Indiana community's HIV outbreak a warning to rural America

Laura Ungar and Chris Kenning | USA TODAY

AUSTIN, Ind. — This small, close-knit community is a picture of rural America, with stubble-filled cornfields and a Main Street lined by churches, shops and sidewalks. It's also the unlikely epicenter of the largest outbreak of HIV, the AIDS virus, in Indiana's history — and a warning to the rest of the nation.

Public health experts say rural places everywhere contain the raw ingredients that led to Austin's tragedy. Many struggle with poverty, addiction and doctor shortages, and they lag behind urban areas in HIV-related funding, services and awareness. And the same lack of anonymity that gives rural towns their charm foments a strong stigma that discourages testing and treatment.

"The conditions that led to this outbreak could happen throughout the United States," says Jerome Adams, Indiana's state health commissioner.

"It's not only possible; it's probable it will happen somewhere else," adds Austin Clerk Treasurer Dillo Bush. "And ... it could get out of control very quickly."

Indiana's drug-fueled outbreak — 153 confirmed cases — prompted the federal Centers for Disease Control and Prevention to issue a health advisory alerting states, health departments and doctors nationwide to be on the lookout for clusters of HIV and hepatitis C among intravenous drug users and take steps to prevent them.

Austin, with a population of 4,200, now has a higher incidence of HIV than "any country in sub-Saharan Africa," says CDC Director Tom Frieden. "They've had more people infected with HIV through injection drug use than in all of New York City last year."

Treating those infected in the outbreak will cost $100 million, Frieden says.

"There could be many other communities with similar problems," he says. "This is really a sentinel event."

Van Ingram, executive director of the Kentucky Office of Drug Control Policy, says officials in states like his should pay close attention: "We'd be fools to think it couldn't hit here."

HIV is already festering in many rural places. Although no outbreak has reached the size of Indiana's, research reveals a high prevalence of HIV in some rural counties in the South, with more than half of cases outside large metropolitan areas in Alabama, Mississippi, South Carolina and North Carolina. Idaho had two rural HIV clusters in 2008, with a total of 15 cases linked to sex and drugs.

And a recent CDC report showed new cases of hepatitis C, driven by the same prescription painkiller abuse that sparked Indiana's HIV outbreak, more than tripled in Kentucky, Tennessee, Virginia and West Virginia between 2006 and 2012.

But while risks are rising, federal money for HIV prevention and care is mostly centered on cities — where the vast majority of HIV cases are still located. A 2013 study from the South Carolina Rural Health Research Center found that 31% of urban counties had a medical provider funded through the federal Ryan White program, which helps provide services for people living with AIDS, compared with 5% of rural counties.

Federal officials point out that by law, the money follows the cases. Ironically, though, the namesake of this program — a young man with hemophilia who died in 1990 at the cusp of adulthood — was from rural Indiana.

DANGEROUS RURAL RECIPE

Austin is located just off Interstate 65 between Louisville and Indianapolis, and its picturesque Main Street is its first impression. But just outside the town center are the more hidden neighborhoods of worn, wood-frame houses where abuse of the powerful painkiller Opana is concentrated.

City officials say the drug problem went largely unnoticed as it percolated for years. By the time CDC researchers visited this spring, it was startlingly grim. They reported that up to three generations in families injected drugs together, frequently sharing syringes, with addicts shooting up from four to 15 times a day. And there are no drug rehabilitation centers.

"If they put (an inpatient) rehab facility with a medical detox here, I bet you almost everyone would go," says longtime pain pill addict Bobbie Jo Spencer, 30, who so far has tested negative for HIV.

Drug cultures often thrive in economically marginalized rural areas without treatment centers like Austin, where one in five residents live in poverty, one in five have no high school diploma, and there's little to do, says Ruth Carrico, an infectious disease expert at the University of Louisville.

When HIV entered the picture, "circumstance outweighed our ability to deal with it," Bush says. "We just don't have the resources. It would be the equivalent of a sinkhole suddenly appearing and not having any way to fix it."

Like much of rural America, Austin has a dearth of medical providers. There's only one doctor, and a Planned Parenthood clinic in the county that used to provide HIV testing and referrals closed in 2013 as government funding declined. Across the USA, the National Rural Health Association says, 10% of all doctors practice in rural areas, where nearly a quarter of Americans live.

"The risk is real for many rural counties that now lack public health infrastructure," says Patti Stauffer, vice president of public policy for Planned Parenthood of Indiana and Kentucky. "Where there is no public health safety net to educate people about how to stay healthy, and no one to make relationships with populations who are engaging in risky behaviors, the potential for health crisis exists."

Transportation problems compound the issue, experts say, because people are less likely to drive long distances for testing or care, especially if they don't have reliable vehicles or money for gas. Rural residents also lack the awareness that comes from having HIV-related services, or prevention programs such as needle exchanges that tend to be located in urban areas, in their midst. They are less likely to know, for example, that HIV can be controlled through medicines that reduce viral loads so that it doesn't spread as easily to others.

"There's a literacy level about HIV and about drug use and safe injection in urban areas. … People are aware of the dangers," Adams says.

City dwellers also face less stigma, which in close-knit rural areas "prevents people from getting tested, going for care and sharing their status with their partners," says Lanita Kharel, executive director for AIDS Alabama South. "So the infection continues to spread."

MONEY MATTERS

With concerns growing about HIV in rural America, some public health experts and activists say more of the $3.1 billion in federal HIV/AIDS funding needs to be spent there. Currently, the Kaiser Family Foundation ranks Indiana last among states in funding per person living with the disease — $2,453 here compared with a national average of $3,370.

Historical funding streams "have systematically led to neglect in rural areas," says Janice Probst, director of the South Carolina Rural Health Research Center. "HIV rates have been going up in rural areas … (but) there's an exclusive focus on the largest public health agencies."

Jennifer Kates, Kaiser's director of global health and HIV policy, says the complexity of the funding makes it difficult to say exactly which portion goes to rural areas and which to cities, and federal officials say they don't separate it out that way. But everyone acknowledges rural areas get much less.

"We give money to cities and states and they distribute it based on what their needs are," says Laura Cheever, associate administrator for the Ryan White Program. Officials say there are no plans to change how funds are allocated to urban and rural areas.

Carolyn McAllaster, director of the AIDS/HIV and Cancer Legal Project at Duke University Law School, says it's fitting the bulk of the money goes to urban areas because more cases are there. "But you need more funding that's more targeted to these rural areas," she says, "or you're going to have a situation like Indiana."

That's especially true against the backdrop of reductions since the recession to some state public health departments, says Georges Benjamin, director of the American Public Health Association, adding that "rural public health is leaner than the urban settings, so cuts disproportionately impact them."

The bottom line, several rural health experts and HIV activists say, is that rural America can't be ignored. Amy Elizondo, a rural health association vice president, says "it's a major travesty it takes an outbreak like this" to raise the issue in the public consciousness.

Meanwhile, the CDC recommends all health departments and health care providers take steps to prevent, identify and respond to outbreaks. And Indiana officials hope others can learn from their response, which includes opening a one-stop shop with HIV testing, substance abuse treatment referrals and a temporary county-run needle exchange. A just-passed state law allows all counties here to set up similar needle exchanges if they can prove an HIV or hepatitis C epidemic exists.

But experts, HIV activists and Austin residents say investing in prevention is far preferable to dealing with outbreaks.

"If you're not investing in public health at all levels, these kinds of things can go on," Carrico says. "Even a small community needs public health. Small communities can have huge problems."

Kenning also reports for The (Louisville) Courier-Journal. Contributing: Liz Szabo, USA TODAY.



