Category Archives: hepatitis
Wednesday, July 4, 2007
[Note: I am a queer, white, HIV-negative person who uses female pronouns and has non-transgender privilege. These ideas are the result of conversations with many people, but I wrote this as an independent AIDS community journalist and a leftist, and I don’t speak for any group. Many thanks to my mentors who gave me feedback yesterday! It has changed a lot.]
The US Social Forum blew my mind, it grew my mind like a wild weed, it heard my voice and it rendered me inaudible—I talked and cheered and chanted so much that I couldn’t speak above a whisper from Saturday morning until today. It gave me a feeling like, the Left is finally getting its shit together. I got a sense that people of color—especially immigrants, indigenous people, women of color and queer people of color—were like, “the Left is ours,” and were bringing the most innovative strategies and concepts to be seen in years, rocketing the whole thing into another dimension.
The speech by Andrea Smith of INCITE! Women of Color Against Violence at the plenary on Liberating Gender and Sexuality: Integrating Gender and Sexual Justice Across Our Movements—and the audience of hundreds’ overwhelming response to it—was one of the most inspiring moments of my life. Not only did Smith question the domestic violence movement’s reliance on the state to protect us, her organization’s work offers all our movements the building blocks of an alternative.
I’ve been an activist for 17 years (mostly on access to higher education and queer and AIDS issues), and I feel like this is what many of us have been hoping for, yet not daring to imagine. Could the Left really be shedding its massive layers of racism, sexism, and homophobia? But the most inspiring moments always leave room for us to grow. This is a moment of great possibility for the AIDS movement and the Left. I won’t make a list of reasons why the AIDS movement had moments of feeling marginalized at the USSF, but to illustrate this, I will say that HIV/AIDS was not mentioned once at the plenary on gender and sexuality.
For those of us in the AIDS movement, this kind of silence tugs at old wounds, because Reagan did not say “AIDS” out loud until 1987, by which time an average of nine Americans had died of AIDS for every day that he had been in office. Now, we have lifesaving medicines in the US and other rich countries, but about 8,500 people around the world die of AIDS every day, and according to the NAACP, every day 72 African Americans contract HIV.
My goal with this letter is to point toward the light the Left offers the AIDS movement now, and ways the Left can learn from the AIDS movement now. The Social Forum illuminates both, because without women of color at the center, neither will ever find its way—and without the innovative new strategies emerging now, we would all just be talking.
Life after nonprofits
INCITE’s second book, The Revolution Will Not Be Funded: Beyond the Non-Profit Industrial Complex, sold out all copies at the Forum, and its panel by the same name filled up so quickly that organizers had to post a sign on the door saying, “Please do not open – Fire Hazard!”—and still people squeezed in. Southerners on New Ground (SONG, a multiracial LGBT/queer group) held a workshop where participants also discussed the limits of the 501c3 model (for example, competition for funding between community groups; letting funders set your agenda; allowing college graduates to serve as front lines in communities they know nothing about or are themselves gentrifying; big nonprofits setting movement goals; grassroots groups not being taken seriously; self-perpetuation being valued over service and honesty, etc.) and exciting new ways to do what SONG called “free organizing.” There were also “hybrid models,” with some aspects of both the 501c3 and the free, such as a working board of directors with no staff, or having members vote on organizational decisions and pay dues. (For questions to ask yourself and help stimulate more ideas, see http://www.southernersonnewground.org/?p=53)
One attendee talked about her childcare collective, which charges only $75 every five months (for groceries). An activist from Louisville said that her community trusts her group more now that they’re not backed by a white funder from outside the community. An activist from LA told how the Garment Worker Center is moving from a paid-staff model to all volunteers, with mentoring from Brooklyn’s Sista II Sista.
In the AIDS movement, we know how the move from street action to institution-building meant that we had built the capacity to provide lifesaving services to our communities. Plus, AIDS organizations are the biggest employer of LGBT people in the US—and in some places, a provider of jobs to many people in our community who have a hard time finding work in a discriminatory environment due to their experience with prison, homelessness, drug use, or sex work, or because they’re trans or gender non-conforming or living with HIV.
