What's the Hook? Diary of a Drop-In Center

HARM REDUCTION COMMUNICATION

What’s the Hook? Diary of a Drop-in Center by Marcus Day

In St. Lucia (a small island in the British West Indies), our DOH was supporting the establishment of a drop-in center in Central Castries (the capital, the center is located in George the Fifth Park, commonly referred to as “the Gardens”), in an area frequented by dysfunctional, chaotic and mostly homeless crack users. In 2001 DOH director Uli Kohler instructed me to spend a good portion of my time getting the drop in center up and running. The Hook! Many of us have discussed what it takes to get crack users into a drop-in center. One ad- vantage programs working with injectors (heroin, cocaine or speed) have is the lure of needles; this by itself is frequently enough to get users into the center, where other services can then be offered. We have always looked for that attraction with crack users. Some programs give out smoking kits containing filters and other paraphernalia; a few have created safer crack use brochures. Sometimes we make the mistake of confining our efforts to elements of users’ lives that are most obviously drug-related; unfortunately the harm that’s brought about by drug use in a society that doesn’t approve of it can be much more all-encompassing. The more interaction you have with your clients, and the

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HARM REDUCTION COALITION SUMMER 2002 NO. 14 THE HARM REDUCTION COALITION (HRC) is committed HARM REDUCTION to reducing drug-related harm among individuals and communities by initiating and promoting local, regional, and national harm reduction COMMUNICATION education and training, resources and publications, and community Summer 2002 NO. 14 organizing. HRC fosters alternative models to conventional health and human services and drug treatment; challenges traditional client/ provider relationships; and provides resources, educational materials, Table of Contents and support to health professionals and drug users in their communities to address drug-related harm. The Harm Reduction Coalition believes in every individual’s right to 1 What’s the Hook? Diary of a Drop-in Center health and well-being as well as in their competency to protect and help by Marcus Day themselves, their loved ones, and their communities.

8 The Card Game Editorial Policy by Chris Catchpool Harm Reduction Communication provides a forum for the exchange of practical, “hands on” harm reduction techniques and information; pro- 10 User-Driven Overdose Prevention in Santa Cruz County motes open discussion of theoretical and political issues of importance by Emily Ager and Heather Edney to harm reduction and the movement; and informs the community through resource listings and announcements of relevant events. Harm 14 Dispatch from the Drug War’s Front Lines Reduction Communication is committed to presenting the views and opinions of drug users, drug substitution therapy consumers, former users by Arun Prabhakaran and people in recovery, outreach and front-line workers, and others whose voices have traditionally been ignored, and to exploring harm re- 17 Deconstructing the Dark Side of Circuit Parties duction issues in the unique and complicated context of American life. by Robert Felt Since a large part of harm reduction is about casting a critical eye toward the thoughts, feelings, and language we have learned to have and 23 Managing HCV among IDUs: Overcoming the Politics of use about drugs and drug users, Harm Reduction Communication assumes Exclusion that contributors choose their words as carefully as we would. Therefore, by Allan Clear we do not change ‘addict’ to ‘user’ and so forth unless we feel that the author truly meant to use a different word, and contributors always have 26 Hep C Activists and Advocates Needed last say. The views of contributors to Harm Reduction Communication do not by Alan Franciscus necessarily reflect those of the editorial staff or of the Harm Reduction Coalition. Any part of this publication may be freely reproduced as long 28 Living with HIV and Hepatitis C as HRC is credited. by Beri Hull Design and Layout: James Pittman Printing: Dodge-Graphic Press, Utica, NY 29 Scoring Treatment: A Prisoner Beats the System Artwork Contributed by: Bert Gossen (cover, pp.8, 16), Joshua Lunsk by Michael Paulley (pp.22-36), Johnny Edney (p. 14) Photos: Stills from The Dope Operas, courtesy SCNEP (pp.10-12) 32 Hepatitis C Drug Therapy for People on Methadone Maintenance by Matthew Dolan Please write in your comments, feelings, responses—we want to hear from you. If you would like to submit an article, or photos or artwork, we would be happy 33 Treatment of HCV in the Methadone Patient to look at your material. (See our website www.harmreduction.org/news/ by Diana L. Sylvestre submission.html for submission guidelines.) HRC gives a voice to communities that are ignored by conventional media: drug users, people of color, individu- 36 HCV Healthtips als who are HIV or Hepatitis C positive, and sexual minorities. If you have never by James Learned written something for publication, assistance is available: just ask for it. (You can call the editor at 212 213 6376, or include a note with your submission.)

38 Book Review: Harm Reduction Psychotherapy. Send all submissions and correspondence to: A New Treatment for Drug and Alcohol Problems Editor, Harm Reduction Communication, Harm Reduction Coalition 22 West 27th Street, 5th Floor, New York, NY 10001 39 Witches’ Brew Or email: [email protected] by Donna Odierna

HARM REDUCTION COALITION Allan Clear, Executive Director Paul Cherashore, Publications Coordinator Alvaro Arias, Director of Finance Erin Grothues, Operations Manager Don McVinney, Director of Education & Training Miranda Chiu, Administrative Consultant Amu Ptah, Director of Policy OAKLAND OFFICE Donald Grove, Technical Resources Coordinator Maria Chavez-King, California Training Director Paula Santiago, National Conference Organizer Jenine M. Guerriere, Eastbay Program Coordinator Emily Winklestein, National Training Coordinator Micah Frazier, San Francsico Program Coordinator Adrienne Brown, HRTI Program Manager Daisy Buel, California Office Manager Main Office 22 West 27th Street, 5th floor, New York, NY 10001, tel.212.213.6376 fax.212.213.6582, e-mail: [email protected] West Coast Office 1440 Broadway, Suite 510, Oakland, CA 94610, tel.510.444.6969 fax.510.444.6977, http://www.harmreduction.org

2 themselves.” While I agree with him in principle, I also recognize that given the drug war, the game is rigged. Even if we were to stop all further transmission tomorrow, there would still be millions of people already infected who face potential illness and death from this virus. Those of us working in harm re- rom duction have a contribution to make: we can help level the playing field. At FromF least that way users have a chance. thethe editor editor —Paul Cherashore LettersLetters

his is the promised second installment of the missing Fall 2001 issue THOSE WE LEAVE BEHIND: DRUG POLICY AND THE POOR of Harm Reduction Communication. And again I’m not writing about T drug use in the harm reduction workplace. Instead, we’re going to de- To the Editor: vote a future issue to this and related subjects, so please send submissions my Thank you for publishing the article “Those We Leave Behind: Drug Policy and way. Because I have abbreviated space for this editorial (we’ve received a the Poor.” As a direct service provider and harm reduction practitioner, I worked few letters we want to print, along with an author’s response), I’m going to re- in the Lower East Side for many years. One of the biggest challenges I dealt strict my comments to a specific portion of this newsletter’s content. with was the continuous evictions of family members whose adult children were About half of this issue is devoted to hepatitis C. This is great timing, be- arrested and convicted for drug related crimes. I could never understand how cause at the Second NIH Consensus Development Conference on Manage- evicting someone’s 80 year-old grandmother from her residence would con- ment of Hepatitis C (June 10-13, 2002 in Bethesda, Maryland) there was a tribute to the fight against illegal drug use and sale. Not only does this not help, great deal of discussion about treating active drug users. In fact, the draft ver- but now it displaces another person on a fixed income, thus adding to the home- sion of the new 2002 NIH HCV Consensus Statement says, “Recent experi- less population. People change; not all persons addicted or dependent on a ence has demonstrated the feasibility and effectiveness of treating HCV in controlled substances are dangerous to the community. people who use illicit injection drugs (IDUs)...” If the language in the current In a great metropolis like NYC the only approach to intervention contin- draft version holds up, we should see greater accessibility to treatment for ac- ues to be punishment of individuals and families suffering from addiction. The tive users –and ex-users. Unfortunately, the current treatment is hard on the law recognizes alcohol dependency as an illness (disease) but continues to healthiest and most stable individuals; without sufficient support from either the imprison and break up families who have an active addict in their home. medical providers supplying the treatment, therapists, service providers, Many times the only form of support for someone addicted comes from their friends or family many active users may find it impossible to stick it out. If that families. Families are the strongholds of any neighborhood; by providing happens on a fairly large scale, we’re likely to see the medial and public some social services and related interventions and assistance, we strength- health professions concluding that their original decision to exclude users was en our society. the right one. When will these politicians understand that punitive measures do not work We have to make sure that doesn’t happen. We’ve demanded that users in the “War Against Drugs?” Fellow colleagues and myself spent many fruit- get greater access to current state of the art pharmaceuticals. Now we have less hours requesting fair hearings with the NYCHA administration, in many an obligation to work to make this access a success. That means making HCV instances providing character reference letters, completion’s of treatment, pa- patients aware of their options, and educating those who seek conventional role release papers, certificates of disabilities, etc. All this work and docu- treatment on the side effects, while supporting the decisions of those who de- mentation fell on deaf ears, because the decisions had already been made to cline or defer conventional treatment. Just as decriminalization of drugs with- evict the families or person from their homes. out any planning would likely be a failure, giving users—who are often facing I am no longer working in the Lower East Side but continue to support a multitude of other health and psychosocial problems—potentially debilitating the LES Harm Reduction Center and the Family Justice Program, formerly medicines without offering any strategies for dealing with the consequences known as La Bodega. I am currently the director of social services for River- can be a recipe for disaster. Especially interferon and ribavirin, drugs that will side Place, a transitional housing SRO servicing homeless men and women almost always make the patient feel worse, and may not even work. living with AIDS. If we really want to ensure that active users successfully complete treat- Let’s keep plugging away at the politicians and have the law banished ment, we need devise a comprehensive approach to its administration. What from NYCHA. It’s nothing more than another version of the Rockefeller Law, would such an approach look like? First, an education program letting but used to punish families and create additional homelessness. prospective patients know what to expect. Second, offering antidepressants —Floyd F. Cuevas, NY, NY prior to initiation of treatment (so that they take effect in a timely manner) and counseling throughout the entire treatment course. Third, assistance with ap- To the Editor: plications for disability or public assistance, should an employed individual I enjoy getting copies of Harm Reduction Communication, and usually read it no longer be able to continue working, or intervention on the patient’s behalf cover to cover. I did want to point out, however, that at times you need to do if they’re already on public assistance and required to work. Fourth, access to some fact-checking. In the most recent issue, Corrine Carey’s article on “Drug alternative treatments, like acupuncture, massage and herbs that might relieve Policy and the Poor” had several factual errors regarding the Rucker Case the deleterious affects of the medication. Fifth, access to pain medications, which would have been easily checked. (See http://a257.g.akamaitech.net/ since they often help. Sixth, an understanding that it’s ok to quit if you’ve had 7/257/2422/26mar20021145/www.supremecourtus.gov/opinions/ enough. And lastly, actively lobbying for new drugs, and the inclusion of drug 01pdf/00-1770.pdf) users in research trials. Because the current drugs just aren’t good enough, Darlene Rucker may or may not have been a grandmother. However, ac- and until more regular folks start getting sick (read, non users), we’re going to cording to facts presented to the U.S. Supreme Court, it was her daughter have to fight hard for alternatives. caught with a crack cocaine pipe and cocaine that caused the notice from the Allan Clear says in his article, “Managing HCV among IDUs,” “it won’t be Housing Authority. Furthermore, her daughter was then incarcerated, and ac- public health institutions eliminating this epidemic, it will be drug users tion against Rucker was dropped, as her daughter “no longer posed a threat continued on page 38

