Medicare’s big gamble on a new Alzheimer’s drug | Opinion

What if we told you that Medicare recently agreed to cover a range of services that patients with dementia, and their families, desperately need. What if we told you that list of services includes housekeeping help, companionship to give caregivers a break, transportation, day care programs that give people with dementia social interaction, and durable medical equipment, like canes and wheelchairs.

What if Medicare invested $32,000 for those services every year, as long as they’re needed.

That sounds too good to be true, doesn’t it?

Unfortunately, it is. Sorry to get your hopes up.

No, Medicare is not offering to pay for those services.

Instead, Medicare is making a new drug available to people with dementia. That drug, donanemab sold under the brand name Kisunla, at a price tag of $32,000 per patient every year, is costing Medicare tens of billions of dollars annually.

Does that make sense? We think it doesn’t.

While these drugs have shown promise in slowing cognitive decline, they don’t address the immediate, pressing needs of patients and their caregivers. The services we’re talking about may not alter the disease course, but they make living with dementia more manageable and comfortable.

A critical measure of success in dementia care is delaying nursing home placement. It’s an outcome that Medicare, patients and families all want to avoid, given the high costs and the preference for aging at home.

We actually don’t know whether these drugs delay nursing home placement. They slow cognitive decline in the early stages of dementia so it’s possible that they might stave off nursing home placement later. But it’s very hard to say whether slowing dementia early on in the disease delays nursing home placement years in the future.

On the other hand, we know that providing additional services to patients and families in the home can prevent — or at least delay —nursing home placement.

It’s perplexing that Medicare is willing to spend $32,000 a year on a new medication with modest benefits, yet unwilling to fund services that demonstrably improve lives and reduce costs.

It’s not too late. Medicare still has an opportunity to do the right thing.

What if Medicare gave families a choice? They could choose the drug if slowing cognitive decline is most important to them, or they could take the annual cost to Medicare of that drug in the form of a health savings account, to be used for support services.

For some families, squeezing out every last bit of quality time with a loved one is most important. But for many, including many of the patients and families we care for, the right choice is exactly the opposite. These are families who are struggling to keep a loved one at home, while at the same time caring for children and trying to hold down jobs. What’s most important to them, even if it’s not most important to Medicare, is getting access to a broader range of services and support — and $32,000 a year would go a long way toward that goal.

So that’s our proposal. Medicare should give families of patients with dementia a choice. They can choose a new medication or coverage of services that help patients thrive in a home setting.

As CEO of CareYaya, I want to offer full transparency. CareYaya operates a no-fees nationwide platform that could help connect families to caregivers if given the choice of support services over medication. While CareYaya doesn’t charge fees due to generous backing from the NIH, AARP and Johns Hopkins, increased funding for support services could lead to more families using our platform. This potential for increased usage and visibility could indirectly benefit CareYaya in the long term.

People shouldn’t have to choose between an expensive medication and support services. That’s not fair. But if Medicare is offering to pay for drugs, then families should be able to choose services instead.

By giving families this choice, we can ensure that Medicare’s substantial investment in dementia care is used in the way that best serves each unique situation. It’s time for a more flexible, patient-centered approach to funding dementia care — one that recognizes the diverse needs of families facing this challenging disease.

Let’s empower families to make the choice that’s right for them.

Neal K. Shah is CEO of CareYaya Health Technologies and Dr. David Casarett is Chief of Palliative Care at Duke Health.