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General cultural differences and a distrust of white clinicians have prevented African-Americans infected with HIV from benefiting from advances in HIV treatments and prevention campaigns aimed at stopping the spread of the disease.
Health officials have recognized this problem and are calling for special HIV prevention and treatment programs aimed at people of color. Experts on HIV among minorities say these groups finally are receiving the national and local attention they need.
"We’re seeing that while the epidemic appears to be somewhat leveling off in the white population, that’s not the case for African-Americans," says Miguelina Maldonado, MSW, director of government relations and policy at the National Minority AIDS Council in Washington, DC.
"African-Americans are the most severely impacted group among communities of color," she adds. "They represent a very disproportionate part of the HIV epidemic in the United States, and African-American women have an even greater disproportionate share of AIDS cases among women."
The big problem is a lack of trust among African-Americans for the U.S. health care system and more specifically for white clinicians, says Stephen Thomas, PhD, director of the Institute for Minority Health Research at the Rollins School of Public Health at Emory University in Atlanta.
In response, the federal government has shifted focus to target American blacks through widely publicized federal grants to pay for research and prevention programs involving HIV infection in the African-American community. Also, a recent spate of publicity about the problem has prompted black leaders and clergy to push for greater prevention efforts in their communities.
For example, in Philadelphia, the city government has joined with Princeton, NJ-based Bristol-Myers Squibb Co., and a variety of local organizations, including The Black Clergy of Philadelphia and Vicinity, to form a partnership called Project New Covenant, which is designed to raise awareness of HIV/AIDS and to promote HIV prevention, education, testing, and treatment in the African-American community. The educational activities are coordinated through Philadelphia’s 400 black churches.
HIV cases, AIDS deaths higher among blacks
Meanwhile, HIV infection is devastating the African-American community, according to national surveys and statistics collected by the Centers for Disease Control and Prevention (CDC) in Atlanta:
• Since 1996, the number of AIDS cases and AIDS deaths among African-Americans has surpassed that of white Americans.
• More African-Americans ages 25-44 die from AIDS than any other single cause.
• Also, 58% of all AIDS cases reported in children involve African-American children.
• While only 12% of the nation’s population is black, 45% of new AIDS cases involve African-Americans.
• About 56% of all AIDS cases and 60% of new AIDS cases among women involve African-Americans.
• Young black adults have higher incidences of HIV infection than do their white counterparts. A survey conducted by Kaiser Family Foundation in Menlo Park, CA, found that 35% of HIV cases among males ages 20-24 were among African-Americans, and 55% of women with HIV in the same age group were African-Americans.
• From 1996 to 1997, white Americans with AIDS experienced a 25% decline in cases, marking the success of protease inhibitors and combination therapies. During the same period, black Americans had only a 7% decline in the number of AIDS cases. (See AIDS cases chart, p. 111.)
These statistics are a jarring reminder that despite the astonishing advances in HIV treatment and more than a decade of ubiquitous prevention campaigns, the gains have not been shared by all.
"The real victories of the first decade of this epidemic clearly demonstrate that HIV infection can be prevented, and people living with HIV disease can live quality, full productive lives," Thomas says.
"But the very things that work in addressing this epidemic in the gay white community are not working for African-Americans," Thomas adds. "The disproportionate impact of AIDS in the black community has been here since 1981; it’s just grown as the epidemic has moved forward."
Distrust among African-Americans for the U.S. health care system is rooted in memories of unethical experiments committed on African-Americans who have participated in previous health care studies, including the notorious Tuskegee Syphilis Study from 1932 to 1972, he explains.
For 40 years, 400 black men with syphilis who were residents of Macon County, AL, were studied without being treated, although some treatment was available at the beginning and a cure, penicillin, became widely available in the 1950s. U.S. Public Health Service officials, who conducted the experiment, promised the men free treatment when the true purpose of the study was to compile data on the effects of syphilis in black males. The project continued until the truth of the experiment was reported in the press in 1972.
"The legacy of that atrocity has been passed on in the black community from grandmother to grandchild, and it’s part of the folk wisdom," Thomas says. "It was on May 16, 1997, that President Bill Clinton apologized to the remaining eight men survivors, who were all in their 90s or older, on behalf of the U.S. government for what the U.S. Public Health Service did."
Medical abuses date back to slavery days
The Tuskegee study was only the last in an unpleasant history of such callous activities. For example, in the mid-1800s, physician James Marion Sims, who is considered the father of gynecology, conducted gynecological surgery research on sedated slave women, often addicting them to narcotics, says Tara Clark, an educator with the Southern Tier AIDS Program in Johnston City, NY.
"African-Americans may not know the exact names, but they’re very aware of their use as experimental subjects unwillingly during slavery, as well as Tuskegee, which was supported by the U.S. government," Clark says. "So for an African-American person to understand this history and not seek out health care is understandable."
Even as recently as the 1960s, public health organizations conducted medical experiments on black patients without obtaining their consent. For instance, in 1963, the U.S. Public Health Serv ice, the American Cancer Society, and the Jewish Chronic Disease Hospital of Brooklyn, NY, were part of an experiment that consisted of injecting live cancer cells into 22 ill African-American patients.1
Thomas says cultural ignorance keeps white physicians and other clinicians from recognizing the impact of that dark period in medical history. "Our own published research very clearly shows that the legacy still is operating today, as we speak, and not only in AIDS treatment, but in infant mortality, cardiac disease, and a whole range of problems related to people not accessing the health care delivery system," he says. (See article on blacks having less access to HIV treatment, p. 115.)
Complicating the trust problem is a wide spread urban myth that HIV was created by U.S. public health officials as a means to harm black people.
Clark says when she has worked with HIV-infected African-Americans, she has discovered that many refuse to believe that HIV began in Africa. "They think it started in a test tube in a laboratory, and that it’s a mechanism to perpetuate and create bias and issues of prejudice because then people can say, AIDS came from you people,’" she explains.
This lack of trust has had dire consequences as public health officials try to stop the spread of HIV, only to see it gain ground in African-American communities.
Public health officials, clinicians, and others who work with HIV-infected patients are scrambling to find ways to reach HIV-infected African-Americans and at-risk groups within the community. (See story on how clinicians can better treat black HIV patients, p. 112.)
First steps are to hold more conferences and meetings that address HIV infection in the African-American community and to begin research projects that address HIV prevention and treatment in black communities.
Minority AIDS group offers possible solutions
Also, the National Minority AIDS Council makes these recommendations for addressing the problem of HIV among blacks:
• President Clinton should declare a "State of Emergency" in HIV and AIDS among African-Americans.
• Federal funds should be directed to follow the epidemiological trends in the HIV epidemic.
• The federal government should fund a large-scale, culturally appropriate, public information and education campaign targeted to African-Americans at risk for HIV.
• The CDC should provide funding for sustained HIV prevention interventions for African-Americans.
• The CDC should fund a national initiative to reduce HIV infection among gay African-American men.
• The federal government should increase funding to develop and expand initiatives that train African-American and other minority health professionals in state-of-the-art HIV diagnosis, treatment, and care.
• The federal government should provide direct funding to African-American community-based organizations to conduct education and outreach programs to increase the enrollment of eligible African-Americans in AIDS Drug Assistance Programs.
1. Randall VR. Slavery, segregation, and racism: Trusting the healthcare system ain’t always easy! An African-American perspective on bioethics. World Wide Web: www.udayton.edu/~health/slavery.htm. 1997.