3 What’s the Hook?

Diary of a Drop-in Center by Marcus Day

more you continued from cover more you allow yourself to think outside of harm reduction program in the States, this break it off. Of course this decision was met box, the greater the likelihood of finding so- account is still useful in showing how creativ- with some resistance (I am sure that this will lutions that work for both of you. We wanted ity can be used to bring in your clients, while not be the last time decisions surrounding to do something that would have a more making a positive impact on their lives, too. the formation of this drop-in center are met practical impact on local users’ lives—and Although the route we took would be un- with some resistance). The usual comment bring them into contact with our program. likely to be repeated in the States, substitute was “If you do that (install a standpipe) it will In the case of our St. Lucia Center the at- shower and bathing facilities, or access to a just attract “them.” To which I usually com- traction we decided upon turned out to be a free washer and dryer, or a place to cash mented, “That’s the idea.” You can imagine standpipe supplying fresh water! In the past in collected aluminum cans, and you’re in the looks I received. we’ve had a problem with homeless drug business. After I was finished I noticed a fellow with users breaking the water pipe behind the a bucket washing a taxi van on an adjacent drop-in center building to get water to bathe, Tuesday June 5 street that divides the public market from the and more importantly, to wash cars and taxis Once again the pipe was broken over the Gardens. Not knowing what kind of reaction to bring in needed income. By giving our weekend. After trying for two and a half days I would get, I walked over and told him about participants access to clean water, we not only to get a plumber to fix it I decided that I’d the pipe. Obtaining clean water to ply their addressed their survival needs, but also ex- better do the work myself. (I’d been reluctant car wash trade is very difficult and costly— panded the definition of what is a “proper” to publicly display my plumbing skills lest I’d fifty cents a bucket from the market stand- harm reduction service. find myself inundated with requests to fix pipe two blocks away; still, his immediate Last June I began the project and I people’s plumbing, such is life on a small enthusiasm surprised me. Apparently the thought it might be worthwhile to share my Caribbean island.) In a purely practical deci- gods of street work were smiling on me that “diary” of what happens as this center gets up sion I decided to include a standpipe into the day because I had selected at random a per- and running. Although our needs are quite repair so that if anyone wanted to take water son who felt much ownership in the Gardens different from those of the average urban they could just open the pipe rather than and who would turn out to be a key player in the next few days. Morris (his name) ex- plained how he and the other car washers got water and how difficult it was to find a toilet to use, or get a bath. He also told me how much crack he smoked and how often: “two, three rocks a day and only at night.” Of course he wanted to be put in charge of the The more standpipe and collect the “fee.” He had a bit of a problem accepting that it was free, clean interaction you water being such a valuable commodity in St. Lucia. He thanked us for the service we were have with your providing and said he had to get back to washing the cars. clients, and the Later he came back to me and said he had organized a meeting of “all” the car washers more you allow in the area at 11:00 AM on Saturday to discuss the standpipe and its use. I’ll be sur- yourself to think prised if this happens, but I’ll be there on Saturday just in case. outside of box, the At that point I surveyed my handiwork, which was a bit crooked and oddly colored, greater the (I had used a piece of pvc pipe from a year- old carnival costume for the patch so some of likelihood of the pipe was bright florescent blue) and went finding solutions home feeling pretty good. Wednesday June 6 that work for both The next morning I went down to the Gar- dens to turn on the water and see if the newly of you. installed water pipe leaked. Re-examining

4 the work’s quality in the light of a new day, I By giving our realized that there was no way this flimsy plastic pipe would hold up to heavy-duty participants access to commercial use by a group of individuals in various states of intoxication. I also realized clean water, we not that the standpipe had no outlet to drain the runoff; as a result the ground beneath it only addressed their would soon become muddy. It looked as though yesterday’s good deed was leading to survival needs, but more work today. I turned on the water, (NO LEAKS! YEA) and went back to my also expanded the house to organize everything I would need to make a cast concrete column around the definition of what is a pipe and small slab underneath it to keep the mud at bay. “proper” harm On the way home I passed Dave, a crack user I’ve known for years who lives in my reduction service. neighborhood and is a skilled wood carver and artist. I stopped to see if he was available to assist me with my ever-expanding project; he was happy to help out his fellow users. We drove directly to the Gardens to assess the project. (All projects must have a needs assessment!) Being doers rather than talkers we picked up a piece of iron rail and began him what he was wearing to court and he mo- Uli had encouraged me to take this on, and to dig a hole looking for the wastewater out- tioned to the clothes he had on his back— I’m glad he did. Of course the paper work let. We promptly broke the water pipe in a ragged short pants and a torn t-shirt. In my was also building up on my desk! “Oh well,” I new spot. The entire project promptly refo- usual habit of over-committing myself I told thought, “I don’t need much sleep.” cused on repairing the broken pipe, which him to meet me at 8 AM the next morning Dave and I were able to complete the first called for a reallocation of materials re- for a shower at the center, and that I would phase of the pipe repair job by 5:30 PM, then sources—we needed a dollar fifty to buy two find him some clothes to wear, too. Felix then we loaded up the truck and headed back to pipe couplings! asked if he could also get a shave and a hair- the school for dinner. By this time Dave real- It soon became time to break for lunch. cut. I smiled to myself, “Welcome client 3.” I ly only wanted to get paid and go score. I told Dave’s strength was waning and it was clear had been worried about how we would get him that it would be good to fill up his belly he wanted to pipe up. I gave him some dates clients, that no one would come to the drop- before he went off to party, and gave him a to eat, as a sugar buzz is better than nothing. in center—kind of like holding a party and big bowl of salt fish, green figs and spaghetti. Then we shut down the job and drove home worrying that no one would come. I was I gave him a spare pair of shoes—and again for lunch. My wife’s Montessori School pleased to be wrong. wished I had 100 pairs of men’s shoes and (next to my home) prepares food for 50 I began to realize that there was a small work boots to give away to the guys I met children, 7 staff members, my family and group of human beings who were beginning daily. Woman’s clothing is much easier to get anyone else who wanders by looking hungry. to have some expectations of receiving ser- than men’s clothes—especially shoes. (If I There is always food for one more mouth. vices from our new project. We now had an can’t help the guys curb their use at least I Dave got a very large helping from the obligation to keep going—not so much for can help them look smart while they wander kitchen and a big cup of strong coffee with ourselves but for them. We were going to the streets.) I paid Dave his $50.00 for the lots of sugar from my private stash—not have to find some dependable funding day’s work and he walked off into the sunset quite the same as piping a rock but my cof- sources. Carole’s (the drop-in center’s coun- with a few mangos he picked from my yard fee has been known to cause at least a minor selor) salary was paid up until the end of July. and a hunger in his eyes. buzz in the unsuspecting. My salary was probably paid until October, By now it was 6:30 PM and I had to get After lunch we loaded the truck with the but with the European Community (EC) ready to attend a posh farewell cocktail for necessary materials and tools, most of which there are no guarantees without pen to the British High Commission (BHC) and his were scavenged from around my yard. We paper. During the afternoon I had fielded a lovely wife—and welcome the new BHC and begged the couplings from some workers few phone calls, including one concerning a his lovely wife. Even though I would have pre- from the water company and thus saved the regional CARICOM meeting the following ferred to sleep, I knew that the opportunity buck fifty. Back to the job. While working on week in Antigua. There I would have an to network with people who could help the the “fortification” of the water line, Greg opportunity to advocate and lobby regional drop-in center was too valuable to miss. I dropped by to ask if it was true we were giving policy makers to include street and commu- dressed casually elegant, remembering the away water. Our second client had arrived! nity-based intervention programs into the expression of a dear old friend in Saint About 3 PM Felix came by. In and out of jail, regional policy response to the drug prob- Thomas: “Boy, you clean up real nice.” Felix is a homeless person who has used lem. As I stood in the Gardens in my knee- It was actually a good evening. I got a ganga and crack for years, but at 40 prefers high wellies, short pants, dirty tee covered in local hotelier to donate 25 used bath towels rum as his drug of choice. A nice soft-spoken cement dust and mud, I giggled at the di- to help with the shower program. I asked fellow, Felix told me he had to go to court on chotomy of the scene. I was morphing into the French ambassador for support for the Thursday morning at 9 AM for stealing a jar NGO MAN, responding to needs at the grass project, and promised to take him to meet of cashews from the supermarket. I asked roots and regional levels with equal aplomb. some of the other NGOs working in the

