Surgeon General Vivek Murthy issued a timely and thought-provoking advisory about the serious threat to public health posed by misinformation about the Covid-19 pandemic on July 15. Just two days later, the New York Times chose to run a disconcerting ad on its pages about yet another global public health challenge: Alzheimer’s disease. The ad contains precisely the elements of “false, inaccurate, or misleading” information the surgeon general warns about.
“When Memory Fades” is a slick paid post that narrates the story of Jane, a 76-year-old woman who has been diagnosed with mild cognitive impairment (MCI) due to Alzheimer’s disease. The post was paid for by Biogen and created by the New York Times’ “brand marketing arm.” It urges readers to follow Jane’s example in overcoming the stigma associated with cognitive decline and fear of a diagnosis of Alzheimer’s. It draws a contrast between patients with memory problems who might be reluctant to seek medical advice and those with heart disease who are more “inclined to see a doctor before a heart attack strikes.”
Displayed prominently in this paid post is the rather emphatic claim that “About 1 in 12 Americans over 50 has MCI due to Alzheimer’s.” It does not cite the source of this statistic, which is patently false. According to the 2021 “Alzheimer’s Disease Facts and Figures” report, published by the Alzheimer’s Association in its own journal, “The number and proportion of older adults who have MCI due to Alzheimer’s disease is currently difficult to estimate because it requires population-based prevalence measures of MCI and Alzheimer’s biomarkers, and these studies are in their infancies.”
It is possible, however, to derive indirect estimates from relatively small studies that included patients with mild cognitive impairment and biomarkers of Alzheimer’s. Using this approach, the Alzheimer’s Association states that “roughly 8% of people age 65 and older — or approximately 5 million older Americans — may have MCI due to Alzheimer’s disease.” But it cautions that this prevalence estimate “needs to be confirmed with population-based studies involving biomarkers.”
It appears that the “roughly 8%” prevalence of mild cognitive impairment due to Alzheimer’s in people “age 65 and older” has been appropriated in Biogen’s misleading claim, conferring this risk upon a substantially younger population.
The Biogen ad concludes with advice that Jane and her husband, Jim, have for those among us with “undiagnosed MCI”: “get out in front of it by talking to your doctor.”
While it is not entirely clear how someone could identify those with “undiagnosed MCI,” the link at the end of the ad offers additional clues. It lands on a webpage hosted by Biogen and its partner, Eisai, with the URL itstimeweknow.com. It purports to provide further information about mild cognitive impairment due to Alzheimer’s disease. There is also a companion Facebook page with the same name that asserts that “more than nine million Americans are living with MCI due to Alzheimer’s disease,” nearly doubling the Alzheimer’s Association’s estimates.
The itstimeweknow website ominously warns that “Alzheimer’s can begin up to 20 years before symptoms show up” and again quotes the misleading figure that “About 1 in 12 Americans 50 years and older have the earliest clinical stage of Alzheimer’s, MCI — that’s the stage when symptoms become noticeable.” The website also offers a multiple-choice “symptoms quiz” that allows users to report how often they experience symptoms such as forgetting appointments, losing their train of thought, or struggling to find the right word during a conversation. Responses to the six questions are then displayed and guidance is offered, presumably based on the severity of symptoms.
One can take the quiz multiple times. I took it twice — first choosing the “often” option for all questions and then the “never” option. To my consternation, the advice for both scenarios was to ask my doctor if “cognitive screening may be right for you.”
The website also allows one to find the nearest Alzheimer’s specialist such as a “neurologist or geriatrician” if they or a loved one is concerned about mild cognitive impairment due to Alzheimer’s. Yet among the choice of “specialist” centers, I was offered a rheumatology clinic that boasts a decade of experience in the management of “rheumatologic, autoimmune, bone, and joint conditions” as well as specializing in infusion services — administering drugs by infusion through a vein, as is required for Biogen’s new Alzheimer’s drug, Aduhelm.
Also on the itstimeweknow website, one can choose to find the nearest center offering a lumbar puncture to measure the level of a protein called amyloid that is somehow involved in Alzheimer’s disease in spinal fluid or a PET scan facility to measure its level in the brain. Both tests are helpful in confirming “amyloid positivity” — high levels of amyloid, the protein that Aduhelm lowers. It is this lowering of brain amyloid, rather than a clear slowing of memory decline in people with Alzheimer’s, that was the basis for Aduhelm’s approval by the FDA.
As a neurologist, I have performed lumbar punctures on many patients, and I have yet to come across one who came to me requesting this procedure of their own accord.
Mild cognitive impairment is not easy to diagnose. Expert physicians often find it challenging and frequently rely upon detailed cognitive assessments to help them. Patients with mild cognitive impairment also vary substantially in terms of their future clinical outcomes.
While patients with mild cognitive impairment are at higher risk of worsening symptoms leading to a subsequent diagnosis of dementia, a considerable proportion remain stable without progression of symptoms for years, and some even revert to normal cognitive function. For instance, I have cared for several patients with a diagnosis of mild cognitive impairment who had obstructive sleep apnea — a condition that is eminently treatable with airway pressure during sleep. Many of them experienced a dramatic reversal of their cognitive problems with effective treatment of their sleep apnea.
What is the current recommendation regarding cognitive screening in older individuals? In 2020, the U.S. Preventive Services Task Force decided that there is no evidence to recommend for or against cognitive screening in individuals 65 years or older.
“When Memory Fades” is a well-planned, direct-to-consumer marketing campaign that seeks to greatly expand the target population of people that are candidates for Aduhelm, a drug that has yet to demonstrate a clear clinical benefit in patients with mild cognitive impairment or Alzheimer’s disease.
The approval of Aduhelm on the basis of its effect on a surrogate endpoint — lowering the level of brain amyloid — rather than on a clear improvement in memory or cognition is likely to further incentivize marketing strategies targeting people with mild symptoms and no impairment in daily functioning to be tested for elevated levels of brain amyloid. With 25% to 40% of people between the ages of 50 and 65 years showing brain amyloid positivity, these individuals are especially vulnerable to predatory advertising that will motivate them to seek an amyloid-lowering medication like Aduhelm — at a cost of $56,000 a year — and stay on it in the false hope that it may prevent Alzheimer’s disease.
I worry about unchecked advertising like the “When Memory Fades” campaign. Clinicians like me need to mount a conscientious and concerted effort to push back against this misinformation and educate our patients. We must ensure that their desperation is not monetized, and their hopes are not held hostage to profit.
As the surgeon general eloquently put it, “Limiting the spread of health misinformation is a moral and civic imperative that will require a whole-of-society effort.”
Madhav Thambisetty is an adjunct professor of neurology at Johns Hopkins University School of Medicine. The views expressed here are his alone and do not necessarily reflect those of Johns Hopkins University School of Medicine.