Charles Piller
speaker
984 appearances
4 recordings
4 series
first heard Mar 2025
last heard 17 Apr
Charles Piller’s voice in public audio — every appearance, attributed to the second.
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recordings per month · last 12 monthsRecordings per month over the last 12 months — 2 in all, peaking in Apr 2026 with 1.
Appearances
But for people who are living on fixed incomes, they're still having out-of-pocket costs of thousands and thousands of dollars a year for this drug. To pay for it outright without insurance would cost in the many tens of thousands a year when you include the necessary brain scans to check for safety issues associated with this.
And of course, there's also the difficulty of taking the drugs, which is provided by infusions into your vein in a doctor's office. And this process has its own hazards. So I just want to say that This is a case where doctors are being asked by patients, should I take this drug? And I think many of them are saying, well, here are the costs and benefits of this. Here are the risks and benefits.
And for a person in your condition, here are the things you and your family need to consider. And I think what we've seen by the uptake being so slow, it suggests that a lot of people are just deciding not to do it. I think based on thoughtful comments and advice by doctors. Now, some doctors won't prescribe this drug because they're that concerned about it, but many will.
And I think even the ones that are prescribing it, many of them are saying, look, you have to weigh these for yourself. I can't tell you whether this is a good move for you or not. And really a lot of things in medicine, probably you can say much better than I can, really come down to that. They come down to a judgment call that the doctor and the patient have to collaborate on.
Yeah, that's a term we use in the field called shared decision-making. where a lot of times I think shared decision-making should be implemented throughout every decision that we do in healthcare, but especially in areas where the evidence isn't quite so clear one way or the other.
So a good example of this right now would probably be PSA testing or screening in otherwise healthy patients to potentially catch prostate cancer early. Before, in the past, we used to recommend it as a screening tool to catch prostate cancer early, and it was a higher-level recommendation.
Now it's moved back a bit to shared decision-making, where we talk about the risks you face, the potential downstream effects, the risk that you face based on your family history, et cetera, et cetera, and we come to the conclusion together whether or not to screen a healthy person, not when someone already has symptoms. That's a diagnostic test at that point.
So shared decision-making is really important. And I'm curious how the shared decision-making component was so poorly predicted by the pharma industry in this case, where they thought it was going to be a blockbuster drug.
especially in the case where when it comes to Alzheimer's disease, patients typically, what I've experienced, especially when a loved one has dementia, are almost desperate for anything. They're willing to reach for an experimental drug. They're willing to try anything because they're so desperate based on how devastating the condition is.
If that's the case, knowing my knowledge of how the disease develops itself, how it impacts families, how is there such a poor prediction by the pharma industry with it not becoming a blockbuster drug? Where was the disconnect?
Yeah, I mean, I think, I can't say for sure, but I think part of it is a pure financial equation. So these are publicly traded companies, they have shareholders, and they need to satisfy their shareholders.
And so when you spend sometimes billions of dollars developing a drug, you need to have great expectations for how that drug's going to do, or you're not going to be able to do the research and to do the testing that's required. And so I think part of it is purely financial motive.
A lot of this, look, the way we do drug development, it's a financial equation, and they're going to have to somehow justify their sunk costs.
Yeah. Do you have any issues with the current state of drug development as exists today?
Well, I mean, I guess I would just say I'm not, first of all, I'm not an expert in all drug development. But one thing that I've observed in working on this book is that there are some difficulties that FDA faces right now, contradictions that they face that I'm very sympathetic about. So on the one hand, particularly for diseases for which there are not good remedies, Alzheimer's among them,
And for rare diseases, there is enormous pressure on the agency to fast-track drugs, to wave them through, even though the results might be ambiguous, even though the results might be even not so great, because people who are in a desperate situation desperately want those drug approvals.
And the agency is then blamed if they hold things up for what many people would say are perfectly understandable, scientifically sound thinking by their analysts. So what I feel very concerned about is that the pressure is sometimes going to result in drugs being approved that are not just not very effective, but could also be harmful.
And the effects haven't been fully felt in the clinical trials that led up to their approval.
Is there a world where, and again, I don't consider myself an expert in this space, but I'm curious, based on your observations, if it would be valuable to create a new track for the FDA for medications?
where there are exemptions made for people who have terminal illnesses and they could be given an exemption to take a medicine where we know it's very dangerous, it's experimental, but because they have no other option, they may get an exemption to use a drug. Can there be some kind of research exemption track created for conditions like this?
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