5 “What do you need?” I should be prepared to I began to realize hear answers that are not necessarily in keep- that there was a ing with my expectations. Saturday June 9 small group of human Tim, a.k.a. Mufi, a.k.a. Coconut Man stopped by my house at 6:45 AM. It is un- beings who were usual to see Mufi this early unless he had been up all night. I have known him for 10 beginning to have years and have watched his physical deterio- ration from the crack. He was a handsome some expectations of young man when I first met him, but after a broken jaw, various cutlass wounds, and now receiving services a strange case of boils erupting all over his body, he gives a frightful appearance. He from our new project. lives in a very small and humble one-room squatter’s house not far from my home. He built it out of scrap lumber; it has no running water, no electricity. My kids are scared of him, which is sad because he is a nice guy. As much as I like him it is also 6:45 AM; I have not had the first hit of my drug of choice yet (coffee). I muse field. A major focus of my work seems to be his beard and moustache. For a moment I to myself about the issue of “boundaries and making connections; bringing together peo- had flashes that I’d turned into Floyd the social work in small island states.” A great ple who have something with people who Barber on Andy Griffith. topic for a regional roundtable discussion, need something. I got home after midnight Grooming completed, I sent Felix off to maybe I should post the question on the list and thought about my commitment to meet the shower—and to change into his new (Ed: The Caribbean harm reduction e-mail list, Felix at 8 AM the next morning. What have clothes. He came out all clean and snazzy, a where this diary was originally posted). This is a I started? new man ready to meet the rigors of the Saint problem that a person living in a large coun- Lucian criminal justice system. I couldn’t try may not be able to relate to. In a large, Thursday June 7 help but feel good about the whole affair. I anonymous place a person can go home I awoke at 5:30 AM, grabbed a cup of yester- left the center for my office, a happy man. and be anonymous. In a small island state day’s coffee from the flask and grimaced at At 10:00 Carole called me from the drop- we are known in the community. The guys I the bitter taste. (I figure it’s more for the in center to tell me she had collected the first work with at the drop-in center know where buzz!) I had 2 and a half hours ‘til my date dollar from the standpipe. Although Morris I live, what car I drive, that my wife owns a with Felix. I started to think about what I had indicated that he expected to pay for the pre-school, everything about me including would need to assist Felix in his transforma- water, and some of the other guys I ran into whatever myths are currently circulating. tion. Hair clippers, towel, a shirt, pants, (ask concurred, I hadn’t thought this angle Anyway, there is Mufi with a big grin, look- Pinkie, my wife, “Honey do you have an old through. If they wanted to pay for the ing slightly puckish. “One more for breakfast, pair of pants you don’t need for Felix to wear water—after all, they had to pay for it at the Pinkie,” I tell my wife, while my ten-year-old to court?” I scrinch and wait for a barrage of market—who were we to say no? They insist- Minnie tells me not to feed him, which then “Who’s Felix? What did he do? Why you?”). I ed, and we weren’t going to deprive them of leads to a discussion of the meaning of char- paid the price with blood and in exchange the opportunity to contribute. Carole de- ity. After some grilled cheese sandwiches and got a great pair of jeans that I know he will scribed how Greg had asked what he should coco tea the purpose of the early call is re- like. Its now 5 after 8 and I rush off to the do with the money if no one was there to col- vealed: Mufi had helped me put on a new Gardens wondering if Felix will even be lect it. She had told him to keep track of the roof the prior week and now wants some of there. Three minutes later I arrive; there is number of buckets he filled and pay later, the left-over galvanized roofing for his moth- Felix waiting patiently under the eave of the and that we trusted him, after which he er. I smile at the fact that he has asked for it building sheltering from the pouring rain. looked kind of confused. Apparently no one rather than just taking it. Of course he want- “Well, lets get on with it.” I tell Felix, “Sit has trusted him for a while. Since we don’t ed me to deliver it to her house, about ten here next to the outlet.” I plugged in the clip- care if we collect any money it’s easy for us to miles away. Well, that was the hook for me: per, then realized that I first had to attack the be cavalier about the bucket fee. It will be in- this was taking our relationship to a new job with a scissors. Meanwhile I admitted to teresting to see how it turns out. Carole re- stage. He was comfortable enough for me to Felix that I had never cut another man’s hair minded me of the meeting of the car washers meet his mother and I of course really want- before. Felix grimaced. I’d anticipated a on Saturday. It’s all the buzz around the mar- ed to meet her and see what his home life was rough job and had worn my work coveralls, ket. The guys now want to form the Gros Islet like before he moved out. but as the four-inch locks fell to the floor I Bus Stand Car Washers Association. “Would He loaded the galvanized sheets onto the was relieved not to find any indigenous in- this be considered a user’s group?”, I wonder. truck while I got ready to leave. My son Bass habitants living in them. When the locks were It’s interesting to muse that if you asked came with me. When we arrived at the gone, I fired up the clippers and finished the most people what the crack users in central neighborhood I still had visions of Mufi’s trim job. When completed Felix asked for a Castries needed, they’d be unlikely to pick mother being poor. Of course this is just a shave. While I wished for a straight razor and water to wash cars. And yet this was just the manifestation of my prejudice, because as I one of those brushes with talcum powder, I thing that these guys said they needed. The know but sometimes forget, drugs touch all. made do with the hair clipper and removed lesson for me is that when I ask a person But at the moment I was surprised by how

6 nice the house and yard were; it was all very read vs. those who pass as readers and on and Epilogue middle class. A very nice lady, Mufi’s mom on, as much social stratification as Her The George the Fifth Park Drop-in Center is knew of me already because apparently Mufi Majesty’s Court. In real terms there is a prob- a new venture. We have only been around for speaks of Pinkie and I often. She thanked lem between the guys who come and fill up the past 18 months. We started by providing me for taking care of him. I was touched. I many buckets (these guys are “rich” because fresh water, some used clothes and lots of never suspected he told his mother anything they own multiple buckets) and the guys who love, understanding and respect to the peo- about my wife and I and how we help him. own one bucket and need to fill it fast and get ple who came by; we now offer bathing facil- When I told my wife she was also touched back to washing cars or lose the job to some- ities and are feeding a whole bunch of that he would tell his mother about us. In one else. It looks as though one solution is people, too. fact, she changed her attitude toward him multiple taps, one being the express fill up It’s a funny thing; the area where we are and became a bit softer. It is clear that the line, one bucket or less. Another solution is located is a botanical garden that has seen demonization of drug users has succeeded for an agreement that a multi fill-up defers to better days. Located in the center of a city in assisting us to forget that even they have a single bucket or some such regulatory that has been all but abandoned by the mid- mothers. Mufi’s mom gave Bass a soft drink move. I hope to ask the guys about schedul- dle class, the Gardens have over the years at- and a big bag of mangoes and some cuttings ing another meeting so that this and other is- tracted a homeless crack-using population. of a bougainvillea plant. We said our good- sues can be discussed. (The meeting on the The place was pretty crazy before we started byes and drove home. Saturday before last never came off.) to operate, with violent muggings a usual I start to wonder when everything falls into occurrence. Sunday June 17 (Father’s Day) place so nicely, when everything is just mesh- In the past 18 months since we have begun I went to the drop-in center to check out the ing, that there is balance in the world and to engage the user population and reach out water situation. When I arrived I noticed a few that something is going to go wrong. It seems to them with respect the response has been guys taking water and went behind the build- that the time was right for this initiative and extraordinary. There aren’t any fewer home- ing to check them out. A bit of rubbish had that the pieces continue to fall into place. less crack users, they are not particularly any accumulated in the week I was away, a clear in- When things are going too well I can’t help cleaner or using less, but their attitudes to- dicator that the space was being used! I need but wait for the hammer to fall, and that feel- wards life and the people around them have to make sure there is a trash receptacle in the ing of “impending doom” tickles my con- begun to change. They realize that there is back and encourage the guys to use it. sciousness. Oh well, “Do not dwell on the someone who cares about them, for no other Johnson came by to fill his bucket and in- unpleasant things of life.” reason than they are here. They realize that formed me of the “raging” controversy over I continue to purge myself of any expecta- they live in a “community” and have begun to water rights and usage. There appears to be tions, so the small victories are that much act as members of that community. They co- serious disunity between the guys who pay sweeter and the setbacks not as devastating. operate better among themselves and with and those who don’t. Especially on weekends It is kind of a “Zen and the Art of Drop-in the neighbors. and evenings when there is no one to moni- Center Management” philosophy. I regularly I went up to Al (one of the car washers) tor the situation. The root of the issue lies not tell people that I have no false conception of yesterday just to say hi and ask about him. He in the water but in a class war between the the “noble savage.” I realize very well that the started to tell me how much the water has various categories of users of the resource, people I work with are probably the most self- meant to him and how appreciative he was guys who pay regularly vs. guys who pay some- ish, self-centered and self-absorbed people in and to ask him if I need any help because he times vs. guys who don’t pay at all. Current the world. It’s the drug, the crack, and the de- could give me a hand if I needed one. Well crack users vs. former crack users, crack users sire to feed that need for crack that greatly I’ll tell you what a difference this made to me. with shoes vs. those without, those who can contributes to that “self.” Since September 11 I have been in a kind of stupor. Having grown up in the shadow of the WTC the impact of that day has really hit me hard. Al gave me just what I needed that afternoon, just a bit of TLC from him to me. That kind word really made my day. That is not to say that we don’t have problems. We still have people getting naked behind the building to bathe, sometimes the When I ask a person guys have a heated discussion on some current event that sounds like a fight but is re- “What do you need?” ally just a “discussion.” Our neighbors still begrudge the water we provide for free, but I should be prepared be that as it may be we will persevere because we are able to. I truly believe “to him to hear answers that who much is given much is expected;” armed with that philosophy we will contin- are not necessarily ue to refine and improve the work we do. in keeping with my

expectations. Marcus Day is an educator by profession, born and raised in New York and now living in St. Lucia. He is the coordinator of the Caribbean Harm Reduction Coalition, and runs the G5P Drop-in Center in central Castries.

