Does The New Alzheimer's Drug Treatment Released Last Week Offer Hope? with Terry and Roy

A new Alzheimer's treatment was introduced last week. This is the first new drug introduced since 2003. This drug treats the underlying issues of Alzheimer's, not just its symptoms. It is not without controversy. Members of the advisory committee quit and the company was ordered to continue trials and testing. An then there's the cost, on average $56,000 per year. What's your opinion?

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Full Transcript Below

Does The New Alzheimer's Drug Treatment Released Last Week Offer Hope?

00:00:15
Roy
Hello, welcome to another episode of educational. I'm your host, Roy Terry. We are chronicling not only our journey through the aging process, but also our parents. We're lucky to still have, I have both of my parents Terry's has one of hers that are still living and they're getting to that point where they, we're having to make some different decisions. Just become more challenging as we go through this. What we want to do is to, disseminate as much information as we can. Not only, talk about our struggles that we go through, but also have professionals on from time to time and use. Typically what we do is we release our professional, interviews on Tuesday. On Thursdays we have a, just more of our personal insights, things like that, but we're also going to start trying to focus more on, Alzheimers and we're not experts. I want to get that out of the way right now.

00:01:16
Roy
We are not experts. Don't claim to be experts, always seek medical advice, always read and research the information for yourself to make the best decision for you and your family and your loved ones. Terry has been through, the di the Alzheimer's struggles with her father.

00:01:37
Terry
Yeah, my dad, he had Alzheimer's well, he had actually dementia, Pick's disease. We always referred to it as Alzheimer's. Because he was, that's what he, the medication that he took was an Alzheimer's medication. So, to slow the progression and he had it, a good, he was out of the house for seven years, but he had it for a good, probably 10, 12 years total, that we not really want to do admit, but that we came to grips with and tried to do our best job that we knew how at the time, and he passed away about this is going on the, he passed away in 2014. So I'm almost seven years. Yeah. It was, I mean, we've got some funny stories about where he lived and things like that, but the medication, there's not much out there and they, and, there has not been an approved medication for use with Alzheimer's in any stage for 18 years.

00:02:50
Terry
Yeah. The fact that there was one, just within this last week that was approved for use, what was a huge feat right there.

00:03:04
Roy
Yeah. I think it's fair to say, and I'm not taking any sides, but I think it's only fair to the listeners to say that it's approved with an asterisk by it. So it's not without controversy. The other thing I read is that, we have 6 million people in the U S that suffer from Alzheimer's. Again, that's not taken in, I guess that's specifically Alzheimer's diagnosis, not taken into account, all the other types of dementias and things like that. But, yeah, at the, we thought it would be interesting, and this is, we made a decision a couple of weeks ago and, we just, we've been struggling with, technological issues, wifi and things like that. Anyway, we're going to try to be in more regular about having these Thursday releases, where we can talk about anything that's new and going on with us, but also anything new, with the struggle with Alzheimers, it may be not always going to be new information, but just bringing you some kind of inference, some.

00:04:09
Terry
Kind of current happenings, and there's always something current going on with it, because there are so many people and that number is just going to multiply so much as we get into the future. Yeah. It's important to get medication, oh my gosh, it's important to get money for funding research, all of that stuff. Yeah. Yeah.

00:04:34
Roy
So, this new drug is from Biogen and I'm not even gonna try to pronounce it. It's like.

00:04:41
Speaker 3
A aide. I.

00:04:43
Terry
Do kind of mob out economy, something like that. Nobody says it cause I don't know how to pronounce it.

00:04:50
Roy
But, so the weird thing was in here again, I'm, I've done a little reading and I think we'll just say most of the source that we have for this right now has been the NBC news on their website and then on CNN as well. So, what we always advise is go on there and check it out. And the FDA, I, I did.

00:05:13
Speaker 3
Pull it up on FDA side also. We're.

00:05:15
Roy
Not the experts and we don't ever want to be, but mainly we just want to give you something to the listener, something to think about something to investigate. It may or may not be a good fit, for each individual situation. It's definitely, may be worth the conversation with your healthcare professional or your loved one's healthcare professional. Yeah.

00:05:37
Terry
The, and the, when this first came out, I was so excited. I was just like, oh my gosh, they've actually approved something for use. Well, everybody was just across the board. Excited about it because it had spent almost 20 years. Well in the last, for about two or three days that of stewed and then all this other stuff came out about possibly, controversy regarding, the use. It's it's the first disease modifying therapy approved for use in the U S but it's for early stage Alzheimer's and, it treats the underlying disease rather than manage the symptoms like anxiety.

