Issue Date: July 21, 2014
Meryl Comer sat on stage at the BIO International Convention in San Diego last month between two prominent scientists: Francis S. Collins, director of the National Institutes of Health, and Jan M. Lundberg, head of R&D at Eli Lilly & Co. The three were on hand to discuss the Accelerating Medicines Partnership, or AMP, a new public-private drug discovery consortium. A former television news reporter who now heads the Geoffrey Beene Foundation Alzheimer’s Initiative, Comer leveraged her mastery of visual communication to solidly upstage her copanelists.
Comer, whose group is funded by a men’s clothing company that directs all of its profits to research and charity, has a flair for style and a knack for persuasion. On Capitol Hill in 2009, for example, she got Collins on stage with his guitar to perform with Joe Perry of the rock band Aerosmith as part of a program called “Rock Stars of Science,” an effort to elevate science in popular culture.
But there was nothing flashy about the short film that dominated the panel at BIO.
It began with Comer emptying her husband’s urine-drainage bag. It went on to show her shaving and dressing the man, Harvey R. Gralnick, former chief of hematology and oncology at NIH, who was diagnosed 20 years ago with early-onset Alzheimer’s disease. Now, at age 76, he is deeply lost to the disease and has long since forgotten the woman who cares for him at their home. The depiction of Comer’s morning routine illustrated the disease’s effect on a patient. Just as important, it conveyed the predicament of the caregiver.
Comer, whose 94-year-old mother has Alzheimer’s and also lives with her, says her group seeks to educate and mobilize the children of patients as advocates. The Alzheimer’s Initiative is also working to educate women, who are at higher risk than men for the disease, and to help researchers discover the cause of the gender disparity. And it is working with AMP, to which it has made a five-year funding commitment, to keep the research community in touch with patients.
The relationship between patient advocates and drug companies has hugely improved since ACT UP and Gay Men’s Health Crisis forced the industry to listen more closely to dying AIDS patients. But it still leaves much to be desired, according to Comer. “I think the bottleneck is the paternalism of the medical community,” she says, arguing that patient advocates today need to be no less confrontational than their forebears in AIDS advocacy. The objective is to win a “seat at the table.”
Comer contends that the Alzheimer’s Initiative has won a seat with its funding commitment to AMP. Still, she believes advocates are essentially tokens at such tables. They contribute strategic guidance regarding patients but are routinely marginalized by a research establishment with a myopic focus on science.
“Scientists are elitists. They don’t want to talk to us,” she says. “That said, the timelines of science are long, and the public doesn’t understand that.” Comer sees the disconnect as the nexus for engagement—the point at which the two sides can express their needs.
One thing the research community needs is patient data. Comer believes the digital revolution in health care will make more data accessible and force researchers to look up from the bench. The Geoffrey Beene Foundation has sponsored competitions for developers of self-administered mobile applications for brain health. Its Alzheimer’s Initiative, along with UsAgainstAlzheimer’s and other research and advocacy groups, recently launched the 21st Century BrainTrust, which supports the development of methods for monitoring cognition in healthy individuals.
“We were so frustrated that we could not get the baby boom generation that likes to pretend that 60 is the new 40 to have a conversation about Alzheimer’s,” says Comer about the launch of the BrainTrust. “We said, ‘Why not move it to a safe zone before the disease to create a virtual research ecosystem to track the brain. Predisease, no baggage.’ ”
But for many, the baggage is coming, Comer cautions. Government agencies are beginning to recognize the economic impact of aging populations, she says, and cognitive degeneration is an increasing concern among advocates for patients with other diseases. “For example, I am talking to AIDS groups,” she says. “People who have HIV/AIDS are now 50 years old, and they are beginning, because of the drugs they’ve taken, to get accelerated diseases of aging. So all of the sudden it’s on their radar screen.”
Comer’s Alzheimer’s Initiative, with a budget of $5 million, is a small organization. But she is determined to bring it to as big a stage as possible and by any means necessary. “I will do anything,” she says. “I will misbehave.”
Her book on her experience as a family member and caregiver, “Slow Dancing with a Stranger,” will be published by HarperCollins later this year.
As an advocate, Comer says, she is someone who will “flip the pain” to make as many people aware of the reality of the disease as possible. As for her husband, “This disease will win,” Comer says. “And it may take me down, too. That is the irony of the disease.”
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