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If the drugs don’t have net benefits for patients, these disparities in access might not matter much in the long run. But a big focus on expensive drugs could make it more difficult to close more mundane gaps in dementia care that disproportionately affect marginalized Alzheimer’s patients. In the US, Medicare, the public health insurance program for older adults, doesn’t pay for the caregivers that many Alzheimer’s patients need, and communities tend to do a poor job of integrating those with cognitive impairments. These are fixable problems, but there’s scant energy to address 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 can definitely distract from the idea of interpersonal care.”
It’s been almost half a year since the FDA granted lecanemab accelerated approval, but so far, the drug has been nearly impossible to obtain. That seems likely to change soon: The FDA will meet to discuss a 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 to be offered by the National Health Service.) Despite the risks and the difficulties involved in care, doctors do plan to offer lecanemab, and later donanemab, to patients who want them. “We’re not in the business of bashing hope,” Schneider says.
That said, doctors have an essential role to play in helping patients decide whether these drugs are right for them. Clinicians will have to navigate the limited available data to explain the outcomes that patients can expect. It will then be up to the patients to decide whether the possible benefits outweigh the costs—in time, money, and health.
People may be willing to take on grave risks for the chance of slowing their disease. For patients and families, an Alzheimer’s diagnosis conjures images of debility and incontinence, of deep emotional wounds unintentionally dealt to loved ones, of losing oneself inside one’s own mind—it’s been called a “death before death.” When faced with such a fate, a Hail Mary treatment might seem appealing. Howard says he’s had patients tell him that 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 lifestyles for a period, and may live for a decade or more with their disease. If they are elderly, there’s a good chance something else will kill them before Alzheimer’s does. The idea that a life with Alzheimer’s is of so little value as to make any treatment worthwhile may be widespread, but it erases the rich lives that people with memory impairment lead.
That only adds to the tragedy of each death caused by lecanemab and donanemab. “People with mild dementia, even moderate dementia, can live extremely fulfilling, happy lives,” Howard says. “Those people who died in those trials, those [were] people at the very, very early stages of their dementia. They still had years of reasonable life ahead of them.”
Updated 5-24-2022 12:00 pm ET: What may happen to patients after they finish their course of lecanemab was clarified.