00:06:22
Roy
Yeah. The one thing I've read is that it does not claim to reverse Alzheimer's, but it does, slow the decline, which, it, if you have someone suffering, then of course that's good news. Some news is better than good news, some news, a better, no news. If it helps we would love something that would reverse it and make everybody back to where they were prior to that. But, if we don't have that, maybe taking that, the position of slowing it and at least extending that time, that's a win for some people. I think that's where the, that seems from the little research that I've done on this. That's kinda what the medical professionals, and if I'm not wrong, correct me, as we go through this, there was an independent panel back in November of 2020 that actually declined to push this forward and wanted more research and more information once they, once the FDA advisory and advisory panel and then the FDA kind of overrated that and pushed it out.

00:07:32
Roy
I was reading that one of the doctors that was on that original panel has actually resigned because it was about, well, 11 member panel, 10.

00:07:42
Terry
Panel, and 10 of those 11 members did not approve it for use because there were, different reasons. One of the 11 was uncertain. So none of them approved it.

00:07:58
Roy
Yeah. That's kind of the scary, because the drug came out on what they call an accelerated approval pathway, which I think has opened up a lot, due to COVID and the vaccine and pushing things through. I think the FDA is taking a hard look at, streamlining that. Again, it seemed like this was a lot of pressure from the public from Alzheimer's groups and things like that, because they're saying, Hey, look, kind of, like you said, in the intro is like, Hey, we haven't had anything in 18 years. If there's even a hint that this works, get it out. Let's trial it with real people, because that was another thing that, the way that they were trialing it, I don't think there was an issue with it, but, the limited number of people, I think these groups saw, if we get it out to the masses, we'll let them test this and see which, w that is one of the, I guess one of the abstract points of this approval process was that it was approved, but they told them that they had to continue doing their studies to make sure.

00:09:07
Speaker 3
What they were getting out of it, what the.

00:09:09
Terry
Advisory committee, the 11 member committee, didn't approve was the original study as it was designed. And, there are some possible side effects, like brain bleeds and, just even, but if you think about it, even if they had possible side effects, I mean, my gosh people have Alzheimer's, so what's gonna weigh it out, is it okay? Are you worried about the side effects from this, the possible side effects from this new drug or the possibilities of this new drug being able to be helpful? Right. I mean, they have Alzheimer's, that's not, that right there is the re that's the rest of their life. You don't know how long that's going to be, and you don't know what kind of other, on top of whatever health issue has come along with that, because there are so many, ?

00:10:11
Roy
Yeah. I think it's important that individuals make the decision, an informed decision. That, I think that's kind of where we're going with this. It seems is that, the groups are saying, yeah, I mean, as long as there's not a lot of, a large percentage of people that suffered the side effects, they're saying, well, let's put it in the people's hands and let's let them make a decision. You've got, you know, a terrible disease. Do you want to take a chance that this could go right for you? Or, are you willing to roll the dice and say, well, yeah, if I get the side effect, I'm not going to be much worse off, it may make it happen sooner, but I'm probably not going to be much worse off than I, if I would have struggled with the Alzheimer's, through the, in stages. The, in the, so that's kind of giving it back to self choices, letting people, families decide for themselves, is it worth it for us in our situation.

00:11:11
Roy
Of course, consulting their hair, health care professionals amongst that, but then also, the price, I mean, it's definitely going to be priced out. I haven't heard yet if this is going to be covered by insurances, or if it's going to be, if it's still going to be considered experimental, so people will have to pay cash out of their pocket, which, some data that I saw, and all this is very preliminary. We are typing this June 12th of, 20, 21.

00:11:48
Speaker 3
All the years are running together now,

00:11:50
Roy
Just the, you know, things change rapidly. And, if you listen to this and she, the end of June or July or August, maybe it's different, but for today, they're saying that this will cost $56,000 a year. I mean, that's a lot of money. That's about, what just under five grand a month then? no, it is. It said that what you have to do is you have to, it's delivered through infusion. You have to go in every four weeks, get an infusion, and it's based on your weight and then your cognitive impairment. I guess, if you're heavier and weight and have a, and you're further along with more cognitive impairment, maybe it's going to cost more and they give you a little more where if you're at the beginnings, then maybe not so much. I think that you've made that point too, is that this is originally, I guess, designed for people that are very early on.

00:12:50
Terry
Stages. Yeah. And, I'm sorry, I was going to go back because I didn't cause the, doctor who was on that committee who resigned the, advisory committee who resigned, he's not the only one who resigned. There were actually three total members who did. And, they, he cited one of the reasons because of the great public pressure to get a drug out. I don't know. It's just such a it's that. Also that it may delay the development for new drugs for Alzheimer's because they're putting everything into this. I, I don't know. I don't know what well, I mean, it's diminished a momentum for other ones. It's pretty.

