Outcasts in the Country

By: Steven Gray
Washington Post, June 10, 2001

Rural AIDS Patients Find Little Comfort, Care in Communities




When Mahasin El-Amin falls ill, no doctor in St. Mary's County can treat her AIDS-related ailments. In rare moments of good health, she treks 30 miles north, to Calvert County, for care. Others drive two hours into the District, fearing that disclosure of their illness will mean social isolation.

Their fear, shaped by Southern Maryland's conservative culture, deepened by the jarring tales of others, does not exist without reason.

A woman asks the town pharmacist for the drug Crixovan, and he shouts, "We don't have your AIDS medicine here," embarrassing her. Another woman with AIDS, struggling to pay her rent, tells her landlord she has cancer, believing the truth would hasten her eviction. A throng of hecklers disrupts a meeting of a support group for people with the disease.

The stories of shame and discrimination are shared during another support group's monthly meetings, held in El-Amin's two-story house in Hollywood against a backdrop of vast acres of farmland. El-Amin urges her fellow AIDS sufferers to confront the disease, shatter the silence.

"That silence," the 46-year-old says, pushing back the thin locks hiding her plump face, "allows people to stick their heads in the sand and pretend the problems, this disease, do not exist."

Two decades after AIDS was first diagnosed in this country, public health experts say the stigma attached to the disease has lessened in urban communities, which account for more than 80 percent of the nation's AIDS cases. In rural enclaves, however, fear and ignorance linger, even as the proportion of new cases of HIV, the virus that causes AIDS, eclipses those of some metropolitan areas.

About 7 percent of the nation's AIDS cases are in rural areas, up from 6 percent in 1994, according to the federal Centers for Disease Control and Prevention. Maryland's rural counties account for 3.5 percent of its AIDS cases, a slight decrease from 3.6 percent in 1994, while the number in Virginia's rural counties has remained about 10 percent, according to health officials in both states.

The volume of AIDS cases long ago forced cities such as the District, New York and San Francisco to build institutions and support networks to help emerging infected populations and to try to prevent the disease's spread.

But in rural America, where primary-care physicians are often scarce, such programs rarely exist. Where they do, public health experts say, the infected and those at risk of becoming so seldom seek care, partly because of large distances between their homes and clinics and fear of disclosure about the disease.

"There's still some sense that AIDS is less a rural problem than an urban one. But that's never been the case," said Liza Solomon, director of Maryland's AIDS Administration. "The fact is, there is no county without AIDS."

Faced with a population boom and rising HIV-infection rates, Maryland public health authorities are doubling the number of AIDS clinics on the Eastern Shore and in the western panhandle from four to eight. The initial clinics, opened during the last two years, are staffed with physicians from Johns Hopkins University.

Officials in Virginia's Stafford and Fauquier counties have bolstered the level of AIDS prevention and treatment services for much the same reason.

Public health experts say the actual number of rural HIV infections may be larger than is known because residents are less likely than their urban counterparts to seek testing for the virus even as they engage in high-risk behaviors, believing their communities are invulnerable to the disease. They also point to the large numbers of migrant farm workers, such as those in the Appalachian region of Virginia and on Maryland's Eastern Shore, who are at high risk of contracting the virus because of their lifestyles.

But raising awareness in these rural communities, particularly among adolescents, is hampered by the reluctance of some school systems to candidly broach the subject of sex, much less AIDS prevention, experts said.

"You have kids experimenting with unsafe sex, religious traditions that don't allow for condoms and schools that don't allow frank discussions [about] sex. All those are ingredients for disaster," said Martin W. Gallagher, a Hagerstown doctor whose AIDS patients drive as long as 90 minutes to reach his office because he is among the few Western Maryland physicians treating patients with the disease.

The ignorance is not limited to schools. Not long ago, when Robert Griffin and his partner, Durrell, went to a Washington County pharmacy for the HIV drug Zerit, the pharmacist said he had never heard of it.

"It's pretty common," Griffin said of the drug, which slows the virus's growth. "The ignorance of this medication just blew me away. And this was the mainline pharmacist!"

Some residents in rural areas who contract HIV have misconceptions of their own about small-town life. "They have this feeling of invincibility, that they know what everyone else is doing and, of course, they don't," said Bill Yarber, senior director of the Center for AIDS/STD Prevention at Indiana University, who is among the foremost experts on the subject.

When it comes to the lack of local care, some rural doctors say there are too few cases in their communities to justify trying to stay abreast of a complex, fast-evolving disease. Others are hesitant to treat AIDS patients, fearing they will become known as the "AIDS doctor," said Colin Flynn, chief epidemiologist for Maryland's AIDS Administration.

Rhonda Norris, executive director of AIDS Response Effort in Virginia's Winchester County, said the agency's name alone frightens prospective clients, prompting many to travel 70 miles into the District, or to nearby West Virginia, for services so they won't be recognized.

"All those things that were stigmatized at the very onset of the disease are still very much present here," said Norris, whose agency manages about 50 HIV and AIDS cases in Frederick, Shenandoah, Page, Warren and Clark counties.

Dawn Carter, 25, of Front Royal, Va., became infected about eight years ago by a boyfriend who she later learned was aware that he carried HIV. She learned of her infection while serving a prison sentence -- and probably otherwise wouldn't have known about her illness until symptoms became severe.

"I figured it was something I shouldn't be concerned about, because . . . I wasn't promiscuous," said Carter, who travels 90 miles to Charlottesville for treatment.

"It was still at a time when there wasn't a whole lot known here about the disease," she said. "My only concern was that I wouldn't be able to have kids, that I'd die from it."

Since testing positive for HIV, Carter has had four children, none of whom have tested positive for the illness.

A half-decade ago, when El-Amin moved her family from the District to St. Mary's, she hid her condition from neighbors. Because of a lack of health care in the county, she drove into the District several times a month for treatment.

As the number of HIV and AIDS cases in Southern Maryland increased, the region's three counties built a network through which service is provided in Calvert County and monitored chiefly by Charles County health officials.

In some ways, the fact that she is not from St. Mary's and has no familial ties to the region allows El-Amin to be bold.

Once a month, she opens her home to the support group for people with HIV and AIDS. Occasionally, she allows those with no place to stay to live with her.

Her visitors are afraid of disclosing why they are there. One group member was approached by a neighbor, who asked, bluntly, "Do you have that nasty disease, too?"

Says El-Amin, walking in her backyard garden on a recent cloudy day, "You really can't stop people from talking, but you can remove their ability to use this as a weapon.

"My status is a weapon if I allow it to be," she says.