7 ya and I grew up in the same town, supplies. Situations in these environments the other goodies we had to give away. There San Rafael, and though quite differ- can become volatile quickly and I too de- is no sense in doing outreach without having P ent in many ways, we shared many of pended on Pya to watch my pale ass. Shoot, things to give to folks to make relationships the same values, cares and concerns in life. Pya is capable of knocking a large man out and begin conversations about risk factors. Both of us ended up as outreach workers in and I always made a point of avoiding her We would never leave the office without Oakland, drawn to the drama of life in a “play” punches when I had a chance to see cookies, toothbrushes, tampons and whatev- collapsing inner city with a real desire of them coming. The girl can throw down and er else we could hustle up to give to folks. In having a positive impact in an utterly “squab” like a man. the midst of a throng of users, we spotted depressed and decaying area. A city sur- This leads me to my story, which by sheer Dana lazily making her way towards us. Dana, rounded by wealthy suburbs and prosper- providence and quick thinking by one of our also known as “Crazy Dana” in West Oakland, ing economies, where the Bay Area’s urban needle exchange participants, ended up was born heroin-addicted and came up very poor have been relocated in East and West being a memorable outreach experience and hard, losing her mother to an overdose. Oakland’s sprawling ghettoes. Joblessness, not a tragedy. Dana was a priceless repository of informa- high crime, huge health disparities and We were doing street outreach one sunny tion and knew everyone and everything that rampant drug use are a normal state of afternoon in West Oakland’s “lower bottom,” went down around there. She was a valuable affairs for these neighborhoods. an area that once was the heart of a vibrant resource for us as HIV/AIDS educators, let- Pya, like me, has an eye for “flavor” and a Black community known loosely as the ting us know what was hot and what was not, love of street culture; the music, dress, style “Harlem of the West Coast.” A freeway was repeating tales from the hood and putting in and language of the down trodden and op- built that took absolutely no interest in the good words for us. pressed. “It’s real” as the saying goes and you feelings and lives of the area’s inhabitants It was a sunny summer morning and Dana can’t get any more real than Oakland’s hard and entire neighborhoods were knocked was in full regalia. She was wearing one of her

The Card Game by Chris Catchpool

Illustration by Bert Gossen core “hoods.” Pya’s attraction to this scene, at down to make way for “progress.” “Pops,” one patented see-through sundresses with black times, has led her by the nose right into the of our older needle exchange participants, fishnet stockings and garters, while anchor- thick of trouble. While she’s an outstanding lived on 7th Street during its heyday. He ing the presentation with a pair of garish red outreach worker, particularly with young would wax nostalgically on the jazz clubs, pumps and lipstick to match. Around her street dealers and hustlers, she’s also attract- restaurants and other cultural venues that hair she wrapped a scarf with the knot on top ed to tall, good looking, rough young men, used to “hop” where a freeway, vacant lots, giving her the appearance of having big Play- the kind you will find “grinding” on the cor- the main Post Office and some derelict, al- boy Bunny ears. She was the self-appointed ner, “sagging hard” with their back pockets beit inhabited buildings, now stand. Sadly, “Fairy Dog Mother” of West Oakland. There squarely opposite the backs of their knees. “I this particular chapter of West Oakland’s his- was no mistaking Dana; she was her own per- can’t stand no soft man” as Ms. P. is want to tory has been repeated many times in Black son, unafraid, unselfconscious and outra- say. Pya, though, is my soul-mate and while communities throughout the US. The only geous when she felt the urge. You could spot she calls me all sorts of pejorative names re- thing that “hops” around the lower bottom her a mile away. Dana was not the neighbor- lated to my skin color and age (at 33 I’m an- now is the other “hop”—black tar heroin. hood clown, though. She was smart, shrewd cient and have no sense rolling like a As we made our way to Campbell Village, and had a hard, mean side that could back teenager), I know she loves me, trusts me and an Oakland Housing Authority complex, and people up. No one messed with her. On this depends on me to “watch her back.” As out- neared our Saturday morning needle ex- day she went far beyond the role of “key in- reach workers, we enter crack houses and change site, we encountered a steady stream formant” and “needle exchange activist” and shooting galleries regularly to provide harm of injection drug users asking for the bleach, basically saved our hides. reduction education and offer risk reduction cookers, alcohol wipes, cotton, condoms and See, Pya, who hears a lot and knows a

8 hell of a lot of people herself, decided that rency between them. In an instant I realized rolling her eyes around her head, “and she wanted to show me a gambling shack. our grave mistake. We had no business in they’re from the needle exchange!” She was She was sure I’d be interested in seeing it there, and we looked like fucking Narcs. At completely out of breath, sucking air savage- and thought that we could maybe meet the back of the table, the seat from which all ly, swaying in a 180-degree arc while somehow some new folks who could benefit from our who entered and exited the room could be defying the laws of gravity, her arms hanging needle exchange services or something else studied, sat a man who glowered at us with akimbo, doubled over at the waist and gestic- we had to offer. What did I think? In my complete stupefaction. All heads at the table ulating wildly in-between loud inhalations. utter ignorance I had only a vague, “Holly- snapped in our direction and suddenly the The huge man at the back of the room just wood” notion of what a “gambling shack” man with the coveted seat rose up out of his blinked once and looked down at my hand was. The danger we could put ourselves in chair bellowing, “What the FUCK is this!?!?”, which was still stretched out in space clutch- by traipsing back there unannounced and in a deep thunderous voice that erupted like ing a ridiculous handful of multi-colored and unescorted was something we regularly a white-hot lava burst and just about melted multi-flavored condoms as though in reli- faced, especially when we were breaking my insides. His voice had the impact of a gious supplication. No one said a word. No new ground in a crack house or shooting sonic boom. The man kept rising until all 6 one even twitched. The men seated at the gallery that we hadn’t been in before. feet 8 inches of him unfolded out of the table looked like wax castings. At this point, Often, when we entered drug houses we chair, all the while clutching something at his Pya put her arm through mine, like she would take a deep breath before stepping waist that I can assure you was meant to sometimes would, and said, “I think we’ll be in, relying on our wits and street smarts to do harm. His face was emotionless but his going now” and steered me out of the room. get us through. I assumed we would be tak- eyes were on fire, radiating hate. It was pure- As soon as we hit the passageway she picked ing the usual risks. ly reflex for me when I cried out “anyone up the pace and we made for the sunlight However, I misjudged Pya’s enthusiasm. interested in some free condoms???”, in the like a pair of spelunkers coming out of a Pya, being 22 and bone-headed, wasn’t most cheerful and helpful voice I could treacherous cavern, careful not to disturb the thinking about what we might look like to muster under the circumstances. Then I natural history of the place. those inside the card room. Her excitement smiled naively and stuck out a fistful of rub- We hit the street and turned the corner over finding the card shack outstripped her bers at the man seated nearest me. Not one fast, and Pya let out a big sigh, “Whew!” and sense of discretion and safety. See, as our fellow outreach worker, Jabari, would say, “Pya is the kind of person who will get you into some real shit and somehow come out un- All heads at the table snapped in our direction. scathed.” To those who knew us we were a familiar if odd pair; but to the uninitiated, we Suddenly the man with the coveted seat rose up out probably looked like a suspicious lot. She— coffee brown, 5 foot 10 inches tall but wear- of his chair bellowing, “What the FUCK is this!?!?” ing open-toed heels that put her over 6 foot tall, a too-short mini skirt, two impressively large Afro-Puffs just above the ears, a flashy expression changed, not a sound was heard, began a nervous giggle, which turned into pair of stolen Armani sun glasses and large nothing moved. Sprint could have filmed a one of her infamous full-throated roars that gold hoop earrings. Her look could only be pin dropping in there. Four pairs of eyes just could literally be heard for blocks. “That described as “saucy”. Me—skinny, pale, 6’2” glared at us with profound bafflement and man was old, Chris,” she said laughing, “but tall with an “old man’s shirt” (“Chris, damn, incomprehension. Four immutable, un- not too old to kick our asses!” Soon Dana it’s got a collar and pockets!”), white high blinking, bewildered pairs of eyes that meant joined us and just shook her head, first in- top basketball shoes, a green and white to do something about this heinous inter- credulously and then disdainfully. “Don’t Nigerian soccer cap and sporting a cop mus- ruption of their sanctuary activities just as ever go back in there again!” she admon- tache. We looked like the stinking “Mod soon as they figured this thing out. Mean- ished, “you’re lucky they didn’t blast you Squad” minus one. while, Pya, usually one hell of a talker, ‘cause they don’t play in there!” Dana, in her Pya, bold as love, kept poking her nose remained as mute as a stone and stood as own inimitable way, had rescued us by calling into storefront after storefront looking for though rooted to the spot, looking for once upon all her guile and eccentricity in a rash the spot. Suddenly, she got all excited. like she didn’t know what to do or say. We and reckless sort of way. Stumbling into the “Here it is Chris! C’mon, let’s go in!” The stood still for about 10 unbelievably long sec- “foyer,” she altered the focus (us!) of the place looked utterly abandoned. No door to onds, and you could almost see the thoughts gamblers on to her and diffused the situation the outside, a decaying water-soaked rem- of the gamblers flash by like a Times Square into zaniness. I know those guys in there nant of what was once a carpeted hallway, no ticker tape. The headlines read, “I ain’t never talked about our little visit for quite a while. light, a strong smell of mold and an up- seen no shit like this before!” Needless to say, that was the first and last ended full-sized pool table blocking the pas- At this crucial juncture of indecision, time I let myself be led into a gambling sage way in. We both got quiet and I let Pya Dana came charging down the hall scream- shack. lead the way in, stepping carefully over the ing at full lung capacity, “It’s me, Crazy Dana, There is, in the end, a moral to the story. pool table and casting furtive glances at the DON’T SHOOT!” in that hoarse, raucous “Use a condom, or at least carry one; it could rooms we passed with doors ajar; rooms that voice that could only be hers. As she rushed save your life!” were unused, covered in the dust of the ages down the hall she kept shouting the same and heaped full of construction debris. phrase over and over until she reached the A short walk led us to the end of the nar- inner sanctum of the card shack. Dana, as it row passage where a single room opened up turns out, had seen our folly and having re- Chris Catchpool was Executive Director of Casa and there before our very eyes stood a round alized where we had gone made great haste Segura in Oakland, CA. Sadly, Dana passed table at which were seated four grown men to stop us but didn’t make it in time. away in the Spring of 2000. She is sorely missed by with a monstrous green pyramid of US cur- “They’re outreach workers!” she exclaimed all who knew her.

