Minorities miss out on AIDS survival increase
Minorities miss out on AIDS survival increase
Campaign pushes education for patients, providers
Recent AIDS data have confirmed what many health officials already know: Communities of color are not benefiting from treatment advances to the same degree as white Americans. And that won’t change until these communities become more educated about the disease and their access to care is expanded, said former U.S. Surgeon General Joycelyn Elders, MD, at a recent press conference.
"Our message is to encourage people to get all the information they can about HIV because there is hope now," says Elders, professor of pediatric endocrinology at the University of Arkansas Medical School in Little Rock. "We cannot let our people die for lack of knowledge."
While last year’s first-time decline in AIDS deaths was good news, it was not shared by all groups of Americans, she says. From January to June 1996, death rates from AIDS declined 13% overall compared to the same period in 1995. When the decrease is broken down by race, it totalled 21% for white Americans but only 13% for Hispanics and 2% for African-Americans. Curiously, the highest rate of AIDS deaths decrease was found in American Indians/Alaska Natives (32%).
For the first time in the epidemic, more African-Americans (41%) were reported with AIDS in 1996 than whites (38%). The AIDS incidence showed that blacks had AIDS at seven times the rate at which whites had it, and Hispanics had rates three times higher than whites. Communities of color made up 76% of AIDS cases reported among women and 85% of AIDS cases in children under 13 during the first half of 1996.
"Members of the black community or Hispanic community have not had the same kind of access to health care nor have they had the information to know to seek health care," Elders said. Distrust of the medical community also has been a major barrier to minorities’ willingness to try new or experimental HIV therapies, she added.
Health officials attribute the death rate decline to improved medical care for HIV patients, increased treatment with two or more drugs (particularly protease inhibitors), and increased preventive therapy for opportunistic infections.
In releasing its data on AIDS cases and deaths for 1996, the Centers for Disease Control and Prevention noted that "the higher AIDS incidence rates among non-Hispanic blacks and Hispanics than among non-Hispanic whites may reflect reduced access to health care associated with disadvantaged socioeconomic status, cultural or language barriers that may limit access to prevention information, and differences in HIV-risk behaviors."
Getting the information out
A new campaign called "Be Smart About HIV" hopes to change that scenario. Sponsored by the National Minority AIDS Council (NMAC) and the National Lesbian and Gay Health Association, both in Washington, DC, the campaign offers a toll-free number that patients and providers can call for information about HIV treatment, education brochures in English and Spanish, and referrals to health care and social services, says Moises Agosto, research and patient advocate for NMAC.
"We know for a fact that a lot of doctors out there are not up-to-date with the latest information on HIV treatment," he says. "We need to make sure patients empower themselves and bring this information to physicians."
The variance in treatment practices among regions and HIV populations is underscored by the most recent analysis of drug prescriptions among clients of AIDS drug assistance programs (ADAPs), which use Ryan White funding to provide anti-HIV drugs for more than 100,000 low-income patients. Preliminary results show that nearly 10,000 of those patients are receiving monotherapy, says Bill Arnold, co-chair of the ADAP Working Group in Washington, DC.
"I don’t like what I am seeing, although it is exactly what I expected to see," he says.
While distrust has been a problem in the past and won’t be completely removed until more minorities enter the health care profession (African-Americans make up only 3% of health care providers), Elders said communities of color must teach patients to be more aggressive in making treatment decisions.
"We have not educated our people how to ask the critical questions and make important decisions on their own," she said. "Too often they go to the doctor and sit there and shake their heads Yes’ meaning they understand, when they don’t."
Michael Spence, MD, professor of obstetrics/ gynecology at Allegheny University in Philadelphia, has been treating inner-city African-American women for more than eight years in Philadelphia. Most of his patients have been willing to accept his recommendations for triple-combination therapy because he engages the patients in a dialogue and makes them cooperative partners in treatment decisions.
"This isn’t something where a doc sits down and mandates that you do this or that," he says. "If you include them in the decision-making process outline what you are trying to accomplish and how it is amazing how much they are interested in what is going on with them."
While the "Be Smart About HIV" campaign focuses on educating patients about treatment, Elders says prevention efforts have not been successful enough in communities of color. An advocate of needle-exchange programs, she challenged religious and political leaders to accept that supporting clean needles doesn’t mean they support drug use.
"Not to support clean needles is to support death," she said. "We have got to make them understand that more than half of minorities who have HIV got it from dirty needles. They [minorities] are far more likely to die from HIV disease than from a drug overdose."
In February, an independent, non-government consensus panel convened by the National Institutes of Health endorsed needle-exchange programs. The panel strongly recommended the lifting of government restrictions on needle-exchange programs and the legalization of pharmacy sales of sterile injecting equipment.
[Editor’s note: The "Be Smart" toll-free number is (888) TREAT HIV. The phone line provides callers with information on the medical management of HIV and offers brochures on how HIV works, how the body fights back, medical advances, the importance of talking with a health care provider, and the role of treatment options. Hot line services and brochures are available in Spanish and English.]
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