HIV PLAGUING RURAL CAROLINAS

Virus Also Affecting Significantly More Blacks

HIV is an increasingly disturbing problem in rural eastern Carolinas
counties, home to the states' poorest and least-educated people.

Health workers say they are struggling to fight HIV/AIDS, which
disproportionately affects blacks and, increasingly, young, poor black women.

The disparity is staggering.

In South Carolina, African Americans represent almost 80 percent of the
more than 17,000 reported HIV/AIDS cases even though blacks make up about
30 percent of the overall population. In North Carolina, which is 22
percent African American, blacks made up slightly more than 70 percent of
about 22,000 cases.

The reasons are complex and societal, and the solutions are difficult,
health-care workers say.

In rural areas, patients are spread out over hundreds of miles. Many don't
have cars to get to the doctor. They lack health insurance and education,
crucial to understand and adhere to HIV's complicated drug regimen. And in
many cases, patients keep their HIV status a secret for fear of being
ostracized.

Health workers say the disease spreads quickly when people don't -- and
sometimes won't -- use protection. "I guess it's denial," said Cathy
Johnson, who tracks HIV infections in rural South Carolina.

At a time when drugs are making it possible to manage HIV, health-care
workers face mounting barriers. Among them:

. Lack of money to help people pay for expensive HIV drugs. N.C.'s waiting
list numbered 701 on Aug. 5, the longest in the country, said a Duke
University HIV social worker. S.C. had a waiting list until last year, when
it won an extra grant.

. The threat of budget cuts in both Carolinas.

. Lack of understanding among the general public about how the disease is
spread and prevented.

It frustrates health-care workers such as Johnson, who works in Orangeburg,
Bamberg and Calhoun counties. The region between Columbia and Charleston
has some of S.C.'s highest rates of HIV infection and is one of the poorest
areas.

"It's not getting any better," she said. "We average eight new cases a
month. That's high for a rural area. For that eight, there's another eight
out there. It's like a pyramid."

I-95 Connection?

Bamberg County is a case study of rural HIV.When HIV appeared more than 20
years ago, health-care workers say many thought of it as a scary and exotic
disease primarily affecting gay men in cities.

Bamberg shattered that image.

In 1987, the community -- then population 18,200 -- made headlines when an
unidentified woman tested positive for HIV. When health officials asked her
to list sexual partners, she reeled off 60 names.

A concerned doctor called the local paper, which warned in a headline:
"Horror of AIDS Epidemic Hits Home." Thus began one of the Carolinas' first
cases of AIDS panic.

Residents swamped the county health department and local newspaper with
calls trying to learn the woman's name. It was kept confidential. Anxious
wives begged local police officers to follow their husbands.

Health officials set up an HIV clinic to serve patients in the Bamberg area
- -- the state's first in a rural area. But tiny Bamberg still has the
second-highest HIV/AIDS rate in the state. Richland, home to Columbia, is
first.

Some theorize that HIV infections spread south along the Interstate 95
corridor, which runs through eastern North Carolina and South Carolina. The
interstate may provide more access to intravenous drugs or encourage
prostitution.

By 1999, the Carolinas, Florida and Mississippi had the most HIV infections
in communities with fewer than 50,000 people, according to an N.C.
statistical report.

Nationally, the number of people contracting and dying from AIDS, the
disease caused by HIV, has dropped, thanks to drug therapies. But it has
dropped more slowly in the South.

Health-care workers aren't sure why the South is the epicenter of HIV and
AIDS. But they suspect it's related to poverty, lack of education and the
difficulty of finding adequate health care relative to other parts of the
country.

Bamberg's median household income is $24,000, the second-lowest in the
state. Bertie County, in rural northeastern N.C., has the lowest median
household income in the state at just over $25,000. It also has the highest
HIV rate, according to N.C. epidemiologists. Mecklenburg, the largest
county in North Carolina, ranks sixth.

Johnson, of Orangeburg, calls the patients "the 'uns' of the world": The
unemployed, the uneducated, the uninsured.

