Are the Latest Alzheimer’s Treatments Worth the Cost?

On this episode of The Long View, Howard Gleckman, author of the book Caring for Our Parents and an expert on the topic of aging and caregiving, discusses long-term care in the United States, Alzheimer’s disease treatment, the role of caregivers, and more.

Here are a few excerpts from Gleckman’s conversation with Morningstar’s Christine Benz and Amy Arnott:

The Growing Need for Long-Term Care

Amy Arnott: Let’s talk about the growing need for long-term care. You’ve said that a big reason is that medical advances have outpaced our ability to provide long-term care for older adults. Can you expand on that?

Howard Gleckman: It’s an interesting thing because people often talk about—you hear these phrases about the crisis of aging and the senior tsunami and all this stuff to make it sound like it’s a bad thing. But in fact, it’s a wonderful thing that medical technology has made it possible for people to live much longer lives in old age. It’s an interesting thing. Life expectancy has doubled in the last 120 years since 1900. It’s just remarkable. And that’s all good. The problem is that we now have, of course, because of the baby boomers, a growing aging population. They’re living much longer than they ever did. And when they get sick and they need this kind of personal support, we don’t have a system in place to help them. We’re great if you need the most sophisticated, cutting-edge healthcare technology. We’re not so good if you need somebody to help you get to the bathroom.

The Role of Cognitive Decline

Christine Benz: Can you talk about how cognitive decline fits into all of this? Because as far as I understand it, longer life expectancies lead to increased incidence of cognitive decline. Like the longer we live, the more likely we are to have cognitive decline. And cognitive decline is one of the main factors that seems to be driving the need for long-term care. So, can you talk about how that fits in here?

Gleckman: When you talk to long-term-care insurance actuaries, they will tell you that half of the claims are for people with dementia of some kind. The interesting thing to know is that dementia is very much, as you say, a disease of old age. If you put incidence of dementia on a graph, what it will look like is essentially flat until age 75 or 80. And then at 80, you get a dramatic increase in incidences of Alzheimer’s and other forms of dementia. It’s not to say people don’t get dementia at earlier ages, but it’s very rare. So, this very much is a disease of old age. And the reason there is so much more dementia now than there used to be is because people didn’t live long enough to get it. And now they are.

New Alzheimer’s Treatments

Arnott: Speaking of cognitive decline, there are some new Alzheimer’s drugs on the market. And we understand you’re not a doctor, but do you have an opinion about the data that we’ve seen so far on their effectiveness as well as what the costs look like?

Gleckman: This is a fascinating topic and really one of the most important issues that people are facing today. For 30 years, drug companies and academic researchers have been trying to figure out how to, if they slow the decline or maybe reverse or maybe prevent diseases like Alzheimer’s disease and other kinds of dementias, and they failed. They had no success. There were well over 100 drug trials and none of them succeeded. And in the last couple of years, there has been some limited success.

I’m going to try to not geek out and get too technical here. But the hypothesis behind Alzheimer’s disease was that people with Alzheimer’s had an excess of a protein in their brain. It was called amyloid beta. And when they did autopsies of people with Alzheimer’s disease, they opened up their brains and they saw lots of this amyloid beta. So, the theory became, if we can eliminate the amyloid beta, we can maybe address Alzheimer’s disease. Well, in the last couple of years, drug companies have now developed two drugs that have been approved by the FDA that do actually a very good job of removing the amyloid from people’s brains. So that’s great news. Unfortunately, even when you do remove most of the amyloid from their brains, it does not in any way reverse the damage that’s been done by Alzheimer’s disease. And all it does is it slows the progression of the disease and maybe not even slow it by very much. That’s still a matter of controversy. The studies are uncertain about this, and we don’t know over a long period of time what’s going to happen. So, what we have is we have a series of drugs that do a great job of removing this protein from your brain, but they don’t do such a great job of actually providing clinical benefit to people with Alzheimer’s disease.

The other thing that’s important to know is the research studies were done on people with very early stage dementia and very early stage Alzheimer’s. And we don’t really do a very good job of measuring their cognitive decline so that when you have a drug that slows the progression of disease, you really don’t know by how much because you really don’t know the baseline that well. The other issue about these drugs is they are dangerous. The drug trials have shown that a significant fraction of people who take this drug will have brain swelling and even brain bleeds. Most of those brain bleeds are trivial; they don’t really matter much. People won’t even notice them. But in a few cases, they’re severe enough that people died. And one of the big challenges of the state of the research now is we don’t really know enough to understand why it is that some people get these bleeds, and some people don’t; and why some people get the bleeds die and some people have no effects at all.

Then there’s the cost. The latest drug, which is called Leqembi, is going to cost $26,500 a year, and you have to take this drug for your whole life. Medicare has agreed to pay for it, but because it’s a Part B drug, not a Part D drug, so it’s not the kind of drug that you get at the pharmacy. It’s an infusion. So, you have to go to an infusion center and get this. You have to go twice a month. And even if you’re covered by Medicare, you have to pay a 20% copay, which means you’ll have to pay $5,200 a year out of pocket.

So, there are a lot of issues here. One of the issues that I’ve questioned is whether or not this is the best use of $26,500 a year by Medicare. Could Medicare do better by beneficiaries who have cognitive decline to provide other sorts of services, which traditionally it has not? And what could families do with that $5,200 that they’re going to be spending on a drug that may or may not help them?

How Much Long-Term Care Is Covered by Medicare?

Benz: Going back to long-term care and the extent to which it is covered or not covered by insurance and Medicare, can you discuss that component? Because I feel like there’s a ton of confusion on that subject as well.

Gleckman: There is so much confusion about this and it really doesn’t help the policy debate and it makes it very hard for consumers, for older adults. So let me try to explain it. Medicare, traditional Medicare, the kind of fee-for-service Medicare that about half the Medicare beneficiaries have, basically does not pay for long-term care at all, full stop. If you’re in a Medicare Advantage plan, which about half of the Medicare population is now, they are paying for some very limited kinds of supports and services. They may pay for home delivery of food, or they may pay for nonmedical transportation to the grocery store or something like that. They may pay for some other kinds of services, but the benefits are very limited. They’re limited currently to $30 or $50 a month where a long-term care normally costs hundreds of dollars a day. So, while there are some new experimental transitional services that Medicare Advantage plans provide, it’s fair to say that they don’t provide very much care. And as I say, if you’re in traditional fee-for-service Medicare, Medicare doesn’t pay for it at all.

Medicaid, which is the healthcare program for low-income people, does pay for long-term care, but you have to be very poor, and you have to be very sick. Middle-income people generally don’t qualify for Medicaid long-term supports and services. So generally, whatever care they get, they have to pay for out of pocket. That’s really the only choice they have, so they have to either save for it, or have to have long-term-care insurance, or an annuity, or have a relative or a friend who is very generous. Otherwise, they’re out of luck.