"Out there," you have to travel all day to get to a decent doctor. If your neighbors find out, you could be run out of town. Your only HIV positive buddy was diagnosed in the ER. Welcome to AIDS in the heartland.
Jeff Palmer half-suspected he was HIV positive in the mid-'80s, when doing time for robbing a Wells Fargo Bank. He had shot up drugs and was having health problems and weight loss. But the federal pen wasn't exactly a friendly place to get tested. "At that time there was a lot of ignorance and fear, and that led to violence," Palmer says. "I saw people who were suspected of being positive coming out on stretchers or in body bags." The Chicago native was released in early 1989 for cooperating with authorities and ended up in the witness-protection program -- in Cheyenne, Wyoming (pop. 53,011). There, while working the rails for Union Pacific, he tested positive. Palmer eventually went on to found an AIDS advocacy group, Wyoming: Positives for Positives, out of the back of his trailer. But it was two years before he met another person with HIV.
More than 47,000 Americans with HIV live in rural areas -- defined as any place with fewer than 50,000 folks. That's fewer than 10 percent of the nation's total, but many of them remain as isolated as Palmer was in Wyoming 10 years ago. Nearly half, according to a 2000 study in The Journal of Rural Health, returned home after testing positive in the big city; others got HIV right in their hometown, proof that the virus has found its way into the heartland. With sex education less common in rural areas, and only 60 percent of rural teens using condoms, a little HIV can go a long way. A study published in April in The American Journal of Public Health found that African-American women in rural areas were twice as likely as their urban peers never to have used condoms. In other words, the misconception that small towns are safe from HIV has ensured that they are not.
For HIVers in the hinterlands, it's still the bad old days of AIDS. The chances of finding a doctor who knows the basics of HIV management may be slightly better than in the '80s, but by every measurement of health -- from access to testing and treatment to rates of sickness and death -- city slickers have it much better than their country cousins. A federal funding formula that prioritizes AIDS epicenters, combined with rural state legislatures hostile to or ignorant about AIDS, leaves little in the way of resources in all but the most exceptional states. A 2001 federal study found that while three-quarters of urban HIVers in a physician's care were on HAART, little more than half in rural care were. When you add the number without a doc, rural HIVers are, on average, three times less likely to receive HIV meds than positive urbanites.
Country folks often avoid medical care, or even getting an HIV test, until they're very ill. Or they travel two or three hours for doctor's visits -- all to protect their place in communities where confidentiality is as fragile as AIDS stigma is powerful. Not that they have many health-care options. Only one in 10 U.S. doctors practices in rural areas. A 1998 study found that nearly a third of Utah's doctors said they would break the law by turning away a person with HIV -- likely frightened, says Palmer, "that they'd scare other patients away." Of those who would deign to treat, most lack experience and expertise in the fast-changing art of HIV care. According to a 2001 federal study, 38 percent of rural HIVers were seeing doctors who had treated fewer than 10 patients with the virus -- hardly a strong track record. (Only 3 percent of urbanites had docs this green.) "These are mostly family physicians, and they just can't provide the level of care that people with HIV need," says Beth Stringfield, executive director of the Piedmont HIV Health Care Consortium in Durham, North Carolina (pop: 187,035). "They can sometimes do the first round of antiretrovirals, but as soon as someone starts to reject their first combination, and you have to get into the technical side of treatment, they generally don't have the expertise."
When Palmer first arrived in Cheyenne, newly diagnosed HIVers were routinely referred to family-practice clinics where, he says, doctors in training were "on such a learning curve that it was a disservice to their clients." Working with Positives for Positives, Palmer intervened: He identified the two doctors in the state who had substantial HIV experience and upended the county referral system. Now, he says, these two docs -- one in Cheyenne, the other 180 miles away, in Casper -- "are probably treating the bulk of HIV clients in the state."
Many rural health-care professionals also seem not to know or care about the social consequences -- for HIVers -- of disclosure, casually violating patients' privacy in small towns where there's, say, one doctor to write prescriptions and one pharmacist to fill them. On eastern South Dakota's remote Yankton Sioux Reservation, such breaches of confidentiality have devastated several HIVers, says Charon Asetoyer, executive director of the Native American Women's Health Education Resource Center. Witnessing their community turn people with HIV into pariahs has discouraged others from seeking testing or care. "It's especially hard when your neighbor or someone in your family works at the clinic," Stringfield says. "It really cuts off the options that you have."
With HIV-savvy doctors so far-flung, a routine checkup can be a full-day affair. Michael Christensen, who lives near Pocatello, Idaho (pop: 51,466), has been traveling 162 miles to see his doc at a Salt Lake City VA hospital for 15 years. It's wearisome but worth the trouble. "We really don't have many knowledgeable doctors," Christensen says. "Even in areas where we do, people with HIV are reluctant to access local health care because they don't want their families to know." Instead, like Christensen, they hit the road, often traveling to other states for care. A surprising number of HIVers who came home to the country invest considerable time and expense to fly back to their city doctor, and have their old urban pharmacies mail their meds.