9 USER-DRIVEN OVERDOSE PREVENTION IN By Heather Edney & Emily E. Ager verdose is arguably the most immedi- although present, is very low. Overdose fur- change, was one of the first agencies to make ate life-threatening concern facing in- ther narrows the group to current drug users, a serious commitment to strategizing pre- O jection drug users. Before 1999, it was with injectors at greater risk than snorters, vention of and response to overdose. The barely on the agenda of the domestic harm smokers or stuffers. The comfort that derives Oxygen Project, our overdose education, reduction movement. When it did appear it from being somewhat distanced from risk prevention and survival program, addresses was mostly in reaction to scattered outbreaks often leads to self-righteous judgments about the problem at several levels: policy change of ODs; therefore interest was mostly con- those who are still most at risk. Even when it at a local level, education and prevention fined to the affected locales. Where overdose doesn’t, the decreased sense of immediacy of through creative media and user involvement has become an issue to pursue, users and ex- the threat often translates to less concern. and extensive training of needle exchange users are often the driving force behind edu- This is important when considering that volunteers and staff around handling over- cation and intervention. most public health and harm reduction pro- dose situations at exchange sites, as well as While HIV/AIDS and HCV are by now fessionals are not actually drug users them- counseling participants about techniques for well recognized as serious public health is- selves. It may help to explain the willingness avoiding and surviving an overdose. Being a sues, overdose has yet to be assigned a similar to wait for demonstrated efficacy/supportive user-driven program, our primary concern as status. The classic behavioral risk categories statistics before demanding action, as well as a needle exchange is meeting the voiced associated with HIV transmission (men who an acceptance of certain limits to policy needs and desires of our participants. Recog- have sex with men, injection drug users) still change and attitudes that should be unac- nizing that HIV and HCV pose a particular occupy prominent roles in the ways many ceptable in light of the human rights and so- sort of threat (and stigma), and designing ed- people not identified as at “high risk” think cial justice goals our movement represents. ucation and interventions accordingly is ex- of the virus, at least in terms of probable per- Ultimately complacency can manifest as tremely important. Yet, overdose is perceived sonal risk. HCV, although more easily trans- complicity, allowing an identified problem by many users to be a much more immediate missible than HIV via the sharing of infected like overdose to persist unchecked, or be ac- threat, a fact which has had a significant ef- works, poses a risk to a more narrowly de- cepted as an unfortunate risk of being a drug fect on our program development. fined group (injection drug users), as the user. A user-driven approach to harm reduc- In focusing on overdose, we responded to lone carrier body fluid is blood, so sexual risk, tion, on the contrary, demands swifter action, the primary concerns of our community on more creative methods to circumvent legal several levels. Recognizing that fear of arrest and political obstacles and more straightfor- is a significant factor preventing drug users ward and honest evaluation methods— from calling 911 during an overdose, we de- based primarily on the responses of those for veloped a plan to change policy that was whom we aim to facilitate change: active in- based on establishing a safe and consistent jection drug users. chain of care. Extensive and successful col- The Santa Cruz County Needle Exchange laboration with local paramedic Robert Program, along with the Chicago Recovery Swarner resulted in the harm reduction-ori- Alliance and the San Francisco Needle Ex- ented training of naloxone administration

10 ber to be present at all main, indoor sites. One person is stationed at the front desk, and their main job throughout the night is to take stats on how many people come through the door, monitor the use of the phone and welcome people as they first come in. It is that person’s responsibility to call 911 when we discover that someone is not breathing. The two volunteers working at the needle exchange bag handing out safer injecting supplies are required to return all paraphernalia to the back offices and lock the doors behind them, then return to the front of the center to help maintain calm. The reason for doing this is similar to why people try to remove all signs of paraphernalia from an overdose scene anywhere: if police have no reason to get distracted from the medical emergency at SANTA CRUZ COUNTY hand, ultimately the potential for criminal paraphernalia charges is reduced. The fourth volunteer is stationed serving food at the site, for all local EMTs. We also hosted trainings training our community to take care of each and in the event of an overdose this person is for IDUs at our drop-in center on how to other in adverse circumstances, something be the direct assistant to the staff member, manage a 911 call in the event of an over- that’s especially important when calling 911 who is to execute rescue breathing. dose. In an attempt to ensure the legal safety remains a dubious option. Part of working at sites is being vigilant of anyone who calls 911 to report an OD, we Because the video was created in Santa about the well-being of all participants. Vol- have initiated conversations with local law Cruz, and is very much reflective of certain el- unteers and staff are trained to watch people enforcement and the DA’s office. Although ements of the local drug scene, the vignettes in the center, especially anyone who is sleep- we would ideally like to get official (or even may not translate well to the experiences of ing or nodding out heavily. If from across the tacit) support from the City and/or County, drug users in other communities. However, room there are no visible signs of breathing, our work in education and prevention is pay- the salient points can be translated and ap- a needle exchange worker is to go over to ing a dividend—saving lives—that is more im- plied to the experiences of IDUs in most any the person to check on them. If there are mediately significant. community setting. The Dope Operas are still no signs of breathing at close range, and The Dope Operas video project was devel- meant to be used as a tool to generate and if that person does not respond to physical oped to offer an opportunity for needle ex- focus discussions about overdose; they are a and verbal stimulation, the staff member is change participants to share some of their guide for other harm reduction programs to called over to check again for breathing most intense experiences with overdose, di- use to educate their own communities of and commence rescue breathing, if neces- rectly honoring those experiences by placing IDUs and those who provide services to IDUs. sary, which will continue until the person them in a format where lessons about pre- Inevitably there are people who come into begins breathing on their own or the vention and/or survival were clarified. The the drop-in centers loaded, especially when paramedics arrive. Dope Operas successfully engaged the injec- the exchange is open and users feel very con- Part of our strategy to cope with overdose tion drug-using community in overdose pre- fortable. In response to the obvious potential in Santa Cruz is addressing the fear many vention and education by highlighting issues for on-site overdose emergencies, all staff and drug users have of calling 911. The concerns such as doing tester shots, not using alone, volunteers are trained to respond in a partic- about getting arrested and prosecuted with the dangers of mixing drugs, learning how ular manner if someone stops breathing in attempted murder charges, paraphernalia to breathe for someone else and how to find our center. The protocol that was developed charges or probation/parole violations, are a pulse. By encouraging IDUs to share and requires four volunteers and one staff mem- often strong enough to prevent people who process their past experiences with overdose, our hope was that our community could col- lectively gain skills to better handle any future overdose situation. By acknowledging Where overdose has become an issue to pursue, popular myths and assumptions about what happens during an overdose and then offer- users and ex-users are often the driving force ing information about safer methods of handling a variety of situations, we are effectively behind education and intervention.

11 and well-being. Because the physical conse- While HIV/AIDS and HCV are by now well quences of using drugs amidst prohibition— incarceration, disease (and inadequate recognized as serious public health health care to treat it), joblessness and homelessness—accompany and reinforce the psy- issues, overdose has yet to be assigned chological ones—stigma, self-hatred, alienation and repression—opponents of the a similar status. drug war often find themselves battling both. By encouraging people to respect themselves and their fellow users, by encouraging self-es- teem and offering skills to address their drug- related problems, especially overdose, the Oxygen Project demonstrates user-driven harm reduction’s value. While others ponder are present at overdose scenes from enlisting scientific neutrality, the actions undertaken the relative weight of moral arguments about the help of professional emergency care- by this particular program are an example of drug use and human rights, our actions save givers. Because a 911 call from the drop-in what happens when public health practition- lives that might otherwise be lost to pre- center will always bring police in addition to ers are unable to ignore their own moral ventable deaths. a request for an ambulance, we actively dis- judgments about drug use and drug users, After more than a decade, needle ex- courage participants from remaining on-site and make compromises at the expense of in- change programs are still continually chal- if they have any reason to want to avoid po- dividual drug users in order to address their lenged with the question from outsiders: lice contact. Although over the last thirteen greater goal of eradicating disease. “But, aren’t you encouraging drug use by years our relationship with the local police When providers are drug users, (or to a providing clean needles?” While the blanket department has reached a state of relative lesser extent, former drug users) such com- of public health neutrality comes in extreme- amiability, we cannot guarantee the security promises become more difficult to make. As ly handy to use as a comeback to naysayers, of our participants when police arrive on the SCCNEP’s approach demonstrates, much these arguments are getting stale. Answering scene. Because our mission is to create a safe more can be achieved when a genuine level with the standard harm reduction response space for drug users, we must recognize the of belief in the fundamental humanity of (“No, needle exchange programs do not pro- limits of our ability to protect participants drug users is present. This is not to say that mote drug use.”) puts us instantly on the de- from the criminal justice system. Hence, part non-drug users have no useful role to play in fensive—playing into the hands of those who of the protocol is having people available to harm reduction. However, we must constant- challenge us—and is a subtle acknowledg- encourage anyone to leave if they feel un- ly remember that if the goals and participa- ment of our own doubts of the legitimacy of comfortable, assure people that the person tion of drug users are kept at the forefront of our struggle. If we truly believe in an individ- overdosing will be taken care of and report each plan of action toward change, all out- ual’s right to decide what to put into their that person’s condition to whomever remains comes will be more significant (at least for own bodies, if we reject the idea that drug use at the center. the users these plans are supposed to benefit), is immoral and if we begin to focus on the hu- Being equipped to manage a worst-case especially when the public health window manity of drug users as they struggle against scenario in our drop-in centers is another fea- widens to include overdose and other use-re- the seemingly insurmountable odds current ture of prioritizing and valuing the safe zone lated harms. Asking our participants what drug policies place in their way, then it’s our program creates for our community. Un- they want and need results in user-driven pro- time WE set the agenda and start asking the fortunately, not all exchanges are comfort- gramming, including a hepatitis testing and accusatory questions. Overdose-based work able making such plans. Corinne Carey’s vaccination program, late-night street out- offers us the opportunity to do just that, as we article, “Not in My Back Room” [Harm Re- reach/roving needle exchange with a mobile challenge the public health establishment to duction Communication, Spring 1999] exam- phone for people to call to connect with out- demonstrate its concern for the lives of drug ined what happens when harm reduction reach workers, formulation and production users, not just because some communicable programs, hamstrung by well-meaning pub- of herbal remedies to heal track marks, a disease will eventually impact us all, but sim- lic health policies—and administrators—fail harm reduction-oriented detox, a sobriety ply because drug users’ lives matter. to prepare for such situations. (Ed.: The article support counseling program and a memorial described the death of an exchange participant at space in our center to pay respects to people a Buffalo, NY exchange program, looked at we’ve lost—many of whom overdosed fatally. Emily E. Ager is the North County Program Co- the incident’s repercussions and offered a more As a user-driven program, SCCNEP main- ordinator of the Santa Cruz County Needle Ex- user-centric approach as an alternative.)Al- tains as its primary objective respectfully fa- change Program. Heather Edney is the Executive though public health as a profession carries cilitating the responsibility IDUs take on to Director of the Santa Cruz County Needle Ex- associations of benevolence, practicality and develop and maintain their personal health change Program.

