to join us on this journey!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis and Deb Majcher Constien, AiArthritis volunteer and patient advocate, as they discuss the importance of AiArthritis leaders attending conferences. At EULAR (European League Against Rheumatism) Congress in 2019, Tiffany and Deb attended a session on the existing efforts to advance e-health so we could reach more rheumatic patients and, in turn, improve their health.
They are joined by Aurelie Najm, rheumatology researcher with EULAR and OMERACT (Outcome Measures in Rheumatology). Aurelie was a panelist at the EULAR e-health session and previously made another guest appearance on AiArthritis Voices 360 to discuss obtaining patient consent for participation in clinical research. Check out Episode 9 “Changing The World With Your Knee” for more information on Aurelie’s clinical research and how you can get involved in that project.
In this episode, Tiffany, Deb, and Aurelie will discuss the ongoing efforts of EULAR and AiArthritis to involve the patient voice in the development of new e-health apps and the variety of ways these apps could be utilized by both patients and clinicians to improve treatment outcomes. Aurelie will also explain the value of e-health apps in light of the COVID-19 pandemic. Stay tuned to the end of the episode for information on how you can help researchers develop the next generation of e-health apps to benefit the AiArthritis community.
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 29 ”Conferences and E-Health”
00:52 - Tiffany welcome listeners and co-host, Deb Constein
3:30 - AiArthritis is transitioning away from the old IFAA acronym to make it more clear what the mission of the organization is to outsiders as we move into more spaces in the medical community
4:44 - Today’s episode is about attending conferences like ACR (American College of Rheumatology) or EULAR (European League Against Rheumatism)
5:27 - Deb was diagnosed with RA 37 years ago and is a registered dietitian so research and conferences are a passion for her
5:50 - Deb explains what she and Tiffany do at conferences
7:44 - Deb gives an overview of some of the things she has learned from conferences like a session on e-health
12:42 - Tiffany and Deb are joined by Aurelie to discuss her panel presentation from EULAR on e-health
13:18 - Aurelie says that researchers realized there were a plethora of health apps, but none of them provided adequate information on how they could actually help patients or clinicians
14:13 - Researchers discovered that rheumatology lacked the quantity and quality of health apps compared to cardiology or endocrinology and that patient voices were not included in the development process for e-health apps
15:28 - Half of panel respondents who had used e-health apps reported that they were not very useful
16:00 - EULAR issued recommendations on how e-health apps should be developed to include patients in the development process and to secure patient data
18:42 - Aurelie discusses the stark differences between how researchers were envisioning using e-health apps before COVID-19 and how they are trying to use them now
22:43 - Aurelie explains some of the recommendations from EULAR for developing e-health apps
25:25 - Aurelie breaks down the two main barriers to developing and implementing useful e-health apps
29:43 - Deb shares responses she received from listeners about which e-health apps they use and like
30:29 - Arthritis Power is one app that many respondents enjoyed using
31:25 - Catch My Pain is another app used for tracking symptoms that was recommended
32:44 - Patients recommend apps when they have a direct benefit to their health
35:43 - EULAR findings are consistent with the responses Deb and Tiffany collected about patient experiences with e-health apps
37:00 - Aurelie expects the field of e-health to develop rapidly in response to COVID-19 needs
39:33 - AiArthritis wants to hear from you about what existing e-health apps you like to use and what you would like see developed in a new app
41:14 - Tiffany thanks Aurelie and Deb for participating in the conversation on e-health and conferences
42:30 - AiArthritis lost all of its sponsors when the in-person AUTO Ball was cancelled due to COVID-19, so we are asking all of our listeners to please consider donating any amount to support the organization so that we can continue working for you
Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE for the AUTO Ball Online to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases and to honor the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts. This episode of AiArthrits Voices 360 was recorded during the AUTO Ball Online event. For more information about the AUTO Ball, visit aiarthritis.org/AutoBall.
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis and Danielle Dass, recurring co-host of AiArthritis Voices 360 and career educator, as they provide an overview of the state of the COVID-19 pandemic. Tiffany and Danielle previously launched the COVID-19 special breakout series with “Episode 1: COVID-19 and AiArthritis” featuring special guest Joe Coe of CreakyJoints / Global Health Living Foundation. You can access all 10 of the other COVID-19 episodes on our website @ aiarthritis.org/covid19.
In this episode, Tiffany and Danielle discuss the current spread of the virus and Danielle explains the concept of epidemiological models and flattening the curve. They discuss the efforts to reopen some areas that had been previously locked down, as well as how you can protect yourself from infection if you live in one of those newly opened places. Tiffany discusses the ongoing frustration with testing availability and how much we still don’t know about the impact the virus has on survivors. She also discusses options for patients who have been infected by COVID-19 to get involved in ongoing clinical research efforts.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: “AUTO Ball - COVID 19”
0:33 - Tiffany welcomes listeners to today’s episode
1:36 - Today’s episode was recorded LIVE during the AUTO Ball Online event on COVID-19 and the AiArthritis Community
3:52 - Today Tiffany is joined by fellow patient co-host Danielle, a retired educator with experience teaching about pandemics and epidemics
7:13 - Danielle has also co-hosted COVID-19 episodes about flattening the curve, wearing masks, and a mini-sode about wearing gloves
7:30 - Visit aiarthritis.org/COVID19 to access any of the 10 episodes of AiArthritis Voices 360 on the pandemic
10:20 - A pandemic is any disease that has a wide spread of cases across the globe with no single epicenter
11:43 - COVID-19 has a higher mortality rate than other common viruses
11:49 - COVID-19 is unique among viruses because it is dangerous to healthy adults without underlying conditions as well as the traditionally at-risk populations
12:53 - The United States currently has more cases of COVID-19 than any other country, even when accounting for population and physical size
13:50 - India stands out globally for being successful with containment of the virus
14:20 - India’s aggressive lockdown strategy raises concerns about the economic impacts that could result, especially how the poor could be affected
15:17 - Danielle explains epidemiological graphs and the concept of “flattening the curve”
17:22 - The unfortunate side-effect of flattening the curve is it tends to slow the progression of the virus so the pandemic lasts longer
18:22 - Many people underestimated the challenge of staying home and being socially isolated
19:53 - As areas begin to reopen, people must be flexible and responsive to the needs of the medical community in terms of keeping the influx of new patients at a manageable level
20:39 - People must trust their local medical professionals’ assessments of their capacity to care for the infected
21:06 - Carrie Beach from Rheumatology Nurses Society will be a special guest on a future episode of AiArthritis Voices 360 to discuss the pandemic from the perspective of medical professionals
21:44 - AiArthritis patients are accustomed to social distancing and can provide guidance to others coping with social isolation for the first time
23:30 - The mortality rate has been lower than originally feared because efforts to flatten the curve have been successful
24:34 - The lack of availability of COVID-19 tests in the United States has been particularly frustrating for patients
25:09 - COVID-19 was originally believed to be a respiratory disease, but we now know that it can impact many other organ systems
27:00 - AiArthritis patients who know they had or believe they had COVID-19 should consider getting involved in the research efforts currently underway
27:53 - If you are living in an area that is beginning to reopen, please continue taking all safety precautions to avoid contagion. Just because an area is reopening for economic reasons does not mean that you are safe from the virus.
29:09 - Many people are only focusing on the death toll, but we have no idea how survivors will be impacted longterm from the virus
29:53 - To learn more about COVID-19, visit our AiArthritis COVID-19 Facebook group (COVID-19 & AiArthritis) or our website @ aiarthritis.org/podcast
32:28 - To learn how you can get involved in COVID-19 and AiArthritis clinical research, visit AiArthritis.org/covid19
34:50 - Please consider making a donation of any amount to support our ongoing work on COVID-19 or any of our projects
35:34 - Visit our Facebook page @IFAiArthritis to see all of the videos from the AUTO Ball Online
Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE, to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases while honoring the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts.
This inaugural gala, the AUTO Ball, was originally scheduled to take place in St. Louis, MO, our headquarters, at the National Museum of Transportation - Earl C. Lindberg Auto Museum. Due to COVID-19, the physical event was canceled. However, since this talk show was scheduled as part of the primary method to teach a larger community about our work, we hosted a series of 10 LIVE shows. This first episode re-introduces our organization to the world, from the perspectives of the co-founders, outlines the value we bring to the community and how YOU can get more involved.
Featuring AiArthritis CEO, Co-Founder, and Host of the AUTO Ball - Tiffany Westrich-Robertson - along with recurring AiArthritis Voices 360 Co-Host and AiArthritis Co-Founder - Kelly Conway - and Co-Founder Tami Caskey Brown.
You can learn more about the AUTO Ball here: www.aiarthritis.org/AutoBall
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
We are proud to host World AUTOimmune & AUTOinflammatory Arthritis Day #aiarthritisday for the 8th year since we established this day in 2012.
Get involved throughout May 20th - as it travels through all time zones globally - that's 47 hours! We are playing on the word AUTO to DRIVE awareness that our diseases are FULL BODY.
If your disease was compared to a car - or auto part - how would you describe it? Are you a "classic" (text book), maybe a convertible because of all the brain fog, have flat tires (fatigue).... so many ways we can teach those who don't understand about our AUTO BODIES!
Start thinking and then post your photos or awareness comparisons using #aiarthritisday .
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Welcome to AiArthritis Voices 360! This week, we are excited to invite you all to join us at the table LIVE for the AUTO BALL, where we sit down with patient Co-Hosts and others from around the world to talk about the important work we are doing to improve global awareness, early detection & diagnosis, precision medicine, and more! You will find our series of live broadcasts on Facebook @IFAiArthritis starting Saturday, May 16th through Wednesday, May 20th. For a complete schedule of events, visit www.aiarthritis.org/autoball and register today!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
This week join your host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she discusses the inherent desire of patients to make decisions with their doctors regarding treatment decisions without interference from insurance companies or governing agencies.
AiArthritis previously addressed this issue in the United States by leading the Ethics of Step Therapy investigation and concluded that while cost must be considered to ensure the “bucket” of healthcare funds are rationed appropriately, insurance companies justify choosing those low-cost treatments by citing research that has proven the drug is just as safe and effective as other options, proven usually through clinical trial research. But in our investigation, the patient experience was key to identifying the key to potentially putting treatment decisions back into the hands of their physicians.
Most patients with aiarthritis are “atypical” in that they would not meet the inclusion criteria required in the same clinical trials insurance companies use to cite to justify their cost-preferred treatment recommendations. Current trials only want patients who are “typical”, or fall under the label “general patient population”. Therefore, when a patient is not “typical”, the responsibility to determine the safest and most efficacious treatment should fall on their doctor, who is ethically obligated to treat patients based on their individual characteristics.
AiArthritis is building on these findings by teaming with FORWARD Databank (formerly known as the National Data Bank for Rheumatic Diseases) to conduct post-market research into patient subgroups to show potential differences in treatment response based on individual characteristics. AiArthritis also works on this issue as an Advisory Task Force Member for Let My Doctors Decide, a group led by American Autoimmune Related Diseases Association (AARDA).
Whether it is insurance companies in the United States or other non-medical groups deciding treatment use in other countries, the issue is the same. Patients want to work with their doctors to decide which treatment is best for them. If you believe this and would like to share your experiences or support on this issue, please send us an email or message us on social media.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
This week join your host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she explains the Method to Our Madness! This episode will give you an insider’s view of the AiArthritis organization and the way the AiArthritis Voices 360 talk show fits into the organization’s mission and projects.
In this episode Tiffany revisits one of the first mini-sodes we aired, “The importance of differentiating arthritis types” (November 29th, Mini-Ep2) to demonstrate how we put each topic “on the table” in Step 2 and then revisit it again in Step 5 - after inviting YOU “to the table’ to be part of the conversation.
The topic we are building the conversation around today is about the term “arthritis”. Too many people associate the term with a mild condition of aging and do not understand the physical or emotional damage that aiarthritis diseases can have on patients suffering from them. In addition to a lack of support, this lack of understanding can also cause costly delays in diagnosis and treatment when patients or their primary care physicians fail to recognize the symptoms of aiarthritis diseases. These delay diagnosis can result in low remission rates, high prevalence of disability, compromised quality of life, and inflated healthcare costs.
This topic is a primary mission point at AiArthritis, and that’s why it will be one of the feature LIVE AiArthritis Voices 360 topics we address in our first AUTO Ball ONLINE event (May 16 - 20th, 2020). So listen to this episode, then be sure to join us, along with special guests, as we take this discussion to Step 5 - one step closer to creating solutions!
The AUTO Ball is a gala to celebrate the 450 million people living with AiArthritis diseases worldwide, teach a bigger audience what we do and our impact, and raise awareness by hosting the event with a fun, auto-influence educational theme. This Ball was supposed to be a physical event, but due to COVID-19 we have taken it ONLINE. Now everyone can attend! So make sure to register (FREE) for a full agenda of events and to learn how you can get involved.
Visit www.aiarthritis.org/autoball to register (FREE) today! Even if you cannot make any of the live activities if you register we will send an event overview to you after-the-fact, complete with links to everything you missed.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 27 – “Method To Our Madness”
00:47 - Tiffany welcomes listeners to today’s episode
1:36 - AiArthritis is a unique organization because it was founded by patients living with AiArthritis diseases to facilitate conversations between a global pool of patients and other stakeholders to solve the problems that impact education, awareness, public policy, or research
2:36 - The patient voice is always either leading the conversation or an equal participant in the conversations AiArthritis supports
3:17 - At aiarthritis.org/podcast, listeners can view a graphic highlighting the 6 steps AiArthritis follows to tackle problems
4:52 - The first step is to talk to other patients about identified problems
5:40 - Step 2 is to bring the topic to the podcast to expand the conversation and include our listeners
7:41 - Step 3 is to go back to the community and expand the conversation even further using social media platforms or our private online forum, AiArthritis Voices
10:13 - In Step 4, we take all of the ideas, suggestions, and stories collected and analyze the information to develop an action plan
10:50 - In Step 5, we invite other stakeholders to join us and work to develop solutions
14:49 - Today we are revisiting the subject of differentiating arthritis types because this conversation is ready to enter Step 5 of our process
15:45 - The word arthritis is an umbrella term meaning joint inflammation or joint pain
16:01 - If the general public associates arthritis with a natural aging process, they do not understand the plight of people living with AiArthritis diseases
16:44 - Arthritis from aging or that develops after an injury is degenerative arthritis or osteoarthritis
17:08 - Many people assume that arthritis is relatively mild, but both aiarthritis and osteoarthritis can be extremely painful
18:58 - Patients with autoimmune or autoinflammatory arthritis experience pain months or years before the damage is visible on imaging
19:58 - If Primary Care Physicians do not quickly recognize the difference between AiArthritis and osteoarthritis, patients experience diminished outcomes as a result of delayed diagnosis and delayed treatment
21:36 - Educating the general public about the difference between osteoarthritis and aiarthritis could also help improve diagnosis times and access to treatment because it would encourage symptomatic patients to see a doctor sooner
24:36 - You can register for the AUTO Ball at https://www.aiarthritis.org/autoball and be notified of when Step 5 of this conversation will take place LIVE on Facebook
This week join your patient co-host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, to discuss the subject of distance medicine and electronic health. Tiffany shares her recent experience with distance medicine as a result of the COVID-19 pandemic and discusses some of the concerns and implications of expanding the use of telemedicine appointments, electronic medical records, and online patient portals.
The mission of AiArthritis is to ensure all patient experiences and perspectives are counted - and are included as equal to all other stakeholders - so, together, we can solve the most pressing problems impacting education, advocacy, and research. Telemedicine and electronic medical records are evolving rapidly, spurred in large part by the need to provide care to patients remotely during the COVID-19 pandemic. But what is working well, what is challenging, and what do we need to discuss further as the future of telemedicine evolves?
Addressing the benefits and barriers now can improve our healthcare experiences today and tomorrow. So join the conversation and share your experiences and concerns. What do you like or dislike about distance appointments or patient portals? What benefits do you see moving forward? Are there problems you would like to see addressed?
You can join the conversation today in our online Facebook Group - COVID-19 & AiArthritis, just search for the post featuring this episode. You can also join a discussion on this topic during our ONLINE AUTO Ball, our organizations’ first annual gala that, due to COVID-19, we are taking online May 16 - 20. Register NOW to attend the AUTO Ball (FREE) and we will email you a schedule of online events, including how you can get involved in conversations, awareness activities, and celebrate the 450 million people worldwide affected by AiArthritis diseases. www.aiarthritis.org/autoball
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Pooja Panchamia, founder of the website and online community FieryBones, as they discuss the need for raising global awareness for autoimmune and autoinflammatory arthritis diseases.
FieryBones is a website dedicated to connecting people around the world suffering from autoimmune arthritis and helping them find hope, information, and inspiration. Pooja created it after her Rheumatoid Arthritis diagnosis left her feeling isolated and afraid of what the future would hold. Support groups were not available in India due to a cultural stigma associated with speaking publicly about illness, so Pooja decided to build her own support network.
