Outreach to Black communities for Alzheimer’s research trying to change perception of modern trials – The Virginian-Pilot

Events from a small Alabama city in the 20th century cast a huge shadow that impacts African Americans’ health today.

Dr. Ethlyn Gibson hears the name as a common refrain when she discusses modern clinical trials with other Black residents in Hampton Roads.

Memories linger from the Tuskegee trials, in which white researchers injected syphilis into nearly 400 Black men in Alabama from the 1930s to the ‘70s to test what would happen if the virulent disease went untreated. It’s one of the main reasons Black Virginians with whom Gibson has spoken have hesitations about joining a medical trial.

But the safeguards that exist in modern trials are numerous, participation is voluntary, participants are given informed consent and the trials have review boards according to Gibson.

“None of those things were in place when the Tuskegee trials went on … None of them,” she said.

Still, Black Americans participate in medical trials at a lower rate. That can lead to African American communities’ hesitancy to use a medical product that has limited testing with Black participants.

This is why Gibson and other Hampton University researchers have formed a new partnership with researchers at Eastern Virginia Medical School and the Alzheimer’s Association to find volunteers for a treatment trial — and to try change the way clinical trials are perceived, according to Gibson.

They are using a “community based participatory research” model in which researchers and community health workers are directly engaging with the public and listening to a variety of community groups, including the Urban League of Hampton Roads, the NAACP and other Black civic organizations.

The local AHEAD study is part of the national effort to test a treatment meant to delay memory loss. It is led by the National Institutes of Health and Eisai Inc., a Baltimore-based health care company, and is conducting trials in nearly 75 localities across the U.S. and Canada, according to the study website.

Alzheimer’s is twice as likely to affect Black Americans, according to Gibson.

Those eligible for the study must be healthy adults between 55 and 80, not diagnosed with Alzheimer’s or another dementia, have elevated levels of a protein called amyloid that can lead to Alzheimer’s, and have a close friend or relative who also will participate in a study visit once a year.

Today’s Top Stories

Daily

Start your morning in-the-know with the day’s top stories.

Like any modern clinical trial, safety is a priority for participants. In the case of AHEAD, there will be body scans, IV infusions and memory tests over the four year study period and participants will be paid $50 per visit.

To find eligible people who may be interested, the first step is education about modern medical trials to dispel inaccurate perceptions, Gibson said. The health workers also help guide the researchers on how to best educate the community about modern clinical trials, such as a visit to the Community Day at Lafayette Elderly Apartments in Williamsburg on Aug. 27.

“We are trying to find people so that we can stop the tide of dementia,” Gibson said.

The education component is also key because even if one is not eligible to participate in the AHEAD study, they could be eligible for another trial where they may be sorely needed. There are other illnesses from which Black people suffer disproportionately and where treatments have limited tests on African Americans because of low rate of participation in studies, she said, such as heart disease.

“There are so many more clinical trials where we need communities of color to participate,” Gibson said.

Ian Munro, ian.munro@virginiamedia.com, @iamIanMunro