“Nothing About Us Without Us”: Drug users around the world organize for HIV and viral hepatitis prevention, healthcare, and human rights

by Suzy Subways, Editor, Solidarity Project

JUNE 2007 • Issue 5

We know that drug use—both legal and illegal—can increase a person’s HIV risk. We also know that just quitting drug use is not a realistic option for everyone. Harm reduction strategies accept that drug use is part of our world and provide effective tools to reduce the harmful effects that drug use can have, such as viral hepatitis, HIV and overdose. HIV, hepatitis C and hepatitis B can be transmitted when people share injecting equipment, so syringe exchanges give people clean, unused works and dispose of people’s used ones. Methadone is a drug that can be prescribed and taken orally so that injection is avoided completely, and many people find they can keep their lives more manageable and healthy with methadone or another type of opiate maintenance therapy. In this issue of Solidarity Project, we explore ways that drug users around the world are organizing to protect themselves and their communities when society won’t.

Spectacular demonstrations took place on World AIDS Day 2006 in Teheran, Iran. More than 800 people visited Persepolis’ programme for reducing HIV among drug injectors.

At the 18th International Conference on the Reduction of Drug Related Harm in Warsaw, Poland in May, the Joint United Nations Programme on HIV/AIDS (UNAIDS) announced that about a third of people who contract HIV worldwide outside of Africa are exposed through shared syringes during injection drug use or indirectly as sexual partners of people infected through shared syringes. The trend is similar in the United States, where these risk factors account for almost two-thirds of cumulative AIDS cases among women.

Between 50-90%, of active and former injection drug users in the U.S. have hepatitis C (HCV), with most users becoming infected within the first years of beginning to inject. In Southeast Asia, Central Asia and Eastern Europe, injection drug use is a primary mode of transmission for both HIV and HCV. Yet only 8% of injection drug users worldwide have access to prevention services like opiate maintenance treatment and sterile syringes, according to UNAIDS.

The U.S.-led global “War on Drugs”—which puts drug users in the hands of police and prisons instead of serving users’ physical and mental health, housing, and recovery needs—increases the risk of contracting HIV and viral hepatitis, as well as the risk of overdose. Stijn Goossens, Director of Activism for the newly formed International Network of People who Use Drugs (INPUD) cites an example from his home, Antwerp, Belgium, to demonstrate the absurdity of making particular drugs illegal: “Antwerp jails are full of Moroccans in for the hash trade. How come they’re not full of Scottish people in for the whiskey trade?” Of course, Goossens and INPUD would oppose the incarceration of alcohol vendors from any country, but his point is clear.

Even before the emergence of HIV, drug users organized to provide services for their communities and to defend their human rights. Those who are directly affected by an issue must lead every struggle for justice—and this struggle is no different. As with any movement, drug user organizing faces considerable challenges, but they can be overcome, especially with the logistical support of former and non-users.

A Movement Grows

Drug user organizing started in the Netherlands in the early 1970s to reduce the transmission of hepatitis B, and in 1984, a users’ group in Amsterdam began the first distribution of syringes to prevent HIV. The Drug User Organizing Manual, created by Jennifer Flynn for the Open Society Institute’s International Harm Reduction Development Program (IHRD), observes: “Heavily influenced by the AIDS movement, drug user organizing carries forward The Denver Principles, which rejects victimization and creates a new identity that individuals can call themselves, rather than being given a label by the outside world.”

In the United Kingdom, says longtime activist Andria Efthimiou-Mordaunt, syringe exchange has never been illegal, and public health, especially mental health, has usually been prioritized over criminalizing users. “We’re bonkers. That is, sad or slightly mad, rather than bad or naughty,” she quips. She estimates that about a quarter of the opioid users in the UK receive methadone, and 1% are prescribed heroin as maintenance therapy. Although only about a tenth of users get all the services they need, these relatively liberal policies have shown results. Less than 2% of injection drug users in the UK have HIV, according to a March presentation at the United Nations Commission On Narcotic Drugs. Efthimiou-Mordaunt attributes this success to the influence of drug user groups. “For years, people in more recognized user groups have been covertly influencing policymakers, who phone us requesting information—data about, say, safer injection rooms. This is rare, but it does happen,” she says. “Some of them surely care, and want to be advised from the horse’s mouth. They know we’re right, but they can’t be seen to be advised by us.”

Making Progress

By 2006, more than 65 countries had some kind of syringe distribution, and the volume of methadone prescribed globally had increased four times since the mid-1990s. Even Iran now provides clean syringes and methadone, and not only to the general public, but in prisons as well—one of only eight countries to do so.

In Canada, the Vancouver Area Network of Drug Users (VANDU) has about 1,500 members, hundreds of whom are actively engaged in the group’s efforts. Members visit each other in the hospital, attend nightly meetings to plan activist campaigns, and form alley patrols to check on users in the neighborhood. VANDU also launched North America’s only safe injection site—a safe, health-focused space where people can inject drugs and connect with healthcare professionals and addiction services. It has reduced drug overdoses and needle sharing, attracted users at risk for HIV and hepatitis C, and increased the number of users seeking treatment or counseling—without leading to increases in crime or drug use.

The Danish Drug Users’ Union, BrugerForeningen (BF), is one of the oldes t such groups. Methadone patients run BF’s daily drop-in center. The 630 members pay $18 in annual dues and can have free collective meals, laundry, vitamins, first aid and painkillers, and bicycle service. The also have access to computers and the Internet, physical workout equipment, painter and hobby rooms, musical instruments, video equipment, and copy and print services. BF members present preventive drug-education trainings to young people, nurses, journalists and other professionals. They also provide trainings to police cadets, substantially influencing the way police think of and treat drug users.

