New Alzheimer’s drugs offer subtle benefits, with real risks

by The Insights

If the drugs don’t have clear benefits for patients, these disparities in access might not matter much in the long run. But a focus on expensive drugs could make it harder to address more mundane gaps in dementia care that disproportionately affect marginalized patients with Alzheimer’s disease. In the United States, Medicare, the public health insurance program for the elderly, does not pay the caregivers that many Alzheimer’s patients need, and communities tend to poorly integrate people with Alzheimer’s disease. cognitive disorders. These are fixable problems, but there is little energy to fix 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 certainly distract from the idea of ​​interpersonal care.”

It’s been almost six months since the FDA granted expedited approval for lecanemab, but so far the drug has been nearly impossible to get. That looks likely to change soon: The FDA will meet to discuss full approval of lecanemab next month. (Approval is still pending in Europe, and in the UK it will also have to pass a cost-benefit test which will be offered by the National Health Service.) Despite the risks and difficulties of care, doctors plan to d offer lecanemab, and later donanemab, to patients who want it. “We’re not looking to destroy hope,” says Schneider.

That said, doctors have a vital role to play in helping patients decide if these drugs are right for them. Clinicians will need to navigate the limited available data to explain the outcomes patients can expect. It will then be up to patients to decide whether the possible benefits outweigh the costs in terms of time, money and health.

People may be willing to take serious risks for the chance to slow down their disease. For patients and families, a diagnosis of Alzheimer’s conjures up images of debility and incontinence, of deep emotional wounds unintentionally inflicted on loved ones, of getting lost in one’s own mind – it’s called a “death before death”. Faced with such a fate, a Hail Mary treatment may seem appealing. Howard says patients have told him they will do anything to fight the disease, even if it kills them.

But candidates for anti-amyloid therapies are so mildly impaired that they can usually maintain their pre-Alzheimer’s lifestyle for a period and can live for a decade or more with their disease. If they’re old, chances are something else is killing them before Alzheimer’s. The idea that a life with Alzheimer’s disease is so worthless that it makes any treatment worthwhile may be widespread, but it erases the rich lives that people with memory disorders lead. .

This only adds to the tragedy of every death caused by lecanemab and donanemab. “People with mild, even moderate, dementia can live extremely fulfilling and happy lives,” says Howard. “These people who died in these trials, these [were] people in the very early stages of their dementia. They still had years of reasonable life ahead of them.

Updated 05/24/2022 12:00 PM ET: Clarified what can happen to patients after completing their treatment with lecanemab.

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