This is getting old.
Every time our nation has an opportunity to do something positive in the fight against Alzheimer's disease, we come up short.
The latest example is the U.S. Preventive Services Task Force, the independent panel charged with developing guidelines on preventive care services for primary care clinicians and health systems. The task force came to the conclusion that there is not enough evidence to warrant population screening for cognitive impairment in older adults in America. It is the exact same conclusion the group made back in 2003. This despite the fact that improvements in cognitive screening techniques have been achieved in the last decade.
The recommendation is a major disappointment, but it masks a bigger issue.
In truth, many clinicians are reluctant to identify Alzheimer's because it is a terminal disease that can drag on for years and requires intensive care by both patients and family caregivers. This is made more challenging by our health care system's difficulty with acknowledging dementia. The most widely cited statistic comes from a well-respected 2009 study, which found that general practitioners miss about half of all dementia cases. Think about if we replaced the word "dementia" with "breast cancer" in that last sentence. We would be outraged, right?
As an advocate for the Alzheimer's Foundation of America back in 2010, I helped push for the "detection of any cognitive impairment" provision to be added to the annual Medicare Wellness Visit in the Affordable Care Act. Thanks to the leadership of Sen. Tom Carper of Delaware, that provision survived. Two years ago, the Centers for Medicare & Medicaid Services determined that a doctor's observation was enough to fulfill this requirement. In other words, a doctor could decide if patients might have a cognitive problem or not just by looking at them, with no actual cognitive screening test. Sounds ridiculous, right?
The sidestepping continues in how we fund medical research. Out of each dollar appropriated to the National Institutes of Health (NIH), 16 cents goes to cancer, 9 cents goes to HIV/AIDS, and 3 cents goes to heart disease — all for conditions which have seen significant boosts in funding as well as subsequent reductions in the number of deaths over time. How much of each NIH dollar goes to research Alzheimer's disease? One penny.
As the saying goes, you get what you pay for. According to the Alzheimer's Association's Facts and Figures, 2014 Alzheimer's disease care costs are estimated at $214 billion, including $150 billion in costs to Medicare and Medicaid. But the federal investment at the NIH in Alzheimer's disease research is estimated to be only $566 million. As the Silver Tsunami grows with the aging of America's baby boomers, Alzheimer's will cost an estimated $1.2 trillion (in today's dollars) in 2050.
Our lackluster national investment in Alzheimer's research is longstanding, but not nearly as long as the NIH's tradition to "raise all ships" when it comes to funding. It's a nice idea in theory, but when funding starts out at uneven levels for different conditions, shared raises create more disparity over time. Why not consider prioritizing research investment based on socioeconomic factors, such as a condition's annual costs to Medicare, Medicaid and out-of-pocket costs to families? In the case of Alzheimer's, most other diseases wouldn't even come close.
Some of this disconnect with Alzheimer's disease relates to our fear of it. According to the Alzheimer's Association, more than one in five Americans rates Alzheimer's as the disease they are most afraid of getting. It's no wonder, since the same survey found that nearly three-quarters of Americans know or have known someone with Alzheimer's disease. Once you have experienced the look on a loved one's face who no longer recognizes you as "you," it forever changes your life.
Alzheimer's disease can seem utterly hopeless. So when government agencies give the public a lukewarm response to this massive problem, it is hard to take. While the last few years of increased federal funding for Alzheimer's research have been an improvement, we are still just spitting on a fire. Ultimately, it will take a willingness to make hard choices to effectively counter this growing epidemic.
You know what else is getting old? We are. Let's hope we do something meaningful before it's too late.
Susan Peschin is president and CEO of the Alliance for Aging Research in Washington, D.C. Her email is email@example.com.
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