Under Our Skin: AIDS in Communities of Color

by Heidi Fellner

Gary Novotny. Photo by Mike Hnida

“We used to have a quote on the wall from Phill Wilson, Executive Director of the Black AIDS Institute,” Lorraine Teel, Executive Director of the Minnesota AIDS Project states. “And it said, ‘The next time somebody says “the changing face of AIDS,” I’m going to throw up.”

Despite the national media’s portraying disproportionate HIV-infection rates as “new,” history and statistics disagree: In 1985, people of color accounted for more than one-third of all known cases. Today, racial minorities make up almost 70 percent of new diagnoses.

• In Minnesota, 16 percent of new HIV infections are in African-born immigrants, a group that is less than one percent of the state’s total population.

• Latinos total only 12.5 percent of the nation’s population, but account for 20 percent of AIDS cases.

• 89 percent of babies born with HIV/AIDS belong to minority groups.

• For Asians and Pacific Islanders, HIV/AIDS is the sixth leading cause of death in men ages 25 to 34.

• Among women, blacks account for two-thirds of all new infections.

• American Indians are 1.4 times more likely to have AIDS than non-Hispanic whites.

(The foregoing are from the Office of Minority Health, The Latino Commission on AIDS, and the Minnesota Department of Health.)

Alarming as these figures are, the general public continues to deny the extent of the problem.

“You have a conspiracy of silence from white America and black America about AIDS,” Teel explains. “And then, you have [people] bemoaning how terrible it is that in the city of Kinshasa [capital of the Democratic Republic of the Congo in Africa], you have the adult population 30 to 40 percent infected with HIV. And absolutely yes, that is terrible. But I’ll tell you a more astounding figure: In the community of gay and bisexual African American men, the HIV rate is around 70 percent in Washington, DC.”

Statistics can’t lie, but they are sometimes misleading.

Lorraine Teel. Photo by Sophia Hantzes

Kevin Moore, HIV/Health Education Coordinator at Pillsbury United Communities, notes, “It’s really about the way in which they’re listed, and the way in which the person reading it internalizes it.”

For example, upon learning that African-Americans account for more than 50 percent of new infection rates of HIV in America, some would conclude that African-Americans make up half of the epidemic, while others would conclude that more African-Americans are getting tested.

According to Gary Novotny, Program Manager for the Health Education and Risk Reduction unit at the Minnesota Department of Health (MDH), the second interpretation is certainly accurate for the Hispanic community: “For Latino men, for example, I believe that a lot of those cases are people who were infected quite a while ago, and just tested now.”

Though increased testing is laudable, the Centers for Disease Control and Prevention (CDC) anticipates that further results may indicate a grim prognosis. In 2006, CDC believes that more than half of the entire population of gay and bisexual black men already may be infected. In response to this, and to changing at-risk populations, CDC is now recommending routine HIV screening for everyone.

Gwen Dolyn Velez, Executive Director of the African American AIDS Task Force (AAATF), observes, “Once you begin testing and engaging everybody, the face of the epidemic might change.”

HIV statistics is not a unique phenomenon. Luisa Pessoa-Brandao, MDH HIV/AIDS Surveillance Coordinator, reports that higher HIV-infection rates among minority communities are in line with broader health-care inequity: “It’s just like any other disease, where we’ve seen disparities and other conditions in Minnesota. It’s not that race is a marker for those things, but there are issues with access to health care or socioeconomic conditions.”

Some of the factors that may account for the HIV/AIDS disparity are difficult to wrangle. First and foremost, every ethnic demographic is hesitant to discuss issues of sex and drug use.

“The only piece of education that the United States ever did about HIV to everyone in the country was in 1988,” Teel points out. “The US Surgeon General, C. Everett Koop, did a mailing to every household in America about HIV.”

Unfortunately, Koop was barred from using words like “semen.”

Teel continues, “He had to use ‘bodily fluids.’ As a result, 20 years later, people still think you can get HIV by kissing, sweating, and crying.”

For communities of color, the problem is compounded further by cultural traditions that take a dim view of same-sex relationships and recreational drug use.

