Extra Burdens for Rural HIV/AIDS Patients

Even as the spread of AIDS into small towns escalates, HIV-infected patients who live outside urban areas continue to confront significant obstacles to effective care.

Newer drug "cocktails" and other treatment interventions are steadily prolonging the lives of persons with HIV in US cities. However, social stigmatization and limited access to health care systems can reduce the benefits of aggressive approaches to AIDS for people in rural areas.

"Certainly, the number of rural cases is increasing," says David W. Seal, PhD, a Medical College of Wisconsin Assistant Professor of Psychiatry who works out of the College's Center for AIDS Information Research (CAIR). "In Wisconsin we're seeing rising incidence in smaller towns and cities.

Dr. Seal and several other CAIR and Medical College researchers have in recent years conducted focus groups and other studies among HIV-infected persons to explore the differences in care between urban and rural settings. The projects have all centered in one way or another on finding innovative strategies to meet the life-care needs of rural residents who have or are at risk for HIV infection.

Stigma a Bigger Factor
"We've found several issues at play," says Dr. Seal. "First, in smaller communities you have a lot more stigmatization against being gay, so things tend to be more closeted. In Milwaukee there are places where young gay and lesbian youth can go to be in an open and safe environment. But these forums don't usually exist in rural areas. There is inherent risk in just the lack of safe spaces for people to go for positive relationships. We also see less intervention and prevention efforts directed toward rural areas, in part because they tend to be more conservative and not as open to sexuality education and safer sex education."

Because of those societal conditions, Dr. Seal said, people in rural areas simply aren't getting as much information about HIV/AIDS as people in central city areas. "We often see fewer resources available in small communities," said Dr. Seal. "Proportionately it may be the same, but if you have a budget for a town of 500 people compared to a budget for a city of one million, the amount of money and exposure is going to be greater in the bigger area."

Some of the factors that inhibit care in rural areas hold true for individuals seeking any type of medical treatment, Dr. Seal noted. These include long distances between homes and medical facilities and shortages of doctors, nurses, psychologists, counselors and social workers in rural areas. Less-supportive work environments and fewer available jobs can also mean fewer people with health coverage in general.

Fewer Doctors, More Isolation
The "closet" mentality can exacerbate general health care access difficulties among small town HIV-infected people. "Often times risk behavior is much more closeted and less safe," said Dr. Seal, "and then once people are infected there are those barriers to getting testing and treatment.

"We can talk about confidential and anonymous testing, but if you're in a small rural town with one medical provider it's much harder to maintain that confidentiality, even if the medical provider is very up-front. Or you may get all of your medications through one small central post office. There are a lot of barriers to the anonymous, confidential service linkage that an HIV-positive person in Milwaukee can get, for example."

Nearly all doctors who specialize in the treatment of HIV are located in cities. Quality of life for HIV-infected rural residents is potentially worse, Dr. Seal said, often for reasons that involve a lack of person-to-person contact both at the medical level and at the personal support level.

"Once a rural person is infected they might be much more hesitant to seek services because it's going to be harder to keep the disease private. In a small town there can be a lot more ostracism, and nearly always there are a lot fewer support groups. The sense of isolation is very high."

Recommendations for improving the care and quality of life for rural persons with HIV/AIDS, from papers co-authored by Dr. Seal and others, include conducting support sessions by telephone, helping patients identify life-care services in their area, using telecommunications to provide rural patients with information about contemporary treatment regimens, and assisting them in developing and maintaining more intimate social support networks.

Outreach and Education Efforts Expand
The Aids Resource Center of Wisconsin (ARCW), community-based lesbian, gay, bisexual and transgender youth groups, and state and local health department programs are beginning to show some reach into smaller communities, Dr. Seal notes.

Youth groups operate in Racine/Kenosha, Eau Claire, LaCrosse, Superior, Wausau, Appleton, Rock County and elsewhere. Some rural residents attend support group meetings in Milwaukee, and many of the care and treatment case managers for ARCW serve as community conduits for HIV information in rural areas. A CAIR project to work with Native American institutions in rural areas is in the planning stage, and current efforts include outreach to recently released correctional inmates who return to small communities in southeastern Wisconsin.

"One of the challenges in doing rural HIV/AIDS prevention is the tendency to be very generalist," said Dr. Seal. "And we know that just sending out general messages doesn't work. Prevention needs to be targeted and tailored to specific populations. But if you only have three openly gay people in a town it's kind of hard to start a program for gay men.

"Right now I think HIV/AIDS work in rural areas is really hit and miss. There are some really good rural programs in pockets of the US where community-based efforts have been strong, and other pockets where there just isn't any reach at all."

Reaching youth will be critical to stemming the tide of HIV/AIDS in rural areas in the near future, Dr. Seal says. "If you talk to inner-city kids now, there certainly is an awareness of HIV and an increase in protective behavior versus five years ago. I don't think you necessarily see that in large pockets of rural areas that are still characterized by high teen pregnancy rates, and where we've certainly seen a huge increase in the last five years in injection drug use, meta-amphetamine use, rave parties. When disease gets into those social circles, all of the right conditions are there for HIV and sexually transmitted disease outbreaks."

Dan Ullrich
HealthLink Contributing Writer

MCW Health News presents up-to-date information on patient care and medical research by the physicians of the Medical College of Wisconsin.