Sym the Prole
If it were up to Sym Prole, he'd be throwing fistfuls of Truvada from a Pride parade float in the fight against HIV
As the gloaming settled on a sultry June evening, a throng of thousands gathered in anticipation. Bedecked in the finest of frippery – headdresses, harnesses, leashes, petals, and costumery – the lesbian, gay, bisexual, transgender, queer and questioning, intersexed, and allied conglom, bejazzled from head to toe, had emerged to celebrate the big, beautiful mess that makes up the rainbow of affiliated communities, an amalgamation of expressions in all their beautiful, diverse humanity. First order of business? To drive home the unified message: We're here, we're queer, get used to it. It was 2012, and for the third year in a row, the crowd had assembled to drop a Queerbomb on Austin.
Sym ACTs UP
Sym Coronado, also known as Sym Prole or as his alter egos Merci Killingspree and DJ False Flag, chose this night to become not only a stalwart activist on behalf of the queer community, but an outspoken representative of those living a similar life as he. He took to the stage, and in the spirit of the evening's incendiary "bomb" drop, announced his status as an HIV-positive man. "I know this is a lot to share with a crowd of strangers," he began, "but it is important that we, as a community, be honest about our situations. It is our right as citizens to question structures like capitalism, our health care, the lack of anti-discrimination laws, and so much more." That was the message that Sym Coronado brought to Queerbomb 2012, and he doesn't regret it. In fact, he's ready to amplify it.
A native Austinite, Coronado had helped organize Queerbomb from the start, shortly after returning home from Portland, Oregon. Getting involved with the rag-tag group of queer upstarts, he says, "helped me start to find spaces where I had a sense of community, but I still kept my status to myself. Before I came out as positive two years ago at Queerbomb, it was really hard."
In certain segments of liberal, accepting Austin, it's difficult to imagine that a young, eager activist like Coronado would encounter any challenge regarding his status, but AIDS/HIV panic is alive and well, even in Austin, Texas. "I had to say it [declare HIV-poz status] again and again to every partner, close friends, and family. People shame you, abandon you, out you. There are so many of us out there who don't feel they have anyone to turn to," he explains. Queer people with HIV essentially come out twice – first as gay, then as positive. Coronado discovered that just as with coming out queer, the other side of the HIV-positive closet door is so much brighter.
"Outing myself to 3,000 people has given me an understanding of myself as a person in ways that I never expected," he says about the journey that began that night at Queerbomb and has taken him from accepting help to offering it. "Because I remain outspoken, I have a lot of friends who confide in me. I've gotten to counsel people who have just been diagnosed – even complete strangers. Everyone's situation is different, but being honest about ourselves is going to go a long way."
The Personal Is Political
Coronado's original HIV diagnosis came through at a Portland clinic the same day as President Obama's election results. "People were shouting in the streets, and I was the last person at the clinic when the practitioner told me my results." His odyssey with HIV would teach him a lot about people. "The next day I told my boss that I had just been diagnosed with a medical condition that would require some schedule flexibility. Then I came out to my mom, both as gay and poz. The gay thing was almost a sidenote at that point, and thankfully she understood that HIV is no longer a death sentence and reassured me."
Just a few days later, Coronado got an ear infection that sent him to the hospital. The absence lost him his job. For the next year he survived on unemployment benefits and sofa surfing, but there were a few months where he nearly lived in his car.
When he decided to move back to Texas, he was in for some surprises. Coronado ticks off a list of odd encounters with other people's reactions to HIV/AIDS. "Sometimes I'd meet a gentleman caller who would bring up some stigma. I've had friends who would out me before I was ready to talk about my status. People have called me out in public or told me they didn't want me near them because 'I have AIDS,' which isn't even true. One of my friends stopped talking to me when she got pregnant. I don't know if it was a moral judgment or if she thought her baby would contract HIV, but it is what it is."
Texas' medical safety net was another surprise. Portland manages to simply insure financially disadvantaged citizens with Blue Cross Blue Shield. Austin, however, has a patchwork of programs, all on tight budgets. The only place where low-income people living with HIV can visit an actual doctor is at the David Powell Health Center. The program that pays for access to the clinic is Austin's Medical Access Program (MAP), which acts as a stand-in for federal Medicaid dollars. A single man would have to make less than $973 a month to qualify. The clinic has a sliding scale for people who don't qualify, and they don't turn people away, but that only adds another layer of complication.
As for the cost of medication, the federal AIDS Drug Assistance Programs provide for over a third of Americans living with HIV, but a doctor's visit is required in order to actually start a regimen, which leaves the David Powell clinic as the only option available to low-income people living with HIV. After prevention and testing efforts, basically every nonprofit ends up referring poz clients of limited means to the David Powell clinic.
Equality in Texas?
After a few years in the system and a few years seeing the power of local activism on other fronts, Coronado thinks we can do better. "Even with Obamacare, there are a lot of people who still can't afford insurance, especially since Rick Perry turned down the Medicaid expansion that would have covered millions of Texans. Locally, we're spending money on a fully staffed brick-and-mortar clinic for people like me. Not that it's too much money – it isn't enough."
