The silent epidemic: the challenge of HIV prevention within communities of color.

When his uncle and cousin lost their lives to AIDS-related illnesses, William Rogers remembers how his father told the family about their deaths-that they had succumbed to cancer. For Rogers, his father's refusal to address the true nature of their deaths "served to deny that AIDS had impacted my family, and it served to deny the impact of HIV and AIDS on African Americans who were a part of our community."

Rogers, HIV/AIDS program director for the City of Berkeley, California, knows that his experience is not altogether unique in the context of a largely "silent" epidemic that is claiming the lives of increasing numbers of people of color. While newspaper headlines trumpet the lessening of deaths from AIDS-related causes, the reality of rising HIV infection rates within communities of color is relegated to secondary mention.

In 1995, the last year for which the Centers for Disease Control and Prevention has complete annual data, African Americans accounted for 40 percent of newly reported AIDS cases, compared to 25 percent in 1985. Among, Latinos, figures have risen steadily to 19 percent of the annual total of AIDS cases. By comparison, the proportion of AIDS cases among Euro-Americans decreased from 60 percent in 1985 to 40 percent in 1995.

More recent data on HIV infection suggests that the figures for communities of color continue to get worse. Among states reporting HIV eases to the CDC between July 1995 and June 1996, 51 percent of infected men were African American. Among women's HIV cases, the figure for African Americans was 69 percent, although African Americans represent no more than 12 percent of the nation's population.

For health and social service professionals working in communities of color, the prospect of reversing the trend of growing HIV and AIDS rates has been severely hindered by a trio of interrelated factors: lack of research and funding, inappropriate prevention strategies, and internal community barriers. Despite inadequate resources and access to information, these providers are continuing to wage a tireless war against an epidemic that is infecting over 40,000 people per year nationwide.

The now-defunct Congressional Office of Technology Assessment released findings in 1995 that confirmed what many health and social service professionals working in communities of color already knew African Americans, Latinos, and younger gay and bisexual men of all ethnic groups were disproportionately represented among national AIDS and HIV cases. That year, the reported AIDS incidence rate per 100,000 people among African Americans was six times higher than that among Euro-Americans and nearly two times higher than that of Latinos. Rates were lowest among Native Americans/Alaska Natives and Asians/Pacific Islanders, although many providers in Asian American and Native American communities believe that infection rates are much higher than reported, owing partially to the shame which they say prevents HIV-infected persons from seeking medical attention and diagnosis.

Representing what many providers refer to as the second and third "waves" of infection, AIDS cases among women have been climbing steadily, and people under the age of twenty-five now represent an estimated one-half of ail new cases of HIV infection. Directly corresponding to the high number of women of color with HIV and AIDS, 84 percent of children reported with AIDS in 1995 were African American or Latino.

The OTA report also disclosed that, despite such alarming rates of infection, research focusing on HIV prevention among people of color lagged far behind research on other groups--namely, Euro-Americans. Before 1988, only one report on a "minority population" had been published. In 1995, only 41 such reports on African Americans and Latinos had been released, and not a single prevention study had been published solely about Native American or Asian American/Pacific Islander populations.

Research studies on HIV prevention programs are important for two reasons: to study why specific prevention programs are effective for certain groups, and to obtain funding for general prevention efforts. Ostensibly, once high-risk populations are identified and research studies are written, prevention money is designated and put to use. But as many providers point out, this is not what happens where communities of color are concerned.

Continuing federal- and state-level cutbacks to services for poor and immigrant populations have exacerbated an already dire situation for small clinics and nonprofit organizations serving communities of color. Emma Still, an HIV and family planning counselor for Alliance Medical Center, works in Healdsburg, a rural town in California's Sonoma County. Serving a largely undocumented Latino client population drawn to Sonoma County for seasonal field labor, Still has watched the HIV epidemic take a significant toll in the face of dwindling resources and services. "Funding is getting more and more difficult to get every year,she said.

Amira Snell, an HIV counselor at the University of California at San Francisco AIDS Health Project and a health worker for San Francisco's STD Control Program, echoed Still's concerns by pointing out that African American neighborhoods in San Francisco have gonorrhea rates three times that of the predominantly gay, Euro-American Castro neighborhood. High rates of sexually transmitted diseases are a marker of HIV risk, and African Americans are clearly a population being devastated by HIV disease. While she firmly believes that resources must continue to exist in predominantly gay neighborhoods. Snell questioned why "there is nothing comparable in communities of color to what they have in the Castro." Snell's question is widely asked by other service providers working with communities of color who believe that AIDS organizations and prevention planning councils must begin to more adequately address the changing demographics of the epidemic.

