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A Quiet Activist: HIV-Positive Former Lawmaker Making Change for People with HIV

When we think about what constitutes an HIV "activist," what often comes to mind are people whose faces and opinions are everywhere we look.

But there is a man in Massachusetts who has been walking the walk when it comes to creating change -- bravely and boldly so -- with relatively little fanfare for quite some time. 

Meet Carl Sciortino. Sciortino, 37, spent nearly 10 years in the Massachusetts legislature, being elected to office at only 25. He even ran for Congress, but was unsuccessful his his attempt.

Not only was Sciortino openly gay from the day he began his campaign to be a Massachusetts representative, but before he left the statehouse he even came out as HIV-positive.

“My private life already was in the public sphere, and I had to work hard to protect my dating life,” said Sciortino, who married two weeks after his failed Congressional bid. “I was this openly gay legislator working on gay marriage and transgender rights, and had been very public about my life.”

But coming out as HIV-positive was a different beast. He learned of his positive status about five years ago, but kept it under wraps for a while. “I thought if I announced it during the campaign it would look like I was trying to exploit it for the campaign. That felt disrespectful to the gravity of the issue, in my mind.”

While he believed that coming out as HIV-positive was a good idea, he wanted it to be a benefit onto itself – not a benefit to the campaign.

On the other hand, he knew that if he were to win the heated Congressional race and not be public about it, that wouldn’t look right either.

Watch: Carl Sciortino’s adorable campaign commercial with his dad

In the end, he was able to make one announcement that took care of two issues. After losing the Congressional race, he was offered a job as executive director of AIDS Action Committee. Having already worked for AAC’s sister organization, Fenway Health, he was excited about the prospect of coming home, so to speak. So he announced his status at the same time he announced his new job, and his resignation from the legislature.

Gay marriage fight spurred Sciortino to run for office

Sciortino said he took the job with AAC because there is plenty of work to be done in the area of fighting to make life better for people with HIV. Right now he is working on getting legislation passed that he sponsored as a state representative. The legislation would require all insurers in Massachusetts to cover medications that treat lipodystrophy (fat deposits) and lipoatrophy (facial wasting) that is caused by HIV and/or HIV medications.

A desire to fight for what was right is also what inspired him to run for the legislature in the first place. While working at Fenway Health, Sciortino had gone to meet with then-state representative Vincent Ciampa. The issue: Gay marriage.

Even in liberal Massachusetts, Ciampa, a Democrat, was not a fan of gay marriage.

“The district is a progressive area, but he did not realize how much the district had changed,” Sciortino said, describing the 34th Middlesex District as blue collar. “When I first met with him, he was so rude and so offensive. That was what inspired me to run.”

Sciortino had gone to Ciampa’s office with other activists to encourage him not to institute DOMA, the Defense of Marriage Act, after Massachusetts had approved gay marriage.

“He avoided answering how he would vote for 45 minutes. When he realized we wouldn’t go away without some answer, he got really belligerent, calling us “you people” and pounding the table with his fist,” Sciortino recalled. He said he told a woman from the district who wanted to get married to provide a better life for her children “I don’t understand why you don’t just move to Vermont and get a civil union.”

That was the last straw for Sciortino. He beat the 16-year incumbent by just 93 votes in 2004.

Sciortino used his resignation speech to educate

Carl sailed to re-election in 2008, 2010, and 2012, even without appearing on the ballot in 2008. His campaign papers had mysteriously disappeared from his office that year, so he had to run as a write-in candidate.

When he learned he was HIV-positive in 2010, he had a lot to think about. He didn’t want disrupt the life of his now husband, political strategist Francis “Pem” Brown, or his husband’s family. He said his doctor very wisely told him to think things through and to give himself some time before going public.

“At the first meeting he said ‘I know who you are, I know the work you do, you have my utmost protection of your confidentiality,’ and I appreciated hearing that,” Sciortino said.

Brown is HIV-negative and Sciortino wanted to make sure his family was comfortable with him coming out about his status. “They were wonderful and fine,” Sciortino said.

When he resigned from the legislature, Sciortino, per Massachusetts tradition, gave a farewell speech to his colleagues. He used that time to talk about HIV and explain while he is able to live a healthy life taking just one pill per day, that isn’t the case for everybody.

“It was the perfect opportunity to do a little educating,” Sciortino said. “Every legislator in the room came up and gave me a hug or shook my hand. If they didn’t know somebody with HIV before then they sure did afterward.”

And even in liberal Massachusetts in 2013, in the legislature, it was clear that educating people about the basics of HIV still was needed. “One woman colleague said, ‘I’m happy for you. I’m so sorry, I didn’t know you were sick,’” Sciortino recalled. “She didn’t mean anything negative by it. I responded ‘I really appreciate that, and actually I’m not sick.’ She wasn’t being flip or rude.”

Bill treating HIV disfigurement could pass in spring

Sciortino said he believes it is important for people with HIV to share their stories if they feel comfortable doing so. He is disappointed that some have criticized Danny Pintauro for coming out and telling his story.

Sciortino admits to having a crush on Pintauro in his younger years. He said that while Pintauro may have been lacking a little public relations polish, “I think we’re making a mistake if we chase people away from telling their story, even if it’s not done perfectly. He’s doing a good thing. There is so much stigma around HIV and crystal meth, and he went public with both.”

Meanwhile, Sciortino is optimistic the legislation requiring Massachusetts insurers to cover drugs to treat lipodystrophy and lipoatrophy in people with HIV will be passed in the spring. Committee hearings on the bill are under way now.

“The public health argument we make is that when people have these conditions, they have stopped treating themselves for HIV because they don’t want to exacerbate the condition,” Sciortino said.

And of course when people with HIV aren’t virally suppressed, it’s much easier to pass the virus on to others.

He said as far as mandates go, an independent cost review shows it will only add pennies per month to insurance premiums. Not treating lipodystrophy and lipoatrophy already are resulting in additional health care costs such as chiropractic care and mental health treatment, he added.

Sciortino said 6,000 bills per year are filed in the Massachusetts legislature and only about 10 percent ever reach a vote. He said it can take many years for a bill to pass, “But this one feels different. The stories and the testimony are so real, and vivid and painful, it’s a bill that can’t help but get attention.”

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