She and Tiffany talk about the problems patients everywhere face as a result of a lack of awareness of autoimmune and autoinflammatory arthritis diseases. They delve into the benefits that can be gained from online support communities for patients and caregivers. They also discuss how patients can make an important difference, both in management of their own health and in raising global awareness by speaking up.
AiArthritis will soon be celebrating World AiArthritis Day by hosting our AUTO Ball Online! This is one way patients everywhere can get involved in our mission to raise global awareness for AiArthritis diseases. We need you to share your story. The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. One of the most persistent problems facing patients is a lack of understanding by the rest of the world. Too often people who are suffering are dismissed, ignored, or belittled because their family members, friends, or doctors do not recognize the symptoms of their disease. You can be a part of helping us change that.
So tune in, listen, and then visit www.aiarthritis.org/autoball to share your story today!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 26 – “Global Awareness”
00:52 - Tiffany welcomes listeners to today’s episode
1:11 - Tiffany is a patient living with non-radiographic axial spondyloarthritis
1:35 - Tiffany welcomes today's co-host, Pooja Panchamia
2:02 - Pooja introduces herself and explains her website, Fiery Bones
3:49 - Today’s topic is the need for global awareness for autoimmune and autoinflammatory arthritis diagnoses
4:14 - The AiArthritis Voices 360 Podcast’s mission is intertwined with the mission of the AiArthritis mission to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community
5:48 - Raising awareness of aiarthritis diseases is critically important because a lack of awareness of these diseases can lead to lack of detection, delayed diagnoses, elevated healthcare costs, relationship conflicts, internal struggles, and poorer patient outcomes
6:30 - Lack of awareness of aiarthritis diseases can cause relationships to suffer because friends or family members do not understand the difference between tired and fatigued
8:45 - Patients find it frustrating when others try to offer advice on how to manage their illness, which they probably would not do if they were well educated on the nature of autoimmune and autoinflammatory diseases
12:36 - One of the reasons for this lack of awareness is that most people associate the term arthritis with osteoarthritis
13:20 - Most people assume arthritis is something you experience during old age
14:00 - Pooja was told that her symptoms were probably diet related or possibly psychosomatic, which is a very similar experience many other patients have reported
15:09 - Pooja realized her low-grade fevers were connected to RA after she was diagnosed, but no doctor ever pointed it out
15:32 - Fortunately Pooja’s RA was diagnosed fairly quickly by a doctor because she had traditional symmetrical presentation, which is unique to RA
17:08 - Pooja founded Fiery Bones out of a desire to understand her own illness better and how it would impact her life and future
17:55 - Hearing other people’s similar stories can make patients feel better and less isolated because you realize that you are not alone
18:52 - Patients who share their stories with Fiery Bones often want others to understand the unpredictable nature of their illness
20:36 - Another recurring theme in the patient stories was being dismissed by doctors and having delayed diagnosis
22:02 - One important lesson Pooja learned from collecting patient stories was to let go of any guilt about what you cannot do
22:36 - Another lesson was that patients must communicate effectively about their illness with their family, friends, and healthcare providers
25:50 - In India, there is significant stigma associated with speaking publicly about chronic illness or health conditions, so when Pooja was diagnosed there were no support groups or anything to make her feel like she wasn’t alone
29:52 - Patients living in rural areas of India may have significant difficulty getting access to a rheumatologist
32:00 - Some patients benefit from online support networks because it gives them a sense of community and more resources for managing your own illness
32:41 - Online communities can be very helpful to caretakers as well because it can help them to better understand what their loved one is experiencing
33:26 - Virtual support groups can also help patients learn more about their own illness
39:27 - AiArthritis and Fiery Bones want all patients to share their stories to increase global awareness of autoimmune and autoinflammatory arthritis diseases
40:23 - Pooja invites listeners to visit Fiery Bones at www.fierybones.com or on Twitter @fierybones
40:49 - Listeners can also connect via the AiArthritis website @ www.aiarthritis.org/podcast
41:43 - Tiffany invites all listeners to attend the virtual AUTO Ball Online May 16th-20th on Facebook @IFAiArthrits to celebrate World AiArthritis Day
43:12 - You can register for the AUTO Ball at https://www.aiarthritis.org/autoball and share your story
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Charis Hill, a professionally disabled writer, speaker, and patient advocate as they discuss the sensitive topic of preferred pronouns and misgendering non-binary and transgendered individuals.
Charis is a person who embraces non-binary pronouns (they/them/their) and speaks openly about the emotional experience of being repeatedly misgendered on a daily basis. Tiffany also speaks candidly about the difficulty she has had avoiding the use of binary pronouns even though she is accepting of non-binary people and wants everyone to feel welcome in the AiArthritis organization.
AiArthritis will soon be launching the sister site to this podcast: the AiArthritis Voices 360 online forum. The forum will be a private online space where all patients can be "at the table" with us every step of the way. Members will be able to join additional conversations and projects based on topics discussed on our AiArthritis Voices 360 talk show.
This platform will enable all persons affected by AiArthritis diseases to have a voice, regardless of geography, disease limitations, or prior advocacy experience. It is critically important to our mission at AiArthritis that all patients feel welcome to have their seat at our table, whether it be by participating in our online forum or by grabbing a mic and co-hosting a podcast episode. AiArthritis seeks to build a community where marginalized people feel safe, and candid conversations like this minisode are an important stepping stone. Please join us and help us create a strong, inclusive community where everyone is welcomed.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
This week join your patient co-host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she announces a significant change in plans for the AUTO Ball. Listeners may recall that Tiffany announced in Episode 17 of our At The Table series that AiArthritis would be hosting a gala event to kick-off the celebration leading up to World AiArthritis Day on May 20th, 2020. Due to the COVID-19 pandemic, this event, like so many others, must transition to a virtual gathering for the safety of everyone involved.
Since its inception, AiArthritis has So as Effie Koliopoulis recently pointed out in Episode 20 of our At The Table series, we are already experts at social distancing and being productive from the confines of our homes.
AiArthritis believes that we can change the world from our sofa if we work together. We will embrace this challenge and show the world what a community of patient voices can do when we work together. Our goals remain the same: raise global awareness for AiArthritis Diseases, raise global awareness for the work of our organization, and raise funds to allow this valuable work to continue. This episode will tell you how you can get involved from the safety and comfort of your home to support the new and improved Auto Ball Online!
Learn more about all your AiArthritis Voices 360 Co-Hosts and how the International Foundation for AiArthritis is working to protect the AiArthritis patient community during the COVID-19 pandemic by joining our Facebook COVID-19 group.
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 25 – “Auto Ball Online”
0:52 - Tiffany welcomes listeners to today’s episode
1:16 - Tiffany is a patient living with non-radiographic axial spondyloarthritis
1:30 - One of the first projects that the International Foundation for Autoimmune and Autoinflammatory Arthritis accomplished was the establishment of World Autoimmune and Autoinflammatory Arthritis Day on May 20th 2012
1:46 - World AiArthritis Day actually lasts for 47 hours because it begins in the first timezone and ends in the last time zone on the 20th of May to bring an international awareness to our community of diseases
2:33 - World AiArthritis Day was designed to be conducted primarily online because most of the patients impacted by autoimmune and autoinflammatory diseases suffer from chronic fatigue which can make flexible working hours essential
4:51- the common experience for patients living with AiArthritis diseases has many similarities with the “new normal” experience of the general public while social distancing during the COVID-19 pandemic
5:44 - Many events are being pushed to online platforms due to the COVID-19 pandemic
6:13 - EULAR (European League Against Rheumatism) is hosting their annual conference online this year
7:18 - AiArthritis has been online since our inception because we felt it was the best way to unite a community that may or may not be able to meet in person
9:50 - AiArthritis had planned a gala called the Auto Ball for May 2nd at the National Museum of Transportation in St Louis, MO to kick off the celebration of World AiArthritis Day
10:17 - Tiffany explains all the activities AiArthritis had planned for the Auto Ball like live podcasting, prizes for contests, awards for thematic attire, and special patient guest, race care driver Angela Durazo
13:01 - Due to COVID-19, the in-person Auto Ball must be postponed to May 2021
13:45 - The three goals of the Auto Ball (raising awareness for the organization, raising awareness for AiArthritis diseases, and raising funds to support the organization) must be accomplished online during the pandemic
15:00 - AiArthritis invites the entire world to join us for the online version of the Auto Ball
17:14 - Special podcast guests like the Rheumatology Nurses Society, Forward Databank, and Washington University Rheumatology can still present special information for you
17:38 - Special presenters can still give speeches on Facebook Live
17:47 - Any museums or companies with auto affiliations or local car clubs are invited to participate
18:01 - Perhaps we can have a virtual car show!
18:32 - Celebrity guest Angela Durazo will still be participating online
18:47 - Visit https://www.aiarthritis.org/aiarthritisday to sign up to get involved
19:25 - Plan a creative auto-themed outfit for the event
19:45 - Registrants will receive language they can use on social media to make raising awareness easy and hassle-free
19:54 - The online event will run from May 16th thru May 20th
20:01 - Registrants will also receive information to enable them to participate in podcast events
20:22 - Registrants may submit stories about how AiArthritis Diseases have impacted their lives, and your stories may be featured on our website
20:43 - Be a virtual table sponsor for even more perks!
21:20 - Plan something local like a parade or a driveway party
22:00 - Tiffany thanks listeners for their support
This week join your patient host Kelly Conway, co-founder of International Foundation for AiArthritis, as she updates us all on the state of the COVID-19 pandemic as it relates to pets and their owners. Kelly is the author of Making Lemonade with Georgia Grace and has devoted many years to the care and love of her special needs therapy dog, Georgia. For more information about Kelly and Georgia, therapy dogs, and the ways animals can improve the lives of patients living with AiArthritis diseases, check out Episode 4: Pets and Chronic Illness.
In this episode, Kelly gives us valuable information on how animals and their humans are impacted by the COVID-19 pandemic. She gives a thorough review of what all owners should do to protect and care for their pets, service animals, or emotional support animals during the pandemic. She also discusses specifically what to do if you contract COVID-19 and must have contact with your service animal or emotional support animal or if you have no-one else to care for your pets.
Since this episode was recorded, we are sad to share that Georgia Grace lost her battle with chronic illness on April 7th, 2020, just 12 days before her 11th birthday. Kelly was told that Georgia would never live past age 3, so she sees each day past then has been a gift. Although Georgia Grace is gone, her legacy will go on helping other families with animals living with chronic illness. You can learn more about Georgia and how her life inspired thousands at her Facebook page: https://www.facebook.com/georgiathecavalier Learn more about all your AiArthritis Voices 360 Co-Hosts and how the International Foundation for AiArthritis is working to protect the AiArthritis patient community during the COVID-19 pandemic by joining our Facebook COVID-19 group.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Estela and Juana Mata, co-founders of Looms 4 Lupus, as they discuss the current lack of diversity represented in clinical trials and the need to include all demographics in trials so the therapies that go to market are representative of the real patient population who are using them.
Estela and Juana's expertise from symposium and conference attendance, in addition to Juana's personal experience in trials, helps us to understand both the ethnic barriers to participation and why diversity in clinical research is so important. Tiffany and the Mata sisters discuss continued efforts to include diverse groups in research, especially as we move towards precision medicine, by joining forces on projects like our award-finalist "Preparing Patients for Precision Medicine" project.
In this episode, we use our expertise as people living with AiArthritis diseases to explore trial inclusion challenges and explain the steps necessary to get diverse populations interested in research. The first step is education and building trust, the next step is getting doctors to talk more about trial options. These efforts are underway through our existing projects, but we need YOUR input - the patient experts - to complete them.
Do you want to learn more about participating in existing trials or future precision medicine trials? Would you like to join in on conversations with Estela, Juana, and Tiffany so, together, we can develop the educational materials necessary to help expand diverse inclusion in research?
Learn more about your Co-Hosts and how you can help us improve diversity in clinical trials HERE.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 24 – “Ethnic Diversity Needed in Clinical Trials”
00:52 - Tiffany welcomes listeners and co-hosts Estela and Juana Mata, co-founders of Looms for Lupus
2:22 - Looms for Lupus is a non-profit organization that provides support for people living with Lupus and other overlapping chronic diseases like fibromyalgia or rheumatoid arthritis
2:40 - The Mata Sisters began Looms for Lupus after Juana was diagnosed with Systemic Lupus Erythematosus and Rheumatoid Arthritis
5:29 - Clinical trials are clinical medical research involving people and are either observational or experimental
5:57 - Clinical trials have four phases with increasing pools of participants
8:27 - Lack of awareness of clinical trials among minority communities may contribute to a lack of diversity in participant pools
10:45 - When Juana first told her mother she intended to participate in a clinical trial, her mother was concerned that she might be a human “guinea pig”
11:34 - One reason people may be hesitant to participate in clinical trials is that they don’t know if they will have access to the results of the study
12:40 - Juana found a clinical trial through a Facebook advertisement
13:10 - Participants in clinical trials may get access to excellent doctors
13:38 - Not all rheumatologists will encourage their patients to participate in clinical trials, but you can still become a participant based on your own interest
17:17 - Diversity in clinical trials is critically important because using a narrow pool of homogenous participants will skew the quality of the results since all patients are unique
18:56 - Lupus is more common among black, hispanic, and asian / pacific islander patients than white patients, so it’s a problem if clinical trial participants for Lupus treatments are predominantly white patients
22:15 - 12% of the American population is black, but only 5% of clinical trial participants are black
22:35 - Latinos make up 16% of the US population, but only 1% of clinical trial participants are latino
24:20 - Educating the entire community is necessary to increase support for participation
24:55 - Patients may also be afraid that participating in a clinical trial could harm them, so these fears need to be addressed to increase participation rates
26:51 - Juana first joined a clinical trial in the hopes of accessing a more effective medication for her Lupus
28:16 - Most participants in the AiArthritis community are seeking more effective treatments
28:38 - Patients with well controlled AiArthritis diseases are very reluctant to join clinical trials because they do not want to endanger their current effective treatment
29:14 - Not all clinical trials require patients to take new medications, so even patients with well controlled diseases can make a difference to the community by participating in surveys or other types of trials
31:17 - Some clinical trials use apple watches or fitbits to collect data from patients
31:26 - Juana and Estela are participating in the All Of Us Research program through the US National Institute of Health
34:30 - clinicaltrials.gov is a resource patients can use to locate clinical trials (even trials outside the US)
38:26 - COVID-19 has caused the medical community to embrace telemedicine, which may expand opportunities for clinical trials for people with transportation limitations
44:11 - If all members of the AiArthritis community participated actively in clinical trials, we would all benefit from having better treatments available sooner
44:50 - Minority patients must be afforded an opportunity to share their reasons for not being willing to participate in clinical trials because there is a significant history of discrimination of minority patients in medical research, as well as ongoing issues with discrimination of minority patients in healthcare settings
48:48 - One of the best ways to reach minority communities is to have members of those communities take leadership roles as spokespeople at symposiums or other educational events
52:37 - Diversity among patient advocates is critically important because people trust others who have as much in common with them as possible
53:36 - Healthcare providers need to be educated on clinical trials as well because patients are more likely to trust the information when it comes from the physician they already trust
54:15 - Physicians with a full patient load do not have time to research available clinical trials for each of their patients
54:39 - Clinical researchers should provide information to providers directly if they want to recruit more patients who fit a particular profile
55:27 - AiArthritis is working with some researchers from OMERACT to create a shared decision tool to facilitate conversations between patients and their physicians about clinical trials and precision medicine
57:52 - The Center for Information and Study on Clinical Research Participation (CISCRP) has a wealth of information about clinical trials at their website ciscrp.org
58:26 - Find the Mata Sisters on Twitter, Facebook, or Instagram @Looms4Lupus or on the web at looms4lupus.org
59:00 - Join the Mata Sisters for live Facebook chats every second Saturday of the month (in Spanish)
1:00:11 - Find AiArthritis @IFAiArthritis on all social media platforms or at aiarthritis.org/podcast
1:00:44 - Join our Facebook group or email us at podcast@aiarthritis.org to comment on this or other episodes
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week, join patient co-hosts Danielle and Kristen as they discuss the use of gloves to protect yourself from contracting COVID-19. Do gloves provide added protection from the virus? What is the “right way” to use them? Listen to our conversation about whether to wear gloves and how to wear them if you choose to do so. Then join us in our Facebook COVID-19 group to let us know what choices you are making to protect yourself and your family.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360. This week join your patient co-hosts Danielle Dass and Kristen Ray as they discuss all things masks and COVID-19. What sorts of masks do healthcare providers need to keep themselves and their patients safe? What happens if hospitals run out of masks? Should people be wearing a mask when they leave their home during social distancing? Do cloth masks offer protection from the virus? Tune in for the answers to these questions and more as we seek to help you navigate this pandemic with our ongoing COVID-19 series.
