Does Robert F. Kennedy, Jr. understand the potential problems with screening for Alzheimer’s disease?
Politico recently reported on Kennedy’s push for more preventive care, including some screening tests. Much of this hinges on his shutdown (so far) of the US Preventive Services Task Force (USPSTF), and how it may be reincarnated with members that he selects.
(Excerpt:) Kennedy this spring told lawmakers the task force had been “lackadaisical and negligent,” faulting it in several congressional hearings for not recommending screening for Alzheimer’s. …
“There’s the potential that they could reform [the preventive services task force] in a way that is no longer evidence-based or scientific, in which case they can force insurance to cover things with no out-of-pocket costs, but things that might not be evidence-based or potentially could cause more harm than good,” said Aaron Carroll, the president and CEO of AcademyHealth, a nonprofit representing health policy researchers who follows the task force’s work closely.
I couldn’t find evidence for what type of Alzheimer’s screening Kennedy had in mind.
Politico explains that “Some companies could see a windfall if the task force recommends their products.” The article mentioned new blood tests for Alzheimer’s disease, for colorectal cancer, routine screening for kidney disease or for cognitive impairment.
All of these screening tests may sound like good ideas, but closer scrutiny always points to potential tradeoffs of potential benefits and potential harms with screening tests.
For example, a news story in the Journal of the American Medical Association reports:
The first plasma biomarker test cleared by the US Food and Drug Administration (FDA) to detect amyloid pathology, a hallmark of Alzheimer disease, may not always perform as well in the real world as the manufacturer claims, suggests a recent research letter in JAMA Neurology.
To be clear, these blood biomarker tests have not been approved as screening tests (for the general population), but, rather, as diagnostic tests (for people with some symptoms). Nonetheless, some believe these tests will eventually be used to screen people without symptoms. And in those uses, the potential pitfalls already identified could become even more problematic.
In The Washington Post, a 61-year old woman told her story about recently losing and forgetting things. She wrote:
I’d decided to ask my doctor about one of the new blood tests I’d been reading about. It involves looking for biomarkers, measurable biological signs linked to the disease, in a vial of blood. The FDA had cleared one to help diagnose Alzheimer’s, another to help rule it out.
It would be easy.
But as she thought about it more, a different possible reality set in.
Unlike a blood draw, a result can have a blast radius that reaches far beyond the exam room — into your family, your finances, your future. Once this information is out, cautioned Joshua Grill, a professor at the University of California at Irvine and director of UCI MIND who has received research funding from makers of Alzheimer’s drugs and diagnostic tests, “you cannot put the toothpaste back in the tube.”
A couple of hours, one panic attack and half a Xanax later, I called my doctor’s office. “Can you stop the test?” I asked. “I’m not ready to know.”
It’s a very thoughtful commentary.
My summary
I can’t know what homework Kennedy has done on the current approved Alzheimer’s diagnostic tests - and what the leap would be to use such tests to screen people without symptoms. I would hope it is at least as deep and thoughtful as this woman’s was as she considered one for early diagnosis. I would hope he has evaluated the depth of research the US Preventive Services Task Force has done in the past on screening tests - the tradeoffs of benefits and harms and the quality of evidence.
The Politico story cited above quotes Aaron Carroll, MD, president and CEO of AcademyHealth, “a nonprofit representing health policy researchers who follows the task force’s work closely.”
Instead of criticizing the task force, Kennedy should support more funding for the research that undergirds its recommendations, AcademyHealth’s Carroll said.
“You want more screenings for Alzheimer’s? Fund more studies,” he said.
The Trump administration’s cuts to funding and staff at the Agency for Healthcare Research and Quality, which supports the work of the task force, is contrary to what the health secretary wants to achieve, Carroll argued.
The agency has lost most of its workforce since Kennedy took over, going from nearly 300 employees in 2024 to 87 now, according to data from the Office of Personnel Management. House Republicans have proposed eliminating the agency in the bill funding HHS for the 2027 fiscal year, calling it “duplicative.”
Defunding the agency that supports the task force and deprioritizing its meetings is contrary to ending the chronic disease epidemic.
Just like the woman above discovered in her Alzheimer’s test decision making, it sounds like an easy choice. It isn’t. And it may be difficult for the non-scientist, non-medically-trained head of the Department of Health & Human Services to grasp that.
I wish more people could understand this and realize screening without evidence that results are valid and without the ability to treat anyway, is just a waste of money and deludes patients. These screening tests are a gift to Kennedy’s wealthy biomedical friends, while he cuts funding for real research.
If RFK, Jr. wants more preventive care, an Alzheimer's blood test is not the place to start. It may point up the risk for that individual, but where is the prevention? A blood biomarker would, at best, be a risk assessment. So far, there is no medical intervention to prevent Alzheimer's disease. Along similar lines, the first line of the JAMA Network article is less than precise. The blood test does not indicate Alzheimer pathology. The pathology occurs in the brain. It is merely a test for the presence of a biomarker not even intended for screening.