The Rural Rundown
86 -- Average number of miles HIVers in the rural South have to travel to see an infectious-disease doctor
80 -- Percent of increase in rural AIDS cases from 1991 to 1995
70 -- Percent of HIVers in the rural South who are African American
66 -- Percent of high-risk exposures to HIV that occur in rural areas
60 -- Percent of Southern women with AIDS who were infected through hetero sex
59 -- Percent of rural HIVers who reported moderate or severe levels of depression
50 -- Percent of rural HIVers on HAART who reported having missed one or more doses in the past week
38 -- Percent of rural HIVers who considered suicide in the course of one week
10 -- Percent of HIVers in the rural South who were refused care by a physician
That is, those who get into care at all. Several states, such as North Carolina and Georgia, have large numbers of Latin American immigrants who work the fields -- many of whom, separated from their families, may take risks with sex or drugs, while lacking basic knowledge about HIV transmission. "People who are undocumented are afraid to come in for testing or treatment for fear of being denied citizenship," says North Carolina's Stringfield. Many never see a doctor until a serious infection lands them in the emergency room. "It got to a point," says one Alabama advocate, "where we were meeting with ER folks trying to figure out how to deal with it."
HIVer Russell Oglesby, executive director of the Amethyst Project, an AIDS service group in southeast Georgia, drives out to farms to do migrant-worker outreach. "We go right out into the fields to distribute condoms and prevention information and help arrange testing," Oglesby says. Without this aggressive approach, says Kathie Hiers, executive director of AIDS Alabama, "by the time people come in on their own, it's at the point of helping them get their emergency needs taken care of so they can pass away."
In Alabama things aren't any better. One-third to one-half of the state's HIVers have no medical care. More than a few live and die without ever getting tested, or even being counted as AIDS casualties. "When people don't have food to eat or a place to live, do you think they are going to be worrying about their bodies?" asks Hiers. "We have people in the countryside who are living with dirt floors. Getting them into care is enormously difficult." AIDS Alabama sends its staff out into the state's 35 poorest counties, to beauty shops and mom-and-pop stores, jails and back roads. Hiers tells the story of one outreach worker who found a family in remote Choctaw County whose situation would not be out of place in sub-Saharan Africa. The mother and two of her daughters, ages 19 and 21, had HIV, while the two youngest children had never been tested. The family was living in an unheated shack, the 19-year-old huddled over the gas stove with pneumonia. "They had no idea where to go for services," Hiers says. "The 19-year-old died, but we were able to get the rest of the family into care."
On balance, this qualifies as a success story, since even when HIVers do brave exposure to access care, the services are often sorely lagging. "We're caught in the double bind of not having large enough metropolitan areas to qualify for Ryan White money, but having a high rural infection rate," says Hiers. Alabama simply doesn't have enough funds to handle the local epidemic. Its entire HIV education budget is $500,000, and, says Hiers, "we've had an ADAP [AIDS Drug Assistance Program] wait list above 100 for as long as I've been in the field." According to Joan Goschke of Positive Approach, a Rapid City AIDS agency, South Dakota provides no matching funds for Ryan White monies -- which are "pitifully small anyway, since people won't get tested, and nobody will acknowledge we even have AIDS here." And on the reservations, Asetoyer says, Indian Health Services, the sole source of HIV care for poor Native Americans, is severely underfunded.
In fact, the five states where a new ADAP enrollee faces the biggest chance of a having to delay treatment are all rural ones. Georgia, where more than 10,500 PWAs make their home, has the dubious distinction of the nation's longest waiting list, 700. No. 2 is North Carolina, home to almost 5,000 PWAs, whose list swelled to 518 last summer after cutbacks. Oregon, with more than 2,000 AIDS cases, has 300 waiting for meds; Alabama, with 3,300 PWAs, has 222; Maine, with 464 PWAs, has 24. As of July 30, five other states were reporting restriction to access; more may do so soon. (A major grass-roots campaign is underway pressuring Congress to support a $162 million increase for ADAP. Call Bill Arnold, of the Save ADAP Committee, at 202.588.1775, or e-mail him at firstname.lastname@example.org.) "I don't know how we can follow the federal mandate to get people into care," says Hiers, "when we don't have any additional dollars to serve them with and President Bush wants to flat-fund Ryan White."
