Talking with AIDS Action's Carl Sciortino - Why You Should Still Walk This Sunday
In 1986 some 6000 participants gathered on a Sunday morning in June for an event called "From All Walks of Life." They gathered to raise money for the Boston-based AIDS Action Committee, the then-three year old organization created in response to the AIDS epidemic. Since then, more than 350,000 participants have raised some $40 million for the programs and services of AIDS Action.
While infection rates are down and treatment is more manageable, the needs of those affected by HIV remain critical, as does the need for outreach and education. In short, as long as the HIV virus is transmitted, there will be the need for events such as the AIDS Walk & Run Boston, which takes place this year on Sunday, June 3.
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Carl Sciortino
No one is as cognizant of the epidemic than Carl Sciortino, who has been the Executive Director of AIDS Action since 2014. Prior to that, he was a state legislator who received national attention with a political ad he made while running for Congress. In it, he introduced his father - a Tea Party Republican - who disagrees with him politically, but has no issues with Carl being gay.
Since joining AIDS Action, Sciortino has been able to use his skills (and connections) as a legislator to educate elected officials as to the needs of those with HIV in this age of budget reductions and regressive politics. He has been pivotal in developing the
EDGE spoke with Sciortino recently to talk (amongst other things) as to why we should walk on June 3.
EDGE: Upcoming AIDS walk. Why is it still important?
Carl Sciortino: We have been walking for over three decades now because the fight is not finished. Every year when people gather to participate they are able to honor the memory of those lost and also raise awareness and fund in the continuing fight against HIV. I think one of the challenges we face is that many people don" t="" see="" HIV="" as="" a="" continuing="" threat="" or="" problem;="" so="" the="" walk="" is="" an="" opportunity="" to="" educate="" and="" build="" awareness="" of="" the="" work="" that="" needs="" to="" be="" done.
EDGE: Do you see it as a problem that HIV has become a lot less important for a lot of people?
Carl Sciortino: I get asked a lot if there are many misperceptions about HIV; but the challenge is that there is not much of a perception at all, never mind a misconception. We are living in a state where there has been really remarkable progress in reducing new infections and supporting people living with HIV to have relatively good health outcomes. Yet we have warning signs that progress can be quickly eroded, for example in the context of the opioid crisis, we see an outbreak in the Lawrence and Lowell area. HIV is an infectious disease that can very easily rebound if we lose the momentum we have built.
EDGE: Has the infection rate been stabilized?
Carl Sciortino: We reduced the new infections diagnosis by almost 50% percent from 200 to present day. We have been flatlining with 600 or 700 new cases per year for at least a half-dozen years now, we reached a plateau. That is why we started to raise awareness of the goal of getting to zero infections and zero stigma. The idea is with the 600 new cases a year being diagnosed, could we go to 500?
To 400? Towards the goal of 0. But in the last three years we have seen a tripling of the number of new cases attributed to the opioid epidemic and sharing syringes. So the progress we made is very much in jeopardy if we don't get ahead of that crisis.
EDGE: You have expressed your support of safe injection sites, which is controversial in some circles. How is that going, and who is opposed to that?
Carl Sciortino: Supervised injection facilities are another tool in the fight against the spread of HIV, HepC, and overdoses. In some ways, it is much similar to the debate over open needle exchanges in the mid-1990s. At the time it was a radical, controversial concept, but they worked. We reduced HIV transmission amongst people that injected drugs by 90% by introducing needle exchanges. And we did that because people were dying of AIDS. There was a lot of HIV transmission amongst people who injected drugs. And that intervention worked and the rate continues to decline.
I think a lot of the progress we are making in raising awareness about supervised injection facility is similar in that people are dying in large numbers of overdoses right now, and I think that is raising enough alarm that our current interventions aren't effective enough in this epidemic. I think the resistance we see is mostly one borne out of lack of familiarity with the concept. It might seem radical at first to make a safe place for people to inject drugs under clinical supervision, but it is going to be necessary if we want to turn the tide of overdoses and stem the rise in HIV infections.
EDGE: What do you think of PrEP?
Carl Sciortino: I think it is another tool in the toolkit to stop the spread of HIV. And I think if PrEP had been introduced and available in the earlier days of the epidemic our community would have been screaming in the streets and demanding access and protesting and educating our peers in a much more vocal way than we see now. I think a lot of the lack of fear of HIV leads to complacency around PrEP as a tool of intervention. I think it also very problematic is that the racial disparity in accessing PrEP is also panning out. We see predominately white gay men accessing PrEP, more so than Latino gay men where the PrEP participation is lower. I think it is important for us to have an observation on how racism and lack of access to health care along racial lines are also playing out in HIV prevention with PrEP.