Peter Carr. Photo by Mike Hnida

As Moore relates, “When serving communities of color—and this goes for African-American, Latino, Native American, and Pacific Islander—you are dealing with a lot of cultural boundaries or traditions. A lot of times, especially in the African-American community, a lot of things go back to the church.

Moore cites the notorious Tuskegee experiment, where African American men were injected with syphilis: “We deal with a lot of issues around stigma, and around our distrust of medical systems and health care.”

Another factor is the “down low” phenomenon, referring to men who secretly have sex with men, and who may also have one or more heterosexual relationships.

So far, no ethnic community—Caucasian included—is free from prejudice toward gays and bisexuals, so a significant group of men engage in clandestine homosexual activity, but do not define themselves as “gay.”

The down low phenomenon also has led to a rising rate of infection among women—again, disproportionately African-American—who didn’t know their partners were engaging in high-risk activities. In addition to the cultural restrictions, women may hesitate to question their partners, because of male dominance and domestic violence.

“Sexual negotiation is a very tricky thing, especially if it means the difference between having a roof over their head or not, or going to work with a black eye or not,” Moore emphasizes.

Odd as it seems, one important aspect of addressing sexual health, and perhaps the easiest to change, is language. CDC has taken an important step to use the term MSM (men who have sex with men) to avoid labeling those who may have had a same-sex encounter as “gay.”

While that may seem like splitting hairs, Moore finds it essential that HIV-prevention messaging not alienate people.

“It’s wrong for me to make you ‘gay’ just because you had an experience with a guy,” Moore contends. “That type of judgment or categorization is what makes people shut down, and makes them say, ‘That’s not me.’ They remove themselves from the person at risk, and go into denial. Labeling something for what the action is—people can have their opinion about it, but you’re telling the truth.”

However, in several communities, opinions about same-sex relationships are harsh enough, labels aside. Besides cultural traditions, the church also bears responsibility for furthering antigay sentiment.

Gwen Dolyn. Photo by Sophia Hantzes

Moore asserts, “They have a substantial amount of power and say-so in the African American community. They’re dealing with their own miseducation, their traditional ways of thinking. They do all of this under the understanding of, ‘This is what’s right, and God says that you’re not supposed to do this, blah, blah, blah.’ Although he says at the same time we’re not supposed to pass judgment on others, [they] will still pass judgment on anybody having sex with someone of the same sex.”

Teel believes that other factors account for higher minority infection rates, citing Out of Control: AIDS in Black America, an ABC News Primetime special that aired in late August. It posited the rate of black male incarceration as a significant factor. AIDS infection rates in prison are five times higher than outside, and many men who go into prison HIV-negative come out infected.

Additionally, because of these high incarceration rates, New Jersey-based journalist Jonathan Tilove details that adult black women nationwide outnumber black men by two million. With almost a million black men in prison or the military, black communities have a gender gap of 26 percent.

Similarly, Building Blocks for Youth informs that in some states, Latino men are incarcerated at rates from five to nine times greater than those of white men.

This gender gap leads to greater risk of infection outside prison walls.

Teel recounts, “You have a scarcity of men, so you have higher rates of men having multiple relationships with women concurrently. It isn’t because blacks are more promiscuous than whites, or [any other] old stereotype. A simple fact like that illustrates why this is not such an easy issue.”

It’s a complex problem requiring a multifaceted solution that addresses cultural and social issues in addition to basic safe-sex practices.

In Minnesota, many programs exist to provide culturally relevant prevention and care options. However, most of them struggle to find the necessary funding and other resources to meet their needs. Last year’s federal-government funding recision on AIDS prevention services left many programs with shortfalls, and some lost their money entirely.

Kevin Moore. Photo by Sophia Hantzes

However, several programs are in place that address high rates of infection among African-born Minnesotans, including Zyombi International Project, serving West Africans; Mwanyagetinge, serving Kenyans; and Oromo Community of Minnesota, serving the Oromo population (a large ethnic group from Ethiopia). Each provides HIV/AIDS education, and the latter two also offer other social services.

