In 2011, a small cluster of men in rural Deschutes County popped onto the radar of county health workers. The men were young, often using methamphetamines and having sex with other men.
They came to the attention of the health department because some began to experience symptoms they couldn’t explain—until they took an HIV test.
Their cases are now part of what health officials say is a small, but concerning, spike in HIV cases Deschutes County and around the nation among young, gay men. It’s a knotty public health problem fueled by a lack of sex education, the “gutting” of HIV prevention programs, and a culture of fear around being outed that keeps people from seeking resources about safe sex.
“It was kind of ‘boom!’” said Susan McCreedy, an HIV specialist with Deschutes County Health Services, “And we were like ‘What’s going on?'”
The answer to that question is complicated, but at its core is the need for a reality check that HIV and AIDS is still prevalent, not just in San Francisco or Seattle, but here in Deschutes County, where at least 80 people are known by health officials to be living with HIV or AIDS and officials estimate that about 8 or 9 new infections occurred last year alone.
Not all of these people are gay and you should read our sidebar to learn more about what it means to have these diseases. But it’s the increasing rate of HIV among young men who are having sex with other men that has health officials concerned. The Center for Disease Control reports that HIV infections have been increasing in this population since the early 1990s, while infection rates for other parts of the population have been stable or declining. It’s a problem that can be traced directly to a misunderstanding of risk.
“There is a perception by a lot of younger guys, because they feel invincible, that there are drugs out there and I’ll be fine,” said Dan O’Neil, 57, a longtime resident of Bend who has lived with HIV for 32 years.
O’Neil, who spent several years as a Deschutes County HIV case manager, said this belief that HIV isn’t a problem is at the center of why young, gay men are contracting the disease in greater numbers than ever before.
“Some of us who’ve lived through it—I’ve lost over 100 friends, I lost my partner here, I’ve lived through the (AIDS) wars here—it’s really hard,” said O’Neil. “And a lot of those kids don’t have that history. They associate AIDS with older guys, not with them.”
HARD TO REACH RURAL GAY MEN
County health workers say that’s part of the story, but there’s more and it starts with a lack of education in schools and at home about how to talk about sexuality.
Safe sex is taught in area schools. In fact, all schools in Oregon push HIV curriculum from kindergarten through twelfth grade with age-appropriate materials. For instance, in the early grades students are learning about germs, by middle school they are learning about sexual practices and from eight been h grade through their senior year students are learning about how to have sex safely, according to a number of sources with the Bend La Pine School District and the Oregon Department of Education.
But teaching people how to have safe sex is not enough, said Tuesday Johnson, an HIV prevention specialist with Deschutes County. Young people are still not being taught how to talk about sex, including how to talk about what sexually transmitted diseases they may have and how to slow down a sexual encounter to give a chance for safe sex to enter into the situation.
“How do you negotiate condom use? How do you bring up testing?” said Johnson. “We wonder why this happens, but do we talk about how to have these conversations with our partner? It can be a very taboo situation.”
In addition to the problems of a misunderstanding of risk and a lack of education about how to deal with sexual situations, health officials said there is another problem unique to small towns in conservative areas, such as Central Oregon.
These upping rates of HIV have to do with a culture in the area that discourages people from being open about their sexuality. That means it’s harder to reach these people to educate them about safe sex practices.
“It’s obviously more underground in small town cultures,” said McCreedy. “You have to be able to reach people and educate them about how they can reduce their risk, but you can’t reach people if they are underground.”
These same people are horrified about being tested for HIV for fear they will be labeled as gay. That makes HIV more difficult to track. The effect of this stigmatization around HIV testing means people continue to have sex not knowing they have the disease, spreading it further and wider in the community.
“All that fuels the perfect storm for increasing infections,” said McCreedy, “and that’s what we are getting.”
RESOURCES ARE SCARCE FOR PREVENTION AND TREATMENT
HIV is not new in Deschutes County. The first year people tested positive for HIV here was 1985. For several years there wasn’t much support for these folks in the area. But by the late 1980s a group was coalescing to provide prevention education, testing and access to resources once people were diagnosed.
Mike Lovely, who is the president of the Southwest Bend Neighborhood Association, a long time Central Oregon resident and a gay man, was one of the founders of the group, which was called Central Oregon Aids Support Team. Over the 1990s the duties of the group were transitioned over to the county, and after some disagreements with county staff COAST shut down in 2000, said Lovely.
In the 1980s and 1990s it was even more challenging for people to be gay publicly, said Lovely, who moved to Central Oregon in 1978.
“It’s not as bad as it was,” he said. “They threatened to shoot me when I first got here.”
And while it has become less taboo to be gay and to seek HIV testing, the reality in Central Oregon is that it’s still dangerous to be out.
“People still feel afraid to hold hands,” said Lovely. So coming forward to take an HIV test is frightening—you never know who you’ll see in a waiting room.
And just like in the old days, the resources to prevent HIV are scarce. The majority of the money allocated by the federal government and the state for HIV prevention, testing and treatment are devoted to population centers like Portland, said O’Neil, who was frustrated by his time as an HIV case manager for the county by the lack of money they had to assist people once they knew they had HIV.
“We had someone who was in his garage for three or four years and we could never get him out of there,” said O’Neil. “You can imagine how your immune system is with that, and he was a straight guy and his parents lived on the other side of the wall.”
Today, the county is still struggling to pull together enough resources to effectively address HIV and AIDS here. Recent cutbacks at the state level have taken deeper and deeper dips into the county’s budget, said McCreedy.
“We got our prevention program basically gutted,” she said of the most recent round of budget cuts by the Oregon Legislature.
What that means for Central Oregon is that even as HIV rates rise, there will be fewer dollars to fight the spread of the disease.
“We are expecting to have more problems this year and into the future because of a lack of perception of risk,” said McCreedy. “It will continue to get worse if we don’t inform people at a younger age and if we don’t do something about the fear and stigma that goes on around HIV.”