While many Americans are familiar with the devastating impact of Alzheimer’s disease, few understand the cruel disparity with which it strikes. Black Americans are twice as likely to be diagnosed with this mind-robbing disease and bear the greatest costs of caring for loved ones suffering with it.
Alzheimer’s was historically diagnosed based on symptoms, and only confirmed with an autopsy. That has changed over the past 10 years, thanks to diagnostic tests to confirm the disease with brain scans. While these technologies can make a tremendous difference in treatment plans for people with Alzheimer’s, outdated government policies restrict access to them. That needs to change — and fast.
The Biden administration has initiated a review of Medicare coverage for a specific type of advanced diagnostic technology called positron emission tomography, or PET scans. These scans detect amyloid plaques in the brain, a telltale early sign of Alzheimer’s disease. Such plaques can form in the brain up to 20 years before the onset of symptoms like memory loss. PET scans are a crucial tool for physicians to accurately diagnose the disease, and treat it accordingly.
Medicare currently covers just one amyloid-detecting PET scan per person with Alzheimer’s over their lifetimes. In addition, individuals must be enrolled in a clinical trial to have a PET scan for Alzheimer’s covered by Medicare. There are many reasons Medicare should cover more than one scan per person. A new class of Alzheimer’s treatments that target amyloid plaques in the brain, and which are either approved by the FDA, under review, or in clinical trials, will likely require at least two scans: one to tell doctors if or when to start treatment, and at least one other to monitor whether the treatment is working to shrink or destroy these plaques and when to stop treatment.
Limiting these scans to people participating in clinical trials blocks a crucial opportunity to diagnose and treat Alzheimer’s disease in Black Americans — and undermines the shared goal of achieving health equity. It can create a tremendous financial stress midway through treatment if the initial scan is covered by Medicare but a follow-up scan is not. Most seniors are enrolled in Medicare precisely because they can’t afford to pay out of pocket for medical costs like PET scans. Health decisions should be made by physicians in consultation with their patients, and not limited by government policies focused on cost.
The Biden administration should expand access to these scans to ensure as many people as possible can benefit from the new Alzheimer’s drugs. The current policy, known as coverage with evidence development, dates back to 2013 when Medicare set out to determine the benefits of PET scans for the Medicare population. Almost a decade later, the data are clear: The technology is effective, and access should be expanded beyond participants in clinical trials.
The clinical trial restriction disproptionately affects people from underrepresented racial and ethnic groups. To enroll in a clinical trial, an individual must be able to access a hospital or health center that performs PET scans. Nearly 7 million Black Americans live in rural areas, where more than 180 hospitals have closed since 2005. Taking part in a clinical trial also means an individual must get time off work, find transportation, and navigate complex hospital red tape and bureaucracy — just to access a test for a deadly disease.
Even in urban areas, it’s more difficult for Black people to enroll in clinical trials than it is for white people. The vast majority of people eligible for trials are never referred to them. Under-enrollment of Black people in clinical trials is a longstanding problem that isn’t limited to Alzheimer’s research.
PET scans can make a huge difference for people with Alzheimer’s disease. In one of the largest studies conducted to date, access to these scans changed the treatment regimen of nearly 60% of patients.
Recent advancements in treating Alzheimer’s have brought renewed hope to millions of Americans. But these breakthroughs are effective only if people can access them. The Biden administration has the power to unlock access to new technologies that reduce health inequities facing Black seniors and make a tremendous difference in their lives.
Linda Goler Blount is the president and CEO of the Black Women’s Health Imperative.