As the economy increasingly heads south and rural states face severe shortfalls, AIDS funding is an easy item for elected officials to cut. And tight belts aren't the only pressure on AIDS budgets. "Local government officials are often right-wing, prejudiced and unwilling to deal with the issue," Jeff Palmer says. "It takes lobbying by people with HIV to educate state officials and make sure people with the disease are part of the funding process."
But building a rural PWA movement is not easy, given stigma straight out the '80s, when, say, the rural Florida home of three hemophiliac boys who had HIV was burned to the ground. HIV positive mom LaWanda Bridges recently became an activist with AIDS Alabama, but getting there was a long row to hoe. The army vet was first diagnosed in Houston in 1987, when she was addicted to crack and living on the streets. In 1996, when she found out that her mother was dying, Bridges moved home to a small town outside Birmingham. But "a couple of weeks after being there," she recalls, "my family rejected me because of my HIV status and I had nowhere to turn." AIDS Alabama eventually helped hook her up with treatment, prenatal care, rehab and housing. But then the cycle repeated. She and her partner began to fight, and when she told him to move out, "he pressed charges saying I had tried to give him AIDS." Soon detectives were asking questions, in the process telling the entire town that Bridges had HIV. "Even my next-door neighbor was real nasty," she says. "Nobody would even speak to me." Finally, last March, she settled into AIDS Alabama housing, "where I could be around people who understood me."
It's this kind of prejudice, says Carmen Julious, executive director of Palmetto AIDS Life Support Services in Columbia, South Carolina, that frightens people away from care and support. "The biggest problem for rural people with HIV," she says, "is isolation." A March 2002 University of Iowa study found a troubling pattern: Rural gay men with HIV had much higher levels of depression than their urban counterparts, and the less free they felt to talk about HIV, the worse the depression.
Jeff Palmer, who traveled widely in his old job working for the railroad, says, "What helps morale the most is being in touch with someone else who has HIV, but a lot of people with HIV in rural areas just don't have any support. People who are scared to death to disclose are even worried that they might be recognized in a support group."
Despite these obstacles, rural AIDS service organizations are growing, and so is advocacy. Groups like Palmer's Positives for Positives run on a shoestring -- he brings in less than $48,000 a year in donations -- by way of creative fundraising, such as his HIVer-made arts-and-crafts storefront. Some rural agencies have set up Internet chat rooms to create community where distance and isolation prevent face-to-face contact. And even in the Deep South, LaWanda Bridges and some 300 other HIVers donned red ribbons and descended on the Alabama capitol last year to meet with legislators. "It makes an impact," Hiers says. "When we come to them for funding, they can't say we don't have AIDS in Alabama."
Nowhere has activism had a greater impact than in New Mexico. Despite the usual rural plights of poverty and isolation, says Don Torres, head of HIV and hepatitis programs at the state's department of public health, "consistent appeals by HIVers for HIVers have built excellent support from the state legislature. And that has led to innovative programs." New Mexico's medical facilities offer one-stop shopping for HIV services. A team of trained HIV nurses make home visits to residents who may live as far as 150 miles from the nearest HIV doc. And the state also runs one of the nation's few mobile needle-exchange units.
Such visionary services are not completely unheard of elsewhere, but they don't come cheap. While most rural states match federal Ryan White contributions, if at all, at around 25 cents on the dollar, New Mexico gives $1.50. In Hawaii, the state department of health trains needle-exchange clients to do outreach, including one-on-one swaps, in rural Hawaii. Martha Tanner, MD, an infectious-disease specialist, established a clinic in Pocatello, Idaho, where she trains family practitioners in HIV basics and serves 40 patients. Some states have solved the problem of rural doctors' lack of HIV training through telemedicine. In Macon, Georgia, for example, the nurse at a satellite clinic can present a patient through live video to a university-based HIV specialist, performing physical exams in real time.
HIV treatment may have advanced by a light year since the '80s, but AIDS attitudes and access to care in the heartland have moved only glacially. "Things have improved," says Jeff Palmer, "but it's not going to happen in a weekend." Just last year, he recalls, a congregation in a small Wyoming town bodily expelled a woman from their church -- not because she had HIV, but simply because her foster child did. On the other hand, Palmer's Positives for Positives newsletter now reaches physicians statewide, chipping away at ignorance and fear. His organization will soon launch "bar hours," staying open Fridays and Saturdays till midnight, and will spread the word about HIV testing and care in domestic violence safe houses, homeless shelters, soup kitchens -- even to train-yard hobos. This approach, of course, has a flavor of rural hospitality: Outreach workers will offer coffee and donuts along with HIV tests and needle swaps.
Research assistance: Adam Bible, Josh Sparber
Lost in the Woods?
For nationwide referrals for rural HIV care and support, call the Minnesota Rural Aids Action Network: 800.966.9735 or www.raan.org. Or browse state-by-state listings of AIDS service providers at www.thebody.com.