When you’re HIV-positive in Boston there’s stigma — and support

Charlie Sheen spoke out about his HIV-positive status on the November 17 episode of the Today show. —REUTERS

Charlie Sheen’s announcement on Tuesday’s episode of the Today show that he’s HIV positive has highlighted the stigma still attached to the disease. The actor said that he’s paid upwards of $10 million to keep people quiet about his condition.

“It’s a hard three letters to absorb,’’ he said during his interview on Today.

Although it’s easier than ever to treat the disease, coping with it on an emotional level for some of the 1.2 million Americans living with HIV can still be a difficult process, fraught with judgement and misconceptions. In Massachusetts, more than 18,500 people were living with HIV at the start of 2014.

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“Coming out of the woodwork’’

“When I was diagnosed, I was really struck by the fact that I had a right to medical privacy,’’ said Carl Sciortino, 37, executive director of the AIDS Action Committee in Roxbury, “but the reason I was first choosing not to tell people was because I was afraid of their reaction. People still have lots of misconceptions and judgements about people living with HIV.’’

Sciortino previously worked in the state legislature, advocating for expanded HIV testing and increased funding for the AIDS Action Committee. Though he was open to friends and family, he didn’t announce his diagnosis publicly until he left the state legislature in 2014.

As a politician, he kept his diagnosis private from the public eye until his personal support system was in place. Though this creates a catch-22, Sciortino said: You can’t find a support system until you tell people, but it’s difficult to tell anyone until you have support.

“I knew almost nobody in the area that was open about their HIV status. That was strange, when I got diagnosed, that I knew [of] practically no one in my own personal network,’’ he said. “Once I went public, I had people coming out of the woodwork and sharing their experiences with me.’’

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Those calls came both from people Sciortino knew well and people he barely knew at all. He said he understood that everyone was just looking for any level of compassion or empathy. It’s easier to hide the illness due to medical advancements—Sciortino said that in the past, your deteriorating body would give away your HIV-status—and Sciortino thinks “sometimes that’s good, and sometimes it’s bad.’’ The option to be able to hide your HIV status can encourage denial, danger, and shame around the illness.

“The denial, the anger, the trying to reconcile it’’

Sheen said on the Today show that, though he paid millions to hide his diagnosis from the public, he was open with his partners and always led with “condoms and honesty’’ when it came to his condition. Since then, Sheen’s ex-girlfriend Bree Olson said that the actor never revealed his HIV-positive status to her while they were sexually involved.

Even though Sheen was diagnosed four years ago, he could have been infected much earlier—an estimated 12 percent, or one in eight, of the 1.2 million Americans with HIV are unaware of their infection, according to the Centers for Disease Control and Prevention. This is why many HIV-awareness advocates place such an emphasis on getting tested; AIDS.gov suggests having an HIV test during any regular medical checkup or every three to six months for those who are at a higher risk.

Jonathan Scott, president and CEO of the Boston-area service agency Victory Programs, got tested in 1987 when he was in his 20s and witnessing his friends dying of the illness “left and right.’’ Still, he didn’t pick up his results for about two and a half years because the shame and stigma of an HIV diagnosis was so strong. He knew he was at high risk and was always open about that possibility with anyone he dated, but also said there was such an emphasis on prevention back then that no one he knew was having unprotected sex.

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When he went back to the clinic to pick up his test results, it was still a year before he told his family that he was HIV-positive.

Scott said it’s comforting to see public figures grapple with a personal journey.

“The denial, the anger, the trying to reconcile it,’’ he said. “I don’t know how [Sheen] has proceeded, but I imagine it’s in the way we all have: talking to people you trust the most, then finding your way out.’’

Scott has been running addiction and HIV treatment programs since 1975. Now, the 58-year-old notices that younger people with HIV don’t think about the disease in the same way because they’ve never seen it run rampant.

“They didn’t live for 20 years watching everybody die of these disfiguring deaths,’’ he said. “They’re living in a time of much greater longevity and stability for people living with HIV/AIDS.’’

Though drug regimens are easier to manage and more readily available, they can come with their own dangers. While trying out different drugs—Scott only began a regimen 13 years ago—he experienced constant nausea, psychosis, loss of sleep, and fevers up to 103 degrees. Now that Scott has found a regimen that works, he lives a completely normal life—he’s married with a 12-year-old adopted child. He goes to the gym for an hour every day.

“I hope this opens up the dialogue that we still need all of the prevention messages we had 25 years ago. It’s still really, really important,’’ Scott said. “Breaking down the stigma, I think, and the shame, the quicker we can get people into treatment and the quicker we can get people involved in communities of support, both for mental and physical health.’’

“We’re not going anywhere. We’re living longer.’’

Victory Programs, where Scott has been working since 1976 when he started as a volunteer, is a service agency that aids men and women who have been living with HIV and addiction, experience homelessness, or have a mental health diagnosis—and in some cases, for people with all three.

JoAnn Coull, 56, has struggled with both an HIV-positive diagnosis and drug addiction—though she’s now been sober for more than six years. She’s a client at the Boston Living Center, a subsect of Victory Programs and a resource for HIV positive people, and was diagnosed in 1987 while she was an inmate at MCI Framingham. The diagnosis was so stigmatized then, she said, that she would not release the information to any authorities at the correctional facility.

Coull would never wish the disease on anyone, but she says there’s nowhere better than Boston to help cope and manage HIV because of the resources and support centers available here. That doesn’t mean stigma, and the unique form of depression that can take hold upon learning your HIV status, aren’t still issues.

“As crazy as it sounds, in this day and age in Boston, with all the resources available, it’s still difficult for women [with HIV],’’ Coull said. “What I had to do was just embrace the knowledge of having it; embrace it, accept it, learn from it, and move forward. This is just a little piece of who I am today.’’

For Coull, the empowerment comes from being able to control your own story. Coull said that whenever she faces someone who reacts to her negatively, she knows that they’re just uneducated about HIV in general. The interaction can become a teaching opportunity.

“You never think that it could happen to you. [People] just don’t even think to get tested,’’ Coull said. “Know your status, and just try to be a little bit more open and understanding, because we’re not going anywhere. We’re living longer.’’

Johnny, who chose not to give his last name, agreed that the stigma comes from “ignorant people.’’ He was also diagnosed while in prison, as was his brother, who died from the disease years ago. Currently, Johnny’s drug regimen has gone down from about 15 pills a day to one, and he said his viral load is undetectable.

When Johnny first found out he was HIV positive in 1996, he tried to take his own life. At 46 years old and after living with the disease for over 20 years, he said he’s glad he didn’t. His friends and family all know his status, and he likes to take the opportunity to speak out about it.

“[People] don’t understand,’’ Johnny said, “but this disease catches anybody.’’

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