If the drugs have no net benefits for patients, these disparities in access may not matter much in the long run. But a heavy focus on expensive drugs could make it more difficult to close more mundane dementia care gaps that disproportionately affect marginalized Alzheimer’s patients. In the US, Medicare, the public health insurance program for older adults, does not pay for the health care providers many Alzheimer’s patients need, and communities often fail to integrate people with cognitive disabilities. These are solvable problems, but there is little energy to deal with them. “There’s something seductive about the idea of a pill or an infusion,” says Emily Largent, a bioethicist at the University of Pennsylvania. “It certainly can distract from the idea of interpersonal care.”
It’s been nearly half a year since the FDA granted accelerated approval to lecanemab, but until now it’s been nearly impossible to get the drug. That looks set to change soon: The FDA will meet to discuss full approval for lecanemab next month. (Approval is still pending in Europe, and in the UK it will also have to pass a cost-benefit test offered by the National Health Service.) Despite the risks and difficulties associated with the care, doctors intend to offer lecanemab, and later donanemab, to patients who want them. “It is not our intention to bash hope,” says Schneider.
That said, doctors play an essential role in helping patients decide if these medications are right for them. Clinicians will need to navigate the limited data available to explain the results patients can expect. It is then up to the patients to decide whether the potential benefits outweigh the costs – in time, money and health.
People may be willing to take great risks to slow down their disease. For patients and families, an Alzheimer’s diagnosis conjures up images of weakness and incontinence, of deep emotional wounds inadvertently inflicted on loved ones, of losing oneself in one’s own mind – it becomes a “dead to death.” When faced with such a fate, a Hail Mary treatment may seem appealing. Howard says his patients told him they would do anything to fight the disease, even if it kills them.
But candidates for anti-amyloid therapies are so mildly impaired that they can typically maintain their pre-Alzheimer’s lifestyle for a period of time, perhaps living with their disease for a decade or more. If they’re older, chances are something else will kill them before Alzheimer’s does. The idea that a life with Alzheimer’s is so little worth making any treatment worth it may be widespread, but it erases the rich lives that those with memory impairment lead.
That only adds to the tragedy of every death caused by lecanemab and donanemab. “People with mild dementia, even moderate dementia, can lead extremely fulfilling, happy lives,” says Howard. “Those people who died in those trials, those [were] people in the very, very early stages of their dementia. They still had a decent life ahead of them.”
Updated 5/24/22 12:00 PM ET: What can happen to patients after they finish their course of lecanemab has been clarified.