Concern About AIDS in Minority Communities
by Alexandra Greeley
Although the spread of HIV seems to be relentless worldwide, and the virus that causes AIDS now affects men, women and children of every age and ethnic group, concern has been expressed that in this country, certain groups may not be receiving adequate health care due to cultural barriers.
Figures released from the national Centers for Disease Control and Prevention in Atlanta show that as of Dec. 31, 1994, there have been a total of 441,528 reported cases of AIDS in the United States since the epidemic began, and about 1 million people are infected with the virus. Although the number of new cases reported in 1994 (80,691) shows a decline from 1993 (106,618), when CDC expanded the AIDS surveillance case definition to include conditions--that is, opportunistic infections--that happen earlier in the disease, they are higher than in 1992 (47,572).
Now, rapid increases in HIV infection are showing up among minorities, specifically in the African American and the Hispanic communities. As CDC's HIV/AIDS Surveillance Report of December 1994 states, "Among reported cases, 1994 was the first year when blacks and Hispanics together accounted for the majority (53 percent) of all cases reported among men."
Data from the Centers for Disease Control and Prevention indicate that in 1990, European Americans accounted for about 52 percent of AIDS cases while African Americans made up about 30 percent and Hispanics about 17 percent. By 1994, the proportion of African American and European American cases had become nearly equal: Europeans Americans made up about 41 percent of AIDS cases and African Americans about 39 percent. The Hispanic proportion rose to about 19 percent.
Infection rates are growing among the two other minority communities as well--the Asian American/Pacific Islander and the Native American (American Indian/Alaska Native) communities. According to CDC, of the total reported new cases (including men, women and children) of AIDS in 1994, 33,193 were among European Americans (not Hispanic); 31,487 among African Americans; 15,066 among Hispanics; 577 among Asian Americans/Pacific Islanders; and 227 among American Indian/Alaska Natives.
Minority groups, or "communities of color," have been, for reporting purposes, classified into these four categories by the National Commission on AIDS. According to the 1992 study, "The Challenge of HIV/AIDS in Communities of Color" by the now disbanded commission, members of each community share some physical characteristics or ancestry. In addition, the study says, they also share the unfortunate position of being society's underdogs, facing, historically, "broad, sustained" racial discrimination. Other experts point out that those who live in poverty of any ethnic background, including European American, face the same kinds of problems accessing health care as do those classified as racial or ethnic minorities.
HIV's Spread Among Minorities
Even from the beginning of the epidemic, minorities were affected by the virus, says the commission's study. In fact, says Helen Fox, senior policy analyst, National Minority AIDS Council, Washington, D.C., there has always been a higher incidence of HIV infection in communities of color than early statistics indicated, because people used to assume that AIDS was a gay white man's disease only and did not look for it elsewhere. "There was no understanding of the disease or of the relationship of injecting drugs and the transmission of the virus," she says.
"Race and ethnicity are not risk factors," says Paul Denning, M.D., epidemiologist in CDC's AIDS Surveillance Branch. "But they are markers for other factors that put people at increased risk, like lack of health insurance and limited access to care."
Indeed, say Brenda Lee and Lyvon Covington, public health specialists in the Food and Drug Administration's Office of AIDS and Special Health Issues, a number of common factors, many economic ones, affecting many minority groups contribute to the increase in AIDS: lack of medical insurance, which results in a lack of access to health care; a higher incidence of diseases or maladies in general; fear of medical care, particularly among illegal aliens; limited or no means of transportation to get to a health clinic; and for some, particularly in rural areas, too few doctors. And even when doctors are available, having Medicaid does not ensure adequate care, says Denning. "You may have Medicaid," he says, "but many practitioners won't accept it."
Without routine medical care or testing, many people never suspect they are infected with the virus, says Fox. "There is such a long incubation period, and so many people feel pretty good," she says. "It is not until they come down with some kind of infection or [for women] a yeast infection that doesn't go away that they suspect something. Also people may be sick, but without access to health care, they won't do anything about it until they are very ill. Taking care of kids, housing and work--these basic needs are more important than worrying about HIV."
In addition, for many women, condom use can be a major domestic issue. Hispanic women, for example, often lack empowerment in sexual relationships, says Ledia Martinez, Hispanic HIV/AIDS coordinator, Office of HIV/AIDS Education, American Red Cross. "Women may not be able to speak with their partners about condom use. ... Such conversations are often interpreted as a sign that the female thinks the male is unfaithful. So even if you are unsure of your man, but he is putting food on the table, you risk losing him by pushing the condom-use issue. You put that aside because it is more important that the kids have a roof and that you are alive on a day-to-day basis." Besides, she notes, most Hispanics are Roman Catholics, and the position of the Catholic church, which opposes the use of condoms and other forms of contraception, is another barrier against condom use.
