Dozens of Oakland-based hepatitis-C patients and their providers gathered outside the office of Governor Arnold Schwarzenegger. It was September, and they were bearing a petition with 4,000 signatures supporting the continuation of Drug Medi-Cal, a program that funds substance-abuse treatment services for California's poor. But this was no typical demonstration. The protesters included drug addicts, a group not usually prone to mounting political campaigns on the capitol steps.
The addicts and their health-care providers were upset because the governor's budget earlier in the year had threatened to eliminate most of the program, effectively ending access to methadone treatment and other "abstinence-maintenance" options for Medi-Cal beneficiaries. The Legislature eventually blocked the proposed cuts, but activists are certain that the program remains in peril.
Galvanized by the capitol protest, the demonstrators decided to form their own political lobbying union representing a notorious underclass: drug users, past and present. Led by a core group of hep-C patients-turned-activists, the union intends to transform the state's roaming population of drug addicts into a political force. "We are the army of the bedraggled. We're the clients!" said Orlando Chavez, an organizer for the campaign. "We figured out we are all in danger of losing access to the only health care we have. And that battle is going to start again in January."
"When it's time to cut the budget, it's easy to ignore the drug addicts," noted Dr. Diana Sylvestre, a specialist in hepatitis C and addiction-related diseases. "The stigma of addiction keeps people feeling like they don't really have a say in the policies that affect them." But many of Sylvestre's patients are shaking off the stigma.
Advocacy groups like the nonprofit Drug Policy Alliance and the Harm Reduction Coalition have been lobbying for some time, campaigning for drug decriminalization and policies sympathetic to active drug users. But an addict-driven group dedicated to changing policy at the state and local level would be unprecedented in the East Bay.
Oakland-based OASIS, which stands for Organization to Achieve Solutions in Substance Abuse, is providing space for the budding movement. Recognized for treating persons with addictions for hepatitis C, OASIS is a full-scale medical facility doubling as a drug and alcohol treatment center. Group counseling and information sessions impart a nonjudgmental, science-based approach to addiction. Proactive attitudes are illustrated by protest banners declaring "What Am I, Chopped Liver?" and by pictures of celebrated users on the wall — Sigmund Freud (cocaine), Howard Hughes (opiates), Daryl Strawberry (cocaine), Steve Jobs (LSD).
As the doctor who treated the new lobbying group's organizers for hep C, Sylvestre recognizes that addicts are not known for political participation. But the threat to services they depend on, she said, roused them. Since the September protest, she said, there's been "an aggressive effort to recruit people with addiction histories to take a stand for drug policy. The idea is: 'We're addicts and we need to vote.'"
One of the first hurdles for the group was finding its identity. At a recent meeting at OASIS, Chavez, a longtime heroin addict now sober for seven years, lobbied to include the word "addict" or "drug user" in the group's name. He wants to debunk the idea that addicts don't care about their own health and future. "To de-stigmatize addiction, you have to reclaim the term," he said. "It's like Chicano. It used to be a derogatory word but now people wear it with pride."
But a couple of the group's members shifted in their seats. "It'll attract the core group but it's going to scare other people away —people we need on our side," said one woman in her forties, who wished not to be identified. "What about people who are not there yet," she said, "and don't feel proud?"
The trick, the group agreed, was to attract people directly affected by drug policies, like users of methadone clinics and needle exchanges, while not alienating sober addicts, health-care providers, and non-addicts. "How about 'United Survivors for Drug Policy Reform?'" suggested Chavez. "I like survivors in there, because that way you include families."
Forming a consensus from an unstable population has proven a challenge for medical researchers and activists alike, but the users' union concept has sprung up elsewhere: New York City, Toronto, and, recently, San Francisco. California's voter initiative system also allows citizen groups with enough signatures to put a measure on the ballot. But signatures aren't valid unless they're from registered voters — a tough standard for a frequently homeless or otherwise unstable population. According to research gathered by the group for the action in September, the state's 147 methadone clinics serve 37,000 people — a significant, untapped voting bloc. For OASIS, the clinics are ideal voter registration sites.
