AIDS Action Weekly Update Special Edition

HIV Prevention in Urban and Rural Settings

Prevention in Rural Areas: More Attention Needed

"It figures we find ourselves here on the bottom." This statement above was a comment made by a community-based service provider from rural Virginia during one of two roundtable discussions on the U.S. rural epidemic. The remark was in reaction to an 11th hour room change for the roundtable that literally placed attendees on the bottom level of the summit's space, floors beneath the center of activity. However, many individuals around the table viewed the situation symbolically: the needs of rural areas are consistently placed at the bottom of the country's HIV prevention priorities. "Who cares about Maine's 40 new cases?" a service provider asked rhetorically. "Ground Zero areas are getting so much attention that the epidemic has been allowed to flourish unchecked in [rural] minority populations in our states," added another. "HIV prevention has an urban bias -- for good reason, but HIV is no longer just a city problem," ventured a community planning group member.

Though the numbers of HIV cases in rural areas may be quite low comparatively speaking, one advocate stressed that the numbers are significant nonetheless because they are counted in human lives. Moreover, because rural communities are sparsely populated, the loss of one resident to disability or disease can have, and has had, profound impact on the entire community.

In rural areas from Maine to California, funds are in short supply for prevention and treatment. As a result, many health departments and service organizations are financially strapped and face a difficult paradox: while rural programs may reach fewer people, it generally costs more money for such programs to provide prevention and diagnostic services. Transportation to and from clients' homes was commonly cited as a high and labor intensive expense. In many regions, multiple staff members are needed to do what is essentially home-based care which requires them to provide in every household the same services that could be found in a clinic. But bringing care to clients is often the only way to reach them. In Alaska, there are areas so remote one can only get there by small-propeller plane.

Roundtable attendees also made the point that data collection in rural areas is a very difficult task -- and one that requires additional time and staffing. Moreover, more data are need now than ever before to secure government funding. The CDC's recently implemented Program Evaluation and Monitoring System (PEMS) will expand its data requirements to include information on risk behaviors that must be drawn from each individual who has been reached by a particular program and, cautioned one health department representative from Vermont, "If you want funds, you have to do it." She added, however, that it won't be easy.

In northeastern Connecticut, for example, there is a large population of migrant farmers, primarily from Mexico but also from the West Indies, one roundtable attendee volunteered. Within this community, there are factors that contribute to HIV transmission, he explained. Many of the men from this community are "active" with sex workers in the city of Willimantic and in the nearby state of Rhode Island. There is also "extensive substance abuse, primarily alcohol." In characterizing his challenge, he asked, "How do we get money to service these people? Conditions on farms are not great; people are leery of prevention workers, and it's hard to precise a number for who has been reached -- which places CBOs in jeopardy of losing funding."

In the rural U.S., building trust is essential to prevention work, many concurred. HIV is not always well understood in rural communities. As a result, there is often an irrational fear of HIV-positive people, which can lead to violence and isolation. One attendee working in Pennsylvania described the environment in his region as follows: "There is Klan activity and militia activity. There is also little prevention and lots of HIV infection." In this kind of climate, people can be reluctant to do anything that may lead people in the community to think that they have HIV. On this topic, roundtable attendees offered numerous anecdotes to illustrate the depth and severity of this problem. In West Virginia, one community-based organization had gone to a local mall and set up an information table. As an incentive, they offered cookies frosted with a red ribbon. No one touched them, fearing other people would think they were HIV-positive. In another community, HIV testing is provided in a yellow building. According to the prevention worker who recounted this information, people say they don't want to go "to the big yellow house" because of what people might think.

Despite the odds, prevention workers in rural areas have had some positive results, and a significant amount of time was used during the roundtables to exchange accounts of initiative that work in rural areas.

• In Montana, one community planning board member revealed that "Tremendous inroads have been made into the IDU [injection drug user] community because prevention workers weren't afraid to go out and talk honestly about it."

• In Vermont, one clinic was able to cut costs by having stipend outreach workers trained in oral testing do conduct test for an afternoon in the living rooms of area residents. In this way, they were able to get people tested who were afraid to "be seen" in an HIV testing clinic. In southern Vermont, anther program reaches women at high risk of HIV infections and offers a multi-stage, group level intervention. Designed to empower women, the program takes a holistic approach that covers issues such as the effects of racism, substance use, poverty and sexual abuse, as well as how to have safe sex and reduce the risk of HIV.

• In Louisiana and Virginia, prevention workers have identified HIV-positive spokespeople and mentors who are willing to provide information and support to people as they contemplate testing or treatment.

• In Colorado, a holistic model has been developed for gay men. The program builds confidence and self-esteem and provides men with an opportunity to network and discuss HIV in a safe and comforting environment.

While it was clear that there is still a great need to increase awareness and support of rural HIV prevention and the people doing the work, it was also clear that prevention workers were determined not to give up on their communities. In both roundtable sessions, there was some discussion of establishing a coalition to strengthen the voice of the rural United States. In the meantime, one attendee shared, "if baby steps is the only way we can do [prevention], then I'm taking those baby steps."

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