But our institutions are now turning on their creators—people living with HIV—and turning them into passive “consumers” of services, as if your local AIDS service organization were the local mall and HIV is no longer political. And “AIDS, Inc.” took us off the streets, cooled off our activism. Who among us hasn’t feared losing our jobs if we speak at that demo, or been told protests are a relic from the past? At the Campaign to End AIDS, a major national mobilization in 2005, Sean Strub, the PWA founder of POZ magazine, listed the major AIDS advocacy organizations that had failed to endorse or support the campaign, and railed against the lack of HIV positive inclusion on nonprofit boards. [note: “PWA” means “person/people living with HIV/AIDS”]
SONG members pointed out that whether or not we choose to find new ways of serving and organizing our communities, we’ll be forced to anyway, because our community-based nonprofits are dying. This especially speaks to the AIDS movement. Small HIV prevention and support organizations that Black, Latino, gay and other communities started 20 years ago are closing their doors all over the country because the federal money is being cut back to just cover medical care and HIV testing, not vital programs like condom distribution, street outreach, counseling, buddy programs, language interpretation, and housing. (For more info see http://www.poz.com/articles/401_11463.shtml)
The most inspiring and transformative HIV/AIDS program I’ve ever witnessed, Philadelphia’s TEACH Outside, has been on the chopping block several times this year. Run by John Bell, who was a leader in ACT UP for years and is an HIV positive, African American Vietnam vet in recovery who spent years in prison, TEACH Outside is a class for people living with HIV who are newly released from incarceration. John Bell teaches how to live healthy with HIV and strategies for dealing with life on the outside, mentors students in activism, and tells them to call him anytime—but the biggest challenge for students is dealing with the double stigma of prison and HIV. I asked him once if the program is more than just a class, and he said, “It has to be. Because people aren’t just unfeeling beings. Even though people have been incarcerated they’re still human beings. To allow that person to become a working member of society, we’re going to have to actually address the totality of their being. The emotional side, the spiritual side, the intellectual side.”
Philadelphia’s Project TEACH classes keep facing the axe because they are “psychosocial programs,” not medical programs. So what are we going to do about the totality of the human being when the government will no longer fund it? Let’s figure it out. The AIDS community should aim to be among those at the forefront of this effort, because our communities may have the most to lose, with lives depending on our services.
Protecting each other
We can also learn new ways to protect our communities from violence. At another Social Forum panel, the Young Women’s Empowerment Project (a youth leadership organization grounded in harm reduction and social justice organizing by and for girls and young women ages 12-23 impacted by the sex trade and street economies) from Chicago talked about defending each other from street violence without relying on the police, who offer their own forms of violence. Some of the ways they suggest creating conditions in which violence against women is unacceptable include solidarity among women (sisterhood in the hood), safe housing, allies who can deal with pimps, and self-defense training. However we do it, finding new ways to protect each other from violence is an urgent need for the AIDS community, because the police do not protect people who are most at risk for HIV, like trans and gender non-conforming people, sex workers, and drug users. And the link between HIV and violence—which messes with people’s ability to protect themselves from HIV—means that protecting our communities from violence is HIV prevention work.
Taking inspiration from each other’s movements
In the HIV/AIDS movement, we need to make sure that women of color and queer people of color are at the center, and also that HIV positive people are at the center. We need to take inspiration from this moment in the Left and be reminded that we can’t afford to compromise on taking the time to build new leadership among people directly affected by the issues, even when our time is urgently demanded to push for policy that can save millions of lives around the world. A strong movement is a social force that shifts policy in its wake or renders government decisions irrelevant by taking care of its own community’s needs.