That means getting the cooperation of the clinics and the attention of would-be voters, "and then getting them to vote, which is the harder part," said Sylvestre at the OASIS meeting. Chavez suggested the threat of losing access to the clinic as a talking point. But Sylvestre argued that most addicts they'd find in line would not be motivated by political activism. "You're not thinking proactively when you're using drugs," Sylvestre noted.
The hepatitis C-infected and drug-addicted have formed a close-knit community around Sylvestre, said Lisa Roellig, an organizer of the new group. Roellig came to OASIS a year ago after a physician at Highland Hospital told her it might be the only place that could treat her hepatitis C. "I could tell there was something going on when I walked in the door," said Roellig, 55 and a longtime "user and boozer." "Then Dr. Sylvestre walked in and started doing her thing."
Sylvestre's "thing" is part science, part activism. A graduate of Harvard Medical School, she's an expert in addiction medicine, and does not differentiate between addiction and other chronic illnesses requiring medical maintenance. While laypersons — and some doctors — often perceive addiction as a psychological defect or a problem of willpower, Sylvestre points to evidence from a 2000 study in the Journal of American Medical Association, "Drug Dependence: A Chronic Medical Illness." The study points out "significant and persistent changes in brain chemistry and function" in a drug-dependent individual, likening addiction to other chronic illnesses, such as Type 2 diabetes, hypertension, and asthma.
For Chavez, knowing the research helps him feel unashamed about organizing under the banner of drug addiction. "Breast cancer survivors are organized, people with MS," he noted. "They come out, that's how it starts: 'I have this [disease], it's okay to talk about it, and here is what we want to do about it.'"
Chavez, a 59-year-old who's been on methadone since 2001, said the drug allows him to stay off the stronger, illegal stuff. It has quelled a struggle in his body, he said, much like how taking blood-pressure medicine keeps hypertension under control.
But if the proposed Drug Medi-Cal cuts go through, methadone patients would have ninety days to wean off the drug, and stay off. However, studies show that the majority would relapse, eventually costing the state more than the money saved by cuts, because of criminal justice and medical expenses stemming from drug addiction. "The [proposed] cut felt like a target on my back," Chavez said.
So what is the ultimate ambition of a drug users union? "Meaningful and evidence-based drug policy," Sylvestre answered. That means, among other things, stepping up efforts to control the spread and progression of hepatitis C, while reining in opiate addiction with methadone treatment programs.
Roellig, Chavez, and Sylvestre all agree that eliminating access to methadone would have "catastrophic" consequences. Approximately 35,000 people regulate their addiction through methadone, according to Jason Kletter, a doctor and president of Bay Area Addiction Research and Treatment. Kletter contends that crime and hospitalization rates would shoot up should the state cut off methadone funding.
Back at OASIS, the name discussion entered its final round. Unable to resist the urge for self-satire, Chavez floated "Junkies for Justice." People laughed, but the suggestion touched on an important issue for the group. Unlike breast cancer and even HIV survivors, addicts are perceived not as victims, but as having brought their woes on themselves.
The 2000 JAMA study authors note that social stigma obscures the physiological aspects of drug addiction; drug dependence boosts crime, unemployment, and the need for foster care. "These expensive effects of drugs on all social systems," the study authors wrote, "have been important in shaping the public view that drug dependence is primarily a social problem that requires interdiction and law enforcement rather than a health problem that requires prevention and treatment."
Eventually, OASIS patient-activists decided on a name: United for Drug Policy Reform. Hoping to spark a statewide mobilization of California's drug- and alcohol-addicted, methadone-taking, homeless, or hepatitis C-infected population, the group has thirteen members in its official database — with sights set on the 2014 ballot. "I wouldn't say we're ready for prime time, but we're getting there," Chavez said. "It's a serious effort."