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 21 – “Prevention Focus: Masks”
00:52 - Danielle welcomes listeners and patient co-host Kristen to the show
01:38 - Kristen introduces herself
02:12 - Kristen is a patient living with ankylosing spondylitis
03:58 - Kristen is an ophthalmology nurse
04:11 - COVID-19 can be spread by touching your eyes, nose, or mouth
04:38 - Today’s topic will deal with masks and whether wearing a mask can help protect you from contracting COVID-19
04:57 - Neither AiArthritis nor the Spondylitis Association of America will be issuing an official recommendation on whether or not patients should wear masks. The episode will provide reliable information that listeners can use to make their own decision regarding their own personal safety
06:27 - PPE refers to protective clothing like helmets, goggles, gloves, masks, etc that are designed to protect healthcare providers from infection or injury
08:09 - Everything has changed in terms of how HCPs see patients and use PPE
09:06 - Kristen’s office is only seeing emergency patients
09:10 - The amount of PPE gear needed to see patients has dramatically increased even though the patient load has been restricted to just emergencies
11:59 - Healthcare provider needs for PPE have increased, resulting in a global shortage of available gear
12:49 - Smaller hospitals in the US may not have the money to purchase more PPE because most of their income is derived from elective surgeries which have all been suspended
14:40 - Surgical masks are designed to create a physical barrier between the wearer and patients
15:13 - The N95 respirator mask creates a seal and then filters airborne particles so that the wearer is not breathing in any viral particles
16:25 - Neither surgical masks nor N95 respirator masks are intended to be reused
17:13 - People wearing N95 masks who have not been trained to use them will not be protected from COVID-19 with the same efficacy as a healthcare provider who has been trained to use them
17:43 - N95 respirator masks only filter 95% of viral particles when used correctly. With common usage, they are not significantly more effective than surgical or cloth masks.
19:58 - Never touch your face while wearing a mask
20:06 - Tie back hair so that you are not tempted to brush it out of your face
20:16 - Use medical tape to seal edges on the bridge of the nose and along the sides of the nose
21:19 - When putting on your mask, hold it by the straps or loops as far as possible from the piece that covers your face
21:30 - Position the mask along the bridge of the nose first, position it under your chin, and then fasten the attachments
21:42 - Do not touch the square portion of the mask that covers your face
21:53 - To remove the mask, repeat this procedure and again avoid touching the square portion of the mask
22:25 - Wash cloth masks immediately after every use
22:30 - DO NOT remove your mask after leaving a store, allow it to drape around your neck, or place it in your bag or purse as the masks may be covered with viral particles
23:08 - Wash hands before and after putting on or removing a mask
23:19 - Wearing a mask and using it improperly may put the wearer at more risk of contracting COVID-19 than not wearing it at all
24:32 - Kristen explains the 6 options the CDC recommends for hospitals who do not have enough masks for their healthcare providers
27:56 - Using cloth masks is the absolute last resort recommended by the CDC because cloth masks are not considered effective PPE and their ability to protect HCPs is unknown
32:01 - The CDC has started to recommend that members of the American public wear cloth masks when outside of their homes
32:16 - Up to 25% of the people who are spreading the COVID-19 virus are asymptomatic
32:55 - Cloth mask wearing in public has become very common in parts of Asia since the 2003 SARS epidemic
33:56 - Community-wide wearing of masks protects the community because cloth masks are effective at preventing the spread of the virus when worn by the infected person
35:50 - A 2015 study found that cloth masks only blocked 3% of viral particles
36:29 - Some studies performed recently found that cloth masks could block as much as 60% of viral particles, but the design of the experiment raises questions about whether that means cloth masks will protect the wearer from COVID-19
37:38 - Individuals must continue to take all previous precautions (social distancing, hand washing, etc) even when wearing a cloth mask
39:10 - Some rudimentary cloth masks can be fashioned out of a bandana and some hair ties
39:22 - Some homemade cloth masks include filters made out of vacuum cleaner bags, air filters, or even panty liners
40:00 - Never touch the square portion of the mask when putting it on or taking it off, and make sure to wash your hands before and after touching the mask
40:07 - Frequent hand washing is still the best way to protect yourself from COVID-19
41:13 - If you are going to wear a mask, you still need to clean all the surface areas around you because the mask does not provide 100% protection from the virus
41:38 - Wear your mask until you return to your house and can put it directly into the washing machine
43:22 - Cloth masks can pose a health risk to immunocompromised wearers
47:10 - If you want to donate homemade masks to healthcare providers, contact your personal physician’s office and ask if they are accepting them.
48:20 - Local police departments and grocery delivery workers may also be accepting donations of homemade masks
49:03 - Danielle invites listeners to join our new Facebook group @IFAiArthritis to learn more about this and other topics
49:17 - Private comments may be directed to AiArthritis via FB, Twitter, or Instagram message @IFAiArthritis or emailed to podcast@aiarthritis.org
49:31- Find this and all our episodes at www.aiarthritis.org/podcast, or visit www.aiarthritis.org/covid19 for all our COVID-19 related resources
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week join Effie Koliopoulos, the talent behind the Rising Above RA blog, as she talks about the similarities between the AiArthritis experience and the COVID-19 pandemic experience. Could your experience help you to empathize with the people directly impacted by the pandemic? Will this experience help others to better understand the challenges faced by our community?
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360. This week the show is celebrating 40 brilliant episodes by revisiting some of our previous conversations with experts in the field of autoimmune and autoinflammatory rheumatic diseases. We have featured rheumatologists, clinical researchers, and medical anthropologists in addition to our many patient co-hosts with expertise of their own. If you are new to the show, this will give you an opportunity to catch up on what our experts had to say about their work. Tune in and then join us to add your voice to these ongoing conversations.
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 20 – “Highlighting the Experts”
00:52 - Tiffany welcomes listeners to the show
01:02 - Today’s episode will be a highlight reel featuring four of the episodes that have previously aired on AiArthritis Voices 360 for those who may have missed them
02:40 - Tiffany introduces Dr. Apostolos Kontzias from the Center of Autoinflammatory Diseases
03:12 - Dr. Kontzias explains the distinction between autoimmune and autoinflammatory, which both stem from the immune system, just different sides (“innate” vs “acquired”)
04:32 - Autoinflammatory patients usually lack laboratory markers for autoimmune disease - despite inflammatory symptoms - which can cause a diagnostic delay
04:55 - Both autoimmune patients and autoinflammatory patients can present with arthritis and other common features (fatigue, varying degrees of fevers)
05:48 - Autoinflammatory syndromes are innate (of unknown cause, from the primal part of the immune system) and thus can present early in life, but some do not present until adulthood
07:14 - Either type of immune response may be initially triggered by environmental factors, but also environmental factors can trigger disease activity
07:44 - Viral infections can trigger autoinflammatory syndromes
07:57 - Menstruation can trigger increases in symptoms for female patients for either type of disease
08:27 - Some conditions “bridge” the two types and can have features of both adaptive and innate immunity.
09:46 - By definition, patients with autoinflammatory conditions have an immune system that does not recognize the patient’s own structural components of their cells
10:49 - Fevers and rashes are often markers for autoinflammatory conditions. General markers for inflammation without laboratory results that support traditional autoimmune diagnoses are also predictive of autoinflammatory conditions
13:09 - Tiffany thanks Dr. Kontzias for his time
13:21 - Tiffany welcomes Kaleb Michaud from FORWARD Databank
13:49 - Registries monitor patient journeys to benefit scientific understanding of rheumatic diseases
14:51 - Kaleb explains his decision to become a medical researcher
16:07 - Tracking patient symptoms over time can lead to more accurate diagnosis and treatment because patients may not be aware of incremental progression
17:48 - Long questionnaires encourage patients to thoroughly interrogate their own health and reflect on how they are doing
18:44 - One patient, Mary Felstiner, wrote a book titled Out of Joint about the experience of completing the questionnaires.
21:20 - People who participate in registry studies statistically live longer than patients who choose not to participate.
22:15 - Tiffany is joined by patient co-host Deb Constein and Dr. Aurélie Najm, a rheumatologist and clinical researcher currently serving as the co-chair for the European League Against Rheumatism’s Synovitis Study Group
22:49 – Aurélie introduces herself
22:57 - She is researching providing tailored treatments to patients with rheumatoid arthritis
23:27 - Aurélie is the co-chair of the EULAR Synovitis Study Group, which is studying synovial tissue to determine the best treatment for each patient
24:07 - Tiffany and Deb are patient research partners for OMERACT
25:37 - Patterns of inflammation within the synovial tissue can predict the future evolution of disease for that patient and which anti-rheumatic drugs may be more effective for that patient
26:45 - AiArthritis is interested in this research because we support anything that reduces delays in getting patients access to the right treatment
28:00 - Deb discusses her experience with joint biopsy procedures
30:38 - The two methods available for obtaining synovial samples from joint spaces are arthroscopic or ultrasound guided biopsy
32:13 - Explaining the purpose of any procedure to the patient, especially when procedures are for clinical research and not necessity, is critically important.
33:40 - Volunteering for procedures to support clinical research is “an investment in the future.”
34:35 - IFAA seeks to help researchers develop the right protocols to recruit patient participants
34:54 - Visit aiarthritis.org/podcast to learn how you can help
35:14 - Tiffany introduces special guests Dr. Alfred Kim and Jerik Leung, who have done research on patient needs and communication barriers
35:56 - Tiffany explains the goals of the Rheumy Rounds Series
36:54 - Jerik’s research showed that patient goals did not always align with the physician’s goals, especially relating to medications and side effects
38:44 - Dr. Kim says the primary goal of rheumatologists is to determine what is actually going on with the patient. Are additional testing or imaging studies necessary? Are the notes from the previous doctor or patient provided information enough?
39:35 - Practicing Rheumatology is somewhat similar to practicing psychiatry in that there are usually not clear cut answers divined from test results. The physician has to review as much information as possible to arrive at a correct diagnosis.
40:34 - Rheumatologists must also prepare to have a difficult conversation with patients if the diagnosis doesn’t align with what they have been told previously or what they believe or don’t believe they have
41:11 - Sometimes patients arrive at a new doctor with incorrect information in their chart because a previous doctor had to use a certain diagnosis - even if it wasn’t the correct one - so the patient could get access to a needed medication
42:30 - For many physicians, the emotional aspects of the disease aren’t actionable from a clinical perspective.
43:14 - Patients may be on the defensive at the outset of appointments due to previous negative interactions with rheumatologists
44:06 - Learning to advocate for yourself is necessary for patients living with chronic illnesses
46:06 - Mutual trust is critical between the patient and physician
46:59 - Occupational therapy support may increase patient compliance with their treatment plan and help them and their caregivers achieve a better quality of life
47:40 - Physicians may not address complaints from patients that they are not equipped to handle, but they should be able to refer the patient to someone who can help them
49:01 - Most common reasons people “fire” their doctor: they feel unheard or treatments are not meeting their expectations
50:27 - Both doctors and patients could potentially benefit from training on how to interact positively and productively with each other
52:56 - Tiffany invites listeners to join our new Facebook group @IFAiArthritis to get involved
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week join Bridget Dandaraw-Seritt, founder of the Canna Patient Resource Connection, as she tackles myths and misinformation circulating about CBD and COVID-19. Is it true that CBD can kill the coronavirus? Can the alleged anti-inflammatory properties of CBD protect you from a COVID-19 initiated cytokine storm? Does CBD have antiviral properties? Find out the answers to these questions and more.
Listen and then take your seat "at the table" by joining Bridget at our new COVID-19 & AiArthritis Facebook group. This and all COVID-19 specific episodes will be posted in that group, so the conversation does not have to stop here!
You can also listen to our original CBD - It's EVERYWHERE (Episode #16) in our show list or find it on its' own episode page on our website at https://www.aiarthritis.org/podcast-ep16
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360. This episode join your hosts Kelly Conway and Charis Hill to discuss COVID-19 and the potential impact on the AiArthritis Community. This is the third episode in a breakout series on COVID-19 and what you can do to protect yourself during the pandemic. They will discuss raising awareness for the risks experienced by disabled and chronically ill people during the pandemic and what you can do to join the movement. They also dive into being discriminating about the reliability of sources when reading about COVID-19 and prioritizing your mental and emotional wellness during social isolation.
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 21 – “High Risk COVID-19”
00:52 - Kelly welcomes listeners
02:23 - Kelly lives with Rheumatoid Arthritis
02:37 - Today’s topic is the high risk community of AiArthritis patients living during a COVID-19 outbreak
02:45 - Kelly welcomes patient co-host, Charis, who lives with Ankylosing Spondylitis
03:19 - In the beginning of the outbreak, the messaging focused mostly on the fact that children were not at risk and the elderly and people with compromised immune systems were in the most danger
05:50 - Charis drafted language in a social media post that was adopted by their local mayor to communicate to the public that individuals at increased risk from COVID-19 needed others to practice socially responsible behaviors to help thwart the spread of the virus
06:50 - Charis has been spreading the message that it is everyone’s job to stay home so that everyone doesn’t get sick instead of the idea that immunocompromised people should self-isolate if they want to be safe
07:44 - All people need to stay home as much as possible to prevent asymptomatic carriers from spreading the virus to vulnerable members of our society without knowing it
08:51 - Charis explains the origin of #HighRiskCOVID19
12:34 - It’s important to put a face to the category of “high risk people” so that the public understands who all they are protecting when they are practicing social distancing
14:57 - Before her workplace closed, Kelly was approached by multiple people concerned about whether she was at risk, but she didn’t know the answer
16:12 - CreakyJoints is a great resource for reliable information and support during the COVID-19 pandemic
16:36 - If you are concerned about conflicting information, you should consult with your personal physician who is familiar with your condition about the best way to proceed
16:58 - The Spondylitis Association has also issued a resource document for Spondyloarthritis patients about COVID-19
17:11 - Check sources on any articles you find online because there is a lot of misinformation floating around the internet
17:26 - Patients living with chronic illness and disabilities may be more prepared than the general population to avoid infection during a pandemic
18:16 - We know what to do to protect ourselves, but we are also relying on the community to keep us safe because this virus is so dangerous for disabled and chronically ill people
18:28 - Charis and Kelly share the end of life plans they have made in case they contract a fatal case of COVID-19. These plans allow them to live without anxiety, NOT because they are being pessimists
20:40 - It’s important that everyone be patient and kind with people who are still working - especially healthcare professionals
21:22 - If you are healthy and have been stockpiling medical supplies, please consider sharing them with people who need them now
26:05 - Everyone knows someone who works in the healthcare, service, or food industry putting themselves at risk, and the least we can all do is to avoid unnecessary trips out
27:04 - You can be a superhero right now by doing nothing and staying at home
27:46 - People probably need to take breaks from COVID-19 news to preserve their mental health
30:43 - People need to prioritize social connections (while social distancing) to preserve their emotional wellness
32:05 - People who deny the seriousness of this virus may be clinging to that belief to manage their own anxiety
33:08 - Schools and employers have been claiming for years that remote work or remote learning is not possible, but now it is suddenly possible when able-bodied people need it
33:58 - Follow #Accessibilityforableds to see how frustrated disabled people are that the accommodations they’ve been told were impossible are now available to everyone
34:18 - Disabled people hope that these distance policies will remain possible after the virus
36:42 - This is the first time in a long time that teachers have had the freedom to educate their students without having materials forced on them by publishers, politicians, and administrators. Kelly hopes that will be a catalyst for change in public schools after the virus
38:40 - There is no one look for being high risk or vulnerable
39:29 - Many of the symptoms that people with AiArthritis diseases live with every day are documented COVID-19 symptoms, and that can cause anxiety for people who are trying to decide if they are flaring or sick
40:12 - Get in touch with your doctor if you think you need to be seen because any trip to urgent care or the ER is likely to expose you to the virus
44:04 - We probably won’t know much conclusively about the virus for several years because researchers will need to repeat experiments multiple times and have research peer reviewed before it will be accepted as fact
45:29 - Kelly thanks Charis for taking the time to do this episode despite being ill
45:54 - The COVID-19 special episodes are currently airing during the regular AiArthritis Voices 360 dates and times, but they will soon branch out into their own series so that patients wishing to take a break from COVID-19 news can listen to our regular show
46:35 - For more information on COVID-19, you can join IFAA’s COVID-19 group on Facebook by connecting to our page @IFAiArthritis
47:09 - We will also have many COVID-19 resources available @ aiarthritis.org/COVID19
47:19 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week Tiffany has an important announcement. A case of pneumonia has accelerated the planned timeline for the show, and our team of talented co-hosts from all over the world will be taking over leading the show while Tiffany recovers. We invite you to visit our website to and click on “Meet Our Team" get to know them better. Tiffany also discusses the plans to continue coverage of the COVID-19 pandemic while simultaneously continuing our regularly scheduled shows. Listen in and get the scoop on the immediate future of the show and all of the COVID-19 resources we are assembling for you.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360. In this episode, join patient co-hosts Tiffany Westrich-Robertson and Matt Iseman - host of American Ninja Warrior and person living with Rheumatoid Arthritis. They are joined by Dr. Alfred Kim, Rheumatologist at Washington University and Founder and Director of their Lupus Clinic. This is the second episode in a breakout series on COVID-19 and what you can do to protect yourself during the pandemic. Should you continue taking immunosuppressive therapies? Are you going to be able to refill your hydroxychloroquine prescription? What should you do if you begin experiencing symptoms? When do you need to go to the ER? Dr. Kim offers his expert opinion on these and more vital questions.
