Impact of HIV on Women and Communities of Color
The year 2000 was the first year since the early 1990s that the number of newly reported AIDS cases rose in Washington state. Nationally, the rate of decrease in AIDS cases and deaths has also leveled. Twenty years after the first report of what later became known as AIDS, we are again searching for a way to stop rising infection rates. In 2001, it is estimated that 40,000 people in the United States will contract HIV. Half of those newly positive will be under the age of 25, young people who have grown up with the AIDS epidemic and the knowledge of how to protect themselves from HIV. Evidence increasingly illustrates that traditional safer sex messages are failing.
The epidemic is changing. Larger numbers of women, minorities and youth are now living with HIV, while activists, public health officials, social service providers and community outreach workers struggle to find new ways to reach these groups. A recent meeting of the Washington State Governor's Advisory Council on HIV/AIDS (GACHA) highlighted the ways in which these trends and statistics impact local communities. The advisory council invited people living with HIV and other members of the public to share experiences and suggestions for improvements of HIV/AIDS care and prevention.
The Governor's Advisory Council on HIV/AIDS was formed by an executive order signed by then Governor Booth Gardner on March 5, 1991. The full Council meets bimonthly and has about 24 members appointed by the Governor. The duties of the Council are to advise the Governor in developing sound state policies on the HIV epidemic, by reviewing recommendations about proposed and existing policies and legislation, identifying gaps in existing programs and services, and providing the governor with a forum in which to discuss issues related to HIV/AIDS. The latest council meeting, on May 15, 2001, was designed to give the council input from women, people of color and service providers affected by HIV/AIDS in western Washington. A similar public forum in Yakima last fall gathered feedback in eastern Washington.
Washington State Governor Gary Locke opened the Tacoma meeting, saying, "There is so much more to do in this epidemic. We need to connect with hard-to-reach populations . . . We have to eliminate barriers to care and information." Washington State Epidemiologist Maria Couregon then presented data on the growing numbers of minorities and women living with HIV and AIDS in Washington state.
Couregon compared the numbers of women and minorities affected by HIV in three different time periods. From 1987 to 1990, only 4% of people living with AIDS in Washington were women. More recently, the numbers of women have risen to 14% of AIDS cases reported in this state, and make up almost 18% of those newly reported to be HIV-positive without clinical AIDS. Nationally, women represent 30% of those newly infected.
Similar increases have been seen among communities of color. While African Americans make up only 3% of Washington's population, they now represent 18% of those testing positive for HIV in western Washington. On the national level, African Americans are just 13% of the population, but make up over 50% of those newly infected. The increases among Hispanics have been less marked, but are still significant locally and nationally.
Panels of HIV-positive women and people of color were then invited to offer testimony to the advisory council. The council asked panelists to share barriers to prevention and care, and to give suggestions regarding services that are either under-utilized or still needed. The feedback given added to a growing awareness that prevention and care services originally designed to serve a primarily white, gay male population in western Washington cannot simply be re-named or re-packaged to serve women, people of color and youth.
The first panel to address the council was made up of HIV-positive women. Many of the panelists stressed the need to consolidate services for people living with HIV, especially for women. One woman, calling it "one-stop shopping," said she wanted, "a building where I can put my child in daycare, walk down the hall and see my doctor. If I don't understand what she tells me, I can go knock on a door and someone will try and explain it to me. And if my doctor says I'm mental, I can go see a psychiatrist -- in the same building. And there's a room, with coffee and cookies, where I can go hang out and talk to other people there doing the same things."
Many of the women also noted the continued need for gender- and culture-specific support groups. "Women need women," one woman stressed, "I want to talk to someone who understands what an abnormal pap smear is, and my problems with my kids. These women-specific issues are very important in my life." Another woman shared the story of a friend from eastern Washington who said to her, "If I could just meet one other HIV-positive Native American woman, it would change my life."
While childcare and transportation were mentioned frequently as barriers to services, substance abuse and mental health issues also came up. Jesse Chipps, executive director of the BABES Network in King County reported that 67% of the HIV-positive women BABES works with have been diagnosed with mental illness.
The next panel to address the advisory council was made up of three HIV-positive men. They were a Mexican-American immigrant, a member of a western Washington Native American community, and an African-American man living in Seattle. When asked what was the biggest barrier to accessing resources and care, all the panelists alluded to the stigma that continues to be associated with HIV. "I was too humiliated and scared to go out publicly and seek any services," said one panelist. In small communities, he pointed out, especially Native American communities that may be more localized, "everybody knows everybody's business." "When the rumor got out that I was HIV-positive, it caused an uproar in my workplace. The feeling that people were scared of me because of this disease made it hard to work there."
The men also noted a need for integration of HIV and AIDS services with other social services. When asked about access barriers, one replied that even though he was in touch with other social service agencies, he was not referred to HIV/AIDS services. The Mexican-American panelist shared that his biggest barrier was speaking English as a second language. He noted that medical appointments are often pushed back when translators are not available for Spanish-speaking people. He also spoke about the need for better case management. "I would like case managers that are not just bilingual, but bi-cultural as well, so they can understand why we talk this way, why we behave this way, and why we think this way." He also spoke about the limits of prevention efforts aimed at HIV-positive people, "We need people who care and have time to sit down and ask 'How do you feel about using a condom?' not just throw condoms like candy."
The final panel, composed of providers of HIV/AIDS services, also offered concrete suggestions for improving prevention and care. David Richart of Lifelong AIDS Alliance emphasized the need for AIDS service organizations to hire individuals familiar with a community to conduct outreach: "A person who uses bath houses should be doing outreach in bath houses. We are also encouraging our agencies to work with peer outreach workers and hire people living with HIV."
Mary Saffold, of the Pierce County Health Department expressed regret for the experiences expressed by the panelists of color, "If there is still fear, shame and isolation, then we are missing something." She believes one piece of the puzzle is educating family planning clinics, community clinics, and private practice doctors about the HIV support system. "If [providers] don't participate, they will continue to avoid the problem."
To assist clients who rely on the state's AIDS prescription drug program, Herberth Aparicio of Pierce County AIDS Foundation suggested continuing education for healthcare providers and pharmacists about the regulations and eligibility for assistance programs. He said, "They sign the contracts [to provide care], but don't know the details, and clients are being underserved." Quinten Welch, executive director of STEP, added that the need to individualize outreach and prevention means, "more training for prevention outreach workers and care providers to make connections with individuals, to hear their needs. And more training on the simplest things, like how to talk about sex."
When the discussion was opened up to include comments from the audience, Chipps agreed with the need for continued evolution in care systems for people living with HIV. "In our effort to create really good systems, we have created systems that are almost unchangeable. We've been reluctant to say this is great, but . . . We need to turn to [people living with HIV] and say, 'You are the experts'."
Again and again, the need to find new, flexible and individualized outreach methods was recognized by panelists, council members, and those in the audience. There was also an emphasis on strengthening existing social service agencies within communities and helping them to include HIV/AIDS prevention and care as part of their services. It was also clear that more must be done to fight the stigma of HIV/AIDS in these communities if any of these new approaches are to work. One audience member added that basic awareness must still be raised: "I'm a person off the street, who just happened to hear about this meeting, but I didn't know about any of these agencies. I work in juvenile court, and many of these issues may be important to my work, but there is so much information I don't have."
For information about upcoming meetings of GACHA, contact Lynn Johnigk at the Washington State Department of Health, (360) 236-3420.
This article was provided by Seattle Treatment Education Project. It is a part of the publication STEP Perspective.
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