Recent advances in diagnostics and therapies are redefining what it looks like to catch Alzheimer’s disease early. Whether these advances reach the millions of Americans at risk of developing Alzheimer’s, depends less on science and more on federal policy. Writing in the Chicago Tribune, former CDC director Dr. Robert Redfield says that we must learn from the early years of the HIV/AIDS epidemic, and match the pace of federal policy with science to avert an imminent Alzheimer’s crisis.
“Those early stages of the AIDS epidemic were marked by fear, confusion and stigma. Some doctors were even afraid to tell patients when they tested positive for the virus. It took years to understand what was happening, to learn that HIV infection was not merely a risk factor for AIDS, but the same disease at an earlier stage, and to encourage researchers to develop the multiple therapies necessary to control the disease. Now we know that HIV can be a manageable chronic condition when treated, and people with HIV can live normal lives without becoming critically ill. We know this because the federal government took decisive action to match our scientific understanding with a coordinated response and to focus on early disease and its timely diagnosis.” [...]
“Just as undetected HIV yields the devastating symptoms of AIDS, Alzheimer’s has a silent phase that leads to the symptoms of cognitive impairment and loss of function. During this silent phase, which can last 20 years, amyloid proteins in the brain begin to misfold and clump into neuron-killing plaques. Recently, scientists discovered that these plaques can be accurately detected in the blood. The Food and Drug Administration this year approved a blood test for Alzheimer’s that showed greater than 90% accuracy in clinical studies. Researchers are now using similar tests in clinical trials to identify people even before overt symptoms appear. These tests fundamentally change our understanding of the disease, just as the HIV test did for AIDS.”
According to the American Psychological Association, 15-20% of people over age 65 are living with undiagnosed mild cognitive impairment, a precursor which often progresses to dementia. Alzheimer’s disease and related dementias are significantly underdiagnosed in the United States, and it is estimated that less than half of people living with these diseases are formally diagnosed.
With neurologists and other specialists in short supply around the country, primary care doctors are on the front lines of dementia care. But many lack confidence when it comes to making a diagnosis or answering patient questions about dementia, due to constrained resources and training. Easier access to early testing would revolutionize the patient journey. Redfield outlines the necessary policy shifts to make this happen.
“The government should begin by endorsing what the FDA has already stated — that Alzheimer’s begins when amyloid becomes abnormal in the brain, decades before symptoms arise. The FDA calls this phase before symptoms Stages 1 and 2 of Alzheimer’s disease. Every public health agency should recognize this starting line and set policy accordingly. Such unified recognition can reduce stigma and inspire action, as it did with AIDS.”
“It can also expand access to early detection and treatment, so millions of aging Americans have options during the early window when intervention is most effective. If new tests and therapies for Alzheimer’s disease prove effective even before symptoms appear, and they generate solid evidence in gold-standard scientific studies, they should be approved without delay. At the same time, the Centers for Medicare & Medicaid Services should amend its national coverage determination for Alzheimer’s to include treatments for Stages 1 and 2 of Alzheimer’s disease.”
Alzheimer’s is one of the deadliest diseases in America, and its impact is growing as the baby boomer generation reaches peak risk. At this critical juncture, policymakers will play a critical role in determining whether the latest breakthroughs in Alzheimer’s science reach a generation of patients in time, or languish behind barriers.
You can read the full piece here.