- Dr. Kim is also a partner in our break out Rheumy Rounds series, where patients and rheumatology professionals unite, as equals, "at the table" to discuss current issues and develop solutions together.
You can join the discussions on the COVID-19 & AiArthritis Facebook Group at https://www.facebook.com/groups/IFAiArthritisCovid19/.
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 20 – “COVID-19 & AiArthritis: Special Series Episode 2”
00:52 - Tiffany welcomes listeners and co-host, Matt Iseman, host of American Ninja Warrior
01:37 - Tiffany and Matt welcome special guest, Dr. Alfred Kim, a rheumatologist with Washington University
03:08 - Dr. Kim is fielding many questions from patients and other physicians about COVID-19
05:05 - Viral infections tend to wreak more havoc on patients who are immunosuppressed (either by disease or medications)
05:34 - Anecdotal evidence suggests there is a subset of patients with COVID-19 who have too much inflammation and may be helped by immunosuppressive therapies
05:48 - Other patients may be harmed by these same medications
06:55 - At this time there are no recommendations regarding discontinuing immunosuppressive therapies during the COVID-19 outbreak
07:44 - Dr. Kim has been recommending continuity of immunosuppressive therapies to his patients while we await more data
07:54 - Taking higher doses of prednisone is the worst thing you can do for your immune system and could increase morbidity and mortality
08:30 - Dr. Kim recommends not using any prednisone (or the lowest dose possible if it is absolutely necessary)
09:03 - Patients who have a lower baseline immune fitness may have an easier time with COVID-19 than a patient who has a higher baseline immune fitness
10:20 - Dr. Kim doesn’t want to discourage patients from pursuing vitamins or homeopathic prophylactics because he has no data to suggest they are harmful, and if nothing else, the placebo effect from them could be helpful
11:16 - There is some preliminary data to suggest that there may be some harm from NSAIDs and some benefit from anti-malarials (including Plaquenil)
12:40 - The data suggesting Plaquenil was beneficial is problematic because it excluded all patients who were unable to complete the course of medication for any reason - including those who became more sick or died
14:18 - Dr. Kim is very uncomfortable with the government suggestion that patients with COVID-19 should be treated with Plaquenil because the data to support that conclusion is not sufficient
16:13 - Dr. Kim recommends patients follow the general guidelines available to the public, but he also tells his patients to follow him on Twitter @alhkim so that they can have ready access to new information as it comes out
20:20 - As soon as the President of the US announced that Plaquenil could be used to treat COVID-19, patients would had already been taking Hydroxychloroquine immediately became afraid that they would not be able to access their medications
21:26 - None of the US distributors of hydroxychloroquine have any remaining stock, so the pills available at local pharmacies are all that there is
22:00 - The hope is that more manufacturers will begin producing hydroxychloroquine
22:36 - The VA system has restricted the use of hydroxychloroquine to COVID-19 patients ONLY, so AiArthritis patients who were taking it can no longer get it through the VA
22:44 - Hydroxychloroquine has a very long half-life and takes 30-40 days for your serum blood level to reduce by half and will take 6 months for it to be completely gone
23:08 - AiArthritis patients would probably be OK for a month or two in the event of a shortage, but after that they would really need access restored or a different medication if possible
24:04 - Patients may want to consider refilling all available medications in case of a hard quarantine
25:50 - Telemedicine appointments (to avoid in person visits) are more difficult for the physician because they cannot examine the patient and require the patient to be able to communicate problems and concerns verbally and accurately
30:00 - An increase in the accessibility of Telehealth appointments may allow patients to access clinics or hospitals or specialists they want to see regardless of their physical location
33:37 - Dr. Kim describes the American situation with testing for COVID-19 as frustrating and too late
34:18 - Dr. Kim estimates that the number of cases in the US is underreported by 5-10 times as a result of the lack of access to testing
35:04 - A private company is offering at-home COVID-19 testing for patients who qualify and can pay $130 for it
37:54 - Dr. Kim recommends self-quarantining if you have any symptoms of illness if you have no access to testing
38:10 - Immunosuppressed patients may shed more viral particles than patients in the general population, so AiArthritis patients may be more likely to spread the virus to others if they contract it and do not self-quarantine
38:22 - One study found that aerosolized COVID-19 may be able to last several days in the air after being expelled by a sick individual and up to 3 days on non-porous surfaces
43:12 - Allergies often have itchiness associated with them, so itching is pro
43:28 - A common cold is over quickly
43:39 - Flu and other respiratory viruses are difficult to distinguish from COVID-19
44:29 - Influenza tends to cause body aches
44:38 - A primary symptom of COVID-19 appears to be diarrhea, not necessarily fever
47:34 - Patients should seek medical care if they have respiratory distress when at rest or a fever that is unresponsive to medicine
51:14 - To avoid misinformation, follow Dr. Kim, the CDC, and other reputable sources for scientific information on social media
51:25 - Some stand-up comedians are hosting shows from their living rooms on social media, which may be a nice relief from social isolation
51:50 - Try to connect with other people over text, Facetime, Zoom, or social media so that you are isolated physically, but not emotionally
52:49 - Outlets for recreation and connection will be key for mental health during social isolation
53:02 - Prioritize outdoor activity as much as possible for wellness and to minimize joint pain and stiffness
55:50 - We hope after society returns to “normal” that people will understand that immunocompromised people are not only elderly
59:00 - You can find Matt Iseman on Twitter and Instagram @MattIseman
59:25 - For more information on COVID-19, you can join IFAA’s COVID-19 group on Facebook by connecting to our page @IFAiArthritis
1:00:03 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Danielle Dass welcome Joe Coe from Creaky Joints / Global Health Living Foundation to discuss COVID-19 and the potential impact on the AiArthritis Community. This is the first episode in a breakout series of AiArthritis Voices 360 episodes on COVID-19 and what you can do to protect yourself during the pandemic. Are you among the people considered to be at an elevated risk during this pandemic? How can social distancing help you and your community? What other topics will the series cover in the coming episodes? Tune in the find out!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 19 – “COVID-19”
00:52 - Tiffany welcomes listeners and co-host, Danielle
02:13 - Danielle is a former teacher of AP Human Geography and has taught Population Studies, a topic which includes pandemics and epidemics
03:10 – Danielle is diagnosed with Rheumatoid Arthritis and Axial Spondyloarthritis, as well as an autoimmune liver disease.
03:20 - People who are immunosuppressed fall into the “high risk” category for COVID-19
03:44 - Tiffany and Danielle are joined by special guest, Joe Coe from Creaky Joints / Global Healthy Living Foundation
05:00 - Creaky Joints has been working to gather COVID-19 information and amplify the voices of the marginalized members of the chronic and invisible illness community
06:56 - No medical advice will be given in this episode.
07:02 - This is the first episode in a larger series on the COVID-19 pandemic
07:19 - The next episode will feature physicians and will address many common medical questions surrounding the virus
08:38 - Creaky Joints noticed early on that organizations were defining the at-risk populations in very broad strokes, which created a lot of confusion about who was actually at risk
09:36 - Creaky Joints has published a webpage called “Coronavirus Questions for Immunocompromised Patients and the Best Answers We Have Right Now.” This page is updated regularly and can be viewed at: creakyjoints.org/coronavirus
10:51 - Creaky Joints was told by several rheumatologists that patients should check with their doctor, but the impact of uncontrolled inflammation could be very detrimental so patients should not assume that discontinuing treatments is a good idea
12:44 - None of the research about coronavirus has been peer-reviewed, and all studies are very early
12:56 - Especially since scientists are studying some DMARDs as potential treatments for COVID-19, patients MUST speak with their doctor before making any decision about discontinuing their medications.
13:26 - There is a lot of misinformation being circulated on the internet, so our community needs reliable sources for information
14:20 - People may not interpret scientific studies correctly so word of mouth may not be very reliable
16:44 - A lot of the information being circulated is targeted for the general public and may not be the right advice for immunocompromised people
20:05 - AiArthritis patients who had teen or adult onset are very familiar with the concept of a “new normal,” and all of us understand social distancing already
20:40 - Some healthy people who compare COVID-19 to influenza don’t seem to understand that vulnerable members of the community are at risk from serious illness during any disease outbreak
22:03 - Negating an experience based on another bad experience undermines the work that all of us should be doing to listen to the voices of people impacted by epidemic diseases
22:19 - Responses to epidemics and pandemics should be centered on the voices of the people most impacted by them
23:40 - A pandemic is a disease that has spread across multiple countries and impacts a large percentage of the population
24:20 - Epidemics spread through contagion diffusion, which means everyone who contracts the disease is physically located in the same geographic area as all the rest of the patients with the disease
24:50 - Network diffusion is when the disease spreads along a network of individuals like when a disease spreads through a network of airports
28:07 - “Flattening of the curve” refers to slowing the spread of the virus
30:33 - Slowing the spread of the disease will prevent hospitals from being overburdened
30:49 - Social distancing protects individuals, but it also saves lives by protecting hospitals’ ability to respond to patients with the serious version of the virus
31:43 - Idris Elba tested positive for coronavirus despite having no symptoms
32:36 - Tiffany has been experiencing concerning symptoms, but she wasn’t able to be tested for COVID-19 due to testing shortages
34:25 - Nobody will know the mortality rate for COVID-19 until it has run its course
35:30 - COVID-19 is significantly more deadly than the seasonal flu
36:00 - Creaky Joints interviewed a woman in Texas who had exposure to people with COVID-19 but wasn’t able to be tested for the disease
38:00 - The situation with COVID-19 indicates that our society really needs to reevaluate our priorities and put an emphasis on public health and the value of medically fragile lives
39:30 - Our society needs to believe in science and trust journalists to combat the widespread dissemination of misinformation
41:14 - Autoimmune patients may experience severe morbidity or a loss of efficacy of treatments as the result of serious viral infection
42:12 - Patient advocates have been using #highriskCOVID19 on social media to raise awareness of people living with invisible diseases who are at elevated risk
45:05 - It has always been the policy of Global Healthy Living Foundation to practice social distancing whenever an individual is sick to reduce the spread of infections
46:20 - Society is currently having to grapple with the impacts of social isolation in a way that the chronic disease community already has
47:06 - Social distancing is an opportunity to build bridges with people who don’t understand the social isolation that can be a part of AiArthritis diseases
48:03 - Services that help support social distancing may be overwhelmed right now and unavailable to patients who normally depend on them, and creative solutions may be helpful
50:33 - Deep breathing exercises, movement, hydration, and avoiding smoking can help make your lungs be in the best shape possible in case you contract the disease
51:30 - Making mental health a priority and seeking needed support is also very important
52:30 - Everyone should be respectful of other people’s fears
53:25 - Creaky Joints has a webpage for coronavirus information (creakyjoints.org/coronavirus), or patients can receive social support from their Facebook page (@creakyjoints), instagram (@creaky_joints), or twitter (@CreakyJoints)
55:30 - IFAA is creating a group for COVID-19 information on Facebook (check the IFAA FB page @IFAiArthritis to access it) and launching AiArthritisVoices.org where patients can participate in an anonymous forum
56:22 - IFAA will make the AiArthritisVoices 360 platform available to all non-profits or rheumatologists who want to disseminate important information about COVID-19
57:28 - IFAA and CreakyJoints have teamed up with a number of non-profits and rheumatologists to support rheum-covid.org to create a registry for research into rheumatology and COVID-19
58:33 - Tiffany thanks Joe for participating in today’s episode
59:22 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Simon Stones discuss the prevalence and logistics of living with multiple conditions. Most health systems have moved away from a model where General Practitioners are managing all aspects of patient care to a model that places more emphasis on specialists and a depth of expertise in a specific disease. The downside to this is it has created a system where patients must be their own Care Coordinators, yet most have no experience or understanding of how to do this. What can be done to change the system? What can you do in the meantime to ensure that your health is not slipping through the cracks? Tune in to this week’s episode to find out.
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 18 – “Living with Multiple Conditions”
00:52 - Tiffany welcomes listeners and co-host, Simon Stones
01:58 - Today’s topic is living with multiple conditions
02:20 – Tiffany’s primary diagnosis is Non-Radiographic Axial Spondyloarthritis, but she also has comorbidities such as Bechet’s Disease and possibly Sjogren’s Syndrome
03:25 - If you have been sick for a while without an explanation, a diagnosis can be a relief
04:27 - Simon was diagnosed with Juvenile Idiopathic Arthritis at age 3 and has no memory of his life before Arthritis
07:06 - At 10, Simon was diagnosed with Slipped Capital Femoral Epiphyses
08:30 - Sometimes secondary conditions can be masked by the symptoms of the primary diagnosis, even when under the care of specialists
09:23 - Patients assume that their specialists will catch new problems, but there is a high risk of new symptoms being dismissed as part of the existing diagnosis
09:45 - Every patient is an expert in their own body and must advocate if they know their symptoms are something to be explored
13:20 - In his teenage years, Simon’s diagnosis was modified to include Psoriatic Arthritis or Undifferentiated Axial Spondyloarthritis
14:50 - In the UK, no biologic therapies are approved for adults with JIA, so patients must have a new diagnosis so they can have access to medication
15:32 - Managing multiple complex diagnoses in a complex medical system can be very complicated
16:51 - Around 12 years old, Simon developed symptoms of Crohn’s Disease, but the symptoms and markers were attributed to his JlA diagnosis
19:03 - Doctors may be reluctant to order tests that are unpleasant for pediatric patients. Parents may need to advocate strongly for their children if they believe something is wrong.
26:02 - Medicine should be evidence-based and not vary wildly from one doctor to the next
27:10 - A comorbidity is the presence of two related diseases (like Rheumatoid Arthritis and Cardiovascular Disease or Psoriatic Arthritis and Psoriasis) where one is the index disease*
27:33 - Multimorbidity is the presence of multiple diseases without the presence of a specific index disease and requires more holistic treatment
29:23: Some people will combine terminology of related diseases (ex: Lupus and Rheumatoid Arthritis = Rupus)
29:40 - Multiple Autoimmune Syndrome (MAS) is a term many doctors and patients use to refer to the presence of 3 or more autoimmune diseases
30:56 - Simon read a study that asserted that 25% of the general population of rheumatology patients has 2 or more diseases, but Simon’s experience would suggest it may be much higher than that
33:13 - Gathering more data would be helpful
34:52 - The actual rarity of having only one autoimmune disease impacts clinical trials because patients with comorbidities and multimorbidities are all excluded from clinical trials
38:17 - When you have multiple diagnoses and multiple specialists, you may need to become your own coordinator of care
39:04 - Pediatric specialists seem to be better about coordinating with each other, but adult specialists often rely on the patient to report what they have been told by their other specialists
41:10 - If you are not advocating for yourself and managing your own care, you run the risk of important warning signs being missed
41:55 - General practitioners used to be very involved in managing patient care across multiple specialities, but that is no longer happening
42:43 - Healthcare systems now really could benefit from moving to a coordinated care model
46:02 - Obtaining health records can be very difficult because patient data is the property of the hospital or doctor’s office instead of the patient
49:40 - Patient advocates should unite to tackle the problem of inconsistent patient data and data ownership
54:27 - The system needs to change, and it can result from grassroots efforts
55:00 - Decision-making processes about reforming the healthcare systems must include patient voices
55:17 - Patients often have the best solutions to healthcare systemic problems because we know exactly what we need to make things work better and reduce waste
56:13 - Tiffany thanks Simon for co-hosting today’s episode
56:52 - If you have an opinion on this topic, IFAA wants to hear from you!
57:08 - If you would like to take a seat at the table, visit us on social medias @IfAiArthritis on all platforms or email us @ podcast@aiarthritis.org
*An index disease is a primary or core disease with a significant impact on the development of a comorbidity
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. Welcome to this week’s episode of AiArthritis Voices 360: At The Table.
Today we are talking about World AUTOimmune & AUTOinflammatory Arthritis Day (#AiArthritisDay) which occurs annually on May 20th. This annual event was established by IFAA as our first initiative as a nonprofit, aimed to raise global awareness about AiArthritis diseases - and, in particular, to differentiate our type of arthritis from others. This year, IFAA will be jumpstarting the activities by hosting the AUTO Ball on Saturday, May 2nd from 6-10PM in St. Louis, MO.
