HIV / AIDS Trials: No Place for Black Women?
African-American women are routinely left out of clinical studies that could lead to new treatments.
Mitsuyasu and Tebas are part of a network of scientists investigating methods "that may be able to control HIV/AIDS with fewer or no medications at all," Mitsuyasu explains. While these trials include a small number of black men, there are no black women participating at Penn, UCLA or several other academic centers around the country.
Does It Matter?
At a time when prevention and treatment studies such as ISIS and VOICE (Vaginal and Oral Interventions to Control the Epidemic) have successfully recruited black women, should there be concern about the disconnect with more advanced research?
"Yes," says Dr. Donald J. Alcendor, an AIDS researcher at Meharry Medical College who recruits a very diverse group of women for his studies on the path of HIV infection. "These treatments will eventually reach large populations. In order for them to be effective, clinical trials have to include everyone."
Mitsuyasu agrees: "It's very important for us to do anything we can do to get people to participate in these trials."
A Bridge to Inclusion
To solve the problem, activists and physicians agree that players on all sides must come together.
"African Americans are not present in clinical trials in the way that they should be," says Njideka Obijiaku of the Black Treatment Advocates Network. "But it's hard to generalize about why we are absent. You have to help people work through their fears and the stigma."
"There is mistrust towards research institutions in our community," says Keith R. Green at the AIDS Foundation of Chicago. "Working with communities to build solid connections is key, but we also need to do a better job of connecting with academic institutions; otherwise these wonderful, new interventions will only create more disparities."
Outreach on the part of professional organizations is also an issue. "I do not think that the parties are aggressive enough in recruiting black women," says Dr. Kimberly Smith, chair of the Underrepresented Populations Committee for the HIV/AIDS Clinical Trials Group. "Even though it's much harder to get black women to participate in these very complicated studies because they are often afraid or have significant family obligations.
"We did a recent survey," Smith says, "and found that people of color are far less likely to be asked to participate in clinical studies, but this is [the medical community's] responsibility. And if we don't include women early in research, we may not identify treatment complications until further down the road."
The prescription for success, Dixon Diallo says, is for "women's groups to become more engaged, while institutions must be public about their projects and transparent." In other words, if a path is created for black women to take part in research for better treatments, they will follow.
For more information about HIV/AIDs clinical trials, click here.
Sheree Crute is a 2011 University of Southern California/Annenberg National Health Journalism fellow and journalist in Brooklyn, N.Y. This article is the third and last in a series about how the latest medical advances will affect health care disparities among African Americans.