00:13:42
Roy
Telling that 10 of 11 said no. One guy was like, and I don't know. Then, for three, two doctors to actually resign over, I mean, it's, that's pretty telling in itself. There was another analysis done and I'm not sure of the group that did it or how they went through the, coming up with these figures. What they did is they tried to look at, based on the gains from taking the drug that were suggested by the company studies, that this should only be priced between 20 $508,000 a year, which is drastically reduced the yeah. Substantially lower than the 56,000. It, if, I guess what they're saying, it's a cost benefit analysis. If you were to do this, what is the real benefit to you? And so that's another thing to maybe look at, is the huge difference in just that, is it really worth taking a chance? Well, number one, is it we're spending money for it and is it worth taking the chance with the side effects for obviously the minimal gains, but that's an outsider speaking.

00:15:00
Roy
If it's your loved one, then you're looking for a minimal gain, anything in, at any cost Aspen,

00:15:06
Terry
Right? Yeah. And, I was just gonna, I wanted to read the FDA's response when that came out, when the drug came out, it just said currently available therapies only treat symptoms of the disease that this treatment option, is the first therapy to target and affect the underlying disease process of Alzheimer's. As we've learned from the fight against cancer, the accelerated approval pathway can bring therapies to patients faster, well, spring, more research and innovation. So, everybody, it's just so confusing, but I know as, the daughter of an Alzheimer's patient, I would be grasping at every straw that I could and doing everything that I possibly could just to give them a chance. Just any chance.

00:15:59
Roy
Yeah. The, I think the other drawback to this is it, using it appropriately, if let's just say somebody uses the, in the later stages and it doesn't work as well, are we going to give this a bad name versus if it's used appropriately in the early stages and does delay, so I think that's another thing about, opening up widely is, and also really listening to the mystics that come out because we can, we just don't want it to come out and say, well, it's just not working in a large percentage, but if that percentage is people that it's really not targeted to help, then, we wouldn't expect that. I think, as you do your research beat, just be careful to look at all the different facts.

00:16:50
Terry
Yeah. And the, so Dr. Joel motor, I'm not sure if I'm saying his name, current para muter pear perimeter. Anyway, he was the one who was, who quit and came out and made a bunch of statements. One of the, statements that he made, he said that the original study as designed was fate, was it failed completely? So what the, accelerated approval pathway for the FDA accelerated approval pathway did, was retroactively choose a subgroup that got better. Those were typically very biased and that is quoting him. Yeah. So, you know, it's back and forth. I'm just very conflicted. I'm conflicted, but really anything it's just such a devastating,

00:17:54
Roy
These new things roll out there's, you can probably usually always make a case for, one side or the other. I think the main thing is it, information is power. You walk into a doctor's visit, the next time, at least you have this information to say, Hey, is it good for us? if were to do it, what is the outcome? What is the side effects? What is the stage that, you were in, or your loved one is in, and, try to make some educated and get some health care professionals. The problem is too with that is a lot of your local practitioners may not really be in the loop since this is as coming out new. It may take, looking deeper into some of the original studies and that, I was trying to think where that was, not sure where it was released, but I think you can find it on the FDA website.

00:18:51
Roy
Yeah.

00:18:51
Terry
Yes, definitely. Then, yeah, and we looked at see, and CNN and, the CBS and M N NBC, all of them, ABC,

00:19:05
Roy
It's such huge news, because, like I said, it's been 21 years. This treats the, some of the underlying, issues of the disease, not just their symptoms. So, there's just a lot of hope that's been put around this. We just need to, move cautiously until it's proven, one way or the other. All we are we recommend is just do your research, do your homework. Maybe don't even take one person's word for it, get this is, would be a great time to get a second opinion. Oh, well,

00:19:36
Terry
Third, fourth, fifth, especially with that. Keeping in mind that desperation, brings decisions that you may not make if you even had the information, but try to get as much information as you can right before.

00:19:53
Roy
All right. Well, unless you have anything else, we'll wrap it up for this episode.

00:19:58
Terry
Nope. Just, I mean, it's exciting news to know that we're close, but just make sure that you do your research proceed with caution.

00:20:08
Roy
Yeah. All right. Well, that's going to do it for another episode of educational. We appreciate you listeners very much. If, we also have the Facebook group, you can interact we're on Instagram, we're on all the major social media platforms. We have a lot of great guests. If you haven't listened to us before, go over to our website, www dot age, you dot com. You can see all of our previous guests and episodes that we've released, some really great ones out there. Some awesome ones to, come up in the future as well that we've got on the calendar. Give a listen and always open for feedback. If there's a topic that you'd like for us to cover or an expert you'd like for us to get on. If you've got a family member that's been through this, we also like to hear, individual stories of people want to share.

00:21:00
Roy
Then, if you have a practitioner that has to do with aging in some manner, if you want to recommend them, we'd be glad to talk about that. So reach out, let us know. And, we are on all the major podcast platforms to apple, Google, Stitcher, Spotify. If we're not a one that you listened to, please reach out. We'd love to, get it on. It make it easy for you to listen to until next time that's going to do it for me. I'm Roy Terri, you all have a good day, take care of yourselves and take care of each other. Take care of your loved ones.

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