12 Harm Reduction Conference I December 1 – 4, 2002 Drug War Memorial Project

WHAT IS THE DRUG WAR MEMORIAL PROJECT? The Drug War Memorial Project is a visual presentation to celebrate and commemorate the lives of those who have died–whether from disease, overdose, violence, etc–in the war on drugs.

It is our hope that this memorial can be many things to many people, offering an opportunity to recognize those we have loved, who have touched us and whose voices and memories continue to inspire our struggle, as well as those who have, up to now, remained invisible casualties of our nation’s longest running war. National The memorial will be made of photographs, names, dates and brief descriptions of how each person died, submitted by anyone wishing to participate. There will be a slide show of images,

th and a place to put photographs you bring. The memorial will be screened continuously Rod Sorge (AIDS) and Shiela throughout the 4th National Conference in a designated space. In addition, there will be a O’Shea (Died Spring of 2000)

4 sheet of fabric at this location on which people can attach photos or write personal messages commemorating those they’ve lost.

WHY IS HRC CREATING THE MEMORIAL? The Memorial Project is being organized specifically for the 4th National Conference in Seattle, WA in December 2002.

HOW DO I PARTICIPATE IN THE MEMORIAL PROJECT? Submissions can be made electronically at http://www.harmreduction.org/conference/ hrc_memorial_project.html or by sending an e-mail to [email protected] including the following information:

[Remember that over 1500 people from across the country will be at the conference, any of whom may view the memorial. Please consider the potential impact of photographs on others and any issues of confidentiality that may be relevant.]

I A scanned photograph of the person to be memorialized. We are asking for pictures of people only.

I Details about how you would like the person to be listed. – for example, their name, nickname, initials, anonymous, etc.

I The years that they were alive (optional) – for example, 1975 – 2002

I A brief statement explaining how they died (25 characters or less, including spaces). – for example, Hepatitis C, AIDS, Overdose, Prison, etc.

NOTE: HRC leaves it up to each individual to define casualties of the war on drugs.

WHEN ARE SUBMISSIONS DUE? All submissions must be received by Monday, October 14, 2002 in order to be included at the conference.

CAN I MAKE A SUBMISSION BY SNAIL MAIL? Unfortunately, HRC can not guarantee that any submissions received by regular mail will be included. We just don’t have the resources to scan images at this point. Sorry. If you can’t get a picture scanned, please bring it with you to the conference. There will be a place to display it. Please don’t mail us pictures.

Here are some suggestions for making a submission electronically: I Kinko’s and other copy shops have scanners and computers that can be used for a small fee. I Some community-based agencies may be willing to offer assistance with the scanning/submission process. I Some public libraries may offer similar services as well.

If you bring a picture with you to the conference, or mail us a picture, we can’t promise it will get returned to you. Dispatch from the Drug War’s Frontlines by Arun Prabhakaran (Philadelphia: Drug War News)

“Today, they say that we are free, only to be chained in ‘a poverty. Said I know that it’s illiteracy, Dem not people … dem no make money.

“Slave Driver, the table is turned. Catch a fire, you gonna get burned.”

– Bunny Wailer Illustration by Johnny Edney

Background Our Plan Department. Never short on energy but al- There are thousands in the City of Brotherly Our organization conducts citywide street ways short on time, she generously shared Love living on the streets, in cars or abando- outreach, engaging in conversations with both with us, helping to draft a harm reduc- miniums (abandoned houses), suffering people about their health and living condition survey to assess people’s risk. The survey from lack of healthcare, going hungry, peo- tions while handing out condoms, sand- served several purposes: ple with no money to live and other serious wiches, juice and safer injection kits. In the ❇ The survey allowed us to ask key questions societal issues going completely unaddressed. past we contacted many people but could not about what was going on in people’s lives, A fair number of people are using drugs, guarantee connecting them to the services in a non-judgmental way. We tell folks that doing sexwork and/or struggling just to stay they desperately needed. Philadelphia pro- the survey has very difficult and personal alive. Meanwhile, the streets of North Philly vides few services for youth who are homeless, questions about drug use, sexual practices, are on total lockdown. The second largest unable to moderate or control their sub- rape, assault and more. We ask people to heroin depot in the country has police heli- stance use, do not have insurance, have little honestly answer the questions they feel copters, affectionately called “ghetto birds,” or no cash or who have sexual health issues comfortable with and skip other questions, patrolling with spotlights from dusk ‘til dawn. and other problems. Folks also don’t know instead of lying. (We did not think that The police are on every other block but where to go for the free or low-cost/sliding folks would necessarily lie, but everyone haven’t really stopped the massive influx of scale services that do exist. For the most part, deserves their privacy, so we offered an al- drugs…they manage it. services provided from a harm reduction ori- ternative that would preserve the survey’s entation are scarce. In response to the condi- accuracy.) tions here we decided to create a drop-in ❇ The survey was a great springboard for Y-HEP center. It seemed to be the next logical step conversations and helped to build trust in In the midst of this the Youth Health to address the issues that we saw on outreach a way that other health questionnaires we Empowerment Project (Y-HEP) fights back, shifts night after night, including linking peo- had seen did not. promoting the sexual health, emotional de- ple to the vital services they needed. ❇ The $20 cash incentive that we gave to peo- velopment and empowerment of young peo- We set to work. The staff decided that ple who answered the survey brought in a ple. Our philosophy, fashioned through the adding a medical professional to our out- ton of people. Many of the people who lens of human rights and informed by harm reach team was crucial, if only to increase its come to the drop-in center are doing sex- reduction, strives for universal health care versatility and skills base. After the usual hir- work for survival, so $20 for a survey means and treatment on demand. We believe that ing process we narrowed the field down to one less trick to turn. people in the richest country in the world two volunteer nurse practitioners, one with ❇ People learned about the services we pro- should not have to worry about their basic years of hands-on experience and the other, vide. needs. We engage in anti-oppression train- Ani Maitin, who was less experienced but will- ❇ We found that the majority of people who ings, participate in protests and demonstra- ing to try or do anything. Rather quickly, our took the survey had suffered severe trauma tions for economic and social justice, bring in umbrella organization, Philadelphia FIGHT, at young ages. Many people were survivors guest speakers to share their work and hired Ani as a full time nurse practitioner. of rape, incest and emotional, mental and information with us, visit other organizations For the first few months, most of our physical abuse. The survey taught us the to learn from their experiences and attend time went to setting up the basic structures, areas of expertise our staff would need in conferences to expand our perspectives and protocols, paperwork and relationships order to best serve people coming to the network. People have the desire and initiative we’d need in the upcoming months. I made center. to improve their own lives. We assist them, a ton of phone calls and went to visit quite a Through the survey, we engaged on a providing our resources and knowledge, in number places. We had a lot to accomplish much deeper level with folks. People felt developing the necessary skills and tools, in a short time. comfortable dialoguing in a one-on-one set- using harm reduction, motivational interview- I started out by meeting with Carol Rogers ting. We used the questions as means to initi- ing and consciousness raising techniques. from the City of Philadelphia’s Public Health ate explorations of people’s motivations

