After Michael Luciano was arrested for the 10th or 12th time in the 1990s, he stopped keeping count. Not that it matters, because most of the charges didn't stick, or else they have long since been expunged. As part of the AIDS Coalition to Unleash Power (ACT UP), an AIDS advocacy group that led countless protests in the early days of the disease, activists like Luciano had plenty of resources at hand whenever they were detained.
Luciano hasn't yet seen How to Survive a Plague, the Academy Award-nominated documentary about the activities of ACT UP in the early days of AIDS, but he's heard from friends who have. Apparently, he's in a handful of scenes, somewhere in the background, either at a meeting or being carried away from a demonstration by police. He'll be seeing the film for the first time when the Park Circle Film Society screens it on Sat. Jan. 19. Afterward, Luciano, the chair for the MUSC/Lowcountry AIDS Services Consumer Advisory Board, will lead a Q&A session.
Before he joined ACT UP more than 20 years ago, Luciano was averaging two funerals a week in New York City. So many of his friends were infected and affected by AIDS that he became a part of the organization by default. Then he was diagnosed with the disease in February 1992.
"I fired a string of doctors who told me my life expectancy instead of answering my question, which was what should we do next? What can we try next?" he says. "I was well aware of my life expectancy at that point, and it wasn't what I was asking."
Instead, he basically bucked the system and refused the only available treatment at the time, high-dose AZT monotherapy. The highly toxic drug would lead to improvement in some patients, who would then spiral and crash into death after resistance developed after a year or so. It wasn't a particularly alluring option, but fortunately it wouldn't be too much longer before one would present itself. "I knew from following the clinical trials that combination therapy would become available and it would become the standard of care sometime in the relatively near future," Luciano says. "I was determined to hang on until that became available."
Luciano was lucky. By late 1994, those combination therapies (involving protease inhibitors) would start to become accessible, and by 1996 the whole practice of treating HIV and AIDS was revolutionized. "That changed the whole picture really," Luciano says. "A lot of the activity in the film, the actions in the film and the protests in the film, are centered around the period that led to the early release of protease inhibitors. They went through accelerated testing and accelerated approval processes very much directly because of the activity of the Treatment and Data Committee of ACT UP New York and TAG, The Action Group."
How to Survive a Plague details just how ACT UP (which eventually spawned TAG) forced the American medical community to give a damn about AIDS and its treatment For anyone who doesn't remember the late '80s and early '90s, it's electrifying to see countless young gay men and their allies disrupting church services and blockading the FDA, all in an effort to save their lives. Luciano was part of the groups that pored over medical textbooks and abstracts on AIDS, returning to meetings with what they'd learned, now translated in an understandable way. Most had no medical or scientific background, though Luciano has a bachelors degree in chemical engineering, which made things a little easier. Today, he jokes he might as well have an honorary medical degree. "Usually every time I meet a new doctor for my own treatment, after three or four minutes they get a deer-in-the-headlights look and say, oh, I didn't realize you went to medical school," he laughs.
Today, heavily pierced and tattooed and maneuvering around Charleston on a bicycle, Luciano looks more like a bike punk than someone with extensive knowledge on treatment options and Centers for Disease Control statistics. But he fits in well with the activists seen in the film, who left lives as bond traders and PR executives to focus on full-time activism, attending HIV conferences in ACT UP T-shirts and leather jackets. Finally under successful treatment, Luciano eventually left New York with his partner Bill for Jacksonville. They lived there for five years before Bill passed away in 2005.
Not interested in returning to the cold winters and high rents of the big city, Luciano instead came to Charleston on the recommendation of a friend. He began volunteering at Lowcountry AIDS Services doing miscellaneous office work and facilitating a weekly support group. But Luciano had almost 20 years of experience as a treatment educator, as well as certification as a facilitator for a number of evidence-based intervention programs, and so his role grew, especially since no one else in Charleston was doing treatment education at the time. While most medical providers can provide patients with medical jargon they may not understand, Luciano can take that language and translate it into a more digestable message.
Unfortunately, this may happen more frequently than one would think. As Luciano points out, despite the success in treatment options, the annual rate of new infections hasn't changed in almost 20 years. "Only 25 percent of the known HIV positive population has a fully suppressed viral load, which means that not only are the other 75 percent continuing to suffer immune damage, which leads to lower quality of life and greater healthcare costs, greater burdens on not only the healthcare system but society as a whole," he says. And if someone's viral load isn't under control, it also means they are more likely to pass on the infection to someone else.
As Luciano says, there's no reason that a person being newly diagnosed today could not have a full life span, given proper treatment. However, even the least expensive combination therapies come in at about $25,000 a year, and there is still a big battle to be waged socially. "There is a real need for education and awareness and a return to a more vocal form of activism in order to bring that awareness, especially in the Southeast," Luciano says. "Here, we also have still an enormous amount of stigma around the disease, which is a major problem ... People avoid seeking treatment because they don't want to be seen walking into an AIDS clinic or an AIDS service organization."
That stigma exists both in the Bible Belt's gay community, where many gay men feel the need to stay in the closet. Also, according to Centers for Disease Control statistics, 57.2 percent of new diagnoses in the South are in African Americans. Luciano says that much of the black community here remains in denial either about their sexuality or about their HIV status. And as the face of the epidemic has changed, the impetus behind the gay community's activism has cooled significantly. Luciano would like to see a resurgence.
"My best advice would be to live openly, because no one can hurt you if you don't have a secret for one thing, and every person that decides to be open about their status reduces their stigma by just a little bit more," Luciano says. "If you refuse to accept that there is any shame or anything to hide, then slowly but surely it changes people's attitudes."
That's easier said than done in the Southeast. Luciano is not really sure that there is a vocal AIDS activist community here at the moment, so he's trying desperately to create one. "I do bang my head against the wall a bit, and I have to keep reminding myself, yes, we're in South Carolina. This is not the East Village," he says with a smile. "But that also inspires me to stay here and to put as much energy in it and time into what I'm doing, because there's much more need for me to be here than back in New York City."
Right now, Luciano is trying to develop a team of willing and vocal activists to help plan and execute events like World AIDS Day (held in Marion Square last fall). He recommends that budding activists start volunteering their time, in any capacity, with an AIDS service organization. (Locally, that would be LAS or the Ryan White HIV/Aids Program and Wellness Center). There are also many resources online, like the Stigma Project, a relatively new organization that seeks to combat the shame associated with AIDS — it's looking for a Charleston-area representative. "Get yourself involved and the opportunities will present themselves," he says.
When Luciano sees How to Survive a Plague for the first time, he knows that some parts will be difficult to watch, especially when they feature friends who are no longer around. But he hopes that it will be inspiring. "Not just to myself, but to other people here, to see how much impact really can be had by a fairly small number of very devoted people, and I think that really is the message of the film for today's audience," he says.
People may feel powerless to effect change, but the documentary proves that a passionate group can really make an impact. ACT UP and TAG completely revolutionized the treatment of HIV, and in many ways they helped influence how medicine is practiced as a whole in this country.
"It really is possible to effect change and to change both your government and your society in a positive way," Luciano says. "But it takes a lot of energy and commitment to do it."