In addition to raising organizational funds and introducing IFAA to the local community, the event doubles as the official launch party to begin the countdown to our big awareness day! The AUTO Ball won't be your typical "gala" - nope! In addition to auto-themed food and auto "flair" attire, awareness activities will be streamed to social media where an online watch party will take place. AUTO Ball attendees and online participants can also enjoy the Race for Education and Awareness with LIVE broadcasting all night long, via this AiArthritis Voices 360 podcast!
For more information about World AiArthritis Day, check out https://www.aiarthritis.org/aiarthritisday. To learn more about the AUTO Ball, including how you can attend, visit https://www.aiarthritis.org/autoball.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany Westrich-Robertson, as she and co-host Danielle Dass discuss discrimination against disabled people in the workplace. They dig into workplace accommodations, what to do if you are a victim of discrimination at work, and the connection between ableism and poor treatment of disabled employees. They also touch on how both delayed diagnosis and shifting identities can contribute to challenges in finding a work environment right for you. If you are a victim of workplace discrimination, a working person living with chronic illness, or a supervisor of other employees, this is an important episode for you!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 17 – “Discrimination In The Workplace”
00:52 - Tiffany welcomes listeners and co-host, Danielle Dass
02:09 - Today’s topic is discrimination in the workplace
02:20 – Danielle is a patient living with RA, Primary Biliary Cholangitis (an autoimmune liver disease), and Axial Spondyloarthritis
02:51 – Tiffany has Non-Radiographic Axial Spondyloarthritis
03:28 - Danielle’s workplace discrimination story
11:49 - Danielle was told that working was not in her best interest by her supervisors
12:20 - Treatment by supervisors made Danielle feel worthless and depressed
12:45 - Danielle never had a poor performance evaluation at work, but her supervisors still wanted her to resign
13:47 - Danielle went on disability leave 10 days after receiving the rheumatoid arthritis diagnosis
14:02 - She had medical documentation for all of her symptoms and illness even before receiving an AiArthritis diagnosis
14:39 - Danielle was surprised that the people discriminating against her had been her friends and were “nice” people
15:10 - Supervisors can have so much internalized ableism that they may not realize their beliefs are flawed or prejudicial
16:30 - Tiffany’s employers tried to accommodate her needs, but her needs kept escalating
19:00 - Tiffany changed careers and started IFAA so she could have a flexible work environment
19:38 - Accepting that you cannot work anymore even with accommodations can be very emotionally difficult for patients
21:28 - As employers transition to more flexible workplaces, employees living with chronic illness may find it possible to work longer
21:53 - Delay of diagnosis may prevent some patients from transitioning to more flexible careers before they become too sick to make career changes
22:33 - Workplace hostility and discrimination make it even more difficult to adjust to the identity changes that come when people are diagnosed with AiArthritis diseases
24:24 - Because your profession is so entwined with your identity, workplace discrimination can be extremely emotionally damaging
26:05 - Tiffany and Danielle asked people to send in stories about their own workplace discrimination and received quite a few responses over a period of only a few days
28:20 - Several patients reported hostile working conditions. Supervisors may hope that an employee will leave voluntarily if the workplace becomes very hostile
30:10 - The idea that accommodating a disabled employee is “unfair” to others is a pervasive theme in the stories received from other patients
31:00 - Supervisors or co-workers see symptoms of invisible illness and interpret it as laziness or incompetence due to internalized ableism
32:52 - A workplace accommodation is any change in the working environment that allows a person with limitations in their abilities to complete their essential duties
33:50 - Most people don’t have much experience with workplace accommodations and so are not sure how to accommodate specific challenges
34:22 - Employees must be able to perform their essential job duties
35:43 - Many people have difficulty separating the essential job duty from the way it is traditionally accomplished and so may incorrectly assume disabled people cannot perform those duties
36:18 - Internalized ableism is a fear of becoming or being disabled. See Episode 14 for more information about internalized ableism.
37:37 - Because people confused the objective and the method for accomplishing the objective, employers will list functions as “essential duties” that actually are not essential and can be accommodated. This needs to be addressed to make more jobs accessible to disabled people.
39:01 - If employers are listing essential duties incorrectly, they can discriminate against disabled employees without repercussion
39:40 - Often HR specialists who work in compliance roles have little to no experience or training in disability issues or patient advocacy
42:27 - EULAR was instrumental in getting social responsibility laws passed in Europe to prohibit workplace discrimination against patients with rheumatic disease specifically
43:01 - Accommodations requested by employees must be “reasonable”
43:44 - ARC Canada provided information on Canadian Law which said that accommodations are unreasonable if they endanger other people or compromise the organization’s financial viability
44:33 - According to the ADA in the US, reasonable accommodations are those which do not impose an “undue hardship” on the employer, which is commonly considered to be any significant difficulty or expense
45:07 - Whether an accommodation imposes an undue hardship is largely left up to employers to decide with very little oversight
47:33 - People are afraid to file complaints over accommodations because they fear retaliation
49:00 - Most victims of workplace discrimination cannot pursue lawsuits against their employer because they lack the financial resources to retain legal representation
50:40 - The average age of onset of AiArthritis diseases is 20-40, which is right in the prime of a person’s career usually
52:00 - Patients would benefit from resources that provide guidance about specific accommodations or legal aid
52:37 - Anyone experiencing discrimination or who is even concerned about potential discrimination should document everything that might be relevant to their story
53:50 - A physical record of documentation enables victims to have specific conversations with people who may be able to help them
54:49 - Highlighting victim’s stories to appeal to the public about the current state of discrimination in the workplace of disabled people is one of the most important things we can do as a community to change the state of things
55:29 - Victims may remain silent about their discrimination out of a sense of embarrassment
56:33 - If you are a victim of discrimination, you are not alone
57:10 - If you are a victim, the best thing you can do for yourself is to talk to someone about your experience
58:04 - People with disabilities are valuable and our ability to contribute to society should not be stunted by prejudice
58:37 - Disabled people who are given an opportunity to work with their talents can do amazing things
58:44 - If you have been the victim of workplace discrimination, please share your story with us on social media @IfAiArthritis on all platforms or via email to podcast@aiarthritis.org
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. Today we are talking about the challenge of having an unpredictable disease when you are in a situation that demands predictability. Tiffany shares an experience she had when summoned to jury duty. Perhaps you have been an employee, patron, or student of an organization that adheres to rigid scheduling and fixed timelines. How do you deal with the unpredictability of symptoms and flares in an environment that lacks flexibility? Visit us on social media @IFAiArthritis or email us at podcast@aiarthritisvoices360.org to share your experience. Then tune in Sunday, March 8th for a longer conversation about inflexible work environments that can lead to discrimination against disabled or chronically ill employees.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360. This week the show is wading into the complex world of therapeutic cannabis. Tiffany is joined by patient cohost Bridget Seritt, founder of the Canna Patient Resource Connection, an organization that collects comprehensive patient information for therapeutic use of cannabis products. They will discuss the various types of cannabis - CBD products specifically - legal issues, drug interactions, and how to safely incorporate CBD into your treatment plan. Whether you are a long time cannabis user or brand new to the idea of CBD, you will learn something new and useful in this episode. Listen in and then join us for a special Facebook event where you can ask your questions about therapeutic CBD.
The conversation doesn't end here! Join us on Facebook for a 'live' event where you can comment and ask questions about this episode. Tiffany and Bridget will be online periodically to check in. No worries if you can't make it today, it's Facebook, the posts aren't going anywhere: http://bit.ly/AiArthritisVoices360_CBD_Everywhere
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 16 – “CBD: It's EVERYWHERE!”
00:52 - Tiffany welcomes listeners and Bridget to the show
01:10 - Bridget Seritt founded Canna Patient Resource Connection, an organization that collects comprehensive patient information for therapeutic use of cannabis products
03:20 - Today’s topic will focus on CBD
04:07 - Conversations will focus on the patient experience. Bridget is not a doctor and cannot prescribe medication. You should take information back to your health care provider and discuss treatment options with them.
05:59 - The widespread availability of CBD products is confusing for patients and doctors
06:50 - Prior to 1960, all hemp products were legally classified as marijuana. Definition was changed in response to industrial lobbying.
07:19 - The only difference between hemp and marijuana is the level of THC in it.
07:28 - Federal definition of hemp is a plant that contains .3% or less THC.
10:24 - There are no standard definitions for broad spectrum, full spectrum, and isolate. But generally, full spectrum CBD contains all the cannabinoids, terpenes, and THC. Broad spectrum removes as much THC as possible.
11:45 - THC is the part of cannabis that produces an intoxicating effect.
15:15 - Information about CBD is primarily available online and is generally being circulated by people who want to sell CBD or have a political agenda. It may not be accurate.
17:42 - One site Bridget reviewed claimed CBD was legal in all 50 states, but it failed to mention any potential legal problems it could create for people
19:16 - CBD was removed from the schedule of controlled substances, but it was transferred to the regulatory authority of the FDA which considers it a “drug product.”
19:37 - The 2018 Farm Bill that legalized hemp also contained a clause that said the bill did not prevent states from regulating further. So unless state laws have been modified to remove CBD from their own controlled substances list, you could be violating state law even if it is federally legal.
21:34 - Using CBD would be a felony drug violation in South Dakota, even though it is totally legal in some other states.
23:24 - Always check with local municipalities for laws and regulations before beginning to use CBD.
23:40 - Canada allows all adults to use CBD, but they will not allow anyone to import it across the border.
24:10 - CBD isolates are legal in Idaho, but only ones made from hemp seeds and stalk. But CBD cannot be made from hemp seeds and stalk.
25:20 - In the United States, each state has a legal loophole that makes it illegal to give CBD to minors unless you participate in a state registry program. The Canna Patient Resource Connection has worked with four families recently who were in trouble with Child Protective Services for giving CBD to their child.
26:30 - In the US, mandated reporters, including teachers and doctors, are required by law to report you to CPS if you tell them that your child is taking CBD.
30:18 - The Arthritis Foundation surveyed people and found that over 70% were either interested in using CBD or already using it, so there is a lot of demand for accurate information about CBD.
34:19 - Very few patients experience relief immediately from taking CBD. It usually takes consistent use over time to see results.
37:12 - Cannabis has different effects at lower doses than it does at higher doses. Low doses tend to be more stimulatory, while higher doses tend to be more sedative.
37:38 - Some people may experience intoxication, so begin CBD therapy or increase your dose on a day when you do not need to be alert in case you experience a sedative effect.
40:48 - Oral CBD helps alleviate inflammation and neuropathic pain. Oral varieties are most comparable to extended release medications.
41:39 - Inhaled CBD via vaping is primarily recommended for acute symptoms.
42:39 - Vaping does not involve smoke or burning plant materials, and it is safe from reputable sources. Probably best for people with extreme nausea that do not have lung issues.
43:13 - Topical CBD products that include complementary essential oils are best. Entourage effects with topicals and essential oils are the most effective preparations for pain management.
46:07 - “Edibles” are a form of oral CBD where food is infused with CBD.
47:10 - Be wary of any commercial CBD infused products until you have researched them and seen lab testing. Most products infused with CBD are not going to be therapeutic.
47:59 - Avoid purchasing CBD from sources that you have not researched because there is no regulation currently in the US. Companies do not have to tell you what is in their product.
49:09 - Before you buy from a company, make sure that companies are batch testing every batch for THC content, solvent residues, heavy metals, and contaminants.
49:43 - Hemp is used to decontaminate soil. It will absorb many contaminants from the soil, so it is critically important that your CBD supplier be testing every batch for ground contaminants and heavy metals. Organic farming methods will not mitigate this risk.
51:18 - Always ask where a company is sourcing their hemp, and try to find a company that is using clean growing practices with local sourcing.
55:57 - Also ask what part of the plant is processed. You don’t want something from seeds or stalks. Ideally you want CBD sourced from flowers and some of the leaves.
53:48 - Look for a CBD that tells you how many mgs of CBD are in each mL of tincture, caplet, etc. so that you can regulate your dose for therapeutic purposes.
55:14 - Every oral drug that is metabolized by the cyp450 system will have some kind of drug interaction with CBD.
55:22 - CBD also cancels out some drugs completely, independent of the aforementioned liver action.
55:35 - CBD will cause some drugs to have a stronger effect than intended.
55:53 - CBD does interact with opiate receptors, so always consult a pharmacist before taking any opiate with CBD due to the potential for a toxic effect.
56:50 - Just because CBD comes from a plant doesn’t mean it is safe to use in every situation.
57:20 - CBD for aiarthritis diseases should be used in conjunction with prescribed medications, not as a substitute for DMARDs or Biologics.
58:55 - Most doctors and nurses have not received any formal training on therapeutic uses for cannabis.
1:01:43 - In states with legal medical cannabis programs, you can find a physician with cannabis training, and they should really be involved in your care decisions if you want to use therapeutic CBD.
1:03:09 - Visit the Canna Patient Resource Connection at keepitlegalcolorado.org for more information about therapeutic CBD use.
1:04:01 - Visit aiarthritis.org/podcast to continue the conversation about AiArthritis and CBD.
1:04:19 - Tiffany and Bridget will be hosting a Facebook event where you can ask questions about CBD. You can access that @IFAiArthritis on Facebook under the Event tab.
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week’s topic is based on the International Foundation for AiArthritis' work to advance precision medicine by improving shared decision making between patients and their physicians. There are even ways YOU can get involved in helping advance these initiatives!
Tune in to learn about the initiative and the steps in the process. Then sign on to get involved!
Patients, rheumatologists, rheumatologist nurses, those with experience developing and implementing shared decision-making tools: Visit www.aiarthritis.org/precisionmedicine to learn more about our award-finalist project, Preparing Patients for Precision Medicine (PM), which focuses on PM education and developing shared decision-making tools to prepare for the advancement of PM clinical trials.
Patients: Help OMERACT (Outcome Measures in Rheumatology) Shared Decision-Making Working group. Participate in this survey today and help them develop guidance that will clarify key relevant domains that should be considered when initiating patient-doctor shared decision-making interventions. https://redcap.cheori.org/surveys/?s=ECYXEMPLDW
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
This episode join co-hosts Charis Hill and Tiffany Westrich-Robertson as they discuss the important topic of overcoming internalized ableism, both individually and as a society. They discuss the reasons people living with AiArthritis diseases may find it difficult to transition to identifying as a disabled person. Charis also shares insight on medical vs social models of disability and some suggestions for overcoming our invisible prejudices against disabled people. They also touch on the United States federal disability benefits application process. This episode is important for everyone!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 15 ”Invisible Ableism”
00:52 - Tiffany welcome listeners and co-host, Charis Hill
02:34 - Charis was diagnosed with Axial Spondyloarthritis in 2013
02:45 - They applied for Social Security Disability Insurance less than 3 years later
03:18 - Living with Ax-Spa has affected them mentally and physically
04:16 - Charis considers their identity as a disabled person to be very empowering
05:43 - The definition of disability is any condition that restricts one or more activities of daily living, which applies to anyone living with chronic disease
06:04 - Based on this definition, everyone living with an AiArthritis disease is disabled from symptom onset
06:40 - Most people have a moment where they decide to use assistive devices, and that is often accompanied by a change in identity
06:59 - Ableism is discrimination in favor of the able-bodied
07:40 - Ableism normalizes able-bodied and neuro-typical individuals as the privileged class
08:32 - The medical model of disability mentioned before is what is used to define disability from a legal standpoint
09:05 - The medical model of disability blames the individual for being impaired and views them as incomplete or in need of fixing
09:14 - The social model of disability places the responsibility on society to make the world more accessible to all people, regardless of impairment
09:32 - “My disease impairs me, but society is what disables me”
09:41 - Disease does not prevent someone from entering a building. Society’s preference for stairs prevents them from entering the building or being able to participate.
10:24 - Internalized ableism is a fear of becoming or being disabled
11:34 - Children are socialized to blame their body for not doing what society says it should do
12:10 - Using assistive devices allows disabled people more freedom to participate in life
14:18 - Tiffany has avoided using devices that could improve her quality of life out of fear of being judged by others
17:41 - Part of the hesitation to use devices may stem from fear of letting go of their former identity
19:30 - Letting go of ability and losing privilege is a scary transition because you are completely shifting your outward appearance to the world
20:30 - Disabled people make up one of the largest minorities in the world, but also one of the most oppressed identities in the world
21:36 - Charis’ transition in identity began with using canes and wheelchairs in airports
22:13 - Why shouldn’t canes be accessories?