And, Denning points out, many minorities live in the inner city or urban areas, the foci of the epidemic. "Because the virus is very prevalent in these communities, the chances or odds that a person's sexual partner may be infected with HIV are increased," he says. "Also, one must consider the fact that injection drug use and other substance abuse, which are concentrated in disadvantaged, urban areas, have played a major role in the spread of HIV. Injection drug use serves as a direct mode of HIV transmission, while other substance abuse, like crack cocaine use, may contribute to high-risk sexual behavior."
Some experts point to the "at-risk" factor as another reason why HIV has spread rampantly, a factor that knows no community boundaries. "I think the primary reason why people don't use protective measures--from abstinence to condoms--is that they don't see themselves at risk," says Owen McMaster, Ph.D., pharmacology toxicology reviewer, Center for Drug Evaluation and Research, FDA. "They think they know their sexual partner, or believe that this happens only to gay men who are not in a mutually monogamous relationship, or they think that there is no way that this beautiful, healthy-looking man or woman could have HIV."
Even understanding risk factors does not prevent risky behavior among some minorities, points out Rafael Chang, prevention education director, The Living Well Project, San Francisco. In a recent study of 260 gay Asian Pacific Islander men, he says, the researchers found that many people do understand the risk. "But they are not incorporating a sense of worthiness and self esteem," he says, since they feel they do not meet the American standard of beauty. As a result, he says, these men take great risks by not practicing safer sex if their partner does meet that standard of beauty.
Barriers to Treatment
For minorities, discrimination, poverty, and inadequate health care and education are barriers to meaningful prevention messages and to treatment. And often, so are traditional beliefs.
Homophobia and the belief that AIDS is a gay, white man's disease have helped both to spread and to hide the disease. First, many minorities believe that the epidemic can't affect them or those in other communities of color, says Cherylene Showell, executive director of IMPACT (Intergroup Minority Project, AIDS Consortium and Trust) of D.C. in Washington, so they ignore its threat. Second, when HIV strikes and is associated with homosexuality, people deny its presence. This is true in some African American communities, she says, where families often hide and treat infected relatives as long as possible so outsiders cannot suspect the presence of homosexuality.
And it is true in many Asian American communities, adds Fox, where AIDS still often remains undiscussed and hidden and where many recent immigrants believe that homosexuality brings shame on the family. Among other immigrant populations, when men have sex with men, they do not consider themselves gay, she says--and if the men become infected, it's a real stigma.
"In most public health practices, once you know that there is something dangerous, you let the community know," says Showell. "And they can take whatever measures they need to protect themselves. But with HIV, people don't treat it like the flu, because it is tied to all these 'isms' [prejudices]." Instead, HIV becomes invisible with devastating results: no awareness of HIV, increased infection rates, limited medical treatment, and the spread of the epidemic. "It's really rather simple," she says. "I have seen this played out over and over again."
Other traditions provide roadblocks to medical care, too. In the Hispanic population, for example, the community's language isolation and culture may be part of the problem, according to Martinez. "Many Hispanics live in their own communities and remain connected to each other, but isolated from the mainstream," she says. "Even at school, there might be an HIV curriculum, but it is not taught in Spanish, so Hispanic children who speak only Spanish often never receive any HIV-prevention messages."
Add to that the Hispanic view of life, their fatalism, she says. "It is very common among Hispanics to feel that people are born with their own cross to bear, and for some, having AIDS, or a son or sister with AIDS, is the cross."
Among African Americans, the epidemic has provided a greater sense of discrimination. "There is a denial [among African Americans] about the origins of the disease," says Darlene Washington, African American HIV/AIDS coordinator, Office of HIV/AIDS Education, the American Red Cross. "The disease was associated with Africa, and immediately, people said, `I won't believe this. They are always blaming us for bad things. Why is Africa a deep, dark place of teeming germs?'"
But there is another level of denial, says Washington. The social, sexual and drug implications of HIV at first caused some African American faith communities to shy away from the issue, and as a result its members shied away, too. However, says McMaster, many African American congregations now do have HIV programs and are involved in HIV ministries.
In addition, Washington and others believe that for African Americans, the notorious 1970s Tuskeegee study, in which black men infected with syphilis were studied but not treated, stirred a fear of mainstream medicine. McMaster says this history seems to lead some African Americans to believe that AIDS was created by scientists to get rid of black people. "They think, 'If you made the disease to make me sick, why should I trust you to cure me?'" he says. This distrust keeps people from getting early treatment, from participating in clinical trials, and from using experimental drugs.
