Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: SUNDAY, July 24, 1994 TAG: 9407250069
SECTION: NATIONAL/INTERNATIONAL PAGE: A1 EDITION: METRO
SOURCE: By JEFFREY FLEISHMAN KNIGHT-RIDDER NEWSPAPERS
DATELINE: LENGTH: Long
He laughs at the way people are. One girl said she'd heard his illness forced the government to take away his driver's license. Another invited him to a pool party and then whispered that he couldn't go in the water. He stays off Main Street, already having been the target of a chucked beer bottle and slashed car tires.
``They'd just as soon get rid of you,'' says Rick, once the busiest hairdresser in a little town burrowed in the Appalachian Mountains.
``We try to keep it a secret,'' he says, crossing his brittle arms, forcing his weak throat to swallow. ``My family's biggest fear is that my little nephew will have to live with this legacy. He wouldn't get invited to birthday parties. And my brother works in the mines. Coal miners are cruel, and I wouldn't want him to get into fistfights. Please, please don't use my name.''
In Appalachia, there is no meaner and lonelier way to die than by AIDS.
Much of the nation has put away its fear and prejudice of the disease, but in these rugged mountains, people like Rick are seen as a threat to a culture. AIDS is viewed by many as a strictly homosexual disease and an affront to the traditional roles this region has set for men and women. Hate has sprung from ignorance, and from eastern Kentucky to Southwestern Virginia there is a belief that God has left a deadly virus in hollows once rich in coal.
People with AIDS live in isolation and speak in hushed voices, checking their surroundings to see who may be listening. Many of them travel for hours to large cities because local doctors refuse to treat them. Some have prescriptions mailed in so local pharmacists can't spread rumors. One man in Kentucky had AIDS literature mailed to a post office box he rented two counties away from his home.
Members of a Baptist church in Southwestern Virginia turned away a woman with AIDS and then washed her pew with disinfectant.
``There are no AIDS organizations here, no counseling,'' said Ray, who like Rick would be interviewed only if his last name and hometown were not disclosed. Rick was beaten with baseball bats years ago when some men found out he was gay. ``I don't tell a whole lot of people, 'cause I'd get killed. I'd be walking down the street somewhere, and I'd get my brains blown out. I can live with HIV; it's just the other things that make it tough.''
The core of Appalachia is in the Bible Belt; many here say AIDS is a just scourge on homosexuals. Some institutions - including school districts and local governments - refuse to acknowledge that AIDS is a problem in rural America, even as it reaches increasing numbers of women. The disease also must take its place in line with many other social and economic problems that have beset the region since the decline of the coal industry.
This has led to scant education and no outreach programs in many counties where unemployment has reached 40 percent. The Appalachian AIDS Coalition in Virginia serves 114 clients in 12 counties on an annual budget of $5,000.
``There's so many other crying needs in Appalachia,'' said Sarah Jane Lee, president of the Appalachian AIDS Coalition. ``This is coal country. Every other day you pick up the paper, and 200 jobs disappear. So people with AIDS get overlooked and forgotten.''
Statistics show that AIDS in Appalachia is vastly smaller in scope than in urban areas. Health care workers and AIDS activists partly attribute the low percentage of cases to inaccurate reporting caused by patients' receiving care in other regions, some doctors' giving the disease another diagnosis to protect a family's name, and some patients' dying before ever seeking treatment.
``It is present in these counties, and it is growing unchecked,'' said David Mawn, director of AIDS Volunteers in Lexington, Ky. ``We have rural counties where testing and education is not happening. It's a shame, because we have a window to react to it before it becomes the proportionate level it is in the cities. I don't want to wait until it explodes.''
Dr. Ardis Dee Hoven, president of the Kentucky Medical Association, shares his fears. ``There's a potential for clustering [of AIDS] that can go undetected for years,'' said Hoven, who treats many of the AIDS cases in eastern Kentucky. She blames much of the problem on long-term care facilities turning away AIDS patients and a religious conservatism that abhors talking about sex and death.
``If I went to Harlan County in eastern Kentucky and said `condom,' I'd get shot,'' Hoven said.
``One woman told me she and her husband don't go on vacation to Florida anymore, because they're afraid they'll catch AIDS by sleeping in motels. I just about fell out of my chair.''
Doctors also have reacted to the disease with anxiety and prejudice. A 1993 random survey done by a social-work class at Eastern Kentucky University found that 12 of 20 physicians in the town of Richmond, Ky., would not treat AIDS patients. Two others would not accept AIDS patients on Medicaid.
Hoven acknowledged that some doctors were turning away AIDS cases because they feared they would lose other patients. But, she said, many rural Kentucky doctors are intimidated by an illness with which they have almost no experience.
Troy Townsend is used to being turned away. He and scores of other AIDS patients have returned to their mountain roots to die after contracting the illness in cities across America. These patients have added an extra burden on already tight resources and have shaken the pillars of the very culture that nurtured their families for generations.
``This town is typical redneck country people, and the presence of AIDS shatters that,'' he said. ``Even if they wanted to feel compassion, they couldn't, because it would shatter that image. They're raised as hard-working country men. If you don't fit into that mold, than you just don't fit in.''
A few years ago, Townsend was earning more than $30,000 a year at IBM. But AIDS has left him as impoverished as the county he's living in. He collects $400 a month and relies on Medicare, Medicaid and donations from AIDS Volunteers for his pills and doctor visits. Sometimes the money runs out before he gets his prescriptions filled.
Sara Robertson said she has been shunned by the school district and two churches since she returned home to Scott County, Va., one year ago, after contracting AIDS in Ohio. Her husband died of the disease in 1990, and Robertson has been HIV-positive for more than four years.
``I did a lot of educational talking about AIDS in Ohio,'' she said. ``But the school district here doesn't want me to talk about it. They said, `Don't tell anyone about it.' ... I almost died in March, and I called my minister and he came to visit. But once he found out I had AIDS, he said not to come back to church until he `worked on' his congregation about accepting me. He hasn't called back, and I haven't been to the church. Members of another church wouldn't even shake my hand. They put Lysol on the pew after we left.''
The Rev. Johnny Duncan, pastor of the Speers-Ferry Evangelical Methodist Church, acknowledged that he visited Robertson in March. He said he told her: ``I cannot reject anyone, but I cannot continue to let you come since you told me, unless I first tell the congregation. I've got to let the folk in the church know. ... They should be made aware of it because of protection. ... It scares people to death.''
Mawn, whose organization is starting outreach groups in eastern Kentucky, said the key to stemming AIDS in rural areas is to portray it as a community problem. Many of those with the disease have found refuge in their families, which are the core of Appalachian culture. But the larger community still regards AIDS as a big-city plague.
``... Much of the literature coming out of the cities just doesn't work here,'' Mawn said. ``In the mountains, graphic descriptions about sex are too aggressive. They have to be toned down. You have to make them realize their children's lives are at stake. Then they'll come around. But now they are scared and don't want to accept what's upon them.''
by CNB