We also need for the Left to understand that our leaders are still dying. And it’s mostly the people of color in our movement who are dying, for many reasons related to intersecting forms of oppression, but also because people with both HIV and hepatitis C have even more complex health challenges and treatment options than those with HIV alone. In other words, neither the Left nor the AIDS movement can afford to sleep on the issue of hepatitis C.
AIDS is now the leading cause of death among Black women aged 25 to 34. Nearly half of Black men who have sex with men are HIV positive. I’m not saying that people with HIV aren’t living full, healthy lives, with stigma being their most pressing HIV-related problem. But ACT UP Philly still has too many funerals. Within a few months several years ago, the New York City HIV/AIDS housing movement lost three beloved leaders—Joe Capestany and Joe Bostic of the New York City AIDS Housing Network (NYCAHN) and Keith Cylar, cofounder of Housing Works.
But it’s also a movement full of life. Have you ever been to a global AIDS conference? The Zapatistas’ Other Campaign (La Otra Campagna) was there last summer in Toronto. Korean activists were marching through the conference site against the impending US-Korea Free Trade Agreement. South Africans demanded treatment, Indian activists in bright colors chanted, “Big Pharma – Quit India!” and a Russian activist speaking at the closing plenary said, “Down with the imperialism of the pharmaceutical companies!” It was like the Social Forum, without the standing ovation (activists had to demand that people with AIDS be allowed to speak at the global AIDS conference).
And where else but the AIDS community have you seen heterosexual ex-drug users bond so closely with the most fabulously gender-bending queers? (This is not a rhetorical question, I’m sure it happens elsewhere, and I’d love to hear about it!) The AIDS movement at its best links together some of the most pressing issues of our time: homelessness, prison, the war on drugs, gender, sexuality, immigration, and displacement.
But if you want to tackle one thing, I’d say the Left can start with stamping out any tendencies toward HIV denialism, the idea that HIV does not really cause AIDS. While handing out flyers for the AIDS march at the Social Forum, my friend encountered some folks who said things like, “Well, if they would just stop taking those medicines that make them sick….” These comments were fairly insulting to my friend, who is HIV positive. This foolishness would not take root in the Left without our (the Left’s) willingness to let our intelligent distrust of pharmaceutical companies go uncomplicated by any understanding of the privilege many of us experience—not having to deal with HIV, and not living in communities whose health is compromised in so many ways by systemic racism, poverty, homophobia and transphobia. For more information about HIV denialism, please see AIDSTruth.org or the website of South Africa’s Treatment Action Campaign.
A moment of possibilities
Partly to push visibility of AIDS issues in the Left, and in the tradition of marches at the global AIDS conference, AIDS activists at the Social Forum decided to march up from the basement of the Atlanta Civic Center, through the lobby filled with people milling around t-shirts and literature, out the doors and past the tables outside. It was a fun, chaotic moment that people responded to with excitement and support. We stopped across from the Health Tent, where among the activists who joined us was Panama Vicente Alba, a longtime New York City labor and police brutality activist and former Young Lords Party member. I was thrilled and surprised to see him get on the mic (at the invitation of NYCAHN), because I’d never thought of him as an AIDS activist.
NYCAHN’s Jennifer Flynn enlightened me to the fact that Panama has been an AIDS activist for more than 15 years. “Needle exchange exists in the Bronx because of Panama,” she said, and I was struck by how within my own mind I have such a separation between my lefty world and my AIDS activist world that it has gotten me to where I’m putting people into boxes. Jennifer also pointed out that the Young Lords were well known for tackling tuberculosis, and for their understanding of how government neglect in communities of color leads to epidemics.
I had slept on the fact of Panama’s deep involvement with the campaign to demand HIV treatment for people on waiting lists in Puerto Rico. He had been in New Orleans at the HIV Prevention Leadership Summit in May, one of the activists whose graceful and somber protest interrupted a Bush administration speaker to draw attention to the crisis in Puerto Rico. “We know that more than a thousand people are on waiting lists for HIV medicines,” Panama told me. “But the mayor of San Juan said nobody died. As long as Puerto Rico is a colony of the U.S., this is the political reality that exists. We need a third party, outside the colonial government, to allocate the funds.”
