Treatment Bypasses Isolated Rural HIV+ Americans

When Duane Quintana found out he was HIV-positive at 19, he took it as a diagnosis of certain early death. HIV/AIDS wasn't something he'd learned about growing up in Wendell, Idaho, a rural town with a population of less than 3,000. It was a big city problem that didn't happen to small-town folk.

It wasn't long after his diagnosis that Quintana, who was attending college in Phoenix, would move back in with his family. "It was 1999, but it might as well have been 1981 as far as our understanding and knowledge was concerned," said Quintana, now 34.

"It was a hard town to live in with the virus. It was fairly isolating," he recalled. Quintana would eventually move to the big city, Boise, Idaho, where he started speaking at high schools and filmed a documentary with his family.

He knew word would get back to his hometown sooner or later. Sure enough it did. One relative stopped attending family gatherings. Years later that documentary would be shown in classrooms throughout Idaho. The family member came around.

Although Quintana's experience living with HIV on the outskirts was almost 15 years ago, it's still a common one among HIV-positive Americans living in isolated parts of the country. Since the vast majority of America's HIV-positive population lives in metropolitan areas where there is access to specialty care, and where HIV testing vans are regular fixtures.

Nevertheless, 5 to 8 percent live in rural areas, according to the Journal of Rural Health. Most of them are in the South and remain largely overlooked by service agencies.

Harder to Hide HIV Status

Living with HIV in small towns presents its own unique challenges. Where everybody knows everybody, it becomes harder to hide one's HIV status. Outdated misconceptions about HIV are still prevalent in many rural areas. Even the local doctor may be uninformed about HIV. And where medical personnel are your neighbors, there's the fear that they won't respect patient confidentiality, especially in places where gossiping is one of the favorite pastimes.

Back home in Wendell, Quintana had to drive 100 miles one way to see his doctor. That's hardly unusual, said Chris Bidiman, HIV program director of Inland Oasis, an LGBT organization in Moscow, Idaho, that does outreach to some of the most isolated parts of the state.

"One of my clients has to drive four hours to go to the clinic to see a doctor. That's an eight-hour-plus day for a one-hour appointment," he said. "Because it's so rural and there are really small towns, a lot of individuals aren't going to see the local doctor because that doctor might be married to the pharmacist who's so-and-so's cousin and then everyone in town knows you're the HIV-positive person."

Tyvance Credit, a 15-year HIV prevention educator, recently relocated to Houston after doing outreach work in East Texas. "I noticed that location and transportation was a huge challenge that HIV-positive patients faced in the surrounding counties trying to get to the clinic for care," he said. "Many of the patients did not have transportation for whatever reason, so that meant they would have to disclose their status to someone they hoped they could trust and accept so they could have a way to go to the doctor. However, many times those relationships or friendships may fall by the wayside."

Studies have shown that rural gay men, or men who have sex with men, are at a significant disadvantage in preventing and treating HIV due to lack of access to resources, care, education and prevalent social stigma.

Bidiman told about what happened to one client who fell ill. "When he saw his local general practitioner," Bidiman related, "he double gloved and threw the tongue depressor in the biohazard bin."

Losing Friends & Family

In conservative parts of the country, HIV remains a distant, misunderstood disease. Sex education is limited to an abstinence-only curriculum; and most churches preach anything but acceptance toward their HIV-positive parishioners.

When Josh Robbins, a talent agent in Nashville, Tenn., blogged and posted YouTube videos about his positive HIV diagnosis in 2012, he got an email from the youth pastor in his rural hometown of Jackson saying it was a punishment from God for being gay.

"It hurt," the 30-year-old said. "Faith is a big part of living in the South and as someone who has grown up going to church, for a pastor to send that email two weeks after I came out as positive, that was a really tough thing."

Many of the people who have responded to his blog are living in rural areas or small towns who have told him stories about being kicked out of their living situations after coming out as positive. Credit saw a number of HIV-positive young adults get kicked out of their homes when their status became known.

"I've seen some of these kids turn to the streets and the Internet just trying to survive," said Credit, who started an online program called B.O.I.S. (Bois Outlook on Identity and Sexuality) to reach out to isolated LGBT youth. "They may start to have survival sex for food, shelter, money, or companionship. Many times in these situations they may not be concerned with taking medication because at the immediate moment, they are living their lives on a day-to-day basis."

Many HIV-positive people living in rural areas get their medications via mail order. A 2004 Ohio University study found that only 50 percent of rural patients take their medicine regularly. "In rural areas, it's very difficult to not only get people to get tested," Credit said, "but the stigma is very prevalent, which discourages people to not only get tested, but to also retrieve care."

Running Away From HIV

Understandably, people with HIV are not only reluctant to confide in their family, but in close friends as well. This creates a cycle where people don't know anyone with HIV. Many country folk would echo the blanket statement of Park Avenue society matron in Dominick Dunne's novel "People Like Us": "People like us don't get AIDS."

Despite being an activist in a big city, Robbins had many friends who claim never to have met anyone HIV-positive. Before he seroconverted, he might have been one of that number.

"Before, HIV for me was something that was a cause," he said. "I supported it as a cause, but was an arm's length away from it. I didn't feel that it could ever happen to me."

"We have a lot of people who think it will never happen to them," said Twyla Streibel, a caseworker in North Dakota. "They never get tested because they don't think it'll happen to them. Others are scared and they wait until they're sick."

When Robbins told his formerly inseparable best friend, "she ran out of the room and said everything would be fine. But it hasn't been," he added. "I've probably seen her three times in two years now. I think she was upset and disappointed in me, and because she also works in the entertainment industry in Nashville, maybe it became a liability for her reputation. It's been really painful."

North Dakota: ’Still a Lot of Stigma’

The entire state of North Dakota recorded only 254 people with HIV last year. But Streibel expects that number to rise with the influx of new residents drawn by the state's booming energy industry and increased drug use.

Streibel provides clients with bus passes and makes house calls. She gives HIV tests in parking lots, cars and office buildings in a metropolitan area of nearly 100,000 people.

"Grand Forks is a college town and I thought they'd be more open here, but people are scared to come out," she said. "They're scared to lose friends or their jobs. There's still a lot of stigma."

"I definitely know that we are under-educating our youth and we need to do more," added Lindsey Vanderbusch, who oversees the North Dakota Ryan White program where Streibel works. "We live in a conservative state, so we're limited to how we best approach the message -- to not overreach and offend anyone or provide information that parents don't feel comfortable with children receiving."

It's important not to overlook people who live in rural areas, warned Quintana, who now works for an HIV testing program in Chicago.

"I really feel like there needs to be more effort and acknowledgment of HIV wherever it is," he said. "Unfortunately the government is one of the most likely funding sources for HIV and AIDS work and they need to not just chase the numbers, but also work on trying to broaden the depths of who gets access."

Megan Barnes is a freelance journalist in Los Angeles. She regularly contributes to EDGE, San Pedro Today and was a founding editor of alternative UCSB newspaper The Bottom Line. More of her work can be found at www.megbarnes.com

This story is part of our special report: "HIV Minority Report". Want to read more? Here's the full list.