No group is more affected by HIV than African-Americans, yet blacks and Hispanics are poorly represented in HIV and AIDS medical studies. While blacks make up almost half of Americans living with HIV and AIDS, they represent only 30 percent of volunteers in clinical studies.
Work published recently in the journal AIDS and Behavior showed that the problem is not a lack of interest.
Lead author Marya Gwadz, Ph.D., and her colleagues at New York University's College of Nursing studied 540 adults from minority groups who were HIV positive. Some were given counseling by peers who had also tried to enroll in clinical trials. The counselors offered information about medical research and the enrollment process.
Nine out of 10 of the patients who received counseling from their peers chose to enroll in studies. No one in the control group, who did not receive counseling, decided to enroll.
“It just opens the door and helps build trust when a peer lets you know, ‘These people are fine, they’re not going to pressure you, you can go check it out,” Gwadz told Healthline. The intervention program her team developed is called ACT2.
Rethinking What's Possible
ACT2 uses a motivational interviewing approach. It allows people to talk about why they might consider enrolling in a trial, as well as their fears about the process.
Enrolling in a clinical trial isn’t convenient, even for a person with a lot of time and resources, such as dependable transportation. The strain it puts on minority volunteers can be overwhelming.
Consent forms for trials are often 20 to 30 pages long. Enrollment can mean traveling to multiple screening locations. Immigrants are asked whether they have documented citizenship.
Gina Brown, a member of Positive Women’s Network USA’s board of directors, is a newly appointed member of the Presidential Advisory Council on HIV/AIDS. The New Orleans woman has been HIV-positive for 20 years. She works as a case manager for the Ryan White-funded program.
“I got my start as a peer advocate, way back in 2002,” Brown told Healthline. “We could get information from clients that the case manager couldn’t always get. We always were the first to know when someone was pregnant or in an abusive relationship.”
Women Turned Off by Enrollment Hassles
Brown said black women tend not to participate in clinical trials because there are so many requirements, such as being on two forms of birth control. Trials often are conducted during the day, while mothers are working and their children are at school.
“When you sign up for that study you have to be committed to that study,” Brown said.
Brown is a member of the Women’s Research Initiative on HIV/AIDS. At its meeting last year, the group highlighted the role that violence and trauma plays in keeping women from getting access to medical care. It is important for women to work through past trauma, and one way to do that is with peer support.
ACT2 began with just a handful of people interested in enrolling in clinical trials. They were taught to educate three of their peers on 10 core messages about the trials. Through word of mouth, ACT2 ballooned and is still getting people enrolled.
Brown said she is not surprised to learn that ACT2 works. “If we can explain it as a peer in simple terms, it makes a big difference,” she said.
Gwadz said that once trial subjects understand the importance of their contribution, they want to do it again and again. She said agencies could implement ACT2 by adding a social worker or even integrating it into their current team. Ryan White money could fund such work, she said.
“It just takes someone wanting to do it,” Gwadz said. “Everyone completely agrees this is important, but people are wary to change.”