HIV / AIDS Trials: No Place for Black Women?

African-American women are routinely left out of clinical studies that could lead to new treatments.

Barbara Joseph

Medical breakthroughs in curing sickle-cell anemia and treating prostate cancer and HIV/AIDS may dramatically improve life for the millions of people struggling with these diseases, but there are significant barriers that may keep African Americans from receiving this new, high-quality care. This article is the third and last in a series about how health care costs, policies and even the structure of the health care system may increase, rather than decrease, the health disparities we face. To read other articles in the series, click here.

Barbara Joseph is smart and resourceful and has advocated so successfully for African-American women living with HIV/AIDS in Texas that a clinic in Houston bears her name. That's why it's all the more surprising that Joseph faces barriers to obtaining treatment and participating in a clinical trial -- an act that might improve her health and teach scientists more about black women and HIV/AIDS.

An HIV/AIDS activist for 20 years, who has been living with the disease just as long, Joseph is also executive director of Positive Efforts, an organization that provides information on HIV/AIDS prevention and treatment for black women. Yet when asked if her organization had been approached about getting black women into clinical trials investigating cutting-edge HIV/AIDS treatments, Joseph said no. According to the nation's leading advocates for black women living with the disease, there's nothing unusual about that.

"Part of the argument for not making a greater effort to include women in research, until now, has been that prevalence rates among women were too low to justify a large focus on them," says Dázon Dixon Diallo, founder and director of Sister Love in Atlanta, one of the oldest and largest organizations for women living with HIV/AIDS.

"But we now have the research to prove that we need to be included," Dixon Diallo adds. She is referring to ISIS (Women's HIV Seroincidence Study), released on March 8. ISIS researchers found that the rate of HIV/AIDS infection among black women living in Baltimore; Atlanta; Raleigh-Durham, N.C.; Washington, D.C.; Newark, N.J.; and New York City was five times higher than the rate previously reported by the Centers for Disease Control and Prevention.

"Part of the problem," Dixon Diallo says, "is also that the AIDS community is still a male-dominated culture. That's one reason we formed 30 for 30, a coalition of women's organizations working to ensure that at least 30 percent of the resources spent on HIIV/AIDS in the United States are spent on women -- as we represent nearly 30 percent of the epidemic. But in terms of getting women into advanced research at elite academic institutions, we know a lot less about these small, early trials. That should say something about the process."

Joseph says black women also aren't being considered for new studies exploring the use of personalized medicine, through gene therapy, which makes it possible for the body to fight HIV/AIDS without antiviral drugs. This research is funded -- at least in part -- by federal dollars. 

"I am also a co-chair of the National Black Women's HIV/AIDS Network. We educate women about research, but no one has reached out to the network to invite black women to participate in these trials," Joseph says.

Seeking a Breakthrough

While current antiviral medications represent a great leap forward in HIV/AIDS treatment and have dramatically lengthened the lifespan for many, the much-touted single pill therapy is expensive -- "nearly $3,000 a month, in my case," Joseph says. Drug side effects may include heart disease, kidney disease and osteoporosis, especially as people age with HIV/AIDS. And while some states -- such as Illinois -- have solid safety nets for people needing HIV/AIDS medication, others do not.