24:18 - Charis is sometimes politically motivated to park in accessible spots when they are not using their cane to normalize invisible disability
24:47 - If people confront Charis for parking in an accessible spot, they ask the person to please explain what a disabled person looks like
25:17 - Shortly after borrowing a wheelchair, Charis realized that they wanted their own wheelchair so they could be independent and participate in activities
27:46 - Never assume someone needs help or put your hands on someone’s wheelchair without asking
28:20 - In the same way you would obtain consent before touching someone’s body, you should always have consent before touching someone’s wheelchair because it is an extension of their body
29:18 - Sometimes non-disabled people have a tendency to treat disabled people as though they are not fully human
32:25 - There is so much value in our culture associated with working, which feeds ableism
33:50 - When your disease is unpredictable, it can be challenging to identify as disabled because you don’t feel disabled every day even though you have that disease every day
37:31 - Many people in the disability community are shifting to identity-first language (disabled person) vs person-first language (person with a disability), but you should ask about preference because there is not universal agreement
39:44 - On average, it takes 3-5 years in the United States for disabled people to receive federal disability benefits
41:40- Disability in the US does not pay a living wage, so there is a lot of fear associated with relying on that to survive
42:01 - The US discourages people from applying for disability benefits by making the application process very difficult, long, and expensive and by denying half of the applicants
43:42 - Charis recommends that anyone who applies for federal disability benefits in the US should use a disability attorney from the start
44:14 - Tiffany asks any international listeners to submit tips for applying for disability benefits in other countries
45:00 - Universal accessibility - which can apply to any space - is a model that seeks to maximize usability for as many people as possible
46:39 - Overcoming internalized shame - both as a society and an individual - is an important step to overcoming ableism
46:57 - At least 20% of the US population lives with a disability
49:00 - Buttons that make doors accessible to disabled people are not legally required to work in all locations in the US
51:00 - Eyeglasses are an assistive device that are now widely accepted by society, which demonstrates that shifts in acceptance can happen
52:20 - Tiffany thanks Charis for nominating the topic and coming on the show to lead the discussion
52:41 - Tiffany invites listeners to join the discussion on social media @ifaiarthritis on all platforms
53:00 - Listeners are invited to visit aiarthritis.org/podcast to submit topic ideas or get involved with the show
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week we are focusing on a topic that originated from part of a conversation between co-hosts Tiffany and Kelly (persons living with an AiArthritis disease) and Dr. Alfred Kim, rheumatologist. In the discussion, Dr. Kim states he is typically already prepared for how the visit will go before ever walking in the room. However, Tiffany pointed out that patients not only come to the visit potentially planning to present new information but that their past experiences throughout their disease journey also will impact the visit dynamic.
- Patients: How does your disease journey affect your current rheumy office visit expectations and/or communication needs?
Medical professionals: Do you consider the patient’s journey - including any potential fears they are bringing to the visit - when determining visit objectives or successful outcomes?
Given the average office visit is 15 minutes, it is important that both of these stakeholder groups better understand how the patients’ history can impact conversations today.
Submit your comments via email: podcast@aiarthritisvoices360.org or on Facebook, Twitter, or Instagram at @IFAiArthritis.
This episode excerpt is from our pilot series, Rheumy Rounds, a break out series of AiArthritis Voices 360. This show is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis (IFAA). Find us on the web at www.aiarthritis.org/podcast where you can find all of our episodes, submit topic suggestions, and more!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360. This episode join your patient co-hosts Tiffany and Kelly, along with roundtable guests rheumatologist, Dr. Alfred Kim, and graduate researcher Jerik Leung, as they conclude the first conversation in our exciting breakout series called Rheumy Rounds!
Today’s topic is improving communication between doctors and patients. Jerik and Dr. Kim explain some of the limitations doctors need to overcome in order to be more effective communicators. If you missed the beginning of this important conversation, check out last Sunday’s episode for Part I of Rheumy Rounds and a short break out "at the table" episode this past Wednesday focusing on Jerik's research on a patients' need for social support.
After you listen to this episode make sure to join the conversation by submitting your comments. We will assess all input and then pull up seats at the roundtable again to begin creating solutions TOGETHER! Submit your comments HERE. Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 14 ”Rheumy Rounds™ Pilot Episode Episode 14: Office Visit Communication Obstacles (Part 2)”
00:52 - Tiffany welcomes listeners to the show
01:46 - Listeners may experience Rheumy Rounds episodes out of order
01:59 - Rheumy Rounds started because patients identified a need to better communicate with their rheumatologists
02:32 - Guests this episode include Dr. Alfred Kim and Jerik Leung, who have done research on patient needs and communication barriers
04:18 - Dr. Kim gets most of his information about patient and public perception of diseases from his patients who have been googling their diagnoses
05:45 - Up to 80% of human assumptions are wrong, and most of us base our decisions and behaviors on these assumptions
06:46 - Dr. Kim says google may be misleading for patients and frustrating for their doctors
07:25 - For many physicians, the emotional aspects of the disease aren’t actionable from a clinical perspective.
08:00 - Patients may be on the defensive at the outset of appointments due to previous negative interactions with rheumatologists
09:00 - Learning to advocate for yourself is necessary for patients living with chronic illnesses
11:10 - IFAA conducted a study in 2013 that found that at least 30% of AiArthritis patients experience brain fog within 12 months of symptom onset regardless of diagnosis
11:54 - Very difficult for physicians who have no personal experience with chronic or severe illness to be empathetic with patients because they simply do not understand
12:53 - It’s important for physicians to ask patients to clarify their symptoms if they do not have any personal experience with them
14:18 - Some doctors aren’t comfortable being in a space where they are no longer acting as the expert, so they won’t ask questions to clarify the patient perspective vs the clinical perspective
15:29 - May be easier for physicians to ask questions of patient advocates as opposed to their own patients within an appointment
17:24 - Patients who can describe their own symptoms very specifically and very accurately (without hyperbole) make the most effective communicator with their physician
18:20 - Patients must know their own body and their own symptoms (like where specifically is the pain within a certain joint or what precise motions are more painful than others)
20:12 - Photos, symptom journals, or lists of topics you want to discuss should be sent to your
physician a week before your appointment so they can prepare for the appointment and use
the time most efficiently
22:30 - A proposal to put NYC physicians on Yelp was widely opposed by physicians who did not want patients reviewing them publicly
22:59 - Dr. Kim wanted his Lupus Clinic to be on Yelp because he wants to know what patients are telling each other about their experience
23:29 - HealthGrades is a website that allows patients to review their US-based doctors
26:03 - Mutual trust is critical between the patient and physician
26:53 - Occupational therapy support may increase patient compliance with their treatment plan and help them and their caregivers achieve a better quality of life
28:05 - Physicians may not address complaints from patients that they are not equipped to handle, but they should be able to refer the patient to someone who can help them
28:59 - Most common reasons people “fire” their doctor: they feel unheard or treatments are not
meeting their expectations
30:33 - Both doctors and patients could potentially benefit from training on how to interact positively and productively with each other
32:15 - Rheumatologists, visit us at AiArthritis.org/rheumyrounds to get involved with the show
32:37 - Patients, please visit us at AiArthritis.org/podcast to contribute your thoughts or sign up to be a co-host
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week we continue the conversation from Sunday’s full-length episode of Rheumy Rounds™, a break out series that brings rheumatology professionals & persons affected by AiArthritis diseases to the same table, as equals, to discuss important community topics that, if solved, would improve communication and positively impact outcomes.
Patient host Kelly and special guest, rheumatology researcher Jerik Leung, discuss Jerik's research into the importance of building a social support network for patients living with AiArthritis diseases.
If you like this episode and haven’t listened to Sunday’s conversation, we invite you to listen to it and then join the conversation by submitting your comments HERE. Also, stay tuned this Sunday for the compelling conclusion to this round table discussion!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
Learn more about Rheumy Rounds™ at www.aiarthritis.org/rheumyrounds
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360! Today we are introducing Rheumy Rounds™, a concept developed by the International Foundation forAutoimmune & Autoinflammatory Arthritis (AiArthritis) that will unite two very important stakeholder groups - the rheumatologist (as associated rheumatology professionals) and the patient - in roundtable discussions where both parties will be on equal levels discussing important topics that, if solved, can improve outcomes.
By listening to one another's concerns, perceived barriers, and desired improvements, we can begin to develop solutions that will impact patient lives and the rheumatology community as a whole.
This is a break out series in conjunction with our AiArthritis Voices 360 talk show (podcast).
This episode, join your patient co-hosts, Tiffany and Kelly, as they are joined by roundtable guests - rheumatologist, Dr. Alfred Kim, and graduate researcher Jerik Leung -as we dive right into the heart of the issue - communication barriers that currently exist between patients and their rheumatologists in the office setting.
Some issues discussed today include:
- How does each stakeholder view the expectations and the goals of the visit and how do they align with one another?
- When a patient sees a new rheumy they often feel it's "starting over", but if the medical records are intact, the doctor views it a continuation of care - how do these differing mindsets affect behaviors?
- How do social determinants affect care? (geography, outside social support, income, etc.)
- Rheumies are people too - how does emotional burn out affect visits?
Listen to the episode then take a few minutes to add your comments to the conversation. Based on your input, we will work to build solutions to address this issue and come back with a future episode to build on the discussion. You can join the conversation by submitting comments about this episode using this link. AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Tou can find this episode and more information about Rheumy Rounds, including how to be part of the show and submit future topics, at www.aiarthritis.org/rheumyrounds.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 13 Rheumy Rounds Pilot Episode: Office Visit Communication Obstacles (Part 1)
00:52 - Tiffany welcome listeners to the pilot episode of Rheumy Rounds
01:15 - Tiffany is joined today by co-host, Kelly
01:36 - Tiffany identifies her diagnoses
01:58 - Kelly explains her diagnosis
02:35 - Tiffany welcomes today’s guests: Dr. Alfred Kim and Jerik Leung
03:01 - Kelly introduces Dr. Kim and Mr. Leung and explains their work focus in the AiArthritis Community
04:54 - Tiffany explains the goals of the Rheumy Rounds Series
07:04 - Today’s Topic: Improving Doctor / Patient Communication
08:12 - Jerik’s research showed that patient goals did not always align with the physician’s goals, especially relating to medications and side effects
09:20 - Patients who are not connecting with their doctor and aren’t understood by their family will often seek out online communities so that they feel understood by someone
13:05 - Dr. Kim says the primary goal of rheumatologists is to determine what is actually going on with the patient. Are additional testing or imaging studies necessary? Are the notes from the previous doctor or patient provided information enough?
13:54 - Practicing Rheumatology is somewhat similar to practicing psychiatry in that there are usually not clear cut answers divined from test results. The physician has to review as much information as possible to arrive at a correct diagnosis.
14:50 - Rheumatologists must also prepare to have a difficult conversation with patients if the diagnosis doesn’t align with what they have been told previously or what they believe or don’t believe they have
15:13 - Sometimes patients arrive at a new doctor with incorrect information in their chart because a previous doctor had to use a certain diagnosis - even if it wasn’t the correct one - so the patient could get access to a needed medication
17:13 - Rheumatologists primarily base treatment plans on symptoms, rather than diagnosis. This is different than 99% of medicine practice and is confusing for patients.
20:08 - 80% of health outcomes are determined by social determinants, and only 20% is based on medical care
20:14 - Social determinants are the variables of how your living and working situation influences your health (income, education, social support, addiction status, employment status, etc.)
20:40 - Physicians have no meaningful training in influencing social determinants in their patients
23:30 - Patients really benefit from having collaboration between their doctors and having someone coordinate the services they need - both medical and social determinants - all in one place
29:45 - Physicians must translate colloquial information from the patient to technical information so that it will align with their training and then translate it back to colloquial format so the patient will understand it and be able to explain it to their social support network
30:18 - Physicians receive no formal training in communicating effectively with patients
32:33 - Patients should document concerns as they go so that they can communicate them effectively with their physician
32:50 - Shortened appointment times, electronic medical records requirements, and overwhelming workloads all contribute to emotional burnout among physicians who want to provide emotional support for patients
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week Tiffany introduces the new breakout series “Rheumy Rounds” which debuts this Sunday. We want your help! To make this unique series a success, we need your input. In this episode, Tiffany will explain why your thoughts are so important and how you can provide it. All Rheumy Rounds episodes will feature conversations between AiArthritis patients and Rheumatologists who agree to come on the show and help improve communication between patients and their doctors. We look forward to seeing you at the table.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Effie Koliopoulis discuss the challenges of living with an invisible illness or disability. Listen as they dig into the emotional and physical challenges people face every day by sharing their own experiences with the uncaring assumptions of others. People living with an AiArthritis disease regularly experience both friends and strangers disbelieving or not understanding what these illnesses entail. We hope this episode will be the first step to raising awareness and empathy for people suffering in silence. Spend some time with Tiffany and Effie and then log on to social media to share your story (@ifaiarthritis)!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week’s topic is coping with an invisible illness. How do you get the support and accommodations you need when people think you look healthy? Have you ever had an incident that shaped the way you behaved moving forward? Do you feel pressure to be performative in some way with your disability? Listen to Tiffany’s story, then log on to Twitter, Facebook, or Instagram to share yours (@IfAiArthritis on all platforms).
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Mariah is the founder of Mamas Facing Forward, an organization that supports Mothers with chronic illness, and a mother who has experienced both non-medicated and medicated pregnancies. Deb experienced pregnancy when doctors believed that AiArthritis patients could not take any medication during pregnancy or breastfeeding, and Tiffany inquires about concerns from a person who may be interested in planning a family.
Mother to Baby is an organization that collects and analyzes information on the safety of medication during pregnancy and breastfeeding. If you or your partner are thinking about becoming pregnant, this is a can’t-miss episode for you!
Learn more about Mamas Facing Forward:
Website: http://www.mamasfacingforward.com/ Facebook (public): https://www.facebook.com/mamasfacingforward Facebook (private group): https://www.facebook.com/groups/mamasfacingforward/ Twitter: https://twitter.com/MamasForward Instagram: https://www.instagram.com/mamasforward
Learn more about Mother to Baby:
Website: MotherToBaby.org Pregnancy Studies Site: MotherToBaby.org/ongoing-studies Facebook: https://www.facebook.com/MotherToBaby/ Twitter: https://twitter.com/MotherToBaby Instagram: https://www.instagram.com/mothertobabyotis/ Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 11 – “Pregnancy Planning With A Chronic Illness”
00:51 – Tiffany welcomes listeners and fellow patient co-hosts, Deb Constein and Mariah Leach
03:30 - Mariah’s Story
04:35 - Mariah founded Mamas Facing Forward (www.mamasfacingforward.com and private support group on Facebook) to support mothers experiencing chronic illness
07:15 - Pregnant women are under societal pressure to avoid any medication while pregnant, which can be dangerous for both mother and fetus
08:30 - Options for pregnant and breastfeeding women living with AiArthritis are improving due to new research and new data on safety
10:41 - Rheumatologists that have been in practice for a long time may need updated information about treatment options during pregnancy and breastfeeding
11:55 - Women living with a chronic illness need a pregnancy plan to improve outcomes
12:50 - Some women experience temporary remission during pregnancy, but others may have flares or more symptoms while pregnant
13:50 - Patients may not be honest with their rheumatologist about stopping contraception if doctors are not supportive of women’s choices and take an active role in pregnancy planning
15:37 - Pregnancy plans should include a treatment plan even if patients would like to attempt a med-free pregnancy
17:26 - Pregnant women with chronic illness need support and may need assistance in caring for other children
17:45 - AiArthritis women need a post-pregnancy plan because diseases tend to flare immediately after birth
18:45 - Other people may be judgmental about the way new mothers care for their babies due to limitations imposed by their disease
19:30 - Confidence and the ability to advocate for their own needs are critical for new mothers living with AiArthritis diseases
20:03 - New mothers need to be prepared for people to criticize their use of medication
20:44 - Women who need to use formula so they can take certain medicines experience judgment and criticism
23:29 - Researchers cannot conduct clinical trials on pregnant women, but MotherToBaby and other organizations can collect and analyze observational data
23:40 - Pregnant women can contribute to MotherToBaby studies with very little effort required
25:30 - Find a rheumatologist and an Obstetrician that support your pregnancy plan before conceiving if you can
26:27 - lupuspregnancy.org has resources about how to talk to your doctor about your pregnancy plan
29:44 - Tiffany welcomes Lynette from MotherToBaby
30:24 - Lynette explains the work of MotherToBaby
31:35 - Lynette discusses how MotherToBaby obtains their data
32:30 - MotherToBaby believes that all women should have access to medication safety information and that it should be intelligible to them
35:30 - When people claim that a medication-free pregnancy is always safer, they are ignoring the risks of an untreated chronic illness for the mother and the fetus
36:45 - There are new options for safe treatment while breastfeeding
37:35 - Women must be their own advocate when navigating the healthcare system
38:16 - Patients and doctors can visit mothertobaby.org for information on medicine safety, or they can call 1-877-311-8972 to speak to a trained teratogen information specialist
39:01 - Resources about all aspects of pregnancy and motherhood with chronic illness are available at mamasfacingforward.com
40:53 - Tiffany thanks everyone and invites listeners to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week, the International Foundation for AiArthritis is tackling the subject of biologic therapy*, specifically why they sometimes stop working. There are some ideas proposed by existing research for the sudden loss of efficacy, but there really doesn’t seem to be much out there. IFAA is on a mission to get to the bottom of this issue.