To add to an already complex picture of HIV infection, one-half to three-quarters of new HIV infections in the United States occur among injection drug users (IDUs), their partners, and their children. Although very little research exists on people of color who use injection drugs, a high number of AIDS infections among African Americans and Latinos are known to be the result of injection drug use.

At the Eleventh International Conference on AIDS in 1996. the Center for AIDS Prevention Studies at UCSF demonstrated that nearly 10,000 HIV infection cases could have been prevented in the last nine years by needle exchange programs (NEPs). Despite these findings and numerous government-commissioned studies which clearly indicate that such programs radically reduce IDU infection rates, federal funding for NEPs is nonexistent. In fact, federal grants for NEPs are technically forbidden under a restrictive government ban--as well as widespread state laws--that criminalize the possession or distribution of drug paraphernalia.

Prevention: What Works?

Prevention specialists have learned through trial and error over the course of a sixteen-year epidemic that programs which work for one population may not be effective for other populations. The challenge, according to these experts, is to develop interventions tailored to the specific needs of each community. Additionally, the creation of effective prevention strategies tends to require the participation of members of the target population--a step that more established HIV-focused organizations have not always been comfortable taking. But just as the last decade has seen a growing increase in the number of HIV-infected people of color, so too has it seen a growth of smaller AIDS organizations run by women and people of color.

When the HIV Prevention Project at the University of Illinois at Chicago discovered that local African Americans were not using HIV testing or prevention services, it sought to uncover the reasons. Along with fellow researchers, Byron Mason quickly discovered that most of these services were located in predominantly Euro-American neighborhoods, where many of the interviewees were hesitant to access services. In a quick response to the situation, the Prevention Project soon set up a local health center, staffed by African Americans. With no specific external gay or HIV affiliation, the center exists to provide a broad range of health care services. In this way, Mason explained, people don't have to fear being stigmatized "as gay or bisexual or anything related to HIV."

Understanding that the highest-risk populations tend to be the least likely to seek out even the best of prevention services, prevention efforts in communities of color have evolved in innovative ways. Beyond the simplistic approach of condom distribution, newer HIV prevention efforts actively seek out hard-to-find target clients and incorporate on-the-spot interventions, theater productions, food and gift packages, and other ways of breaking down clients' trepidation to talking about HIV risk.

Many experts further agree that gay/bisexual HIV organizations are sometimes ineffective in reaching people of color who simply do not identify themselves as gay. "I do not believe that dollars that go to the `general' gay population necessarily reach men having sex with men communities because the `general' gay population is not tied to this population," explained Rogers.

Recognizing this, the Los Angeles-based Asian Pacific AIDS Intervention Team has utilized bilingual outreach groups to reach Asian American men who have sex with men in bars, clubs, bathhouses, and parks. It has also created additional programs to reach women who are at risk "We know the way [Asians/Pacific Islanders] receive information and how to talk to them about taboo issues," explained Karen Kimura, director of community relations for APAIT.

Among Latino communities, theater productions have proven to be an essential tool for information dissemination. earlier this year, Emma Still began working with a group of young Latinos to produce El SIDA ye sus consequencias (AIDS and Its Consequences). Advertised entirely by word of mouth, Still explained, the play has attracted huge audiences of Latinos desiring to learn about HIV in a culturally informative context. San Francisco's Instituto Familiar de la Raza implemented a similar project, using theater as a way to access the high-risk Latino homeless persons who live under bridges and freeway overpasses. Maria Rinaldi, AIDS education and prevention team coordinator for Instituto Familiar, explained that after watching the presentations many of the men and women have felt compelled to talk about their own HIV risk. "These theater pieces talk about how HIV is related to every issue of their lives.... We have been able to do multiple sessions [with them]," she said.

Rinaldi and others who work with high-risk populations strongly advocate for "harm reduction" techniques--an approach to lessening the degree of risk while allowing the client to continue his or her behaviors. Additionally, many service providers value an approach to harm reduction which emphasizes cultural pride and self-esteem. Willie Lonewolf, an outreach worker for the Native American AIDS Project in Oakland, California, handles interventions in the Native American community which often start with discussions of the heritage he and his clients share. Lonewolf attests that talking about sexuality and HIV with strangers is a challenge for many Native Americans who value their pride and privacy. But his stature in the community and nonjudgmental attitude toward drug users and prostitutes eventually has had the desired effect: Lonewolf gets his clients talking about incremental ways to reduce the risk of HIV infection.

