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.

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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.

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"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. 

"We have good medicines, but the problem is, we are saying, 'You have to take these drugs for the rest of your life,' " says Dr. Pablo Tebas of the Penn Center for AIDS Research at the University of Pennsylvania. "Also, a growing number of states — Florida, North Carolina, Georgia — have waiting lists for drug coverage."

In Houston, Joseph cannot get her HIV/AIDS medications covered at all. "I earn $60,000 a year. In Texas that's too much money to get my drugs covered," Joseph says. In most states, the financial cutoff is below $40,000. 

In the search for new treatments that would reduce the need for medication, scientists are exploring gene-based therapies "to determine if, by altering one of the co-receptors on a cell, we can make the cell resistant to the virus in people who are already infected," explains Dr. Ronald Mitsuyasu, associate director of the University of California at Los Angeles AIDS Institute. "Gene therapy is not a cure, but it would keep new cells in the body from becoming infected, eventually reducing the viral load [the amount of HIV virus in the blood] perhaps to zero, if the host has enough protected cells."

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Initially, the therapy would be expensive (hundreds of thousands per patient), but it could eventually add up to significant cost savings for the health care system and the patient if people are able to dramatically reduce the amount of daily HIV/AIDS medication they take or eliminate it altogether.

In Tebas' gene study, he successfully treated a patient "using a protein called zinc finger nuclease to alter CCR5 [one of the receptors that allows HIV to infect a cell]." The patient's viral load dropped dramatically during a 12-week period when he went off his anti-viral medications — an amazing result. But the treatment did not work as well for other patients, a critical fact that underlines the need for research to include everyone because the CCR5 gene has different characteristics in African Americans and women

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?

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"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.

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"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.

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"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.