Do you know of any existing research on the life of a biologic*, specifically why they stop working? Email us at podcast@aiarthritisvoices360.org with the subject line “Life of Biologics” to share any resources you have found.
Also, patients - in order to best understand why this happens, we need to collect stories from those who have been successful on one biologic for a significant period of time (4+ years). We also need to hear from those who were successful for 4+ years and then the treatment lost efficacy. If this is YOU, please fill out this brief survey: https://conta.cc/30MmHwH
*this could include treatments that are similar to biologics, such as biosimilars, jak inhibitors, apremilast
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360. This week, join your host, Tiffany, as she and co-host Charis Hill discuss the evolution of the term Ankylosing Spondylitis into the new umbrella term: Axial Spondyloarthritis. What does this new term mean? How will it impact treatment options or the patient experience? Does it even matter what your diagnosis is if the treatments for AiArthritis are all basically the same? Listen in as they talk about these and other issues surrounding finding the right diagnosis. Then visit us on social media or online to make your voice heard in the ongoing discussion.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 10 – “The Right Diagnosis”
00:57 – Tiffany welcomes listeners and fellow patient co-host, Charis Hill
03:14 - The diagnosis of ankylosing spondylitis has been replaced with the umbrella term “axial spondyloarthritis”
03:46 - Non-radiographic axial spondyloarthritis was also added as a diagnosis that would cover early or atypical disease presentation that isn’t visible on radiographic imaging
06:10 - Some physicians within the rheumatology community do not believe there is a meaningful reason to differentiate between radiographic and non-radiographic diagnoses
06:25 - There is still a lack of clarity with regard to diagnostic coding which can impact patient access to treatments and the ability of researchers to track diseases
08:08 - Charis’ diagnosis story
15:08 - Early research suggests that non-radiographic axial spondylitis may be equally common in men and women, is often found in people who are HLA-B27 negative, and may have lower inflammation markers on blood work than the radiographic variety
16:35 - Biologically female patients are more likely to have neck involvement than biologically male patients, who present with the traditional lower spine involvement
18:16 - Axial spondyloarthritis is a more clinically accurate term because ankylosing spondylitis references only fusion of the spine, whereas axial spondyloarthritis encompasses inflammation or arthritis involvement anywhere in the center of the body
21:30 - Within the medical community, there is still significant conversation about what terminology to use
22:40 - Tiffany wonders whether radiographic patients would object to sharing a diagnosis with non-radiographic patients
23:47 - The Spondylitis Association of America has detailed information on their website about the differences in the changing terminology
24:37 - Spondyloarthrtis is the umbrella term that encompasses radiographic, non-radiographic, and peripheral disease presentations
24:57 - Patients want to be informed about their diagnosis terminology and understand what it means
26:05 - There has been considerable effort to raise awareness about Ankylosing Spondylitis, and now some people fear that changing the term will make it even more difficult to educate the public about this disease family
27:43 - Possibly grouping several diagnoses together will help raise awareness by increasing the numbers of people united toward the same goal
29:05 - Patients are still reporting that doctors don’t believe them without radiographic evidence
29:15 - Hopefully using the umbrella terminology with the subset diagnoses will help all rheumatologists to understand that not all patients will present with radiographic evidence
30:28 - The CDC does not have an accurate count of the number of patients with axial spondyloarthritis because many people with non-radiographic AxSpa were given a different diagnosis code so they could have access to treatments
32:05 - Even if the treatment isn’t going to change, patients want validation that their doctor knows exactly what is going on with them
32:15 - Patients want an accurate diagnosis so that they will have access to the right treatments in the future as new medications may be approved for their specific diagnosis
33:08 - Rheumatoid arthritis research has been applied to AxSpa patients, even though those diseases are very different
34:46 - Accurate diagnosis in medical records may also be important to future generations for reporting their medical history accurately
39:45 - Rheumatologists treat 200+ different diseases, so it is important for the patient to be knowledgable about their own disease because you may be 1 of only 10 patients your doctor sees with your specific disease
41:30 - Tiffany thanks Charis for co-hosting the episode
41:55 - Tiffany invites everyone to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic
42:53 - Visit aiarthritis.org/podcast to nominate yourself or someone else to co-host an episode of AiArthritis Voices 360
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. We invite you to join your host Tiffany as she talks about precision vs. personalized medicine. IFAA is working on a project called Preparing Patients for Precision Medicine to help educate patients on the terminology surrounding precision medicine.
That’s difficult to do when the medical community hasn’t even reached consensus on what the difference between "personalized" and "precision" is, as many still use it interchangeably. But, in reality, the importance to differentiate is necessary to advance research and future legislative efforts.
Today we invite you to join Tiffany as she talks about precision medicine vs personalized medicine. Then we hope you will join the conversation about the difference between these two approaches as we attempt to urge the AiArthritis Community towards a common understanding as we embark on our journey towards developing 'precise' therapeutics.
Please join the conversation by adding your comments on this podcast page OR by visiting the official show page on our website at www.aiarthritis.org/podcast-miniep9
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
This week join Tiffany and Deb as they welcome Dr. Aurélie Najm to the podcast. Dr. Najm is a rheumatologist and clinical researcher and currently serving as the co-chair for the European League Against Rheumatism’s Synovitis Study Group and part of the OMERACT (Outcome Measurements in Rheumatology) Synovial Tissue in Randomized Clinical Trials working group - which Tiffany and Deb also participate in. She explains how her teams are working to collect and analyze synovial tissue samples from Rheumatoid Arthritis (RA) patients to develop more precise approaches to treating the disease.
Deb and Dr. Najm will also discuss the decision to take part in tissue biopsies from the patient’s and researcher’s perspectives, especially when that decision is not based on necessity, but rather to advance science.
Would you undergo a knee biopsy to collect tissue so that the future of medicine can be more precise, and in turn, help doctors connect patients to the right treatments at the right time?IFAA is trying to help the researchers who do this type of work better understand what patients living with AiArthritis diseases may perceive as benefits and barriers to tissue donation. It's necessary to advance science, but it's also asking a patient to undergo a procedure that will cause some level of discomfort. But we need as many voices as possible to develop realistic recommendations. We need YOU!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 9 – “Changing the world with your knee tissue - investing in our future”
00:51 – Tiffany welcomes listeners to a touring episode recorded at the American College of Rheumatology Annual Meeting featuring rheumatologist and clinical researcher, Dr. Aurélie Najm
02:10 - Tiffany is joined by patient co-host Deb Constein
02:44 – Aurélie introduces herself
02:57 - She is researching providing tailored treatments to patients with rheumatoid arthritis
03:22 - Aurélie is the co-chair of the EULAR Synovitis Study Group, which is studying synovial tissue to determine the best treatment for each patient
05:10 - Cellular dysfunction in the synovial membrane causes synovitis (or inflammation of the synovial lining in joints)
07:30 - Patterns of inflammation within the synovial tissue can predict the future evolution of disease for that patient and which anti-rheumatic drugs may be more effective for that patient
10:56 - Deb discusses her experience with joint biopsy procedures
13:34 - The two methods available for obtaining synovial samples from joint spaces are arthroscopic or ultrasound guided biopsy
15:58 - Arthroscopic biopsy may be more precise due to the ability to visualize the inflammation when choosing a sample site
17:31 - Please consider providing input on what questions you have about synovial biopsies or participating in clinical research by visiting our website
19:41 - What would be the barriers and benefits to you as a patient participating in clinical research?
20:44 - Explaining the purpose of any procedure to the patient, especially when procedures are for clinical research and not necessity, is critically important.
22:11 - Volunteering for procedures to support clinical research is “an investment in the future.”
23:00 - Tiffany invites everyone to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic
23:34 - Tiffany thanks Aurélie for her time
24:56 - Researchers need patients to participate in clinical trials to benefit the entire AiArthritis community
25:10 - IFAA seeks to help researchers develop the right protocols to recruit patient participants
26:03 - Visit aiarthritis.org/podcast to learn how you can help
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. We invite you to join your host Tiffany as she talks about brain fog. Studies have shown that most people with aiarthritis experience brain fog, but why? What does the experience feel like for you? Tune in for information on the causes and a few strategies for combating it. Then visit our website or email us at podcast@aiarthritisvoices360.org to be a part of the conversation.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360. This week, join your host, Tiffany, as she and co-host Suz Schrandt talk about the variety of opportunities that exist for patients who want to become active in medical research, education, and advocacy. Regardless of your background, there are opportunities for you to get involved and help shape the future of medicine and science regarding autoimmune and autoinflammatory arthritis. Your voice matters, and you can make a difference. Pull up a chair to find out how to get started and where your journey could take you.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 8 – “Where Can Patients Use Their Voice? Everywhere!”
00:53 – Tiffany welcomes listeners and co-host, Suz Schrandt
01:12 – Suz is the Senior Patient Engagement Advisor for the Society to Improve Diagnosis in Medicine (SIDM) and Founder of a patient engagement initiative, ExPPect
01:31 – Suz explains the mission of ExPPect
04:39 – Suz explains how she got involved with patient engagement
07:47 - Tiffany explains how she started working with PCORI (Patient-Centered Outcomes Research Institute)
09:55 - Patient research partners are equal members of research teams
10:22 - There are many opportunities to get involved in patient-centered research
11:00 - Patients can become ambassadors for PCORI
13:00 - European Patients Academy on Therapeutic Innovation, the European Patients Forum, and the Innovative Medicines Initiative are all European resources for getting involved as a patient researcher
14:00 - International Society for Pharmacoeconomics and Outcomes Research (ISPOR) hosts patient representative round-tables all over the globe
15:56 - The US Food and Drug Administration (FDA) also has opportunities for patient involvement in the development and approval process for new medications
17:06 - Patients can partner directly with pharmaceutical companies to conduct research
19:03 - Most of these opportunities include some preliminary training to equip patients with the skills they need to fully participate
20:56 - The US does not have a singular Health Technology Assessment body like many other countries.
21:37 - Patients in countries that have an HTA body can serve as co-reviewers to help determine which therapies will be funded
24:08 - Instead, the US has the Institute for Clinical and Economic Review (ICER) which has some opportunities for patient participation
25:03 - Patients can be Advocates for the American College of Rheumatology
25:37 - Patients can provide input when medical specialty organizations are developing their clinical practice guidelines
27:05 - Patients can serve as Medical Educators by joining local hospital patient and family advisory councils
29:51 - Patient Focused Medicines Development (PFMD) has a repository of people, projects, and best practice guidelines for patient engagement called SYNaPsE
31:13 - Tiffany thanks Suz for coming onto the show to talk about patient engagement opportunities
31:26 - Tiffany thanks listeners and invites everyone to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic
32:00 - IFAA is recruiting patients to join AiArthritisVoices.org to get involved
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. We invite you to join your host Tiffany as she talks about New Year's Resolutions. Are you planning to be the healthiest version of yourself in 2020?
The odds of keeping New Year's Resolutions are low - for all people - because of commitment issues. We understand...those living with AiArthritis diseases often will not commit to activities that could be affected by flares. This includes activities related to eating healthy and exercising. So we are planning to start an education and support style group to encourage communication between those diagnosed and their families and friends, as well as for those diagnosed to support one another by sharing tips and success stories.
Would you like to join a group of fellow AiArthritis patients who want to choose better diet and exercise habits in the new year (personalized therapy/full body therapy)? Sign up the button to learn more, tell us what you want to work on in 2020, and sign up to be part of a group that shares and supports personalized therapy in the new year!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
*IFAA advocates in favor of both personalized therapy (which can include medications and/or non-pharmacologic options) and precision medicine. These two, while incorrectly used at times interchangeably, are different. Personalized medicine/personalized therapy is a regimen based on personal preferences and often includes a whole body approach to health improvements. Precision medicine is science-based, where medical treatments are developed based on targeting specific markers in a persons' blood.
Welcome to AiArthritis Voices 360. This week, join your host, Tiffany, as she gives the 2019 Year End Report on IFAA’s work to benefit the AiArthritis Community. You will have a front row seat as she explains the important work IFAA has been doing since its inception and the organization’s goals for 2020. IFAA needs your support to continue these projects. Learn how you can help make a difference in medical research, patient advocacy, pharmaceutical development, spreading awareness, public and physician education, and improving the quality of life of patients living with AiArthritis diseases.
Learn more about this episode and all the projects mentioned in this show at https://www.aiarthritis.org/podcast-ep7!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
00:56 – Tiffany welcome listeners
01:55 – IFAA was founded to prevent people from experiencing Tiffany’s struggle to obtain a diagnosis
03:10 – AiArthritis diseases that are not found early can result in permanent changes to a person’s life
04:15 – Please consider gifting to IFAA so that we can continue our mission
04:35 - IFAA is driven by the idea that patient experiences are key to finding solutions that impact education, advocacy, and research on AiArthritis diseases
07:00 - IFAA facilitated conversations among patients that helped to create a list of early symptoms of AiArthritis Diseases to help physicians and patients recognize symptoms as early in the disease progression as possible
8:00 - IFAA listens to all patient opinions and uses that input to create solutions
10:00 - In 2015, IFAA launched an investigation of the ethics of step therapy
14:05 - IFAA realized that insurance companies were basing decision on research gathered from clinical trials which excluded a majority of patients because their disease progression did not fit the standard
18:16 - IFAA established World AiArthritis Day to educate people about Autoimmune and Autoinflammatory Arthritis
18:45 - IFAA promotes understanding of the early symptoms of AiArthritis so that patients and physicians will seek input from rheumatologists sooner
20:04 - IFAA used this information to create early detection models and provided them to primary care physicians to assist in early identification of patients with AiArthritis symptom onset. We need your support to continue this work
21:00 - IFAA is actively seeking individuals who have symptoms but no diagnosis so that researchers can collect early symptom information that is not based on recall after the fact. This work is unprecedented and is based on needs identified by medical researchers.
22:37 - This work is funded by donations, not grants
23:00 - IFAA has spent a year developing AiArthritis Voices, an online forum for promoting education, advocacy, and research of AiArthritis Diseases
24:08 - AiArthritis Voices 360 Podcast was the result of an Innovation Award Grant
24:43 - This podcast was founded to give people around the world a voice in the important discussions about AiArthritis Diseases, even if they are not able to participate in online forums or medical conferences
25:55 - IFAA cannot continue our work with the online forum or the podcast without support from donors
26:20 - In 2019, IFAA started working on the Patient Reported Stills Disease Brochure Project to identify patient reported early symptoms of Stills Disease
28:35 - IFAA hopes to expand this project to create patient reported brochures for the other AiArthritis diseases
28:47 - IFAA attended 2 rheumatology conferences in 2019: American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) to collect information and disseminate it our members.
29:10 - IFAA needs donor funding to collect information at conferences and share it via the podcast and the online forum
30:00 - IFAA partnered with the Rheumatology Nurses Society on our precision medicine project as a result of meeting them at the ACR conference in 2018; attendance is important!
32:28 - In 2020, IFAA will develop an educational component to teach patients the difference between precision medicine and personalized medicine
34:15 - In 2020, IFAA will continue to develop the AiArthritis Voices online forum and seek to train patients to act as focus group moderators to decrease the cost of medical research
36:08 In 2020, IFAA will continue to focus on educating the public about biosimilar treatment options
37:38 - IFAA will continue working to protect access to treatment for patients with employer-provided health insurance in the US
41:00 - IFAA will be hosting our first Gala, The Auto Ball, on Friday, May 15th at the National Museum for Transportation in St Louis, MO, which will also serve as the official launch party countdown to World AUTOimmune & AUTOinflammatory Arthritis Day, May 20th. Let us know if you want to get involved!
44:24 - IFAA needs your support to continue the important work we are doing to benefit the AiArthritis Community
44:43 - One time gifts can be made at www.aiarthritis.org/donate
45:00 - Vocal Impact Partners can make a monthly gift beginning at $10 per month, Sign up at www.aiarthritis.org/VIP
46:15 - Tiffany thanks listeners for their support of the podcast and IFAA
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. We invite you to join your host Tiffany as she talks about the best gifts. When you’re a child, the best gift is usually an exciting toy. As you age, your ideal gift changes. People with AiArthritis diseases benefit from tools that help us remain active and comfortable so we can live our best lives. Do you consider mobility aids while shopping for a special someone? Is there a special can opener or heating pad on your wish list? We want to hear your best ideas for tools, devices, and comfort items that make life better for someone living with AiArthritis. Share your thoughts on social media @IFAiArthritis with #bestgift or email us at podcast@aiarthritisvoices360.org.
