How the ‘optimism’ narrative in Alzheimer’s helps the drug industry and harms patients

Kevin Lomangino is Managing Editor of HealthNewsReview.org. He tweets as @KLomangino.

When I think about what will be lost when HealthNewsReview.org closes its doors at the end of 2018, our emphasis on independent expert assessment of health care claims looms as one of the biggest deficits.

Conflicts of interest in healthcareWe’ve pointed out time and again how health care news can be tainted by the influence of industry and hidden conflicts of interest. We’ve explained how imbalanced, promotional stories can pollute the public discussion about health care and do harm to patients and the public.

An example of that harmful potential is on display in this post from the Association of Health Care Journalists (AHCJ) headlined, “Increased optimism about new Alzheimer’s drugs, tests.”

The post describes new multimillion-dollar donations to initiatives to develop drugs to treat the disease and tests to diagnose it earlier. Those investments are among several recent announcements stoking “renewed optimism” about prospects to reduce the disease’s terrible toll, according to the story.

Why so optimistic?

But the main source of optimism in this story is Howard Fillit, MD, whom AHCJ tells us is the founding executive director and chief science officer of the Alzheimer’s Disease Drug Discovery Foundation. What the story didn’t tell us is that Fillit personally has received thousands in fees directly from drugmakers in recent years, and that his foundation (which pays him at least $763,987 per year, according to the total compensation listed in 2016 tax documents) is supported financially by a number of pharmaceutical companies with Alzheimer’s drugs under development.

That’s important context for interpreting his claim that the experimental drug BAN2401 represents “more than a hope” for Alzheimer’s patients and their families. Describing recent phase 2 study results that were presented as an abstract at a conference, Fillit says: “The drug worked, so it did what it was supposed to do, remove the amyloid from the brains of patients.”

A more objective source might have pointed out that other drugs have also been shown to “work” for removing amyloid from patients’ brains — but none (including BAN2401) have so far been proven to prevent or slow the cognitive decline produced by Alzheimer’s disease.

An independent source also might have challenged his claim that the study “was pretty impressive” because the “the patients really improved, based on three different sets of screening instruments.”

In fact, the drug failed to achieve its primary goal of showing a clinical benefit after a year of treatment — a detail that doesn’t seem very impressive but wasn’t initially mentioned in the AHCJ post. In addition, the positive secondary outcomes highlighted by Fillit come with a host of asterisks, caveats, and questions that the story might have touched on but didn’t.

‘Alzheimer’s industry complex’

We explored these issues in a post that juxtaposed the ho-hum study results against the avalanche of ensuing news coverage. Susan Molchan, MD, a psychiatrist and former clinical researcher at the NIH, told us it’s an example of the “Alzheimer’s industry complex” in action and warned of the enormous incentives to make marginal drugs seem more beneficial than they really are.

“There are other amyloid drugs out there,” she cautioned. “Once one gets approved, it will make it easier for others.”

She’s also warned about the industry-supported push to promote earlier diagnosis of the disease via scans and blood tests — the approach championed by Fillit. Burdening relatively healthy and functional older adults with an earlier diagnosis may cause a number of harms including negative self-perception and the stigma of being labeled with Alzheimer’s, Molchan wrote.

There’s also the threat of over-medication and early institutionalization, as well as increased likelihood of prematurely stopping beneficial activities. Not to mention the fact that diagnosis is not an exact science, especially early on, and can result in false-positive or incorrect diagnosis. And how quickly dementia worsens varies from person to person, but we don’t really know why.

Setting the bar higher

AHCJ is one of the leading organizations dedicated to educating and training journalists to cover the ins and outs of health care. And when I reached out to Liz Seegert, an AHCJ editor who wrote the piece, she immediately acknowledged that Fillit had disclosed his industry relationships but that she hadn’t fully described them in the story.

“I think in hindsight I should have been more transparent about Fillet’s [sic] ties to pharma,” she said. “I think most people, myself included, sort of assume that pharma is investing in the ADDF, but we all know what they say about assumptions.” She said that she appreciated my feedback and that she knew that AHCJ could always do better.

After my email exchange with Seegert, the AHCJ piece was changed to include a note at the bottom with the following disclosure:

Note: In addition to his above-mentioned roles, Fillet [sic] currently or has previously served on the boards of, or consulted for several pharmaceutical, research and biotechnology companies. More information is available in this Bloomberg profile. Additionally, as we point out, the BAN-2041 trial achieved some success at highest doses after 18 months, but did not meet the study’s first goal of improvement at 12 months.  The linked articles above describe the “cautious optimism” of researchers in more detail. 

AHCJ’s commitment to updating its coverage is laudable and consistent with the principles of good journalism. But the fact that Fillit keeps getting portrayed by journalists as an independent source — and that similar glaring omissions continue to happen over and over and over again — suggests a fundamental systemic failure in our profession.

The current example is notable in that AHCJ is a journalism training organization and standard-setter in the industry. Although AHCJ’s statement of principles calls on journalists to “Investigate and report possible links between sources of information (studies or experts) and those (such as the manufacturers) who promote a new idea or therapy,” Seegert said the organization hasn’t put systems in place (for example, checking the Open Payments database) that would help ensure disclosure of industry relationships in its sources. We think it’s time for all journalists to make that commitment.

This isn’t about shaming experts who have industry relationships or journalists who may happen to quote them. It’s about challenging the incomplete, misleading narratives that these sources sometimes propagate, which can and have done harm at the patient and policy level.

Less optimism, more realism

Our society has invested decades and untold millions in a “magic bullet” approach to Alzheimer’s, a strategy that’s been nurtured and enabled by industry claims that a cure may be around the corner.

Meanwhile, advocates and caregivers in the community are becoming increasingly skeptical of the motives behind these claims and increasingly doubtful of the science that backs them. They’re calling for less emphasis on finding a cure and more investment in desperately needed support services for patients and caregivers who are suffering now.

Those voices don’t have the megaphone that a billion dollar industry can provide — all the more reason for journalists to work harder to find and include their perspective.

You might also like

Comments (3)

We Welcome Comments. But please note: We will delete comments left by anyone who doesn’t leave an actual first and last name and an actual email address.

We will delete comments that include personal attacks, unfounded allegations, unverified facts, product pitches, or profanity. We will also end any thread of repetitive comments. Comments should primarily discuss the quality (or lack thereof) in journalism or other media messages about health and medicine. This is not intended to be a forum for definitive discussions about medicine or science. Nor is it a forum to share your personal story about a disease or treatment -- your comment must relate to media messages about health care. If your comment doesn't adhere to these policies, we won't post it. Questions? Please see more on our comments policy.

K.E. Corcoran

August 27, 2018 at 3:17 pm

Close on the heels of reading this article, I received a notice from the Atlantic touting a 2.5 hour conversation in Chicago on September 12, 2018, entitled “The State of Care: Disrupting Alzheimer’s,” URL https://disruptingalzheimers.splashthat.com/ and Twitter #AtlanticStateofCare. Underwritten by https://www.phrma.org/, which does not lead one to believe that any incomplete, misleading narratives will truly be challenged…

Reply

Kathi Mestayer

September 4, 2018 at 11:57 am

I’ve become increasingly skeptical of anything that is described as “disruptive.”

Reply

Aleta Kerrick

September 4, 2018 at 11:01 pm

In addition to the badly needed supportive services, another area that could benefit from more funding is preventing dementia (and a host of other ills) by encouraging people to be physically active, eat healthfully, get enough sleep, and better-manage stress. Prevention is best of all.

Reply