Every 65 seconds, someone receives a new Alzheimer’s diagnosis, and by 2050, it’s estimated an American will be diagnosed with the disease every 33 seconds. Most people die within 4-8 years of being diagnosed with Alzheimer’s disease, though some live as long as 20 years. Recent data show that a timely diagnosis and lifestyle modifications may help slow the progression of the disease.
The effects of the disease are devastating, with patients often not recognizing loved ones or themselves, and being unable to perform everyday tasks. It’s degenerative, which means it deteriorates the brain over time, and there’s no known cure to reverse or stop its effects.
Taking back power
After spending a career working as a nurse and in other healthcare roles, Geri Taylor, 78, recognized that she was experiencing the early effects of Alzheimer’s a decade ago. Additionally, her dad had the disease, and she eventually found out her mother also carried the ApoE4 gene, making Geri 10-15 times more likely to develop Alzheimer’s disease.
Clinical trials help researchers and doctors know whether an investigational medicine works, if it works better in some people than others, and which dose of an investigational medicine will be safe for the people who take it.
In 2017, Taylor applied to participate in a clinical trial for an Alzheimer’s drug at Yale New Haven Hospital in Connecticut. In the screening for the study, she found she carried dual copies of the ApoE4 gene and had amyloid plaque buildup in her brain.
The discovery was bittersweet, because it meant she was in the early stages of developing Alzheimer’s disease, but it also qualified her for the study.
“There was no question about it — I had to get into a trial, which is all we’ve got for now,” Taylor said. “That way, I can try to make it better for myself and family, and other people down the road.”
For the 15-20 percent of people over age 65 who, like Geri, have mild cognitive impairment — an early sign of Alzheimer’s disease — clinical trials offer hope.
“One really significant thing I’ve noticed is the psychological benefit of being tested,” said Jim Taylor, Geri’s husband. “Bringing [Geri] home after she’s had her transfusions at Yale, sometimes I feel like I’m riding home with Madame Curie; she’s on a team, she’s at the bench with all the researchers, and she’s doing what she can to help. It’s tremendous.”
The clinical trial Geri is currently participating in needed 3,500 participants to proceed with its third phase. Geri and her husband Jim thought that benchmark would be achieved in a matter of weeks, given the amount of publicity the Phase II trial received.
“It took 36 months,” said Jim, 75.
Lack of participation in Alzheimer’s clinical trials is a serious problem for researchers trying to develop and test potentially life-changing treatments, and a lot of the hesitation stems from lack of awareness.
“One of the biggest issues, and why it takes so long to make a lot of strides, is that it’s challenging for us to encourage people to participate,” said Jessica Branning, CEO of ClinCloud Clinical Research. “Our hope is that we can educate people and show them how important it is that they participate, so that we can get medications out to everybody.”
Jim and Geri Taylor are doing their part to encourage more seniors to aid in Alzheimer’s research. Since Geri was diagnosed, they’ve spoken to over 10,000 people directly about the issue, and allowed a New York Times reporter to shadow them for a year, which resulted in a long-form piece and 12-page special section that ran in 2017.
“A lot of people just aren’t informed — if they knew about the solution or counter to their concerns, I think many more people would be in trials,” Jim said. “For instance, some people are concerned about expense.” Quite the contrary, clinical trial participants receive extensive care at no cost as part of the study.
Jim and Geri say they’ve met a lot of seniors who are interested in the benefits of receiving experimental treatments but are worried about the clinical trial process and feeling like guinea pigs in an experiment. But Geri says participating in clinical trials ranks among the most uplifting and encouraging experiences of her life. It is important to know that the trial expert will review all of the risks and benefits with you in person, so you can make an informed decision about participation.
“The people who are running the trials, they really want the treatment to work out, both for you and for everybody,” she said. “You feel like there’s a team that is helping you, even boosting you along. You even kind of get to know the other people participating in the trial, and it becomes a sort of community.”
Care no matter what
Some also say they’re worried about joining a trial and being placed in the placebo group, but that’s becoming less of a cause for concern.
“If you don’t participate in a research study, you’re 100 percent not going to receive any potential new treatment,” Branning said. “Whereas if you do participate, you have a 50 percent — or even higher — chance of receiving the treatment.”
Many Alzheimer’s trials are creating ways for all participants to receive care at some point, even if they’re in the control group. For instance, in the first trial Geri took part in, if it was revealed she was receiving a placebo treatment, she would still be entitled to one year of treatment with the trial drug after the yearlong study period concluded.
Learn more and see if there is a clinical trial for you today by visiting trials.lillytrialguide.com or calling 1-800-LillyRx (545-5979).