The Battle for Needle Exchange, as AIDS Raged
In the '80s, HIV was killing tens of thousands of heroin addicts. Yet swapping clean needles for dirty ones remained illegal—until a ragtag group of AIDS activists put their bodies on the line.
In 1986, a vacationing outreach worker from San Francisco probably saved my life. Our mutual friend, David, had gone out to cop heroin for me; she was staying with him at his modest apartment on New York’s Lower East Side. While we waited for my man, she told me that I was at risk for HIV so I should try to avoid sharing needles, but that if I couldn’t, I needed to rinse them thoroughly with bleach first.
I immediately paid heed. I already knew that injecting risked blood-borne disease, and that there was no cure—or even a treatment—for AIDS. While I might have been somewhat blasé about the risk of dying of overdose, I was terrified of HIV and infuriated that the media and the government had decided that it was OK to let addicts like me die of ignorance.
Aside from helping me live long enough to recover, that encounter also catalyzed my sense of purpose. Although I wasn’t especially effective until I managed to stop using cocaine and heroin, it was at that moment that my vague ambitions to be a writer and my desire to understand and explain addiction in hopes of improving drug policy began to come together.
Indeed, my first article in a major newspaper—the Village Voice—was also, to my knowledge, the first American piece in Big Media to explore, from the addict’s perspective, why clean needle programs urgently needed to be expanded. (Only High Times magazine had run earlier articles from this point of view in the US: one by sexuality activist and writer Patrick Califia and another by me under a pen name.)
Needle exchange had started in Amsterdam in 1984, when the country’s “Junkie Union” began a program allowing addicts to swap their used syringes for clean ones to prevent the spread of hepatitis B. It soon took off in Britain, with Margaret Thatcher’s conservative government deciding in 1986 to implement needle exchange and expand access to methadone treatment—a policy largely responsible for having prevented an HIV epidemic in drug users and heterosexuals in that country.
But I couldn’t get the story into the Voice until 1990, even though the situation was far more desperate in New York. Before then, I handed out information about bleach at the methadone detox program I was failing at and I also wrote bleach instruction graffiti on the walls of bathrooms where I shot up in the East Village (I knew I wasn’t the only addict using there). I also tried to educate everyone I knew: unfortunately, by that point 50% to 60% of the IV drug users in New York were already infected, including, I later learned, my running buddy David.
I’ll never forget seeing needle exchange done by activists, with addicted people almost unable to believe their eyes as strangers risked arrest to try to save them from HIV.
By 1990, however, there were some American activists on the scene. Jon Parker, a former IV drug user, had begun getting himself arrested in the nine states where needle possession without a prescription was illegal. Not coincidentally, these nine states had an HIV rate that was six times higher than states that allowed over-the-counter syringe sales.
By 1987, Parker had already handed out 50,000 syringes illegally and his work was featured on the front page of The New York Times in 1989. He deliberately staged arrests, hoping to have judges rule that the public health interest in saving lives outweighed the clearly ineffective drug paraphernalia laws. He had achieved that result in Boston and wanted to bring it to New York.
Parker was blond, handsome and charismatic, telling the media his own story of going from “jail to Yale” (where, for a time, he pursued a PhD in public health) and constantly emphasizing the need to fight AIDS. In 1990, he joined forces with another media savvy group: the Needle Exchange Committee of ACT UP.
In early March of that year—after New York Mayor David Dinkins decided for political reasons to shut down a pilot needle exchange that had been started by the city health department—Parker and ACT UP decided to hand out needles openly on Delancey Street on the Lower East Side, trying to get arrested in the epicenter of the epidemic among drug users. At the time, New York had the country’s largest population of IV drug users, around 200,000 people. Roughly 75% of new infections in babies and in heterosexual women originated in IV drug use back then.
The politics were awful, however. The right wing, predictably, opposed needle exchange as similar to condoms: It would “send the wrong message” and expand drug use. North Carolina Senator Jesse Helms passed a law banning federal funding for needle exchange in 1988 that to this day continues to cause harm.
In the ‘80s and ‘90s, there was also opposition from moderates like Michael Dukakis, the Democratic presidential nominee in 1988, and, later, President Bill Clinton, who used the issue shamelessly to show how tough they were on crime.
And even on the left, there were problems. The Black Leadership Commission on AIDS (BLCA) declared needle exchange a “sop” or “Band-Aid” that would take the place of expanding addiction treatment. Some black leaders even compared it to genocide and rumors spread that the needles activists planned to hand out would actually be contaminated and spread the disease.
Into this crazy scene came the “Needle Eight,” who included Parker, Richard Elovich, Kathryn Otter, Dan Williams, Rod Sorge and several other ACT UP members. For Spin and for the Voice, I covered the action, watching as harm reduction in the US was born.
The testimony in their trial—for distributing needles without a prescription—was riveting. For one, the prosecution could only find one witness to take their position, a BLCA member, Dr. Larry Brown, who ran a methadone program. “The spread of AIDS has leveled off in New York,” he testified, a shockingly callous statement to make in 1990. He said that the city needed to wait until there was a “gold standard” type of AIDS prevention. “A lot of those people are going to die,” he said of addicts. “It’s unfortunate. I deeply regret it.”
Elovich responded with great fury. Now a noted medical sociologist at Columbia, back then he was a young man dealing with his own recovery from addiction. “The gay community didn’t wait for studies to start using condoms,” he said. “That statement is unconscionable. It suggests that people are expendable. As a recovering addict, I don’t care what my color is. I’ll reach out to ‘those people’ if he won’t. A do-nothing strategy like he recommends is reprehensible.”
With data favoring needle exchange already beginning to come in—and with none of the places that had done it for years showing increases in drug use—the judge agreed with Elovich. She ruled that the law banning access to syringes was an impediment to public health, and there began the legal needle exchanges we have had in New York ever since.
At the end of this month, the odious Helms amendment will be due for another continuation, since it can get renewed or dropped as part of the federal budget every year. We now know that needle exchange saves $3 to $6 in medical care and other expenses for every dollar spent. We also know that it gets participants into treatment and is even linked with their increased employment.
I’ll never forget seeing needle exchange done by activists for the first time, with addicted people almost unable to believe their eyes as strangers risked arrest or worse in some of the city’s worst neighborhoods to try to save them from HIV. People who looked sick, gray and miserable would suddenly light up; those who seemed unreachable would make eye contact and tentatively connect. It was one of the most spiritual things I have ever witnessed.
The power of those moments was often the power of one addict helping another, since both recovering people and active users were critical in getting needle exchange going and maintaining it today. Sometimes, that connection lit the spark of recovery; other times, it just helped people get through another day without becoming infected. Almost always, it gave people hope—and it’s that hope that I continue to try to convey.
Maia Szalavitz is a columnist at The Fix. She is also a health reporter at Time magazine online, and co-author, with Bruce Perry, of Born for Love: Why Empathy Is Essential—and Endangered (Morrow, 2010), and author of Help at Any Cost: How the Troubled-Teen Industry Cons Parents and Hurts Kids (Riverhead, 2006).