For over 20 years, acclaimed broadcast journalist Meryl Comer has cared for her husband and mother who both have Alzheimer’s disease. As an advocate for people with dementia and their caregivers, she’s trying to get more people who, like herself, do not yet have cognitive impairment to participate in clinical trials.
Two decades ago, Meryl Comer was a broadcast journalist at the top of her game, and her husband, Dr. Harvey Gralnick, was the chief of hematology/oncology for the National Institutes of Health.
Things changed when, at 58, Gralnick was diagnosed with early-onset Alzheimer’s. Comer saw no choice but to leave her career to care for him and eventually her mother, who was later diagnosed with the disease.
“It was the only option available for me to manage a highly charged and challenging situation,” said Comer, a co-founder of UsAgainstAlzheimer’s, WomenAgainstAlzheimer’s, and former president and CEO of the Geoffrey Beene Foundation Alzheimer’s Initiative.
Over the past 24 years, Comer has become a leading advocate for those with Alzheimer’s and the loved ones caring for them. In 2015, she chronicled her experiences as a wake-up call on what it’s like to live inside the disease in the New York Times Bestseller “Slow Dancing With a Stranger: Lost and Found in the Age of Alzheimer’s,” and she’s donated all of the book’s proceeds to Alzheimer’s research.
“We can’t ignore the fact that women are differently and differentially impacted by dementia as two-thirds of the victims and two-thirds of the caregivers,” Comer said. “My generation is focused on redefining what aging looks like when we should all be hell bent on doing what it takes to improve the odds that our brainspan matches our lifespan.”
Comer is aiding Alzheimer’s research in a major way. While she doesn’t have Alzheimer’s disease, she’s prepared to participate in clinical trials, and is encouraging other healthy and cognitively unimpaired people to do the same.
Studying Alzheimer’s
About 6 million Americans have Alzheimer’s disease, and it’s currently the sixth leading cause of death in the United States, though recent estimates suggest it may actually rank third, behind only heart disease and cancer, according to the National Institute on Aging. Scientists are also exploring the very earliest steps in the disease process by studying changes in the brain and body fluids that can be detected years before Alzheimer’s symptoms appear.
That means clinical trials are critical, and not just for people who already have Alzheimer’s and are looking to try experimental treatments, but also for people who are at-risk, cognitively normal, and/or asymptomatic, as their participation can pave the way to prevention and treatment.
Unfortunately, participation in Alzheimer’s clinical trials is lagging behind, especially for healthy and asymptomatic people. Comer is driven to help the 90 percent of adults — according to a new UsA2 A-List survey of the wider Alzheimer’s and dementia community — who believe in early diagnosis to participate in clinical trials.
“It’s time to get with it,” Comer said. “In addition to improving our own odds of reducing cognitive decline, we can help advance what science knows so there are future therapies available for our adult children and grandchildren. It’s a mindful legacy we owe the next generation.”
Decentralized trials
Over the course of the COVID-19 pandemic, telemedicine became a mainstay for healthcare delivery, and clinical trials are now adopting these same technologies.
Telehealth technology will allow trials to be decentralized, meaning geography will no longer be a barrier to participation. Participants in decentralized Alzheimer’s trials will be able to take cognitive tests and check in with their study team without having to leave their homes, and visits to clinical trial sites will be minimized.
The hope is these decentralized studies will increase access to and participation in clinical trials, especially for cognitively unimpaired people and traditionally underrepresented populations.
“Decentralized studies for Alzheimer’s disease mean that minorities can access these opportunities at their comfort level, in their first language, within their own communities and with trusted healthcare providers,” said Dr. Sheila Baez-Torres, M.D., M.B.A., the principal investigator for K2 Medical Research, LLC in Orlando, Florida. “I firmly believe decentralizing studies for AD will not only increase their participation, but it can benefit all of us by ensuring equity in research and improving and advancing our health knowledge overall.”
If you’re interested in joining a decentralized Alzheimer’s trial for asymptomatic individuals, or would like to learn more, visit lillymemorytrials.com or call 1-800-LillyRx (545-5979).