The moment Panama united the AIDS movement and the Left was for me a moment of the clouds parting and the stars emerging to show our ships the way forward. Let’s take the opportunity now, with the excitement the Social Forum has hopefully instilled in us, to chart our courses a little closer together, share our stories, and really listen to each other.
Editor, Solidarity Project, Community HIV/AIDS Mobilization Project (CHAMP), 2006 – present
Independent AIDS community journalist and active/inactive member of ACT UP Philly, 2004 – present
Assistant Editor, POZ Magazine, 2001 – 2004
Founding member, Student Liberation Action Movement (SLAM), City University of New York, 1995/96 – 2001
Member, New York Local, Love and Rage Revolutionary Anarchist Federation, 1995 – 98
“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.
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.” Continue reading
By Masha Ovchinnikova
JUNE 2007 • Issue 5
Masha Ovchinnikova is an activist and project coordinator at FrontAIDS, a Russian AIDS activist group. She is a former drug user living in Moscow and has been doing harm reduction work for about three years. She can be reached at Riotmasha (at) yandex.ru.
There are more than one million people living with HIV in the Russian Federation, and about 80 percent have an experience of injecting drug use. About 60 percent of people using injection drugs have hepatitis C (HCV), and about five million people in Russia are officially registered as living with HCV.
Harm reduction or forced detox?
The Russian government is more attracted to taking repressive action against drug use than encouraging harm reduction measures. Now government officials are discussing forced treatment for drug users. Methadone is a medication from the “first list” (the list of most dangerous) drugs, which means it is banned. We tried to raise this question in a meeting with the director of the Russian narcological system, N. N. Ivanez, and he said that it’s absolutely unrealistic to create a methadone therapy system in Russia now.
Drop-in centers and needle exchange programs are dependent on the local government’s opinion. In some cities, like Kaliningrad, needle exchange programs are absolutely prohibited. They are interpreted as a form of propaganda for drug use, so people who provide it are subject to arrest. In some places, syringe exchange is legal but, still, it is not well funded. Usually there are just two or three exchanges in each city, and drug users are often afraid of going to such places because they could be arrested near them.
Drug users and human rights
Many financial, bureaucratic and moral barriers keep drug users from being able to take care of their health, or sometimes their lives. People can’t receive any medical help at the usual clinics if they are “kicking.” If you want to go into a detox program, you have to wait a few weeks, sometimes more. You have to prepare a lot of documents and take some tests (including HIV testing). Then, there is no guarantee you’ll get good medicine — but what’s for sure is that you’ll be blamed and humiliated by the clinic staff. Continue reading
By Anan Pun
JUNE 2007 • Issue 5
Anan Pun is the Chairperson of Recovering Nepal, a network of local drug user activist organizations throughout the Asian country of Nepal. He can be reached at ananpun (at) gmail.com.
I am an activist from Nepal, one of the poorest developing countries in the world, where HIV is growing explosively among injection drug users, sex workers, migrants and transgender people, and also in the general population. In a country of 2.3 million people, there are an estimated 200,000 drug users.
In Nepal, syringe exchange and maintenance therapy (with buprenorphine) are legal, and harm reduction has remained the mainstay of the Ministry of Health’s national program for injection drug users. However, the program only reaches 8.6% of drug users, according to a composite program reach index. HIV prevalence among injection drug users has gone up to 68 percent, from less than one percent in 1995. For harm reduction to be effective, people who need syringe exchange and other services must have access to them, and the government needs to fully support the program. There has been much conflict between the Ministry of Health and the Home Ministry, which is responsible for security and the war on drugs.