Linda Ashley, who directs a clinic serving York, Lancaster and Chester
counties in South Carolina, said the number of female clients has spiked in
recent years. Just five years ago, fewer than 20 percent of her clients
were female; it's now 49 percent, or 140 women. For example, between 1990
and 2000, the proportion of black N.C. women with HIV jumped 50 percent,
making women more than 27 percent of all reports. N.C. had reported 22,000
cases as of 2001.

Care for many female clients is often more complicated than for others.

"In most cases, she's heterosexual, she has a child, and she makes her
decisions on how she can take care of her children," Ashley said.

That means sometimes choosing between medicine and food.

Coming home to die

There's another force at work as well, said Trish Bartlett, a clinical
social worker for Duke University's AIDS clinic. Many patients are
diagnosed with HIV in other states and return to family homes in the
Carolinas. She estimates almost half of Duke's clients were infected
elsewhere and came home to North Carolina once they got sick.

That's what happened to Louise, an HIV patient from Orangeburg County who
requested anonymity. Louise's family moved to New York when she was a child.

A former drug and alcohol addict, Louise learned she was HIV positive
during a stint in rehab. The news sent her on a drinking spree that landed
her by chance back home in Orangeburg. "God is good," she said.

AIDS clinic workers found Louise, bedridden with tuberculosis and
pneumonia. She weighed 80 pounds.

That was 11 years ago. She sobered up and gained weight. The virus is now
almost undetectable.

Louise stayed in Orangeburg where she has extended family. But she won't
tell her relatives about her health. "My family is ignorant," she said.

She told of when an HIV-positive friend visited her relatives and used
their bathroom. When the friend left, Louise said her relatives said, "get
out the Lysol and clean the bathroom."

Confidentiality a need

Louise's reluctance to tell her family is common, workers say. Small towns
help residents when they are sick, but they also can shun people they
fear.Unlike in crowded cities where clients can remain anonymous, health
workers say many small-town patients fear getting help at the doctor's
office. They might run into a friend or relative.

Rural HIV clinics and agencies keep their locations quiet, fearing patients
won't return if someone finds out where they're going.

Stacey Williams, a case manager based in Laurens, S.C., near Greenville,
sometimes meets her clients in neutral places such as McDonald's or the
Bi-Lo parking lot.

"You will find small pockets of people who embrace (people with) HIV," she
said. "But the majority of clients haven't told their families they're HIV
positive."

AIDS education in rural towns is a tricky matter. The small-town South can
be conservative, workers say, and some people don't want to talk about
condoms and prevention. Residents are often shocked to hear AIDS isn't just
a city problem. This lack of understanding is a big barrier to fighting
rural HIV, Williams said.

The disease spreads quickly in small towns where a few people can infect a
larger proportion of the community. In one small town where she works,
Johnson said, two individuals are likely responsible for at least eight or
nine recent cases. "It spreads like wildfire," she said.

Money and people needed

Both Carolinas now have AIDS outreach clinics to bring care closer to rural
patients. But the job is frustrating, and it's heart-wrenching, said Ashley
of York County. Staffers try to provide support, or even just a hug. "It's
not unusual for a client to say, 'You're the first person to touch me in
months'," she said.

Clinic staffers in both states say they need more money to pay workers;
more outreach clinics; and more help for patients to buy HIV medications,
which can run $1,000 a month.

AIDS assistance comes mostly from the federal government, but it is
administered and supplemented by the states. Funding is based on a
complicated formula and how it is divvied out is often a sensitive
political issue.

Health-care workers are further frustrated by the possibility of state
budget cuts, which could affect the money used to supplement federal funds.

"It's horrifying," said Bartlett, who has lobbied state and national
leaders for more money. "This is an infectious disease. It is a disease
people continue to not understand the spread of. We are totally hindered in
our efforts to stop the spread of the disease."

Is there hope?

Clinic workers say they don't know, though they've noticed some positive
changes.

"I am beginning to see some churches talk about it," Ashley said. "But in
the mainstream South? In small communities? I don't know. I wouldn't stake
a lot of money on it."