Providers like Lonewolf argue that messages of abstinence and monogamy are relatively ineffective means of reaching their high-risk populations. Yet, last year Congress authorized a $250 million grant exclusively for abstinence education while continuing to uphold its ban on funding for needle exchange programs. To governmental funding sources, harm reduction strategies and other innovative prevention techniques among truly marginalized populations are too controversial and thus less likely to get funded. Without funding, there are few research studies to establish the successes of nontraditional prevention methods and to draw desperately needed funding to projects that benefit the highest-risk populations. As a consequence, providers live with constant concern for the longevity of the projects they feel are most valuable in combatting the epidemic.

Internal Barriers to Prevention

According to many social service providers, some of the greatest challenges facing providers working in communities of color stem from internal, rather than external, sources. These barriers--which include denial, homophobia, sexism, and mistrust--work together to hamper existing prevention efforts.

A catch all term used by providers to describe how people render the HIV epidemic invisible or not pertinent to their own lives, denial generally results in a failure of association between high-risk behavior and the reality of HIV infection. According to Rogers, one aspect of denial stems from the social problems already affecting communities of color. "We have extreme poverty, homelessness, substance use, prostitution, violence, gangs, crime.... It's overwhelming," he explained. "Now there's AIDS and I think it's difficult for people to feel like they can do much else or try to combat another problem."

Making an already difficult situation more complex, many prominent community organizations pay little more than lip service to HIV prevention efforts. Experts in the field of HIV prevention agree that much of this silence can be attributed to a legacy of homophobia within communities of color. The causes of homophobia within these communities can be viewed as being similar to those of many other cultures: religious condemnation and a strong emphasis on male heterosexual prowess create societies with little tolerance for same-sex partnerships. According to many activists and providers, homophobia has historically been exacerbated or even introduced by European values, as in the case of many Native American and Pacific Islander communities traditionally more accepting of varied sexual orientations. Rogers believes that a legacy of oppression of African Americans has placed a particular emphasis on the importance of heterosexual "manhood." "I think some of the issues date back to slavery and black men being labeled as something other than men--that is, boy, rigger, slave. . . . Therefore, the concept of manhood plays a central role in the cultural identity of black men. The concept of being gay . . . is seen as the antithesis of manhood," he explained.

Homophobia has not only endangered and alienated men who have sex with men from their communities but also led to underreporting of the disease. "This has made [tracking the disease] more complicated," Karen Kimura said. People with HIV "are not being properly diagnosed because they refuse to see anyone except their family doctor, or [as with Asian Americans] they're asking doctors not to report their diagnosis because of the shame and stigmatization they feel."

The very same sociocultural reasons which contribute to homophobia among people of color also strongly influence gender relations and the spread of HIV among women of color, for whom heterosexual contact is now the leading source of infection. Working primarily in her rural community of undocumented and low-income Latinos, Still cites machismo as one of the biggest obstacles to the use of condoms. Her clients, she explained, "say `I can't use a condom--it suppresses my sexuality.'"

Both Still and Maria Rinaldi voice strong sentiments in favor of counseling the male partners of female clients in order to achieve genuine results in HIV prevention. "I strongly support this idea of empowering and liberating women," Rinaldi said. "The problem with this is that sometimes it isn't real, however wonderful the idea may be." Many women, she explained, are not able or ready to abandon their own cultural conditioning and "just take charge of their own sexuality." For sexually active young women of color, prevention strategies may be most effective when they include HIV education and lessons on sexual "skills" (such as dealing with pressure and exerting self-control) in the context of gender and ethnic pride. Family and community members can take a similar approach in developing a sense of self-worth and assertiveness among young women.

Arguably, the most significant and least understood barrier to prevention efforts within communities of color is mistrust. Although best documented in the African American community, suspicion of the intentions of doctors, public health officials, and researchers is a widespread phenomenon among other communities of color as well. From the early European settler days, when blankets were used to spread smallpox among Native American populations, communities of color and the poor have been subjected to a variety of health-related abuses. Residents of San Francisco's Chinatown in the early 1900s were left to fend for themselves during an epidemic of bubonic plague, until nearby Euro-American neighborhoods began to acquire it. Alaskan Natives in the 1950s were fed radioactive drugs in experiments intended to discover how American soldiers could better survive in the Arctic.