Finally, some minorities still prefer traditional medicines--such as herbs, massage, vitamins, and acupuncture--over Western medicines due to uncertainty about side effects of some drugs, says Chang. "In the Asian population, for example," he says, "there is a high rate of allergic reactions to sulfa drugs. ... So if you have a community with a high incidence of moderate-to-severe reactions, word gets out quickly, and there is an unwillingness to participate in Western interventions."
Federal Response to the Epidemic
Numerous private, corporate, community, state, and federal agencies are trying to help stem the tide of HIV among minorities and assist and support outreach and education programs. Federal agencies, in particular can sustain broad prevention, research and education activities.
In its 1992 report, the National AIDS Commission recommended that federal health educators learn and take into account the cultural differences of minorities in order to target prevention messages successfully. CDC is applying this strategy in its new community collaboration and outreach efforts.
"We looked at the whole idea of communities and partnerships and community planning," says Dorothy Triplett, assistant director for Minority and Other Special Populations, Division of HIV/AIDS, CDC. "Community leaders and state and local officials sit at the same tables and are determining what the needs are," she says.
CDC is working with community gatekeepers to change risky behaviors and, she says, CDC also funds national minority organizations and community-based organizations. It has set up initiatives with the Minority Health Professions Foundation, all African American medical schools, and is working with the University of Puerto Rico.
At the National Institutes of Health in Bethesda, Md., which sponsors AIDS clinical trials, officials are extending their efforts to enroll minorities, which have historically been under-represented in trials and treatment studies. According to George W. Counts, M.D., an infectious disease specialist and director of the Office of Research on Minority and Women's Health in NIH's National Institute of Allergy and Infectious Disease (NIAID), it's important to make certain that trial results apply to the minority population, and to make certain that experimental therapies are equally available to minority groups.
To achieve these ends and to provide the best care to trial participants, he says, NIAID aims to ensure equal access to clinical trials and research programs and to dispel mistrust of those programs. Minority enrollments in AIDS clinical trials rose from 17 percent of enrolled subjects in 1988 to 44 percent in 1994.
FDA has developed and maintained numerous research and outreach efforts in the AIDS fight. Says FDA's Mary Beth Jacobs, director, division of life sciences, Center for Devices and Radiological Health, and the center's AIDS coordinator, FDA focused immediately on condoms and their testing and on fast-tracking the new Reality brand female condom as a barrier to virus transmission. A new test method was developed in FDA labs to evaluate barrier effectiveness for condoms and latex gloves. The new Reality brand female condom was fast-tracked for approval.
Elsewhere in the agency, the Center for Drug Evaluation and Research (CDER) actively facilitates the submission of investigational new drug applications, uses treatment INDs and other mechanisms to make drugs available as early as possible, and speeds the approval of AIDS drugs.
"We also send speakers to conferences to explain to researchers, particularly those in minority communities, how to access the FDA," he says. "While we have no minority-specific programs, FDA is making sure that minorities are getting the information about how to get into clinical trials and how to get experimental drugs." For example, a special telephone line (1-800 TRIALSA) provides such information on an ongoing basis.
"We also encourage sponsors to include a diverse population in their clinical trials, but we have no specific regulatory requirement at this time," he says. "In fact, both CDER and the FDA's Office of AIDS and Special Health Issues give information to minority groups and minority physicians about which pharmaceutical companies are doing clinical trials so that minorities can enroll in the trials."
McMaster says that center officials are also studying the issue of pharmacogenetics--that is, the way in which a person's genetic makeup influences the efficacy of a drug and its side effects. The goal is to determine if certain genetic groups may benefit more, or have fewer side effects, when treated with certain classes of drugs. For example, such studies have shown that African Americans respond better to certain classes of antihypertensive drugs than to others. The hope is that similar information could be obtained for AIDS drugs. The agency is also meeting with representatives of other governments at the International Conference on Harmonization to establish a single set of regulations worldwide.
FDA's David Feigal, M.D., division director for antiviral drug production in the center, says that FDA has responded in many ways, including approving 20 different treatments in, "the fastest review time of any group of products the agency has been responsible for."
As for the future? While many researchers and activists brace themselves for the uphill fight ahead, Feigal feels that everyone must be committed for the long haul. We can't wait for a vaccine, he says. Rather, victory will come in little steps, as happened in the national effort to cut the stroke rate among African Americans in the so-called "stroke belt" in the South. "Broad-based community programs took screening and health care into the black communities," he says. "So we need to do much of this with HIV. This won't make the problem go away over night, but we can chip away at it little by little."
Alexandra Greeley is a writer in Reston, Va. This article originally appeared in the December 1995 issue of FDA Consumer Magazine.