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A participant in the clinical trial of the Alzheimer’s therapy aducanumab, sold under the brand name Aduhelm, on May 27, 2021, at Butler Hospital in Providence, R.I.
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Patricia Bencivenga and Judy Butler: Drug company tricks: Gaslighting the worried well into becoming the worried sick

The New York Times

Patricia Bencivenga and Judy Butler: Drug company tricks: Gaslighting the worried well into becoming the worried sick

While the recent hype for the new Alzheimer’s drug lecanemab is good news for manufacturers Eisai and Biogen, it doesn’t necessarily mean good news for Alzheimer’s patients. No study has been peer-reviewed; the celebration is based on clinical trial results from a news release.

No patient got better. The difference between treatment groups was based on rate of cognitive decline, and it’s unclear whether a statistical difference translates to meaningful benefits for patients or their families. Without the actual study data, due to be released in November, many questions remain.

Watch for a resurgence of messaging on how important early treatment is. For years, Biogen has been laying the groundwork to steer older patients — even those with no symptoms — to its Alzheimer’s drugs.

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Pharmaceutical companies have a history of making healthy people believe they are ill, but Biogen’s efforts to gaslight elders into thinking they have Alzheimer’s is particularly egregious. For example, it really doesn’t matter how you respond to the memory questionnaire at MyBrainGuide.org — anything you answer leads to a recommendation to visit your doctor for a cognitive workup.

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Biogen teamed up with UsAgainstAlzheimer’s, an advocacy group that they fund, to offer “tailored resources” if you take their online cognitive test. BrainGuide launched in March 2021 — just a few months prior to the FDA’s widely derided approval of Aduhelm (aducanumab), an ineffective drug with serious potential harms and the first of the anti-amyloid drugs for Alzheimer’s in Biogen’s pipeline. Within a year, more than 150,000 people had taken the questionnaire, conveniently offered in English and Spanish, either online or by phone.

The BrainGuide assessment, an adaptation of a 1999 Memory Impairment Screen from the Albert Einstein College of Medicine, gauges a person's ability to remember four words after a distracting task. If a person can’t remember all four words after completing the 20-question math and spelling section of the quiz, they are given information about Mild Cognitive Impairment (MCI) and advice about how to prepare for a conversation with their doctor. However, even those who remember all the words are told, “If you’re still concerned, you should consider seeing a doctor.”

This isn’t even the only disease-mongering test Biogen developed; the Symptoms Quiz on Biogen’s now defunct ItsTimeWeKnow.com was another unpassable test. What’s different about BrainGuide is that it’s on the website of UsAgainstAlzheimer’s, a group that consumers may mistakenly believe is objective.

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Using patient advocacy groups to deliver marketing messages is an effective tactic. BrainGuide offers dozens of resources for people who want to learn more about MCI and Alzheimer’s Disease. In these materials, cognitive deficits are almost always attributed to Alzheimer’s. Other possible causes, including normal aging, depression or hearing loss make rare appearances. Not to mention, MCI is only a risk factor for dementia — it often remains stable or even reverts to normal cognition.

Because Alzheimer’s is progressive, it seems logical that early detection would be desirable. BrainGuide visitors are reassured that they’ll get information to identify the early signs of Alzheimer’s. That way, they can “spot early symptoms of cognitive decline and take action.”

Unfortunately, there is no test that can accurately predict a diagnosis of Alzheimer’s, and websites like ItsTimeWeKnow and BrainGuide do more harm than good. Already, 2 in 5 adults aged 50-64 worry about developing dementia. A family history of Alzheimer’s is associated with a higher perceived threat of the disease, which was higher still for those with subjective memory complaints. Nonetheless, most people with a family history of Alzheimer’s won’t get the disease.

Anyone who finds BrainGuide through the UsAgainstAlzheimer’s website is concerned about the disease. Reinforcing distress by suggesting that even mild memory changes must be addressed medically will certainly drive healthy patients toward their doctor — and towards unnecessary and possibly dangerous prescriptions.

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Biogen practically admits this motive, asserting that “the platform can provide a sense of direction for people losing sleep over questions like, ‘Have I always been this absent-minded? Could this be something worse?’”

On a call discussing Biogen’s April 2021 earnings and plans for the launch of Aduhelm, Biogen’s first Alzheimer’s drug, the CEO stated: “We hope that BrainGuide … will enable people to seek care sooner in order to maximize the benefits of treatment.” And the chairman of UsAgainstAlzheimer’s calls the BrainGuide assessment a “trigger to talk to their doctor.”

Indeed, half of BrainGuide users are healthy, described by UsAgainstAlzheimer’s as “worried well.” Nevertheless, most BrainGuide users report feeling more prepared to discuss their brain health with a doctor.

Biogen has pulled the plug on Aduhelm, but its unbranded marketing campaign for its first Alzheimer’s drug will work just as well for lecanemab. With lecanemab positioned for accelerated approval in January 2023 (and the likelihood of full approval shortly thereafter), Biogen will have the only treatments for MCI associated with Alzheimer’s disease.

Since eligibility for Biogen’s anti-amyloid drugs hinges on the presence of amyloid-beta plaque in the brain plus a diagnosis of MCI, it’s no wonder that Biogen’s memory tests recommend, without fail, a doctor’s visit. Casting the widest net possible for patients will bycatch a lot of worried well.

And if they are not yet candidates for an Alzheimer’s drug, they will become candidates. Biogen’s marketing will cause the worried well to become the worried sick.

Patricia Bencivenga is the special projects coordinator at PharmedOut, a Georgetown University Medical Center project that fosters rational prescribing. Judy Butler is a research fellow at PharmedOut.

First Published: October 14, 2022, 4:00 a.m.

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A participant in the clinical trial of the Alzheimer’s therapy aducanumab, sold under the brand name Aduhelm, on May 27, 2021, at Butler Hospital in Providence, R.I.  (The New York Times)
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