14 around drug use, as well as issues they faced basic necessities. Gandhi said, “Poverty is the Universal Declaration around health, work, family, safety and other worst form of violence.” It is really demoral- of Human Rights things. Often, people do not methodically as- izing to wake up in the park with no tooth- sess their lives and activities; for many partic- brush, week old underwear, no socks and The Universal Declaration of Human Rights, which ipants the survey served as a useful tool for feeling dope sick. People who have had to go was crafted in large part by Eleanor Roosevelt, was self-reflection. Most importantly, the survey through it know that a clean pair of socks, a adopted by the General Assembly of the United allowed people the opportunity to share the shower and basic stuff go a long way towards Nations in 1948. The economic human rights extent to which different traumas have im- making a hard day bearable. Everyone portion of this document (articles 23, 25 and 26) pacted their lives, especially childhood sexu- should have food, clothing and housing … lists the protections that every person is entitled to al trauma, rape, sexual assault, violence, they are guaranteed in the Universal Decla- by being born in the world. For more information overdoses, death and grieving. ration of Human Rights (see sidebar, right). Un- about economic human rights or if you want join In October 2000, three members of our fortunately, in Philadelphia many street users staff went to the 3rd National Harm Reduc- don’t, so we’ve stepped in. the movement to end poverty, check out the tion Conference in Miami. We met people People living within the system don’t real- Kensington Welfare Rights Union/ Poor People’s running programs like ours in other places, ize how difficult it can be for someone who’s Economic Human Rights Campaign website at many of whom were willing to share their ex- been on the outside to get re-integrated. www.kwru.org or call 215-203-1945. periences, particularly Stacey Rubin from the Without a birth certificate and ID/driver’s li- Streetwork Project in New York City and cense, it’s impossible to access the meager Article 23. Heather Edney from the Santa Cruz Needle city, state and federal health and welfare ser- (1) Everyone has the right to work, to free choice Exchange. Their programs provided exam- vices that still exist. Same situation if you of employment, to just and favorable conditions of ples of harm reduction in practice, focused don’t have a social security card; in addition work and to protection against unemployment. in urban settings. For us, this information was you often need one to get a job. We’ve (2) Everyone, without any discrimination, has the invaluable. We had known what we wanted to learned that helping participants successful- right to equal pay for equal work. accomplish, but hearing their experiences ly engage the public service bureaucracy is (3) Everyone who works has the right to just and and practical know-how gave us additional one of the most important things a program favorable remuneration ensuring for himself and encouragement. Using the two programs as can do to help people build some semblance his family an existence worthy of human dignity, both inspiration and models, we planned and of stability in their lives. and supplemented, if necessary, by other means of then embarked upon our course for the fol- social protection. lowing months. We started a photography Our Experience (4) Everyone has the right to form and to join trade class, users’ support groups, movie showings Officially, we opened the Y-HEP Drop-In Cen- unions for the protection of his interests. and other programs. We tried to make the ter’s doors on December 1, 2000, amidst fears space as normal as possible, scheduling activ- that no one would come, or worse, that the Article 25. ities that people wanted. Much of what we people who did come would never return. (1) Everyone has the right to a standard of living now do is reflective of what we learned from Quickly we saw that those fears were ill found- these women and other groups. ed: just the opposite happened, we were adequate for the health and well-being of himself One of the things we learned at the con- swamped. and of his family, including food, clothing, housing ference is that we needed to make sure that We try to be as kind and compassionate as and medical care and necessary social services, and we had the basic daily necessities that people possible in every interaction. We wanted to the right to security in the event of unemployment, did not have access to. The items and services make sure that people felt welcomed, wanted sickness, disability, widowhood, old age or other we now provide are as follows . . . and cared for when they came to the drop-in lack of livelihood in circumstances beyond his ❇ Basics: food, juice, subway tokens, bleach center. We found that this turns out to be the control. kits, clothes (new socks and underwear, most important thing that we do everyday. (2) Motherhood and childhood are entitled to shirts, pants, and more), toothbrushes, One day, a woman who comes regularly to special care and assistance. All children, whether condoms/ dental dams, tampons and drop-in said, “I just want to feel normal.” She born in or out of wedlock, shall enjoy the same maxi pads and access to a place for later let me know we let her feel that social protection. showers. way…normal. ❇ Referrals for: community counseling, sex- We moved to adjust and that is still were Article 26. ual assault, detox and rehab, free we are… adjusting. We are trying to manage (1) Everyone has the right to education. Education STD/HIV testing, GED classes, job train- what we have and add on to it in the future. shall be free, at least in the elementary and ing and placement, housing and more. We’d like to incorporate art and music class- fundamental stages. Elementary education shall be ❇ Information about: safer sex, needle ex- es, some acupuncture, yoga, psychiatric help compulsory. Technical and professional education change, safer injection, getting insurance, on-site and other things. We visited the Street- shall be made generally available and higher getting welfare, getting social security work Project and Safe Space in New York and education shall be equally accessible to all on the cards, birth certificates and other ID, sup- know that our center could really grow and basis of merit. port groups, HIV/AIDS resources and do some really important work. I assume that (2) Education shall be directed to the full more. growth will be an organic process, as it has ❇ Access to: a nurse practitioner, free been since the beginning. development of the human personality and to the HIV/AIDS treatment clinic, the AIDS Li- We have had our share of struggles. Most strengthening of respect for human rights and brary, free internet access, CARE outreach of the people who come to drop-in are fundamental freedoms. It shall promote (intensive follow up for people who are twenty-something, white, heroin-injecting understanding, tolerance and friendship among all HIV+), support groups and a safe space to suburbanite youth. It is hard for our staff, nations, racial or religious groups, and shall further hangout, talk, watch movies, get cleaned comprised mostly of youth of color, to feel the activities of the United Nations for the up and rest. the pain of these “white” kids. One of the maintenance of peace. Unless you have lived it, people very rarely ways that we have been successful in (3) Parents have a prior right to choose the kind of explore how miserable life can be without overcoming these prejudices is through education that shall be given to their children.

15 Unless you have lived it, people very rarely explore how miserable life can be without basic necessities.

When you see a white, seventeen-year-old girl permeated our minds and hearts. Our soci- from the suburbs who is the second genera- ety defines freedom as the ability to conduct tion of her family strung-out on smack and commerce…the ability to buy and sell goods. has been repeatedly raped by a family mem- If you have money, you have freedom. Most ber’s drug addicted friends, your illusions are Americans have nothing but themselves to shattered. It is with this type of discussion and sell. To support ourselves and our families we interaction that we, as a staff, are moving to- sell our work, our minds and our time to em- wards a more compassionate and deeper un- ployers. If there is no work, we have no derstanding. money and we have no freedom. In essence, If we were to try to start another drop-in poverty is the modern day slavery. Without a center, I could think of a few things we would conventional job, you might have to sell do differently. While our youth staff is great drugs, your body or something else in order and has much enthusiasm, we needed more to be “free.” people experienced in case management, At the same time, our culture teaches that clinical therapy and medical matters. I think people who are poor have no value and that Illustration by Bert Gossen we could have benefited from partnerships their poverty is their fault, not a by product with other agencies, more donation requests of a shoddily constructed social system that education. We are constantly doing political from local and national businesses and more nakedly benefits the wealthy. If someone says education to address the root causes of the time spent on staff training before we started. they are poor, or use drugs, or do sexwork, drug war, and dealing with the drug war as a No worse for wear, we’ve made it through they get stigmatized and have to deal with the part of the overall class war that is on-going and I honestly believe we are making a dif- prejudices of the social workers, case man- in America. Rich communities don’t have ference. agers, police, health care workers, intake drugs sold en masse from street to street. The main struggle at Y-HEP and the drop- workers, outreach workers and others who These white kids aren’t the rich suburbanites in center is how do you help empower young are overworked, underpaid and trapped in a that our urban stereotypes tell us. They live in people in a society that does not want or system that is continually violating people’s deteriorating inner-ring suburbs and are ex- value them? We work to create the conditions basic human rights. If we want to win this periencing the same alienation that youth of that can produce healthy and successful war by changing the hearts and minds of the all colors are experiencing. Most of these kids adults. Part of this is the political education people of this country, we need to strike a are coming from extremely abusive home that can make sense of this mad world and blow at the Achilles’ heel of this system. This lives, especially sexual abuse. So, in the face help them understand the systems of power means fighting for our economic human of a picture that contradicts our basic beliefs, and oppression that are working to keep rights and ending poverty. we must form new views. These views must re- them down. If I can emphasize one thing, don’t close flect the world as it is, not how we think it is. The ideology of the wealthy has deeply your eyes… our society is in crisis. We need to address our social values as a country because the value placed in human life is crumbling (Courses marked with an * are full day, others are half day) before our eyes. We need to invest in the peo- HRTI SF Fall 2002 Calendar ple of our country— not the stock market. In Intimate Partner Violence and Harm Reduction Tuesday September 17 order to re-create a livable society we need to rekindle the fire of humanity and move to a Overview of Harm Reduction* Friday September 20 place where people come before profit. You Transgender 101* Tuesday September 24 can’t practice harm reduction in a vacuum. It Hepatitis C and Harm Reduction* Friday September 27 is necessary to completely evaluate the socio- Successfully Housing Drug Users* Wednesday October 9 political context of the environment in which Reducing the Harm to Ourselves: you do your work. If you don’t, you’re using Burnout Prevention and Self-care for HR Workers* Thursday October 10 band-aids for situations that really need emergency surgery. Many people are unaware of Harm Reduction Counseling Thursday October 17 the greater political context of the work they Harm Reduction with LGBTQQ Youth Wednesday October 23 do and this is a fatal flaw. This is the way to Clinical Issues for Non-Clinical Staff Tuesday October 29 doom yourself to repetitive failure. As a re- Responding to Day to Day Crises on the Job Wednesday October 30 sult, our program is informed by a radical vision. Our work is explicitly political. Make no Train the Trainer* Friday November 1 mistake; we are here to change things. Peer Driven Interventions for the “Hard To Reach” Wednesday November 6 Party ‘n’ Play: Gay Men and Crystal Meth Wednesday November 13 Intermediate Harm Reduction* Friday November 15 Arun Prabhakaran works at the Youth Health Em- powerment Project (Y-HEP) Drop-in Center. He is an Medical Complications of Street Drugs Tuesday November 19 Assistant Education Director with the Kensington Welfare Rights Union (www.kwru.org).

16 sion interview, a USA Today article, “Worrying About the Dark Side of Circuit Parties” (June 20, 2002), called the events “raucous, rave- DECONSTRUCTING like celebrations” that had health officials worried about the prevalence of drug use and risk behavior. Look out, here comes the Dark Side! And THE “DARK SIDE” surprise, it’s gay men having raucous sex. Beyond these sensationalized descriptions of circuit parties, studies show there are gay OF CIRCUIT PARTIES men at circuit parties that overdose, and there are also gay men at circuit parties that contract STD’s from unsafe sex. As harm reductionists, we don’t want that to happen. by Robert Felt However, before we go chasing Darth Vader and his minions, it’s critical to deconstruct this “dark side” and move our understanding of circuit party-related risks away from such sensationalized metaphors and toward some- or those not familiar with a circuit On Monday, June 24, 2002 Michelangelo thing more useful. party, it refers to an international net- Signorile, a prominent Gay journalist and ed- Categorizing circuit parties as venues for F work of dance events that draw gay itor at large of The Advocate, appeared on Fox raucous and irresponsible drug use is an un- men and involve dancing, socializing and— 25’s “The O’Reilly Factor” to warn prime- informed opinion, grounded in sensation, presumably—a fair share of substance use time-viewing Americans of the increasing not reality. Consider the fact that gay men and sexual activity. The events are lavish in danger of circuit parties. Signorile has been employ intricate strategies for safer drug use, their locations, decorations, sound systems, particularly outspoken against these parties from knowing what drugs not to mix, what performances, and thus expensive, with some since, calling them in a 1997 article “a cul- herbal supplements will ease coming down, tickets ranging from $75.00 to $100.00 dol- tural phenomenon that undercuts the very to preventing overdoses once they have lars per party. Much of collected money goes important work [public health organiza- begun. (Did you know you could get some- to AIDS service organizations. tions] are doing.” Just days before his televi- one out of a K-hole with a few sips of coke?) Criticism has been laid upon these events for years. Most arguments against circuit parties claim that they are venues for the reckless abuse of drugs, where overdoses are so common that party promoters hire special medical teams to stand by; and that the sexual behaviors practiced at them are representative of the increasing carelessness around safe sex that is leading to a resurgence of HIV in the gay community.

