In her latest investigative piece for The Lever, investigative journalist Jeanne Lenzer exposes the vast lobbying and marketing machine designed to turn healthy aging adults into “pre-Alzheimer’s” patients.
Her reporting connected the dots between financial ties of high-level figures like Robert Redfield to patient recruitment through Facebook ads, to drugmakers and industry-funded groups pressuring Medicare to cover questionable blood tests.
Lenzer shares her tips for vetting industry funding, cross-referencing clinical data, and reporting on the organizations pushing for these tests.
This interview has been lightly edited for brevity and clarity.
What was the initial tip or observation that led you to look into the Alzheimer’s blood test industry? Was it the Facebook ad targeting people like Barbara Feuerstein, or something else?
After reporting on the new Alzheimer’s drugs, I was contacted by the boyfriend of Barbara Feuerstein regarding her experience after starting “preventive” treatment with one of the new drugs. During an interview, she told me about seeing an ad for a “free blood test.” That piqued my interest.
The Lever focuses on how money and power influence policy. At what point did you realize this wasn’t just a story about a questionable medical test, but a massive lobbying campaign involving high-level figures like Robert Redfield?
Redfield’s OpEds supporting the new blood tests read (for my eye) more like promotional material rather than cautious science, so I decided to see if he had any financial conflicts. I wasn’t surprised when I found that he received well over half a million dollars from device makers that manufacture the blood tests. From there, it was an easy jump to other promotions by doctors, organizations, researchers and politicians and finding industry largesse lubricating every wheel in the machine.
Can you walk us through how you cross-referenced the funding from drug/device companies with the ‘independent’ experts and legislators pushing for Medicare coverage?
OpenPayments is a site every journalist should know. That’s the main (but not only) method I use to check financial conflicts. Others include checking researchers’ disclosures in medical publications, during conferences, any patent ownership, etc.
Barbara Feuerstein’s experience adds an important human element to a very technical story. How did you find and vet patients who felt they were being ‘recruited’ into the Alzheimer’s market?
I first came across patients who had been harmed by the new drugs in the medical literature. After I wrote about them, patients and doctors started contacting me directly. I’ve had little luck using Reddit or “patient” websites – many, unbeknownst to the public, are run by industry.
How did you work with experts like George Perry or Adriane Fugh-Berman to translate complex clinical trial data into understandable figures?
I’ve had years of training in clinical trial design and critical appraisal, so I did the work and then vetted all my findings with a backup team of independent experts who are on The Lown List of Industry-Independent Health and Medicine Experts that Shannon Brownlee and I launched a decade ago and that is currently undergoing revision and will be available via my website.
The Alzheimer’s Association is a massive, trusted organization. What was it like reporting on their role in this campaign, and what kind of pushback (if any) did you receive when asking about their industry funding?
I’ve reported on the Alzheimer’s Association and other “patient” and professional organizations for many years and I’m quite familiar with how many of these groups have become mouthpieces for industry interests. I conduct verbatim prepublication quotation checks by email with every individual and organization cited in my articles. The Alzheimer’s Association pushed back on some points in my article, so I made some changes and refused others.
In response to angry denials by various sources, I’ve learned to do three key things:
- Identify and ignore ad hominem attacks;
- If the denials in response to my first prepublication quotation check don’t hold water, I send the source my final verbatim check in which I reassert my findings letting them know it is what I will write; and
- I acknowledge and/or apologize as warranted if I got something wrong and I provide a revised copy.
With the FDA clearing these tests for drug studies and Medicare being lobbied for coverage, did you face any transparency hurdles or ‘no comments’ from federal health officials? Has anything changed since Commissioner Makary resigned?
The FDA is virtually useless now in terms of transparency (It was terrible before the current administration, but it’s even worse now). Makary’s legacy is mixed. In some instances he did the right thing by turning down drugs that weren’t sufficiently supported by evidence, but he also made policy changes that do the opposite by lowering the scientific bar for approval across the board. See an update to my blog regarding doctors who joined the “Trump train,” for the destructive policies Makary put in motion:
For a story this complex, what were your ‘must-have’ tools (e.g., specific databases, FOIA trackers, or even just a particularly robust spreadsheet)?
I create a “fact sheet” on Word for every topic with links out to critical studies and sources. I use EndNote as a reference organizer and OneNote for a story organizer. I create excel databases to track financial conflicts of everyone I interview. I always confirm those findings with the source. I’ve had more than a few doctors deny they received any industry funding – but when I show them the hard evidence, they suddenly remember that they’d forgotten.
Why was it critical to publish this now, particularly with the ASAP Act and the July FDA advisory panel meeting on the horizon?
Endorsement of the new blood test and drug treatment of “pre-Alzheimer’s” by manufacturers, politicians, and industry-funded professional and patient organizations is premature and irresponsible. There are no completed trials showing the drugs are safe or that benefits exceed their known serious and deadly harms.
Unfortunately, the appeal to “prevention” is a surefire winner with the public who are unaware that quite a few “preventive” diagnostic tests had to be stopped or taken off the market after they were found to increase deaths and harms (such as ultrasound screening for thyroid cancer; urine screening of babies for neuroblastoma; and other tests.)
For more detail and actual numbers on the harms of routine screening tests see the Harding Center for Risk Literacy icon arrays on screening for breast and prostate cancer.
Jeanne Lenzer is an award-winning independent medical investigative journalist and author.
