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Living with HIV in Utah

As gay people over 40 well know, the 1980s and early 1990s were a terrifying time. In the early 80s, workers at the Center for Disease Control and Prevention diagnosed a baffling cluster of symptoms tumors and pneumonia in a number of gay men, mostly from Los Angeles and New York City and many of whom had recent sexual contact with other men.

Known then as Gay-Related Immune Deficiency, or “gay cancer,” this disease would later be renamed Acquired Immune Deficiency Syndrome, and it would devastate a generation of gay men until the advent of antiretroviral drugs in the 1990s turned AIDS and HIV, the virus that caused it, into a manageable life-long illness.

While growing awareness of the virus and public health campaigns helped to slow the virus’ spread in the 1990s, HIV/AIDS has resurged in the first decade of the new century — and not just in large cities like Los Angeles and New York. Since 2000, the Utah Department of Health revealed that 96 Utahns were diagnosed with HIV in 2008, up from 78 the previous year. In 2009, that number jumped to 112. More distressingly, the bulk of those cases are being diagnosed in men who have sex with men, and young MSMs in particular.

These statistics have frustrated and unnerved health organizations across the state from local health departments to the Utah AIDS Foundation and the People with AIDS Coalition of Utah. It is particularly upsetting to John Griffin, the performer behind local drag performer Nova Starr. Griffin, who has been HIV positive for five years, attributes the jump in infection rates to what he calls a sense of complacency in the community at large.

“I think people have become complacent about HIV because there are so many things going on in this world,” said Griffin, noting that awareness campaigns around diseases like cancer, while necessary, have had the unfortunate effect of leaving HIV/AIDS “in the dirt.” “And I also think [people] go, ‘Oh, they have such good drugs out for it now. People aren’t dying the way they used to.’… I have talked to friends who say, ‘Why is it so important to use condoms anymore? HIV is nothing new. It’s just HIV.”

The Younger Generation

While Americans in their later 20s and 30s may remember public service campaigns, television movies and even high school health classes that dissected the myths and drove home the facts about HIV/AIDS, Griffin thinks that society’s familiarity with it has bred a kind of contempt. And that contempt, he said, is not preparing youth in their teens and early 20s who have, ironically, never known a world without the specter of HIV. And without proper education, Griffin said that many 18- to 21-year-olds don’t know much about how the virus is transmitted.

“It’s something we’ve been talking about for a couple years,” agreed Stan Penfold, Executive Director of the Utah AIDS Foundation, which offers counseling, testing and prevention services throughout the state. “[Education has] become so challenging because in many ways, when the epidemic was new and big and scary, you had the press and everybody on board. It was something people talked about or at least were aware of. Today it’s possible that someone who is 18–20 hasn’t even considered HIV is around. They may have not gotten any education in school, including what the risk factors are. They don’t think they know anybody with HIV though they probably do, and if they do they’re living relatively healthy, fortunately, if they’re on meds.”

“I’ve had younger people that are making statements to me like ‘HIV doesn’t exist in Utah. We have the [LDS] church here and I don’t know anyone with HIV,’” he said. “The one real kicker for me is I’m just going to get it anyway so what’s the point of using condoms?’”

Griffin called such attitudes “so 1985.” He had the same words for the state’s gay and transgender community, which he said is not doing enough not only to educate people — and youth in particular — about HIV/AIDS, but to let them know how to access resources.

“The generation, we’re talking 18–21-year-olds, who are coming out are being exposed to this virus and they have no resources and they want to be quiet about it,” he said. As an example, Griffin mentioned a young friend who moved to Salt Lake City from rural Idaho after his friends and family rejected him for being HIV positive.

“He got here and tried to find HIV resources for younger people and there are none that he found,” he said. “And when I tried to refer him to these places [the Utah AIDS Foundation and PWACU] he felt uncomfortable because he was talking to much older men. He felt he had no one to talk to about it.”