Recovering Nepal was founded in 2001 by an energetic group of active drug users and ex-users, including women and people living with HIV and hepatitis C. Our goal was to combat blood-borne diseases and drug-related harm. It began with a series of workshops, during which drug users had an opportunity to share their experiences, reflect on their feelings, observations and insights, and learn from each other. Now, we have 17 employees, 3,000 individual members, and more than 50 member organizations in different regions of the country. I have been working with Recovering Nepal since the beginning.
Most members of the executive board are ex-users or active users. Since May 2003, Recovering Nepal has served as a strong network of committed people who are helping to address stigma and discrimination, raising our voices to promote basic rights, lobbying and advocating for policy change, and increasing quality access to affordable, comprehensive treatment and care for drug users who are living with HIV and hepatitis C. Currently, Recovering Nepal is focused on training new grassroots leaders in the local drug users’ groups.
Since we held a protest at its headquarters on May 11, the Ministry of Health has said it is ready to involve organizations of drug users, men who have sex with men, sex workers, and HIV positive people in its Global AIDS Fund application and planning process. The Global Fund has denied grants to Nepal because these democratic reforms are needed. But we can see now that our protest has had an impact, and the situation will get better.
by Suzy Subways
APRIL 2007 • Issue 4
Iraq Veterans Demand Comprehensive Care for Returning Vets
War takes an unimaginable toll on its victims, which includes civilians caught in the crossfire as well as active troops and veterans. February’s Washington Post exposé of neglect and unsanitary conditions at Walter Reed Army Medical Center prompted congressional hearings and the firing of the Army secretary and two generals. Various commentators pointed out the similarities between the Bush administration’s undermining of the Federal Emergency Management Agency (FEMA) and the Veterans’ Health Administration (VA).
Until recently, the VA was known for providing the best healthcare in America. The media and the public largely ignored numerous reports over the past few years that described the grossly inadequate healthcare combat vets were receiving. Revelations of the conditions at Walter Reed have changed that. As at FEMA, budgets were cut, cronies were hired, and private firms were contracted to do work that could have been done at lower cost by government employees. Just as Katrina highlighted FEMA’s incompetence and inability to protect the residents of New Orleans, the Walter Reed scandal brings to light the shoddy medical treatment of soldiers returning from Iraq [see this excellent animated cartoon].
The VA is the largest provider of HIV and hepatitis C care in the United States. People concerned about HIV/AIDS in this country should pay close attention to VA funding and veterans’ health. One way to do that is to support the work of Iraq Veterans Against the War (IVAW). As well as speaking out for an end to the occupation of Iraq, the group advocates full funding for the VA and complete access to quality healthcare (including mental health) and benefits for returning veterans. Continue reading
Locked Up and Locked Out: Advocates Join Prisoners in Fight Against Double Epidemic of HIV and Hepatitis C Behind Bars in the United States
By Suzy Subways
NOVEMBER 2006 • Issue 1
An estimated one in four people living with HIV in the United States spends time behind bars each year. Depending on the region, up to a third of incarcerated people may also be living with hepatitis C.
Given these realities, it should be clear that a well-organized effort to address these overlapping diseases behind bars is necessary, and that prisoner health and public health cannot be separated.
Sadly, this sensible conclusion has not been reached by many policymakers or purseholders. Prisoners with HIV and hepatitis C, along with their outside advocates, are left without resources or much organizational support, battling mazes of bureaucracy that vary between cities and states, sharing ideas over the internet and snail mail, and struggling to keep up with the mounting need for advocacy.
As we prepare to enter 2007, there are a handful of efforts – including bills in Congress – that take on the challenge of HIV and hepatitis C in prison. With more eyes finally open to the problems inside prisons and jails, there may be increased opportunities to link and amplify these efforts.
Many activists point out the links between War on Drugs policy and the rate of HIV in the Black community. Between 1982 and 1996, as sentences for minor drug crimes got longer, the percentage of prisoners who were Black increased to well over half. Meanwhile, the National Institute of Justice reported in 2005 that 1.9% of male prisoners and 2.8% of female prisoners have HIV. Continue reading