Black Volunteers Sought for Alzheimer’s Drug Study at OHSU

Black Americans suffer from Alzheimer’s disease at twice the rate of their white counterparts. While a newly approved drug offers hope for slowing the devastating effects of the disease, Oregon Health & Science University is looking for a diverse group of volunteers to participate in a nationwide clinical trial to determine whether that drug may prove even more effective at preventing Alzheimer’s.

Charles Fennell of OHSU's Layton Aging and Alzheimer's Disease Center“A lot of this research, a lot of these approaches to Alzheimer’s disease, is looking to manage the disease as it exists,” Charles Fennell, community outreach specialist and research assistant at OHSU’s Layton Aging and Alzheimer's Disease Center, told The Skanner. “But what if we could identify the catalyst of the disease and stop it before it creates all this inflammation and all the cell death that we associate with Alzheimer’s?”

There is no known cure for Alzheimer’s, a progressive disorder that often first presents as memory loss and then dementia. The more than six million Americans currently diagnosed with the disease suffer a decline in cognitive abilities, often losing the ability to speak, recognize loved ones and advocate for their needs.

In studies, the recently approved Lecanemab slowed cognitive decline in early Alzheimer’s patients by 27% on average. Because evidence of the disease can be present in the body as much as 20 years before any symptoms develop, researchers are eager to try Lecanemab as an early intervention for those who are likely to develop Alzheimer’s.

“Being in the Pacific Northwest, I’d liken it to a forest fire,” Fennell said.

“If we can identify the spark of a forest fire before the entire forest is set aflame, we can stop the fire. That’s the same line of logic Lecanemab is taking with Alzheimer’s.”

Getting Ahead Of Alzheimer’s?

The AHEAD study, funded by the National Institutes of Health and pharmaceutical company Eisai, is a four-year clinical trial currently seeking volunteers aged 55 to 80 who do not have Alzheimer’s disease, but who may be at higher risk of developing it due to factors like family history.

Participants are paid for their involvement, and receive regular infusions of Lecanemab, which targets a specific protein fragment, amyloid beta, which creates amyloid plaque – what researchers suspect leads to the onset of Alzheimer’s. Lecanemab is an anti-amyloid antibody that has been shown to clear away plaque in early cases of Alzheimer’s.

Fennell emphasized the benefits of participating in the AHEAD study.

“In the beginning, it’s more classic cognitive assessments: pen and paper, working with our neuropsychologist,” he said. “And there’s an assessment of family history, a blood draw, to see if we can gauge the level of this protein that might be in the brain. Then things get to the point of getting a PET scan. A big obstacle to learning definitively whether or not you have this amyloid in the brain is that a lot of medicaid and insurance won’t cover the PET scan. For people who might not have the means to pay $4,000 for a PET scan, this is a way to get one for free.”

Once chosen for the study, participants can expect their experience to be somewhat tailored to their needs.

“If we do see that you have an elevated amount of these levels (of amyloid protein), then we’ll include you for four years,” Fennell said. “Doses are tailored and the involvement is on a specific, case-by-case basis on what the individual might need.”

An Undue Burden

Fennell warned that according to current projections -- and without proper intervention -- by 2050, half of all Black Americans above the age of 85 will likely experience Alzheimer's.

“There’s nothing inherent about being Black that puts you at a higher risk of Alzheimer’s as far as we know,” Fennell said.

“But we do know that if you’re Black, there are social determinants of health – your access to healthcare, your access to nutrition, your access to these mitigating behaviors that we believe will put you at a lower risk of Alzheimer’s, are lowered. Often we say that your zip code is almost as important as your genetic code determining what chronic illness you might contract throughout your life.”

Another factor detrimental to the health of BIPOC Americans? Racism. Recent studies suggest the trauma of experiencing racial discrimination and navigating systemic racism lead to higher rates of depression, anxiety, post-traumatic stress disorder and dementia.

“The chronic diseases Black people are more likely to have – diabetes, hypertension, high blood pressure – all of these chronic diseases amalgamate and put you at a higher risk of Alzheimer’s,” Fennell said.

Still, recruiting a demographically representative group of volunteers has proven challenging.

“When you’re a Black person and you’re talking about research, in my experience, Tuskegee is often the first thing that comes to mind for a lot of people,” Fennell said, referring to the notorious 40-year study of the effects of syphilis on Black men who were led to believe they were being treated for the condition when in fact researchers withheld treatment in order to watch how the disease progressed.

“Ethics and standards have been developed so we can’t repeat tragedies like Tuskegee,” Fennell said. “People have to know exactly what they're getting involved in, it must be informed consent.

"They have the right to discontinue their involvement at any time.”

Fennell provided a more optimistic historical context.

“Black people have been involved in Alzheimer’s since the very beginning,” he said. “The person who helped Dr. Alois Alzheimer identify the disease was a Black man by the name of Solomon Carter Fuller. He was with Dr. Alzheimer, right there in the room, when the disease was discovered in 1906. We’ve been a part of this research, a part of this disease, since its inception, so why not be a part of its conclusion?”

For more information about the study, and to apply to be a volunteer, visit www.aheadstudy.org.