FDA’s decision last week to approve a new “Alzheimer’s disease treatment,” and the buzz that surrounds it, is a symptom of all that is wrong with the way we care for frail older adults in the US. Rather than providing the supports that people with chronic conditions desperately need, and that evidence shows works, we prefer to chase butterflies.
In effect, this decision reflects a society that unquestioningly will spend tens of billions of dollars on a drug that may or may not improve the lives of a fraction of dementia patients. Yet, policymakers reflexively resist when asked to spend far less on more modest, but practical, functional supports to help families care for frail older adults and younger people with disabilities.
FDA’s approval of the drug aducanumab, which maker Biogen is marketing as Aduhelm, was enormously controversial since there is scant evidence the drug will benefit those with the disease. At least three members of an FDA advisory panel that strongly recommended against approval have resigned in protest.
A deeper problem
But the problem is much deeper than the drug approval process. Today, 6 million people and their families are living with Alzheimer’s, and millions more with other forms of dementia. Biogen is pricing this drug, which patients will have to take for the rest of their lives, at $56,000-a-year. Because the vast majority of those with symptoms of Alzheimer’s are older adults, Medicare’s Part B program will pay much of the cost though consumers still will have to pay 20 percent (or $11,200) out of pocket.
That open government checkbook for therapies is in stark contrast to the ongoing care and other supports that people with dementia (as well as those with disabling chronic conditions) so desperately need. Traditional Medicare pays for none of that. Nor does private health insurance. Some Medicare Advantage managed care plans will pay for limited personal care.
Medicaid does provide long-term care, but only for people with few or no financial assets and little income. Many live in nursing facilities. But because Medicaid is so underfunded, benefits for those living in their own homes often fall far short of their need.
Then, there are the millions of middle-income Americans who are ineligible for Medicaid but cannot afford the care they require. One study estimates that, among those age 75 and older, well over 8 million are middle-income and are unlikely to qualify for Medicaid.
The policy choice
In effect, policymakers have made this choice: Government will pay for 80 percent of a $56,000-a-year drug that may do nothing to improve an older adult’s quality of life. In the same way, Medicare will pay for a hip replacement for someone who never will walk and whose pain likely won’t be resolved by the surgery.
But when it comes to paying for critical supports and services, Medicare pays little or nothing. Thus, unless people are impoverished and eligible for Medicaid, they are on their own.
What could $56,000-a-year buy? It would pay for a home care aide for 20 hours a week (at $25/hr.) plus 3 days a week at an adult day center (at $74/day) with money left over for transportation, therapy, and a care manager.
Let’s put other numbers around this. The Kaiser Family Foundation estimates that about 2 million Medicare beneficiaries currently take Alzheimer’s drugs (none of which actually treat the disease). If half of them–one million people—are prescribed Aduhelm, Medicare would spend about $56 billion annually on the drug.
By contrast, the entire federal budget for Older Americans Act programs to support frail elders is about $2 billion (plus another $1 billion in temporary pandemic funding that likely will disappear after this year). That is 0.03 percent of what the government is likely to spend on one drug that may help a relative handful of people.
Government spends a small fraction of that, about $275 million, on home delivered meals—a program that improves the well-being of home-bound older adults, according to multiple studies (here and here, for example).
More context: The total federal share of Medicaid spending on long-term care in 2018 was about $80 billion. Imagine what a nearly $60 billion bump in that spending could accomplish.
Highlighting a failure
Indeed, Congress is in the midst of a huge fight over whether to approve President Biden’s plan to increase Medicaid spending for home-based long-term care by about $50 billion annually. Republicans and some Democrats oppose Biden’s plan because, they say, it is too expensive. But when it comes to Aduhelm, Medicare is likely to swallow the costs. And those lawmakers won’t say a word.
In theory, Medicare could limit access to the drug to those patients who actually can be helped, according to the evidence. But powerful lobbies, such as the drug makers and the Alzheimer’s Association, will fight this with the same vehemence they lobbied FDA to approve the drug in the first place.
A true cure for Alzheimer’s, or even an intervention that slows the disease progression, would change long-term care in profound ways. But Aduhelm isn’t likely to do that. Instead, it mostly will highlight the failure of our current long-term care system and the need for reform. If the pandemic didn’t teach us to rethink our priorities when it comes to older adults, the Aduhelm episode should.