Rural HIV: Surprising Stats, Stigma & Sexual Behavior

Headed up the highway on a 60-mile roundtrip from his home in a small Vermont town, Jonathan Heins is on a weekly run to pick up the multiple drugs he needs to manage HIV. He’s been infected since the early 1980s, before these meds existed; he has no idea why he, unlike so many of his friends from the time, is still alive.

“I was told to get my affairs in order,” Heins says from his cell phone, “an easy job for me at the time. I had a few pairs of sneakers and some underwear. But I’m still alive.”

Now sober, married, a homeowner, things are better but not easy, living on disability and dealing with the physical and emotional complications of having HIV. What’s surprising about this drive is that there is a large chain drugstore in Heins’s town. They stopped carrying his medications, a decision he was informed of carelessly in line in front of his small-town neighbors.

It might seem counterintuitive but Heins is more comfortable making the long drive to a “mom-and-pop” pharmacy where the owners are friendly and give him a heads-up if he’s running out of refills. He feels such places want the business and so they bother to educate themselves.

“It’s surprising who can treat this with dignity and clarity,” he says. “Some people you think can’t, can, and some people you think can, don’t. It’s an amazing thing. You never know where stigma is or comes from.”

And that – understanding stigma as an attribute that conveys a devalued social identity – is the driving force behind the work of psychology professors Sondra Solomon and Carol Miller, who were recently awarded a $3.2 million five-year continuation grant from the National Institute of Mental Health for their research on coping strategies, sexual risk, and HIV stigma in rural communities.

Even in Kansas (or Killington)

The original $1.5 million grant application was initially denied on the grounds that it would be impossible to recruit enough participants with HIV/AIDS in a rural state like Vermont. The team quickly signed up half of the 200 people in that study and easily got funding. The next phase will follow 250 subjects over a period of years.

“The thinking is that we don’t have a big problem up here and we do,” says Solomon. “People view HIV as an illness that happens only in big cities.”

The official numbers for the state as of 2007, which captures only those who tested positive after 2000, are 217 people living with HIV and 234 living with AIDS. Those tested prior to the legislative reporting requirement, those tested in other states before moving to Vermont, and those who are positive but have never been tested, raise the number, Solomon estimates, closer to 800 at a minimum.

What interests Miller, Solomon, and their team is how these people cope and the impact their particular coping style has on their perception of stigma and on potentially risky sexual behavior. They do know stigma exists. A little less than half of the people surveyed indicated that something stigmatizing happened to them every day; on average, survey participants said they experienced stigma three times per week. The actual incidences of discrimination reported, however, were far fewer than people feared.