PUMPING IRONY: Puzzling Priorities

The Food and Drug Administration’s approval last month of Leqembi to treat Alzheimer’s sufferers set into motion a lively debate over cost, efficacy, and insurance coverage. When the smoke cleared, the Centers for Medicare and Medicaid Services bowed to intense pressure from patient-advocacy groups and Big Pharma and agreed to cover the cost under certain conditions. The sad irony of that decision, however, will not be lost on a large segment of vulnerable seniors and their healthcare providers.

About 1 million Alzheimer’s patients, most of whom are Medicare beneficiaries, are likely to qualify for Leqembi infusions at a cost of $26,500 per year, according to a report by the Institute for Clinical and Economic Review. This price tag does not include outlays for the genetic tests, brain scans, and safety monitoring most patients will undergo because of the drug’s tendency to produce brain swelling and bleeding. Only a portion of those seniors will opt for the treatment, of course, and Medicare will not cover all the ancillary services, but some estimates suggest the demand for the dementia drug could cost the agency as much as $5 billion a year.

“In the history of science, it’s a significant achievement to slightly slow down progression of dementia,” John Mafi, MD, MPH, an associate professor of medicine at the David Geffen School of Medicine at UCLA, tells Kaiser Health News. “But the actual practical benefits to patients are very marginal, and there is a real risk and a real cost.”

I suppose it’s indicative of our healthcare system’s slavish devotion to Big Pharma that Medicare is willing to spend billions on an Alzheimer’s drug whose benefits may be negligible while ignoring the plight of dementia sufferers who desperately need in-home care.

A study released last week in JAMA Network Open revealed the yawning gaps in care for the estimated 25 percent of older Americans with dementia who live alone. Elena Portacolone, PhD, MPH, and her team of University of California, San Francisco, researchers surveyed 76 healthcare providers — including physicians, nurses, social workers, and home-care aides — to determine the scope of the problem they and their patients face on a daily basis. The scenarios these providers described ranged from the simply annoying to the stunningly reckless.

Many of these dementia patients living on their own could not even provide a single name to contact in an emergency, one case member noted. They missed their appointments, forgot to respond to phone messages and, once in the clinic, were often unable to provide necessary information to their doctor.

Many of these dementia patients living on their own could not even provide a single name to contact in an emergency, one case member noted. They missed their appointments, forgot to respond to phone messages and, once in the clinic, were often unable to provide necessary information to their doctor. All this made them more vulnerable to untreated conditions, falls, and general self-neglect.

And once the inevitable occurred and the person landed in the hospital, they were often discharged without a support system in place. In one case, a patient was sent home with a voucher for a taxi, a scenario one provider described as “sending a kid out to play on the freeway.”

Portacolone called her study’s findings an indictment of a healthcare system that — unlike other wealthy nations — provides home-care services to only the poorest of the poor. “In the United States,” she notes, “an estimated 79 percent of people with cognitive decline have an income that is not low enough to make them eligible for Medicaid-subsidized home-care aides in long-term care.”

Medicare provides coverage for such services only after a patient has been hospitalized and then only for certain fixed hours over a limited time period, she explains. “Most patients need to pay out-of-pocket and since cognitive impairment can last for decades, it is unsustainable for most people.”

Despite the emergence of Alzheimer’s drugs like Leqembi, Portacolone and her colleagues argue that nothing on the horizon promises to reverse cognitive impairment among the swelling population of U.S. seniors — many of whom will struggle with the disease while living alone. So, rather than invest heavily in treatments that offer only negligible rewards, they argue for a cost-effective expansion of Medicare and Medicaid coverage that will provide needed help to the most vulnerable among us.

“In an era when Medicare is going to spend millions of dollars on newly approved drugs with very marginal benefits,” says senior study author Kenneth Covinsky, MD, MPH, “we need to remember that Medicare and other payers refuse to pay far less money to provide necessary supports for vulnerable people with dementia.”