By David Wilson
HISTORY + THE REALITY
Noah Simes never suspected he could be HIV-positive until, at 22, he developed a symptom that wasn’t going away.
Simes, a 24-year-old theater artist living in Arlington, remembers feeling multiple canker sores develop on the inside of his mouth. They were uncomfortable, and they were persistent.
“When one would go away, another would come,” he said. Simes performed a quick Internet search on canker sores, feeling a pang of horror when the search returned with mentions of HIV.
After a monthlong, emotional back-and-forth, emboldened with encouragement from a friend, Simes decided to get tested.
He didn’t have HIV. But almost two years later, he hasn’t forgotten the paralyzing fear. It’s the same fear that first ignited within gay and bisexual men— a group disproportionally affected by HIV— decades ago.
Libby Bouvier has been volunteering with The History Project, formerly known as the Boston Area Gay and Lesbian History Project, for over 30 years. She remembers the fear as it first swept through the city.
“I remember having History Project meetings, and that’s all we’d talk about— what is this? Because we didn’t know,” Bouvier said. “We knew what everybody else knew, which was in the paper.”
Bouvier spent several years collecting personal interviews and indexing LGBT publications to build an exhibition titled Above + Beyond: Our community responds to HIV/AIDS. The exhibition zeroes in on progress made in Massachusetts over the 25-year span of 1981 to 2006.
The years 1981 and 1982 are often considered the “starting point” of HIV in the United States, but Bouvier said that there are records detailing a “strange illness” men were experiencing as early as the 1970s. She said that by 1982, the illness had become noticeable in Boston.
But even 30 years later, and after extensive reporting and research, Bouvier said that there are still people taking risks with their sexual behavior. “I don’t think you can ever say that you’re totally safe,” she said. “Even those of us who think we are totally safe because of our particular lifestyles, I don’t think so.”
STIGMA + ATTITUDE
New York City-based freelance journalist David Duran was diagnosed with HIV in 2009, at the age of 28. Now 33, he’s concerned that young, gay men aren’t acknowledging the realities of HIV.
“I think the education and the knowledge is available to everybody, especially the younger generation,” he said. “I just don’t think that they listen, or that they see it. They feel invincible.”
This lack of knowledge contributes to a rising social stigma, in which men are judged for being HIV-positive. This can lead to discrimination in romantic, and intimate relationships. Duran writes about this stigma in an article titled ‘Undetectable’ Is the New ‘Negative’?
Describing his voluntary, public disclosure of his HIV-positive status (two years after his diagnosis) as his “second coming out,” Duran said that making such a bold step changed his life.
“I’m hoping that becomes the new normal,” Duran said, “where people are proud of an undetectable status, instead of being ashamed of an HIV-positive status.”
Duran said that his openness has garnered him support from others. He explained that when you’re “positive about being positive,” it reflects outwardly.
And just five years after his diagnosis, he admits that he’s developed a new outlook on life. “I’m a whole new person, 100 percent different from who I was five years ago,” Duran said. “For the better. But it took me some time to get to this point.”
New York City-based Jack Mackenroth was diagnosed with HIV in 1990. As the first openly HIV-positive contestant to appear on television’s Project Runway, he achieved publicity that he now maintains as an advocate.
Mackenroth, 44, said that HIV isn’t talked about in the same way it used to be. In the earliest years of the onset, HIV-positive men felt shame at first, but were then often looked at with compassion.
Today, that isn’t always the case. “The more treatable and successfully you can live with HIV, the less reason there is to be visible,” Mackenroth said. “So because of that, the stigma is actually much worse.”
With concerns about HIV remaining ever-present in the gay male community, Mackenroth said these concerns are often considered taboo for discussion.
Mackenroth said he receives at least two emails or Facebook messages every day from HIV-positive men. “They’re scared of losing their job, they’re scared of people finding out. The ramifications of the stigma is now the real disease,” he said.
Along with two colleagues, Mackenroth designed a website called Volttage. Volttage, launched in 2012, is a supportive social networking website, and educational and cultural resource for HIV-positive men.
Today, there are over 70 HIV-positive men in Boston with profiles on Volttage.
“We all know HIV-positive people,” Mackenroth said. “We just don’t know who they are, because they’re not talking about it.”
Washington, D.C.-based writer and blogger, Mark S. King has been HIV-positive for over 30 years. He details his thoughts on his personal website, titled My Fabulous Disease.
“There’s enormous stigma around being HIV-positive,” King said. “As medical science has improved, as our lives with HIV have improved, stigma has risen.”
This is something that King, 53, discusses in an article titled The Sound of Stigma. “It’s a real indictment of the gay community in terms of how we treat one another across the viral divide,” he said.
King said that there continues to be an underlying anxiety in the gay community, centered around not knowing if a man is HIV-positive. “Even though our experience with HIV is very different in a practical way, we’re still haunted by what happened a generation ago,” he said.
King said that social media, and online dating websites contribute to the stigma towards HIV-positive men, explaining that the Internet can be used as a vehicle to spread ignorant remarks. “The only reason it bothers people is because they have put HIV into this very scary, shameful box, and I don’t want to live there,” he said.