But the most infamous abuse of medical ethics in recent U.S. history is unquestionably the Tuskegee syphilis study. From 1932 to 1972, nearly 400 low-income African American men with syphilis were subjected to often painful clinical experiments in order to monitor the effects of the untreated disease. Penicillin was found to be effective treatment in the mid-1940s. yet the U.S. government withheld information about the drug from the participants of the study until the situation was exposed in 1972. Despite a recent White House apology, the repercussions of the unethical and highly suspect medical experiment have been long-lasting. A recent study, commissioned by the Institute for Minority Health at Emory University, measured the lingering impact of Tuskegee, finding that the majority of African Americans believed that they would be somewhat or very likely to be used as research "guinea pigs." Of the 500 African American respondents, 18 percent believed that HIV was a `man-made virus,' and another 9 percent believed that HIV and AIDS were definitely "part of a plot to kill blacks." Other studies and the opinions of medical doctors who regularly work with African American patients have verified the effects of lingering mistrust: African Americans are less likely to take doctor-prescribed medicines, to donate blood, or even to see a doctor.

Many health professionals were already painfully aware of the prevalence of mistrust within communities of color. Prisoners, the very poor, and the undereducated have tended to be among the strongest subscribers to HIV-as-genocide theories, but such ideas have even found popularity among activists, as popular conspiracy articles create persuasive arguments by melding pseudoscientific explanations with reactionary politics. Although experts in the field are quick to point out that these explanations simply do not hold up under scientific scrutiny, the conspiracy theories have gained loyal adherents who propagate confusing and counterproductive messages.

Conspiracy theories aside, providers like Rinaldi point out that many people of color have legitimate reasons to avoid the medical establishment. HIV prevention efforts directed toward recent immigrant populations of Latinos and Asian Americans have been severely hampered by anti-immigrant laws, even when those laws have not gone into effect. Fearing deportation, humiliation, or ridicule, these populations (including legal residents) tend to avoid doctors and often do not possess the English-speaking skills to comprehend existing prevention messages. The high incidence of mistrust, suspicion, and fear among communities of color has made the work of devoted providers and educators all the more difficult, and the rising rates of infection all the more tragic.

The Role of the Community

Recent years have brought stunning discoveries and research findings regarding HIV and AIDS to the front pages of our nation's newspapers. Replacing articles that previously spoke of the devastating tolls on human life are new articles proclaiming the results of a promising class of drugs: protease inhibitors. These new drugs, often taken in a drug "cocktail" with existing antiviral drugs, are proving to extend the lives of some patients with severely compromised immune systems.

While the new anti-HIV drugs are an encouraging sign of hope for the treatment of this virus, they do not represent a cure by any stretch of the imagination. The phenomenal costs of these medications have made them virtually inaccessible to much of the world's HIV-infected population. Furthermore, many states have made recent cuts in their AIDS Drug Assistance Programs by capping enrollment, reducing the types of available drugs, and lowering the income level required to qualify for the programs. Consequently, experts in the field agree that issues of funding, research, culturally appropriate prevention, and mistrust within communities of color need to be addressed as a matter of priority. Perhaps most importantly, they argue that leading community members must begin to acknowledge the severity of the HIV epidemic. "This is an extraordinary problem in all communities," said Paul Kawata, executive director of the Washington, D.C.-based National Minority AIDS Council.

In the face of dwindling numbers of mainstream media reports about the epidemic, and an even smaller number of reports which relate the issue to communities of color, Rogers believes that one of the key responsibilities in educating the public falls on grass-roots media, often viewed as a more reliable and honest source of information. "The media in communities of color must start to aggressively address this issue in a real manner, otherwise the people who really need to hear it won't get the message," he stated emphatically.

Although some civil rights organizations have sponsored prevention conferences and campaigns, such gestures by most organizations are more the exception than the norm. "Sometimes AIDS just doesn't make it to the top of their plate," explained Kawata in reference to the agendas of many civil rights groups. "We haven't seen as much leadership as we in the HIV community would like."

Faced with complex internal and external obstacles to delivering appropriate care to a diversity of populations, many providers and activists echo Kawata's concerns. The lack of immediate attention to a growing epidemic, they say, has resulted in devastating consequences for communities of color. Year by year, the "silent" toll of the HIV epidemic climbs to higher numbers, leaving a trail of grief and bewilderment in its wake. In a voice tinged with urgency, Kawata summarized the dilemma: "We're going to wake up in ten years and say `where did we go wrong?' We have to be accountable to each other. We have to take care of each other."

Silja J. A. Talvi is a freelance a writer based in the San Francisco Bay Area. She worked in the HIV field for several years, focusing on youth and women infected with or at risk for HIV Her e-mail address is [e-mail].