GearUp4CF - Why I Ride: Recent Episodes
Cystic Fibrosis BC
This uplifting podcast will bring you into the life and families of those with Cystic Fibrosis. This includes a collection of interviews featuring Riders, Volunteers and Families involved with the annual ride for GearUp4CF, and the Cystic Fibrosis community. Their personal stories share how this genetic disease affects families, the struggles of daily living, and the journey to finding a cure.
Mike Hamilton was diagnosed with CF in his pre-teens years. He remained healthy by being an active cyclist and playing soccer.
Currently studying as an undergrad student, he explains how important research for CF is to find the proper drugs and cure for this genetic disease. To read more about his work in detail, this article highlights their research, specifically with the drug Ivacaftor (primarily the G551D mutation) and it's affects on CF Patients.
Mike is currently one of the very few persons with Cystic Fibrosis selected to be on the clinical trial of the drug Trikafta. Here are the results of his clinical trail. He found relief from symptoms almost immediately.
When this episode was recorded in early June of 2021, the drug Trikafta was not yet available to Canadians. June 18th, Canada approved the drug Trikafta could be prescribed by Doctors to Patients with CF. The next step is getting it covered in your health regions, as not all health insurance or MSP covers the costs.
Mike is one of our riders who continues to come back, be a part of the CF community and a champion for helping us find a cure with research and advocacy.
Links
- New England Journey of Medicine - Trikafta Clinical Trials
- The published article from Mike and his team on the effects of Ivacaftor
- Patented Medicine Prices review board Canada
- PMPRB - General Audit letter
Todd was diagnosed with Cystic Fibrosis at a young age. He lived a relatively normal life through his teens and into University. Recently, being hospitalized, he was given Trikafta and saw a massive improvement. Listen to his story. Bonus, during the taping of this podcast, the Cystic Fibrosis drug Trikafta is now approved in Canada for Doctors to prescribe. This is a HUGE victory, but there is still more work to be done. The drug is available, but depending on your insurance provider, there is a cost.
WHAT CAN YOU DO TO ADVOCATE FOR ACCESS TO TRIKAFTA?
Stand up and make your voice heard. We need a commitment from provincial governments to expedite price negotiations and then immediate list of Trikafta after drug reviews are completed. Ways that you can help:
- Sign the petition to tell your province to end the wait for life-saving CF drugs.
- Send a letter to your provincial elected official
- Join our National Advocacy Network.
- Share your access stories on social media using #cfcantwait, and tag your elected officials.
- Write to and meet with your provincial and federal elected officials. CF Canada’s advocacy toolkit will help you have these conversations.
- Sign up for ‘The Advocacy Brief’ e-newsletter to get advocacy updates, including news about access to Trikafta, delivered straight to your inbox.
Aaron Mittler, father of Lucy Mittler and CF patient, has been an active participant with Gearup4CF since it's early stages. He found that by becoming an advocate, and riding in Gearup4CF to raise money, was so important for funding research in helping to find a cure. His team, Lycra for Lucy, is a force! They've raised over $300 000 since starting the ride. He encourages you to get involved, to be a part of something bigger then yourself. #CysticFibrosisNeedsACure.
Brenda, a mom of three boys discovered two of her three boys were positive with Cystic Fibrosis. Listen to Brenda's story along side her son Kenny on why they ride with Gearup4up, why they are a large part of the community and advocates for CF, and why it's important to show your support all year around.