And as for the title of his website, King said that it isn’t meant to be provocative, but it’s meant to make people think twice. “As far as I’m concerned, HIV is in me. It’s going to have to live with my positive characteristics, not the other way around,” he said. “I’m fabulous. It’s my fabulous disease. The end.”
PREVENTION + ADVANCEMENTS
Not all men are so comfortable broaching the topic of sexual health. In fact, not all medical providers are either.
S. Wade Taylor, associate professor of social work at Wheelock College, said there can be a disconnect between medical providers and patients when it comes to questions regarding sexual health. “I think there is a stigma in talking about sexuality and sexual health that perpetuates barriers so that individuals who have questions are afraid to ask them,” he said.
According to Keith Orr, the director of Gay Men’s Prevention Services at the AIDS Action Committee of Massachusetts, it’s this kind of fear that affects attitudes towards HIV-positive men.
Because of this, HIV-positive men can struggle finding the right opportunity to disclose. “Still to this day in the gay community, it’s not something you want to open your initial conversation with— to tell somebody that you’re HIV-positive,” Orr said.
“I’ve never in my life encountered somebody who set out to become HIV-positive, or who in any way, shape or form, knew that their actions would result in that,” he said.
The MALE Center tests about 1,200 men every year, and with a 1 percent new infection rate, Orr said that the clinic sees about one new HIV infection every month.
Orr said that about half of the men who come for HIV testing are following a routine that they have set up for themselves, but the other half come in presenting a specific incident of possible exposure.
“I think the awareness goes away until there’s an opportunity for risk,” Orr said. “And then the awareness comes back at about 110 percent.”
Today, HIV-positive men are able to manage their disease through adherence to medications. These medications, Taylor said, are “getting better, and better, and better.”
“The younger generation did not experience HIV as the older generation did,” Taylor said. “People who are becoming HIV-positive today aren’t seeing the debilitating effects that once happened so quickly.”
One of the newest pieces of the puzzle, Orr said, is pre-exposure prophylaxis.
Pre-exposure prophylaxis, or PrEP, is a preventative pill, but not a vaccine, for HIV-negative men to take in anticipation of the possibility of exposure to the virus. PrEP is available for prescription and is designed to be taken daily.
Orr said that while PrEP is proven to be effective, it can be difficult for HIV-negative men to remain compliant in taking the pill every day, including days they are not having sex.
Research on PrEP is documented in a 2010 article published by the New England Journal of Medicine, titled Preexposure Chemoprophylaxis for HIV Prevention in Men Who Have Sex with Men.
Results from the Preexposure Prophylaxis Initiative trial showed that the once-daily, oral pill provided 44 percent additional protection against HIV for those engaging in male-to-male sex.
“Adherence is important,” Taylor said. “Adherence to PrEP is what’s effective.”
But Taylor said that PrEP can’t justify a lax attitude towards overall sexual health, because it doesn’t protect against sexually transmitted infections aside from HIV.
Orr said that the state’s most recent statistics indicate a positive trend. “In Massachusetts, we’ve got a lot to be proud of,” he said. “We’ve seen a 55 percent reduction in new HIV infections in the state in the last 10 years. The number of new HIV diagnoses is down to about one or two a day, statewide.”
GOALS + THE FUTURE
“Near elimination” is a term that Barry Callis, the director of Prevention and Screening Services at the Massachusetts Department of Public Health, uses to describe a continued, rapid decrease in new HIV infections.
“If we change our approach to HIV by zeroing in on the populations that are disproportionally impacted, I think we can drive down new infections,” he said.
Callis said that each year, he wants to see at least a 10 percent reduction in new cases of HIV among gay and bisexual men, and further 10 percent reductions in new cases among injection drug users and among racial minority populations.
“When you stop onward transmission, you end an epidemic,” said Dawn Fukuda, the director of the Office of HIV/AIDS at the Massachusetts Department of Public Health.
For Fukuda, local statistics on the decline of new cases indicate that now, more than ever, there’s a viable, functional end to the HIV epidemic.
“Every year, particularly in the last five, we’ve accelerated in terms of the effectiveness of what we’ve got,” she said.
But Callis said that advancements can also pose new challenges. Callis said that medications are allowing HIV-positive men to live longer, healthier lives, with fewer side effects. This can diminish the public perception about the impact of the disease.
Fukuda said that young people aren’t always proactive about health care. Combined with the lack of mainstream, digestible messages about HIV risks, they can miss out on crucial information.
Going forward, Fukuda said she wants to see a strong health and social service system that’s responsive to low-income populations. These populations are the most vulnerable to acquiring HIV. “Poverty is so intertwined with every public health crisis in modern history, and AIDS is no different,” she said.
She also wants to see the populations already infected with HIV living the healthiest lives they possibly can. “For me, seeing an end to the epidemic is not seeing an end to people living with HIV infection,” she said. “It’s seeing an end to people newly acquiring HIV infection, seeing an end to people becoming sick who are living with HIV.”