Moore leads a regular Just for Men Brunch, which targets African-American men who have sex with men: “A group of 20-25 men will convene here at Pillsbury House to break bread, shoot the you-know-what—just kind of a fellowship. That’s for the first hour. Then, they will have an educational presentation, or structured discussion.”

A variety of different ages attend regularly, which Moore believes is critical to building a stronger community.

In Moore’s words, “With all the things that are facing the MSM community, and more specifically the African-American MSM community, the youth don’t feel like they have role models, and the older people don’t think the youth care about the future of the MSM community.”

AAATF conducts community outreach not only by holding attendance events and health fairs, but also by going to places where, as Dolyn Velez emphasizes, “there is a high probability of reaching people with HIV, and where high-risk populations congregate.”

The program provides AIDS testing, counseling and referral services, HIV health and risk-reduction education, and a drug-assistance program.

AAATF also has partnered with Hennepin County Medical Center to eliminate health care disparities, and remove barriers to individuals in need of care.

“None of us do this work by ourselves,” Dolyn Velez maintains. “We need each other doing what we do best.”

Recently, AAATF connected with Reverend G. Allen Foster, who serves the Center for Hope and Compassion in Brooklyn Center.

Dolyn Velez recalls, “Through some brainstorming we said, ‘Our vision has been to have a coalition of churches that are addressing the needs of the community around HIV/AIDS.’ It turned out that was his vision as well.”

When AAATF applied for a grant to form the coalition, it was denied. However, the group came together anyway, forming a coalition of six churches under the name Humurah—a Swahili term for compassion and mercy.

Sharon Day. Photo by Sophia Hantzes

Dolyn Velez adds, “All of these leaders have expressed a great deal of passion and compassion for people, not only who are living with HIV, but their families, and really understand how important it is to educate communities to reduce some of the stigma around HIV.”

The Indigenous People’s Task Force (IPTF) targets American Indians—the fastest-growing population of those infected with HIV. Its Two-Spirit Risk Reduction program encompasses education, social events, counseling, and testing services. Art and theater also are used for therapeutic purposes, and reaching out to members of the community. For example, the Ogitchidag Players, a group of young Native actors, educates the American Indian community about AIDS through storytelling, drama, music, and dance.

“That program has been so important, not only to this community here, but to people around the country,” IPTF Executive Director Sharon Day comments, “because people hear the message about prevention in a way that not only gives them knowledge and touches their brain, but it touches their heart as well.”

In Minnesota, Native Americans have a low incidence rate compared to the national average. However, HIV-positive indigenous people face extra challenges when navigating the health care system, because of the peculiarly exclusionary language in the Ryan White Care Act.

Day remarks, “What happens is if a native person is infected, and they go to a Ryan White Care Act clinic, sometimes, they’ve been sent away.”

If Congress were to reauthorize a reworded Ryan White act, it would remove that barrier.

Still, despite the extensive work that these organizations do, perhaps the largest obstacle to addressing the needs of minority communities is funding.

Pessoa-Brandao argues that the government needs to fund viable, culturally specific community programs, but cautions against knee-jerk responses: “We try to respond to the trends that we see in our data, but you have to be careful how you respond. You don’t want to switch funding on and off in certain communities, because that doesn’t allow those communities to establish viable programs.”

However, because of last year’s federal recision, and the resulting mess it made for Minnesota’s Request for Proposal (RFP) process, several programs were cut.

Moore insists, “At least two or three agencies I know of offhand did not get any funding for MSM or youth or African-Americans, and these were actually programs that had successful programming.”

Peter Carr, Interim Section Manager for the STD and HIV Section of MDH, warns that another federal recision is likely.

Moore responds with dismay: “We would probably lose some really effective role models and minds. We were the only state that had to go through an RFP process twice. I really would feel that if something like that were to happen again, a lot of people would want to move or leave this state, and that’s not a good thing.”

As World AIDS Day draws nearer, it is a powerful reminder that despite the epidemic’s complexity, we all can do something important: Talk about it.

On World AIDS Day 2003, United Nations Secretary General Kofi Annan implored, “Join me in tearing down the walls of silence, stigma, and discrimination that surround the epidemic. Join me, because the fight against HIV/AIDS begins with you.”