BrugerForeningen's Syringe Patrol safely picks up used needles around Copenhagen.

BF’s Syringe Patrol clears the streets of used works, picking up more than 200,000 syringes
and needles a year, and now gets paid by the city of Copenhagen to do so. The group’s
president, Jørgen Kjær, says, “We have done this citizen service on a voluntary basis for 10 years, and it is great now to be paid approximately $75,000 for a year’s work. Our next-door neighbors are a children’s library and the local citizen and culture house. Usually, user unions and most treatment institutions are hidden away along railway lines or harbor areas, but BF is right in the middle of Copenhagen, where we have rented 22-room premises in a community-owned building.”

Confronting Tough Challenges

This kind of integration with broader society is rare. Even in nearby Stockholm, Sweden, syringe exchange is illegal. On May 4, activists from the Swedish Users’ Union turned themselves in to the police to assess what the penalty would be. “We are handing out syringes for purely humanitarian reasons,” Berne Stålenkrantz, the union’s national chairman, told The Local, an online Swedish news service. “And we are forced to do so since society is not providing this type of healthcare.” INPUD’s Stijn Goossens praises their efforts and adds, “We are in a lucky position in Europe, because the consequences for this type of activity aren’t as severe as in the U.S. or Russia. That gives us some space to play with the system.”

The situation in the United States may not be nearly as bad as it is in China, which executes dozens of drug offenders each June to mark the United Nations International Day Against Drug Abuse and Illicit Trafficking. But the U.S. has become the greatest barrier to harm reduction worldwide and, of course, at home. In 2004, the State Department successfully pressured the United Nations Office on Drugs and Crime (UNODC) to stop supporting harm reduction. Two of the most relied-upon sources of HIV prevention funding in the world—the United States Agency for International Development (USAID) and the President’s Emergency Plan for AIDS Relief (PEPFAR)—refuse to fund syringe exchange.

Nearly 200 syringe exchange programs operate in the United States, but this is still the only country in the world with an explicit ban on the use of federal funding for such programs. Several states still outlaw syringe exchange. All 50 states and Washington, DC, have some kind of syringe access — but even if it’s legal to buy them at pharmacies without a prescription, people can still go to jail for possessing them. If federal funding could be used to support syringe exchange programs, thousands of new HIV infections would be prevented each year.

The evidence shows it can be done. In an August 2006 essay, Roseanne Scotti, director of Drug Policy Alliance New Jersey, writes: “In other industrialized countries that implemented ‘sterile syringe access’ policies early on, the rate of HIV related to shared syringes is much lower: Australia, 4 percent; United Kingdom, 6 percent; Canada, 17 percent.” And in New York City, where community-based organizations have made harm reduction fairly accessible, the prevalence of HIV among injection drug users decreased from 50% in 1990 to 30% in 2000.

The war on drugs not only makes it difficult to prevent the transmission of HIV and hepatitis C, but it makes life much harder for those living with either or both of these viruses. About 2.3 million people are currently incarcerated in the United States—the highest rate in the world—and the dramatic increase over the past 30 years is primarily due to sentences for nonviolent drug offenders. Prison is no place to be if you’re HIV-positive, and it creates even more challenges if you have hepatitis C. Many prisoners are never tested for HCV despite the high prevalence among incarcerated populations, and few incarcerated people who need HCV treatment receive it.

Developing New Strategies

Many Americans find it hard to imagine their country as one of the most repressive in the world, but drug user and harm reduction activists know the realities all too well. Some are developing innovative strategies to fight back. In New York City, Voices of Community Advocates and Leaders (VOCAL) is organizing itself as a drug users’ union modeled on the users’ unions in Europe and Canada. Members pay dues, reach out to other users with information and safe injection kits, receive leadership training, and aim for seats on city
planning committees and national advocacy groups related to HIV and harm reduction so that active users are not shut out of services—or the decisions made about those services.

As drug user activists worldwide put it: “Nothing about us without us.”

Many AIDS activist groups in the U.S. have empowered active users to fight for prevention services, housing, and health care. Some have active users in leadership positions, although the groups may not identify themselves as drug user organizations. These groups often look to alternative funding sources, such as benefit parties and other grassroots methods, in addition to applying for grants. The AIDS housing activist group and service provider Housing Works, also in New York City, has a catering service and thrift shops. These innovative ventures not only raise unrestricted income, but provide jobs for people who have a hard time finding work in a discriminatory environment due to a history of homelessness, drug use, or sex work, or simply because they’re transgender.

On May 13, at the 18th International Conference on the Reduction of Drug Related Harm, INPUD was formally launched after a year of internal development. With about 75 people in attendance, representing 26 countries and every continent but Africa, the network became a reality. One of its first projects will be to collaborate with the World Health Organization (WHO) to develop guidelines for conference organizers who welcome drug users on how to provide equipment for safer drug use to attendees who need it.

And after that? “I want to activate our professional harm reduction partners,” says INPUD organizer Stijn Goossens. “Harm reduction is pragmatic. But I think it should be pragmatic at the individual user level, not the policy level. If you’re going to be too pragmatic, with policy that hurts us, you will end up standing on the other side and fighting us.” Asked if he is saying that something more revolutionary is needed, Goosens replies, “It sounds revolutionary, but it’s all very logical.”

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Filed under Alternatives to 501c3, arts and culture, Canada, China, displacement and gentrification, Drug users' rights, economic justice, Europe, harm reduction, hepatitis, Native Americans/Indigenous peoples, New York City, people with AIDS in leadership, police repression, prison, Solidarity Project, stigma, treatment access, Uncategorized

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