“This is 2010, we should be having better HIV education and a better understanding of HIV,” he continued. “There’s a younger community in [Salt Lake City] that isn’t seeing the impact of HIV anymore. People who are older who have been exposed know what options are available for people with HIV. I can say I’m really lucky because my uncle Billy had HIV when I was growing up, so when I found out I was positive I knew I had to find certain resources.”

Stan Penfold shared Griffin’s concerns with the rising number of HIV cases in youth ages 25 and under and called targeting education efforts towards them “challenging.”

“How do you reach people who don’t think about HIV or don’t think they have a risk or don’t want to think about it?” he said. “It’s becoming more challenging because more people are having high risk behavior for all kinds of reasons, and like all other nonprofits right now we’re needing to do more and more with fewer and fewer resources.”

“In many ways we’re fighting more of a lack of education and a stigma than in the 1980s and 90s,” he noted.

Positive in the Beehive State

QSaltLake interviewed several gay Utah men living with HIV/AIDS for this story, some of whom have been recently diagnosed with the virus and some who have been living with it for years. Most received HIV through bareback sex — that is, sex without a barrier like a condom.

Many agreed with Griffin that the gay, lesbian, bisexual and transgender community in Utah, and in Salt Lake City in particular, needs to change its attitude about the virus and people living with it.

“Well, to a lot of people, HIV is still the gay disease and the drug addict disease,” said Erik Hartwell, who found out he was HIV positive two months ago while living in Buffalo, N.Y. “The general community only knows what they hear. I know many straight men who don’t even bother worrying about it, because they hear it’s hard to get when having sex with women. They feel so unaffected by it.”

QSaltLake photographer David Daniels said that while he thinks that Utah’s gay, lesbian, bisexual and transgender community “as a whole seems to be supportive” of people with HIV/AIDS, on an individual level, things are a bit different.

“I find a lot of people who assume that there are very few people in Utah who are HIV positive and are a bit surprised when I mention my status,” said Daniels, who estimates he has had HIV for “four or five years” and who is also a volunteer photographer for UAF. “I have friends who are HIV positive who have lost friendships because of their status. I find it completely stupid that people wouldn’t be a friend with someone who has HIV. “It is a pure sign of ignorance.”

“Having lived in Atlanta and here in Salt Lake City with HIV I would say that Salt Lake City had a long way to go in dealing with HIV,” said Keith Turner, who was diagnosed in 2005. “When I lived in Atlanta over all people seemed more educated about HIV. People were more open about having HIV. And the GLBTQ community did not have as many hang-ups around HIV. I still get the “I am sorry” and “poor you” response from people when they find out I have HIV. I never got that kind of response from people in Atlanta.”

“My experience living in Salt Lake has been a little different,” he continued. “There seems to be a lack of knowledge about HIV here by some people. Lying about your HIV status seems to be more common here,” though, he added, “That appears to be changing as more and more people are being open about their HIV status.”

Although HIV/AIDS is still stigmatized, most of the men reported that getting diagnosed did not alter their lives significantly thanks to antiretroviral drugs. A few, however, said that the disease helped them to make positive changes in their lives.

“The lady who gave me my test results pointed at my two kids who were playing on the ground next to me and told me that they needed me and if I would take care of myself I would be able to be there for them,” said Turner, who got tested at the Utah Pride Festival. “That was a turning point in my life.  Before that point I was not really a good father.  From that moment until the present my life has been about being a good father to my children.”

“I am a much more “positive” person,” said Brian Bernado, who has lived with HIV for seven and a half years. “The first few months were hard, but with the help of very good friends and my family I overcame it rather quickly. I am more healthy now than I have ever been and my outlook on life was changed for the better. The experiences and lessons learned due to becoming positive have made me a very strong person.”

Services, Please

Although some of the men said they had not yet accessed UAF’s services — either because they are new to Salt Lake City or have private insurance that pays for their treatment — those who had were generally happy with the services provided, particularly UAF’s testing services and food bank. A few of the men mentioned knowing about PWACU (and specifically Our Store, the thrift store it runs), but none said they had attended any of its support groups or participated in the social activities it offers for people with HIV/AIDS.

While Daniels lauded UAF for “giving it their all everyday,” he noted that he lost contact with the organization for awhile after testing positive because he wasn’t sure what to do next.

