Far from the finish line

On June 1, Phil, a 36-year-old South Ender, will participate in AIDS Action Committee's (AAC) AIDS Walk for the first time in about a decade. Back then he joined a walk team to honor a close friend who had died of complications from AIDS in 1994. This year, Phil's reason for walking is even more personal: he was diagnosed with HIV in 2005.

He's still walking to honor his late friend, and all the people currently living with HIV. But Phil, who asked that his last name be withheld over concerns about the effect of disclosing his status on his job and health insurance, is also walking for those who remain uninfected, people he hopes will never have to endure the experience of testing positive. Phil said learning he had HIV opened his eyes to the fact that the epidemic is still very much alive.

"It's also made me think there are a lot of other people facing the risk of becoming HIV-positive or living with the disease who are a lot less fortunate than I am. And that's why I'm doing the walk, actually. I realized having done it before, I had to take a look about why I had stopped doing it, and it's because it seemed like it wasn't as important," said Phil. "And I realized it wasn't that it wasn't important. It was that it wasn't a priority. And that's changed over the last couple years, to say the least."

HIV/AIDS may have fallen off the radar screen for many gay and bi men, but AAC's AIDS Walk is still going strong. The event, launched in 1986, is AAC's largest annual fundraiser, and last year more than 18,000 walkers raised more than $1.2 million for the organization, exceeding AAC's fundraising goals. Rebecca Haag, executive director of AAC, said those dollars have been crucial. After the state cut most of its funding for HIV prevention efforts beginning in 2002 AAC has used money from the AIDS Walk to fund its prevention programs, and Haag said since that money comes from the public, rather than from state or federal grants with content restrictions, AAC can develop prevention messages that talk frankly about sex.

Haag said the money from the AIDS Walk has also allowed the organization to fight in the political arena for more progressive HIV/AIDS policies.

"It also allows us to do the public policy work that isn't funded by government. Pharmacy access is a good example of that," said Haag, referring to the 2006 law that allows pharmacies to sell syringes over the counter in an effort to promote clean needle use among injection drug users.

The fight against HIV/AIDS remains ongoing, but the sense of urgency for many within the gay and bi male community around the epidemic has decreased over the years as the number of deaths has dropped and people began to view HIV as a manageable chronic illness. Yet the gay and bi male community is still one of the groups hit hardest by the epidemic in Massachusetts. Kevin Cranston, director of the Department of Public Health's (DPH) HIV/AIDS Bureau, said that taken together, men who have sex with men (MSM) and MSM who inject drugs account for 39 percent of people diagnosed with HIV in Massachusetts between 2004 and 2006, greater than any other category of exposure. Every year for the past several years about 350 gay and bi men are diagnosed with HIV, and Cranston said that number has remained stable while other modes of transmission have dropped.

The impact of HIV/AIDS on gay and bi men is even greater within the Metro Boston area, where MSM make up an even larger percentage of new infections. Within Boston itself MSM account for just over half of all new infections. Most of the men diagnosed are in their 30s and 40s, but one in 10 MSM diagnosed with HIV from 2004 to 2006 was between the ages of 13 and 24. White men make up the majority of newly infected MSM, but black and Latino men are infected at disproportionately high rates. Within the black gay male community HIV/AIDS is taking a much greater toll on the younger generation; among black MSM one in four men diagnosed between 2004 and 2006 was between the ages of 13 and 24.

Like many gay and bi men, Phil assumed that AIDS was no longer a crisis. Despite his friend's death, when the disease was no longer front-page news, it "didn't seem to be as much of a problem. I didn't know anyone who was positive," he said.

But he got a wake-up call when a friend of his confided to him that he had tested positive for the virus. At the time Phil was recovering from a crystal methamphetamine addiction; during his time in the drug scene he partied hard and had unsafe sex. He said that even while using crystal he worried that he might be positive, but felt that even if he became infected the treatments for HIV would keep him relatively healthy. He got tested six months after his friend revealed he was HIV positive.

"It was one of those situations that I've talked to a lot of people about, and it's pretty common, that it couldn't happen to me. But the scary thing was I thought even if it did it wasn't that big a deal, and the drugs out there are making it a kind of chronic disease," said Phil. "And I found out differently once I got on them, it's not as simple as that. I had a hard time with some of the drugs, some of the side effects and getting used to them."

Michael Shankle, director of AIDS Action's Male Center, said that like Phil, many of the men who test positive at the Male Center's counseling and testing program have risky sex while using drugs or alcohol, and many believed that HIV had become a chronic illness. But he said there are other factors behind the new cases he sees at the Male Center, including ignorance about the mechanics of HIV transmission.

"The myths of transmission still exist in the community even though we're 27 years in. People that are tops think they can't get HIV because they're a top. That still exists in the community," said Shankle.

While the gay male community led the way in working to break down the stigma around HIV/AIDS, Shankle said many men who are positive find that stigma still exists even within the gay community.

"There's lots of fear that exists around disclosure and around people feeling like there's going to be loss, loss of friends, loss of who they are because of HIV. ... I think we as a community think [with]HIV, there's a certain level of normalcy to it, but there's a lot of stigma like, 'No, I can't be in a relationship with a person that's positive,'" said Shankle.

Since testing positive Phil said he has found support both among his friends and through some of AIDS Action's support groups, including a group for people newly diagnosed with HIV. But the stigma around HIV and the fear of becoming a target of discrimination because of his status are now part of Phil's daily reality. Phil said in his romantic life, the response to disclosing his status has been mixed. Everyone he has told has been polite, but some dates stopped calling him shortly after he told them he was HIV positive. On the job, he worries about people finding out about his status because he fears that he could have difficulty getting health insurance if he changes jobs.

"I worry about it certainly from the point of view of health insurance, if I ever lost my job and having my status being out there. I don't know what it would mean if I lost my health insurance and trying to get it back. I have heard horror stories of people who have been out of the loop trying to get health insurance again," said Phil.

He worries that the lack of conversation about HIV/AIDS within the gay male community will lead to more infections among younger gay and bi men. He said when he was first entering the community in the '90s safer sex messages were ubiquitous, but now those messages are few and far between.

"I do worry about the younger guys in their late teens and twenties because that's where I hear about people who are totally blindsided by it. When I was coming out in '94 the messages were out there," said Phil. "That's not there for these guys. ... Those are the guys I worry for the most."