The wait lists at the David Powell clinic are already beyond humane, and they're going to get longer. The assumption that the Affordable Care Act will cover people is unfortunately going to result in funding cuts and a lot of people falling through the cracks. "We should be looking at options that would allow [patients] to see the doctor of our choice. Creating a publicly funded insurance pool might be more economically viable and could ease the patient load at David Powell," suggests Coronado. The age-old health care quandry of triage-vs.-preventative care comes up, too. "It's important to remember that if people don't see a doctor, they don't get medication," Coronado notes from experience. "It's life or death, and the fact that someone might be considering no care at all as an option is unacceptable."
HIV disproportionately affects gay and bi men, primarily the very young, and particularly people of color. That's not a coincidence. Homelessness is a major factor. Approximately 40% of homeless youth are LGBTQ kids who were ejected or ran away from a hostile living situation. Having no resources and little education, these kids seldom even know the resources available to survive another day, let alone to get adequate medical care and prevention.
Even for those with loving families, people who face the daily disadvantages of the underprivileged have more pressing concerns than frank discussions of sexual health. Jeremy von Stilb is a popular local DJ (Mouthfeel DJs) who works at the Q, a part of the Mpowerment Project for young men through AIDS Services of Austin. "It's like we [public and nonprofit HIV prevention efforts] have sort of thrown in the towel," says von Stilb. "At this point we're counting on testing and treatment to slow the spread of HIV, and that's one tactic, but we are avoiding conversations about the underlying conditions that put people at risk in the first place."
While the context of HIV/AIDS has changed – from the appearance of a new, deadly plague, to working treatments, to a manageable, if chronic, illness – the social conditions that drive infection rates have not. Over the course of two generations, a plague appeared, killed tens of millions of people around the globe, and has already been all but forgotten. Today, it's easy to forget, or at least displace the threat. Coronado knows this well: "When I was diagnosed, it had been a year since I'd been tested. It just happens; things slip through the cracks, and all it takes is one time or a period of time when you just aren't thinking about it."
Visibility = Life
"In the years since I've become an advocate on the issue, I've seen that the easiest thing we can do is give people education," says Sym Coronado. "That fell short for me, not having the information I needed to make good decisions.
"For a lot of people, especially gay men, meeting people and having sexual adventures is really easy, but navigating this huge puzzle our society has laid out for us is not. We've got huge social and legal institutions bearing down on us with inequality, shame, and often violence. We're in a different reality than other people, and this virus is just another factor.
"In a state with the fifth highest teen pregnancy rate in the nation, our schools are still required to spend more time on abstinence than actually addressing facts about sex and risk, and only so much can be said about abstinence," he says, beginning to reveal that spark that sets him aflame about issues affecting people's lives. "There's still stigma around carrying the virus itself. A form of sexual discrimination called 'sero-sorting' has cropped up, by which people think they're eliminating risk by only having sex with people who claim to be HIV-negative, when in fact, they're actually at much higher risk than they would be if they consistently used protection."
In mid-2012, when the FDA approved the drug Truvada for pre-exposure prophylaxis (PrEP), HIV became a preventable illness, not only by providing a physical barrier between partners, but through a simple daily routine. This could have the impact for men who have sex with men (MSM) that the birth control pill had for women half a century ago. Of course, various forms of contraception still have their vocal opponents, and PrEP is experiencing a similar backlash. The phrase "Truvada whore" has been coined to shame people who take it as protection, and absolutists emphasize that only abstinence or condoms can protect against various other sexually transmitted infections, failing to understand that without PrEP, people end up with both.
For medications like PrEP, however, the control that pharmaceutical companies have over the pricing and availability make it nearly impossible for a person living without insurance to afford. At setting the price tag at $1,300 per month, Truvada's manufacturer Gilead has basically walled off the drug as a protection for the middle and upper classes, and the company holds a true monopoly over pharmaceutical HIV prevention. There is no generic equivalent, no competitor offering an effective alternative. There is a copay assistance program for people who have insurance, but the people most at risk are being left out in the cold.
"Making Truvada more available to people at the margins could potentially be a huge help," says Coronado. "We should be throwing out fistfuls from a Pride float. The mostly affluent, mostly white men who have doctors knowledgeable enough to prescribe PrEP aren't the ones who need it most. Even though it's controversial and a lot of people will avoid it, just having it in the discussion is a useful reminder that everyone who is sexually active needs to be thinking about HIV. If everyone gets the education they need and stays prepared and protected, we'll see a dramatic drop in infection rates. We have the tools to make this happen, if we can summon the will to do it."
Coronado sees the beginning of such an effort in commitments from nonprofits and community groups like ASA's the Q. "I really like what they're doing. They're proactive in terms of meeting people where they are. That's what's important: They're bringing in marginalized groups and letting them have their own networks, their own support, as well as the knowledge of how to protect themselves and where to find the services they need."
He believes his experience could serve to bring more people forward. "The best thing that I've ever been able to do is speak from my own experiences. Having lived the young, gay, poor, Hispanic, HIV-positive experience, both closeted and out, I can relate to a lot of people where they are. I can be there for people in those situations; I can speak out honestly with nonprofits and public entities about the struggles attached to this. Coming out wasn't easy, but being public about it and not living in fear has been really important. Giving visibility to people in these situations can do a lot to help people understand what we can do together."