Community groups push for a greater role in stemming epidemic

Barriers, including lack of funding, still exist

Community-based organizations (CBOs) and other groups representing minorities infected with HIV spent the early part of the fall meeting with national legislators and others to discuss keeping AIDS on the government’s top agenda.

"We’re extremely concerned about what we’re seeing across the country because we know that communities of color are being disproportionately impacted by HIV and AIDS," says Carole Bernard, director of communications for the National Minority AIDS Council (NMAC) of Washington, DC.

African-American women, in particular, are severely affected by AIDS, she says. "That seems to be the new face of AIDS."

In light of the disease’s assault on minority communities, Bernard says that the Centers for Disease Control and Prevention (CDC) would be making a mistake to shift prevention funding from programs that target at-risk minorities and others to HIV-positive individuals.

"We support the CDC’s goals to ensure that the spread of HIV is curbed; however, we just want to make sure that community-based organizations are doing primary prevention, and that this new focus is not at the risk of primary prevention as a policy," she says. "As we test positive folks, we still need to work with the at-risk population and make sure those individuals who are negative remain negative."

NMAC held a People of Color Advocacy Day in September, bringing together about 40 people representing minority HIV organizations. The group congregated in Washington, DC, where they received training about the legislative process and how to improve activist strategies.

"Then they went to the Hill and met with members of Congress," Bernard says. "They felt very much empowered."

Community activism on behalf of communities of color affected by AIDS is crucial, since the minority community has been devastated by the disease, she says.

While African-Americans make up 12% of the U.S. population, more than half of the estimated 40,000 new HIV infections in 2002 were among African-Americans, and another 19% were among the Latino community, according to data from the CDC.

Also, 49% of the AIDS cases reported in 2001 were among African-Americans, a trend that appears to be growing rapidly and has quickly outpaced the proportion of AIDS cases reported among whites and Latinos/Hispanics, according to Kaiser Family Foundation’s September 2003 report, African Americans and HIV/AIDS.

The epidemic’s disproportionate impact on the African-American community can be seen even more clearly when the AIDS case rate per 100,000 population is examined. While the white AIDS case rate is 7.9 cases per 100,000 population, according to 2001 data, the African-American AIDS case rate is 76.3 per 100,000.1

Despite these alarming statistics, not enough is being done to prevent HIV infection among minorities and to get minorities who are infected into early treatment, Bernard says.

"When you have a downturn of the economy, the piece of the pie becomes smaller and politics comes into play; and the NMAC does not want politics to come into play when it comes to assuring the health and well-being of people across the country," she explains. "But that does happen, and so at times, people need to bang on doors and make sure their voices are being heard."

Both the People of Color Advocacy Day and NMAC’s 2003 U.S. Conference on AIDS in September gave a megaphone to those voices. Many of the AIDS activists have dedicated their lives to HIV prevention, support, and treatment in marginalized communities, such as rural West Virginia where, according to national media reports, three people with AIDS died while waiting for antiretroviral treatment, Bernard and other AIDS activists say.

"In West Virginia, we’ve been running budget deficits [in the AIDS Drugs Assistance Program (ADAP)] for at least three years," says Darryl Cannady, executive director of South Central Educational Development in Bluefield, WV. South Central is an HIV prevention agency that targets African-Americans, and it’s the only agency in six counties to handle intervention, prevention, and outreach services.

"We had to make some hard decisions this year and institute a waiting list for ADAP, but that was the only way we could see that the program could run and provide medications to people already in care," Cannady says.

Although Cannady has no personal knowledge of the three people who died of AIDS while on the waiting list, he says that he is almost certain they were diagnosed late in their infections, as that commonly happens with clients in rural areas of the state.

"As a minority working with minorities, I find that the minority populations are not all that hellbent on going and being tested," he points out.

Geographic barriers

Plus, the rural areas are mountainous and remote. "Our terrain is so bad that even clients who are diagnosed have a hard time getting to medical appointments," Cannady adds. 

Some minority AIDS activists interviewed by AIDS Alert say that the problem of reaching poor and/or rural minority communities to educate people about HIV is compounded by the lack of support they receive from community churches.

"We do prevention through word of mouth and try to get the word out to black churches, but they don’t want to touch the subject of AIDS, so it’s very difficult," says Malik Blackmon, an AIDS coordinator with Arkansas HIV/AIDS Task Force in Little Rock, AR.

While it may be true that many African-American churches remain silent on the topic of HIV and AIDS, there is a growing trend toward churches helping to spread HIV-prevention messages and outreach services, says Edwin C. Sanders II, a senior servant of the Metropolitan Interdenominational Church of Nashville, TN.

In 1984, several years after Metropolitan was founded, the church’s congregation was shaken by the news that one of its founding members had died from complications resulting from AIDS, he says.

"So we began to educate ourselves, and that education translated into our getting involved in doing education, initially within our church community and eventually in our larger community," Sanders explains.

Sanders, who spoke about the role of faith-based institutions in HIV prevention at NMAC’s Conference on AIDS, says that the stigma of AIDS being connected to sex has continued to create HIV-prevention barriers in the faith-based community and minority communities.

"Especially with homosexuality, it was in the church, framed in theological terms, in a way that suggested this disease was a curse from God," he states.

"I think the moral judgments that were passed were very unfortunate," Sanders says. "But what I’m seeing more and more is that we have increasing evidence of a change in mindset and attitude as related to these issues." (See next month’s AIDS Alert for an article about Metropolitan Interdenominational Church’s comprehensive HIV education program.)

Bernard says that NMAC also has seen greater participation among faith-based organizations at its HIV conferences and training programs.

"I think [HIV activists] just need to be persistent and commit to bringing all of the stakeholders that are part of the community together to deal with this disease," she adds. "And it needs to be seen as a public health disease and not something that’s particular to the gay community or to African-Americans."

Sanders agrees. "I think there’s been a crucial mistake made in somehow making acceptance of homosexuality as a criteria or litmus test of whether or not folks can effectively do [HIV prevention] work. After all, we are talking about a disease, and even though there might be some aspects of the disease that clearly are tied to sexual orientation, if you look at it in terms of a solid response to a health crisis, then that’s not a variable."

The African-American faith-based community needs to develop strategies for battling the spread of HIV and to help eliminate the health care disparity between whites and African-American, including diabetes, hypertension, colon cancer, breast cancer, and others, Sanders says.

"You can go down a litany of health issues, and it doesn’t have anything to do with sexual orientation," Sanders adds.