“I didn’t realize that you had to request a case manager,” he explained, referring to the individual who helps a person with HIV/AIDS access such things as medication and subsidized housing. “So I was pretty much on my own for two years until a friend mentioned I should ask for a case manager.”

As a veteran, receives his medical care from VA Medical Services. Thanks to the bad economy, however, he said that he often uses UAF’s food bank. He has also attended the organization’s men’s support group, which he found to be “very helpful.”

“Because of the group I did not feel so alone and I was able to better deal with having HIV,” he said.

Although veteran Danny Thomas also gets his medical care from VA Medical Services, he also appreciated the fact that UAF regularly offers testing, including services at the annual Utah Pride Festival.

“I would like to see more education to the younger gays,” added Thomas, who has lived with HIV since 1987. “I think they see this as a controllable illness and not a big deal if they come down with it. That is a scary thing to hear from young men.”

Griffin, however, said he didn’t find UAF’s services to be particularly helpful.

“In the five years [since my diagnosis] I can honestly say I haven’t benefited from the Utah AIDS Foundation at all,” he said. “I’ve been to a few of their counseling meetings, and I felt like I was walking into a pity party, for lack of a better term. I don’t want to point a finger at anybody who is actively doing things for the HIV community in this state, but this feeling has been expressed by other people I’ve talked to. When you go to these support groups it’s along the lines of you have to feel bad about having HIV. The first and foremost thing that comes out of my mouth is I’m living with this, I’m not dying from it. It’s like somebody who has lupus or diabetes. They are living with their ailment.”

Penfold said that the “pity party” atmosphere Griffin mentioned is easily explained.

“One of the challenges we frequently see with people who are newly diagnosed is just this kind of transition period of getting used to the idea,” he said. “It can be really traumatic news for somebody… part of what we try to do with the groups in particular is let people talk about where they are in that process so it can facilitate them moving along.”

Moving Along

As the 21st Century enters its second decade, slowing the spread of HIV back to mid-1990s levels is going to take a lot of creative thinking, said Penfold. On the one hand, he noted that gay culture has changed a lot since the early days of HIV/AIDS, making efforts that worked then moot now.

“The bars aren’t the same as they were in the 80s and 90s,” he said. “We don’t see as many people in the bars especially with social networking and people doing their social stuff online. We used to go to Club Axis [a now defunct gay club] when everyone went there on weekends and give out condoms. This was in the days when raves and glow sticks were popular, so we gave condoms out with glow sticks. People would just mob our outreach workers because they wanted the sticks.”

“I think the simplest solution to outreach is being very vocal and out about [HIV/AIDS],” said Griffin. When visiting San Francisco recently, he said that he was inspired by an innovative billboard campaign about the disease.

“There are these posters all over SF of local people, whether they had HIV or not, wearing a red ribbon saying, ‘HIV is me. HIV is you. Get tested.’ As a whole, I think the biggest solution is making those posters like they have in San Francisco, or making sure there are [condom] packets avail at sex stores here in town. Talk to Cockers and Cahoots and Mischievous and have fishbowl with condoms provided by the Utah AIDS Foundation.”

Griffin also said that outreach efforts would have to be made to groups that have traditionally been underserved, including women and “ethnic groups who have their own different stigmas around illness which make outreach hard.”

Overall, many of the men agreed with Griffin about being open.

“I am not running through the streets telling everyone,” said Daniels. “[But if] I meet someone who stirs my fancy I always bring that up before the first date or I will post my status on dating profiles.  I figure I need to break that news as soon as possible and people overall have been cool about it.”

“[Though], to be honest, I have yet to get over my own concerns about dating someone who is HIV negative,” he added.

And all of them encouraged Utahns of all sexual orientations not to give into the complacency and apathy about HIV that Griffin mentioned.

“If you’re going to have sex treat everyone as they are HIV positive,” said Thomas. “You never know who has it and who doesn’t. Having to take pills the rest of your life is not what you want to do. This can be prevented. Educate yourself and use condoms.”

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