What we are not seeing yet is whether or not PrEP will bring the number of HIV cases down in the gay community in Massachusetts. There are not yet enough people utilizing PrEP and not enough time has elapsed to see if it has a real impact. But I expect that it will. I expect that as more people access PrEP, even with more and more people not using condoms.
EDGE: There has been a sea change in the past decade in terms of safer sex practices. Barebacking is becoming the norm, especially amongst younger gay men, due to PrEP treatment. PrEP is helping to reduce HIV infection, but do you see other changes due to its use?
Carl Sciortino: I think what we see in national STD rates, we see a dramatic rise in chlamydia, syphilis, and gonorrhea - gay and straight. Condom usage has been down in our population - gay and straight - across the country, and I think a large part of that is, I think people don't have an association of the possibility of death from AIDS with having condomless sex. That fear is long gone, but now our challenge is how do we insure that safer sex practices take into account STD rates that are rising.
EDGE: If I can't participate with the AIDS Walk on June 3, how can I participate?
Carl Sciortino: Sunday, June 3 is the walk. But we also have a lot of people that sign up as Virtual Walkers on AIDSWalkBoston.org. They help build teams and raise awareness and funds through their own families and networks.
The Walk and Run both happen the same morning, June 3. We have an opening ceremony on Boston Common. And the 5K run kicks off around the same time as the walk that morning around 10am. People can participate in the run or the walk, whichever they prefer.
EDGE: Are you hopeful about the future?
Carl Sciortino: We launched the Getting to Zero initiative about three years ago with the goal of getting to zero in new infections because there is a lot of reasons to be optimistic. The success in our state in reducing new infections and reducing the death rate is significant. Compared to the rest of the country, we are doing remarkably well. I think with the tools we have now, we can stop the spread of HIV today. And even without a vaccine or a cure, and we still need both of them; but even without those tools, we can bring the epidemic to a close.
We can see the end, and what we have to do to get there even with the tools we have at hand. So I have a lot of reasons to be optimistic. The caveat, though, is getting to zero and staying at zero is not the same thing. It is an infectious disease and the moment you take the foot off the gas pedal in prevention efforts, it can resurge. We have seen that with TB, we see that in syphilis. And with the opiate crisis, we see the worst-case scenario with people with high risk that didn't have effective interventions in place, begin to have outbreaks. So we have to work to contain them. So I have optimism overall but that is because I know we have the commitment in our state to continue the prevention methods that are necessary.
EDGE: Has your past career as a state legislator informed your current position at AIDS Action?
Carl Sciortino: In a couple ways. One is, as someone living with HIV myself is, that I help normalize and humanize the issue of HIV in 2018. Most people don't know someone who is open about their HIV so it was important for me to be out and public and visible, to destigmatize and humanize the face of HIV. So I was able to build on that with former colleagues in the House and Senate and help them best understand how HIV is still relevant and what their responsibility is to help us finish the job. And when it comes to advocating and lobbying lawmakers, I can bring my own story, but also the community of advocates at AIDS Action and beyond to put a human face and tell a real story and get legislators attention in what they should be invested in.
Carl Sciortino and his dad.
EDGE: Do you miss the rough and tumble of state house politics?
Carl Sciortino: I do not. I was there for almost a decade and loved the experience but I knew it was my time for other things and the work at AIDS Action is real important to me personally. I think we are at a moment in time when we make a real difference in finishing the fight. I am delighted in my current role and delighted to be able to play a strong advocate's role at the State House.
EDGE: Many of us got to know you from the television commercial you made when you were running for Congress a few years ago. In it you introduced your dad, who is a conservative Republican, who disagrees with you on politics while having no issues with you being gay. And it went viral...?
Carl Sciortino: Yes. It's funny, people ask me about it a lot still. And my dad doesn't believe me when I tell him people still remember it. In that campaign for Congress, getting to do the commercial with my Dad and all the reaction we got to it was really a highlight of my relationship with my dad as an adult. This was a defining moment for me and my dad to go through together. He really is a cantankerous, right wing republican, and we fight about politics a lot still. But he's also lovable and kind and caring and compassionate, both to me and other people. The commercial really captured our relationship and our love and our political disputes in a nutshell. It is really a treasure to have for me and my dad.
For more information about the AIDS Walk & Run Boston that takes place on Sunday, June 3, http://info.aidswalkboston.org|follow this link.