Watch the video of Tiffany giving her mom, challenged this year with autoimmune arthritis, a #BestGift ... a custom made mermaid cane! Because if you have to walk with a cane, why not make it fun? https://youtu.be/UYyEdbUCaVM
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Suz Schrandt discuss the importance of early detection and diagnosis. They address barriers to receiving an accurate diagnosis, as well as what patients can do to increase their chances of receiving an accurate diagnosis in a timely fashion. Research consistently shows that early intervention improves patient outcomes. Whether you are a patient looking to confirm the accuracy of your diagnosis or avoid diagnostic delays in the event of new disease onset or a member of the public wondering if you or someone you love could be experiencing the onset of a rheumatological disease, this episode is a must-listen!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 6 – “Early Diagnosis”
00:56 – Tiffany welcome listeners and Co-Host Suz Schrandt
01:35 – Suz explains Expect, a patient engagement initiative she founded
02:44 – The topic for today’s episode is early diagnosis because so many people experience delays in diagnosis that last months or years
04:15 – People frequently receive the wrong rheumatological diagnosis and treatment before discovering the correct one
07:15 - Delays lead to regret and distress as people wonder if they could be in remission if they had been diagnosed and received treatment sooner
07:48 - Suz’s diagnostic story
16:20 - Suz explains Polyarticular, Oligoarticular, and Systemic JIA (3 of the most common types of Juvenile Idiopathic Arthritis)
16:57 - Systemic JIA can be difficult to differentiate from juvenile lupus
19:25 - Clinicians have a tendency to focus on specific symptoms or parts of the body instead of seeing the whole picture, which adds to diagnostic delays
19:40 - Institutional barriers like short appointment times, overcrowded physician schedules, and cost concerns also cause delays in diagnosis
20:50 - Some of the hallmark symptoms of arthritis (like pain and fatigue) are invisible
21:17 - People will delay seeking medical help until they exhaust all options to manage symptoms themselves because amongst other things we assume it’s something we can manage or because we’re afraid of navigating the healthcare system
23:16 - Early age onset can also contribute to diagnostic delays because the patient appears very healthy
23:29 - Diagnostic delays also occur when medical professionals do not believe patients’ stories
24:50 - There are between 40,000 and 80,000 deaths per year in the United States due to delayed and missed diagnoses
25:12 - Age, gender, race, and ethnicity can all cause diagnostic delays
25:56 - Patients need to receive all of their test results in a timely fashion and may need to advocate to receive access to them
27:27 - Patients do not need positive bloodwork to receive an RA diagnosis, but it is very common for doctors to dismiss patients without supporting bloodwork results
29:35 - ACR diagnostic criteria only requires 1 or more swollen joints for more than 6 weeks without another explanation, but many clinicians - especially primary care - do not know that
30:26 - If your erythrocyte sedimentation rate (SED rate) is elevated or your RA factor is positive, that can be helpful for a diagnosis, but it is not required
31:35 - Testing positive for the HLA-B27 antigen increases the chances that you have ankylosing spondylitis (but some with radiographic changes may not have the gene).
32:38 - Suz explains work she has done to teach medical students how to diagnose aiarthritis
35:34 - The work Suz has done to teach practicing clinicians to identify aiarthritis diseases has increased referrals to a rheumatologist by 11% among doctors who completed the training she provides
36:30 - Treatment in the first two years is critical to preventing longterm damage and destruction
38:22 - You can review the diagnostic criteria for any rheumatological illness on the ACR or EULAR websites and use the information to discuss your concerns with your clinician
39:19 - Tracking your symptoms can really help avoid diagnostic delays and maximize the value of your appointment time with your doctor
41:13 - SIDM (Society to Improve Diagnosis in Medicine) collects stories from patients of delayed or missed diagnoses
42:23 - Tiffany invites listeners to visit aiarthritis.org/podcast and view the page for this episode to share your diagnosis story with SIDM or view diagnostic criteria on the ACR site
43:08 - Tiffany invites listeners to visit aiarthrits.org/voices to register and participate in discussions about this and other important issues surrounding aiarthritis diseases
43:46 - Tiffany thanks Suz for stopping by to discuss early detection and diagnosis of aiarthritis diseases
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. We invite you to join your host Tiffany as she talks about trying to differentiate between flu and flare. Are you coming down with a virus? Or is your AiArthritis flaring? We want to start a conversation about how you manage your flares. How do you juggle work, family, and life when you feel terrible and look fine? Tiffany also invites listeners to visit www.aiarthritis.org/talk to get involved in IFAA’s annual Talk To Impact AiArthritis.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360. This episode, your hosts Tiffany and Kaleb Michaud from FORWARD Databank, as they tune in from the American College of Rheumatology (ACR) meeting to discuss the importance of navigating your own health journey as a patient by having a voice in activities such as databanks and registries. FORWARD, and the associated projects mentioned, will not only help patients become more active in managing their own healthcare, the patient contributions will also benefit the advancement of science and the understanding of rheumatology.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 5 – “Patient Registries with Kaleb Michaud”
00:52 – Tiffany welcomes listeners
1:20 – Co-host Kaleb Michaud introduces himself as an associate professor at the University of Nebraska Medial School and co-director of Forward, The National Databank for Rheumatic Diseases and as a patient with Juvenile Rheumatoid Arthritis
03:17 - Kaleb presented at the American Conference for Rheumatology about International Registries for Rheumatology
04:10 - Forward is a patient-driven registry based on detailed survey responses collected from patient participants
08:53 - The Forward wants you to participate, whether you are doing really well or really poorly or anything in between
09:43 - Registries monitor patient journeys to benefit scientific understanding of rheumatic diseases
10:41 - Kaleb explains his decision to become a medical researcher
11:57 - Tracking patient symptoms over time can lead to more accurate diagnosis and treatment because patients may not be aware of incremental progression
13:38 - Long questionnaires encourage patients to thoroughly interrogate their own health and reflect on how they are doing
14:34 - One patient, Mary Felstiner, wrote a book titled Out of Joint about the experience of completing the questionnaires.
17:10 - People who participate in registry studies statistically live longer than patients who choose not to participate.
18:04 - IFAA is creating our own databank, A Community Team (ACT). We are currently working on the second phase of the project, dubbed ACT II. For more information visit www.aiarthritis.org/ACTII
19:05 - Tiffany invites listeners to check out www.aiarthritis.org/aiarthritis-voices, the sister site of the Voices 360 Podcast, where you can contribute your ideas for ACT II as well as all of our episodes!
20:12 - IFAA and FORWARD are also using the new AiArthritisVoices.org platform - and associated databank - to focus on patients who are diagnosed with Undifferentiated Disease, or struggling to get a diagnosis, so they can track onset symptoms in real time
21:00 - Tiffany invites listeners to connect anyone who is struggling to be diagnosed with the site
21:10 - Kaleb points out that all the patient responses to questionnaires are read by members of the team, and all information is used
22:30 - Kaleb invites people to visit www.forwarddatabank.org/ to get involved with Forward
22:45 - Listeners can email Kaleb directly with questions at kaleb@ndb.org
22:53 - Tiffany thanks listeners and Kaleb for joining her for this episode
23:02 - IFAA wants to hear from you if you have been very involved in managing your own healthcare
23:10 - If you have feedback about the registry experience, we would love to hear from you as well
23:30 - Visit www.aiarthritis.org/podcast to get involved
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. We invite you to join your host Tiffany as she discusses the phenomenon of a shifting identity. The way we see ourselves can change radically after diagnosis or symptom onset of an AiArthritis disease. But, as Tiffany points out, “having these diseases isn’t the end of the world. It’s just another way of living in it.” Tune in, then speak up. We want to hear how your identity has shifted and how you’ve made a new life for yourself post-diagnosis. Who are YOU?
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360. This episode, your hosts Tiffany and Kelly are joined by special furry co-host Georgia Grace as they dive into the topic of animals and pet ownership. Learn about the difference between service, emotional support, and therapy animals and how owning a pet can benefit people living with chronic illness. They also discuss tips for selecting and caring for pets in spite of mobility challenges and weakened immune systems. Finally, learn about the experience of owning a pet with a chronic illness and how it can enrich your life.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 4 – “Animals”
00:52 – Tiffany welcomes listeners
1:00 – Tiffany introduces Georgia Grace of “Making Lemonade with Georgia Grace” and owner, Kelly Conway, co-founder of IFAA.
01:45 - Georgia Grace is a 10 year old Cavalier King Charles Spaniel who has 10 chronic illnesses and was initially given a life expectancy of only 3 years
02:47 - Georgia’s story
06:49 - Georgia is a certified therapy dog
08:17 - 3 types of animals that are prominent in the AiArthritis community: emotional support animals, service animals, and therapy animals
09:45 - Tiffany adopted a rescue named Jack to help her combat depression and a sense of isolation
10:35 - Members of the AiArthritis community often depend on service, therapy, or emotional support animals to improve their quality of life
11:01 - Service animals are individually trained to perform tasks for their handler (ex: pulling wheelchairs, guiding the visually impaired, alerting high blood sugar or impending seizure)
11:33 - Emotional Support animals are usually dogs or cats, but not always
12:00 - Some people are abusing the accommodations for emotional support animals, which has a negative impact on people who genuinely need them
13:22 - Emotional support animals are specific to psychiatric disabilities and “other mental impairments” - which can include depression or anxiety
14:12 - Therapy animals must pass the Canine Good Citizen Test to be licensed, and only dogs with a very specific disposition will be able to pass the exam even after receiving intense training
16:56 - Therapy dogs must not beg for food, bark, climb or jump on people, react to loud noises, walk reliably on a leash, etc.
18:24 - Never approach a service animal or attempt to touch them or allow your children to do so
18:32 - People are able to pet therapy dogs as that is a big part of their function
18:41 - Only pet an emotional support animal if the owner allows it
19:51 - One of the benefits of pet ownership for people with chronic illness is that it can force the owner to exercise, which is good for patients even though the motivation can be very challenging when someone is in pain or not feeling well
21:00 - Not all breeds are a good choice for people with chronic illness. Researching breeds can inform choices based on exercise requirements, grooming requirements, space needs, etc.
22:20 - Having any pet can decrease blood pressure, according to the CDC
22:38 - Owning pets can encourage patients with chronic illness to socialize, which can also help with feelings of isolation
22:48 - If someone travels a lot, they should consider more independent pets like cats versus a dog that will require continuous care
24:18 - Having a weakened immune system can be an issue for pet owners due to zoonotic diseases, which are infections spread to humans by animals.
27:24 - People with weakened immune systems should wash hands after petting animals or handling their food.
27:37 - Scratches from animals can turn into cellulitis when you have a weakened immune system.
28:53 - Kelly discusses the experience of owning a chronically ill dog.
31:57 - Kelly was surprised at how many owners of chronically ill pets also have a chronic illness.
34:00 - Kelly shares tips for living well with pets even if you are battling a chronic illness.
39:50 - Tiffany and Kelly ask listeners to contribute their best tips to living more comfortably with a pet when you and/or the pet have a chronic illness.
41:06 - IFAA will publish safety tips about living with pets and weakened immune systems.
41:27 - IFAA will publish information about traveling internationally with service or emotional support animals.
41:49 - Tiffany asks listeners to log onto our website and let us know who you would like to have on the podcast in the future.
42:06 - This episode serves as the official launch for IFAA’s Annual Talk to Impact AiArthritis. Learn more at www.aiarthritis.org/talk
42:52 - Kelly will be giving away a “pawtographed” copy of Making Lemonade With Georgia Grace and a Living Well With Chronic Illness photo calendar to one lucky winner. Donate to the Talk to Impact AiArthritis to enter the contest.
44:00 - Talk to Impact is an annual charity fundraiser to generate end of year funds for IFAA so we can continue all of the work that we do.
45:20 - Tiffany thanks listeners and furry guests and invites everyone to check out www.aiarthritis.org/podcast
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. We invite you to join your host Tiffany as she tackles the sensitive topic of explaining the experience of AiArthritis to other people in your life. IFAA would like to hear from you! How do you explain your disease to others? Visit us online to take your seat at the table.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360.This episode join your host, Tiffany, and special guest Dr. Apostolos Kontzias from the Center of Autoinflammatory Diseases, as they discuss the distinction between these two sides of the immune system, and the diseases that stem from them. Inconclusive laboratory results, a shortage of experts in the field, and poor understanding of these conditions can cause diagnostic delays, leading to poor outcomes. This confusion also causes patients with adult onset diseases become a forgotten subgroup within the AiArthritis community.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 3 – “Autoimmune vs Autoinflammatory”
00:52 – Tiffany welcomes listeners
01:49 – This episode will explain autoimmune vs autoinflammatory arthritis
02:41 - “Auto” in both terms means immune mediated
03:13 - This will be an ongoing discussion beyond today’s episode
04:29 - Tiffany welcomes special guest, Dr. Apostolos Kontzias
05:24 - Dr. Kontzias’ credentials
07:40 - Dr. Kontzias explains the distinction between autoimmune and autoinflammatory, which both stem from the immune system, just different sides (“innate” vs “acquired”)
09:00 - Autoinflammatory patients usually lack laboratory markers for autoimmune disease - despite inflammatory symptoms - which can cause a diagnostic delay
09:23 - Both autoimmune patients and autoinflammatory patients can present with arthritis and other common features (fatigue, varying degrees of fevers)
10:16 - Autoinflammatory syndromes are innate (of unknown cause, from the primal part of the immune system) and thus can present early in life, but some do not present until adulthood
11:42 - Either type of immune response may be initially triggered by environmental factors, but also environmental factors can trigger disease activity
12:12 - Viral infections can trigger autoinflammatory syndromes
12:25 - Menstruation can trigger increases in symptoms for female patients for either type of disease
12:55 - Some conditions “bridge” the two types and can have features of both adaptive and innate immunity.
14:14 - By definition, patients with autoinflammatory conditions have an immune system that does not recognize the patient’s own structural components of their cells
15:17 - Fevers and rashes are often markers for autoinflammatory conditions. General markers for inflammation without laboratory results that support traditional autoimmune diagnoses are also predictive of autoinflammatory conditions
17:37 - Tiffany thanks Dr. Kontzias for his time
18:37 - IFAA working on designing informational brochure about Stills Disease based on patient input
19:28 - Patients report that there are differences between pediatric and adult Stills Disease even though scientifically they are the same
20:34 - Adults have extreme difficulty receiving accurate diagnosis for Stills Disease because the medical community only considers it as a plausible diagnosis for children
21:02 - IFAA wants to shine a light on those with adult onset autoinflammatory conditions because they are often a forgotten subgroup within our community
22:36 - Tiffany points out that there are so many patients who are told they do not have a problem because they do not have the positive lab results or biomarkers, including autoimmune (not specific to autoinflammatory, requires further discussion)
23:22 - Dr. Kontzias and IFAA want all medical professionals to listen to patients
24:13 - What else do you need to understand to help with your journey? Submit responses at www.aiarthritis.org/podcast
24:19 - If you are a medical professional, we want to hear your ideas on how we can help people understand these diseases better and lead to earlier detection or better disease management. Submit responses at www.aiarthritis.org/podcast
25:09 - Tiffany thanks listeners for tuning in to learn more about the difference between autoimmune and autoinflammatory diseases.
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. We invite you to join your host Tiffany as she discusses the need to differentiate arthritis types to address misunderstandings that lead to relationship conflicts and early diagnosis, which can result in compromised quality of life and elevated costs to our healthcare systems. If you have ever felt like nobody understood your disease, or you want to help IFAA create educational materials for the public and practitioners to help stop the information, then this episode is for you.
Let’s start a conversation about educating patients, families, the medical community, and the public about the type of arthritis associated with having an autoimmune or autoinflammatory disease.
Visit us online to take your seat at the table and submit YOUR comments: www.aiarthritis.org/podcast
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Deb Constien discuss the challenges faced by patients who experience atypical disease presentations, especially the need to advance our understanding of this phenomenon because the typical is not so typical. This concept is vital for early detection and improving outcomes. They also explore the ways that a lack of commonality among disease presentation and progression impact advancements in treatment options.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 2 – “Typical vs Atypical”
01:04 – Welcome Co-Host Deb
01:24 – Typical is not so typical
02:39 – What does atypical mean?
03:06 – Why IFAA focuses on atypical presentation of disease
04:20 - Only 30-40% of patients respond to “typical” treatment protocols for their diagnosis
05:43 - Deb’s Story
13:39 - Atypical presentation can affect treatment options which impacts longterm prognosis
15:25 - Deb’s disease progression has slowed significantly and she is able to repair some of the previous damage
18:19 - Shortage of available rheumatologists makes atypical diagnoses even more challenging due to extended wait times
21:58 - Senior patients may have trouble getting a diagnosis because arthritis is automatically attributed to age
23:30 - Unavailability of MRIs can be another barrier to accurate and timely diagnosis
25:31 - Lack of insurance or lack of coverage with some insurance plans can limit patient access to treatment options
26:38 - Participating in clinical trials can give patients access to otherwise prohibitively expensive treatment options, but only if they fit the typical model for the diagnosis
32:24 - Invitation to visit AiArthritis.org/podcast and share your story with IFAA
33:15 - How should IFAA define typical and atypical? Visit the website to participate in the discussion.
34:25 - Tiffany thanks listeners for tuning in