Critics of (circuit) parties point to the fact that medical teams must stand by to treat . . . incidents; the same could be said of marathons, state fairs, parades, concerts and other events.

17 Gay men demonstrate a consistent generally perceived not as people but as ob- jects of social control. As a result, discussions negotiation of behavior with risk: always about users generally center on how users (or the substances) can or cannot be controlled.” thinking, practicing and refining risk Thus, when reports come out describing circuit parties as venues for gay men to get reduction strategies. high on drugs and have unsafe sex there is an immediate impulse toward this question of control: “How do we determine what goes on at these events? How do we regulate appro- Furthermore, care is often demonstrated for drug-related incidents, the same could be priate and inappropriate behaviors? How do fellow partiers, even in relationships that are said of marathons, state fairs, parades, con- we enforce drug and behavior codes at these not typically thought to be caring, such as the certs and other events where medical teams events?” preponderance of drug dealers who will not wait to treat people who faint or suffer heart Within this focus there is a failure to rec- sell GHB to people who have been drinking problems and heat stroke. There are limits to ognize and accept that drug users, gay and alcohol. the amount of stress, dehydration and chem- straight, set the determinants for themselves Many men who attend these parties prac- ical imbalance the average human body can —they choose the rules and conditions by tice sexual risk reduction strategies, whether take. Yet, it is an essential part of our human- which they want to live. It is within these de- it is communicating and disclosing HIV sta- ity that we value and find pleasure in massag- terminants that appropriate risk reduction tus to their partners, not receiving semen ing and pressing those limits. strategies are practiced. And they are prac- ejaculations or limiting sex with non-main Nevertheless, this is a homophobic society ticed. Rarely do we find gay men whose be- partners to only oral intercourse. While this that holds gay men accountable for the haviors demonstrate a total disregard for the is not the same as adhering to condoms every spreading of disease and moral decay. Should possible harms associated with their actions. time, it is an example of harm reduction as it we add circuit parties and Jeffery Sanker (a Instead, gay men demonstrate a consistent is practiced by the circuit party community. top party promoter) to the Axis of Evil? Even negotiation of behavior with risk: always Furthermore, this is a form of risk reduction the labeling of informed, consensual sex be- thinking, practicing and refining risk reduc- that is naturally occurring and self-deter- tween men as “the dark side” is intentionally tion strategies. mined—it is a choice that fits the particular homophobic. This evil-impugning terminol- Still, despite demonstrated responsibility, circumstances of the party-goers’ reality. For ogy is never used to describe college parties the feeling persists in both the gay and many gay men 100% condom adherence is where heterosexual students get drunk and straight press that if the parties continue, and neither practical, nor a goal, and thus other do it bareback in the bushes outside the frat are not controlled, regulated and held to risk reduction strategies are adopted that house; “the dark side of fraternity parties” dominant standards of behavior, there will be make better sense in this context. sounds more like a raucous comedy than a terrible negative consequences for society at Studies have shown that only 28% of men tale of a “cultural phenomena” leading to- large. With needle exchange, this phenome- engaged in unprotected sex while at a party. wards impending doom. na is commonly presented as the fear that if Twenty-eight percent is a phenomenally low The naturally-occurring risk reduction users are given easy access to clean syringes, number, considering the possibility for risk practices and strategic thinking about HIV children would become drug addicts, there implicit in thousands of gay men coming to- risks, despite possible intoxication, show why would be dirty works all over the ground and gether in a sexually charged, dimly lit room. the gay community is the only group to suc- the crime rate would increase. With gay men This means that despite the sensational cessfully lower their rate of sexually transmit- at circuit parties, the fear is that disease will claims of “widespread drug use” almost three- ted HIV since the onset of the epidemic. spread, AIDS will rage through the commu- quarters of the men used protection. I be- Claiming that the parties are an example of nity like it did in the 80s, and moral corrup- lieve this is a higher percentage of condom “the risky behavior that is contributing to ris- tion will lead to a hedonistic society that does use then any other community achieves during HIV rates among gay men” (USA Today) not value life. ing alcohol/drug-use episodes. is not a helpful perspective; unprotected sex The idea put forward by Signorile and One party attendee I spoke to tells a story happens all the time in every venue— others is that gay party-goers lack the self-con- of hunting around Manhattan for a small whether a bedroom, sex area, bath house or trol needed to practice the appropriate sexu- waist pouch that he could tie onto his chaps circuit party—and no one venue should be al behaviors, as assigned to them by various (those butt-less pants commonly associated held accountable for unsafe sex. institutions, in this case, public health. Be- with leather bars) in order to be able to carry Yet the parties are singled out as particu- cause they cannot control themselves, and enough condoms and lubricant for him and larly dangerous, and many people are try- give in to their raucous, irresponsible urges, his friends. Such behavior is not an example ing to distance themselves from the parties the rest of us good, normal, responsible gay of irresponsibility and carelessness, but a bril- and the activities that presumably occur citizens will continue to have to suffer AIDS liant example of facilitating risk reduction there. In the USA Today article, Ronald and the economic burden/emotional shame within a difficult context. Johnson, a GMHC official, explains that his it brings. Beyond this, one must emphasize the agency pulled out of their party, which Following this logic, since they cannot peaceful nature of these parties—there are raised over $450,000 a year, because “It be- control themselves, they need more regula- never any fights. Overdoses and dehydration came a social phenomenon above and be- tions to control them—thus we must either do occur, but circuit parties do not erupt into yond what [we] intended and beyond what stop circuit parties (a la Signorile’s cam- violence comparable to a Hetero male sport- [we] could control.” paign against the Fire Island Morning Party) ing event where alcohol is served. High Clearly, what drives these objections and or enforce heavier controls on what occurs school hockey dads beat each other to death, outrages over circuit parties stems from what there. (See also the sidebar on the proposed Rave not gay party-goers. Donald Grove observed in an article (avail- Law.) In the history of drug use in America, While critics of parties point to the fact able only on-line) from the Fall 1999 issue of such increases in regulation and control that medical teams must stand by to treat Harm Reduction Communication: “Users are lead to increased harm. One party attendee

18 reported to me that he could no longer take the containers he used to measure his dose of GHB into the parties because some parties RAVE ACT now searched specifically for these containers. As he notes, even if the containers were Congress is considering legislation that would undermine harm-reduction ef- found empty, people were removed from the party. His solution was to go to the party with- forts at circuit parties, raves and other events and potentially subject innocent out the dosing instrument and try to judge promoters to massive fines and jail time if they fail to prevent drug use at their the correct dose without the assistance of an objective measure, presumably forced into a events. The legislation, known as the Reducing Americans Vulnerability to Ec- bathroom or other unsanitary part the club stasy Act (RAVE Act), has already passed the Senate Judiciary Committee and where he would not be seen. Examples like this show how increased could be voted on by the full Senate as early as September. Drug policy reform control and regulation contribute to in- organizations, civil liberties groups and business associations are mounting a creased harm. Since GHB is a dose-sensitive drug that can easily cause a user to lose con- campaign to defeat the bill. sciousness if too much is taken, this person is now more at risk for overdosing because of the search and seizure methods adopted by The RAVE Act essentially expands federal law to make it easier to prosecute busi- party security. The mechanisms intended to ness owners and promoters that “knowingly” allow a place to be used for drug “protect” are no more than offensives against users. offenses. Unfortunately, “knowingly” is not defined in the Act and the bill offers As harm reductionists, we can approach few protections for innocent business owners. Under existing law, for instance, the risks existing in these venues without a federal prosecutors are already using such innocuous activities as selling bottled need to control and regulate the behavior of individuals. Instead of fretting about how to water and glow-sticks as “proof” that promoters and business owners are en- enforce our determinants onto others, we couraging their customers to use drugs. The RAVE Act would open up more en- can facilitate the already naturally occurring strategies of risk reduction that these men trepreneurs to prosecution and allow prosecutors to bring civil charges against practice without guidance or prompt from a alleged violators instead of criminal charges, lowering the standard of proof health authority. This means helping to transmit informa- that prosecutors would have to meet and dispensing with juries. Many club tion from user to user about how to keep owners and event promoters fear the legislation could mean the end of circuit themselves safer. It means disseminating information to gay men on drug interactions, parties and raves. drug mixing and overdose prevention. It means skill building to help people with HIV overcome their fear and disclose their status The negative impact of the RAVE Act on harm reduction efforts could be to potential partners, and men without HIV tremendous. The bill clearly insinuates that selling bottled water and offering learn how to ask the HIV status of their partners even while high. It means we can help air-conditioned “cool off” rooms is proof that promoters are encouraging drug those who identify themselves as having an use. Under the law, any harm reduction measure—from having paramedics on addiction or dependency to facilitate behavior change and make appropriate linkages to call to distributing harm reduction pamphlets—could be used against business other services. owners and promoters, who could face up to 20 years in jail and $250,000 in By taking this sort of approach to the issue of health risks at circuit parties we avoid the fines if convicted of violating the law. To limit their potential criminal and civil sort of sensationalizing, dehumanizing and liability, business owners and promoters may stop implementing such life-sav- scapegoating measures that others would employ in response to the same problem. As ad- ing measures at circuit parties, raves and other events, or simply stop hosting vocates of public health and disease such events all together. prevention, we stress the need and importance for behavior change, where appropriate, but we do not involve ourselves in The Harm Reduction Coalition, Drug Policy Alliance, ACLU and dozens of other behavior control. In this regard, the form of health promotion that we practice stays true organizations are working to raise awareness about the bill. A recent joint Drug to what it means to care, and avoids being a Policy Alliance and DanceSafe campaign sent almost 30,000 faxes from voters mechanism of dehumanization and social control. to the Senate. BuzzLife Productions, which coordinates dance events in the DC area, has submitted 10,000 signatures in opposition to the bill to the Senate. Robert Felt was coordinator for harm reduction services for Cambridge Cares’ Men Having Sex Voters can fax their Senators a letter in opposition to the RAVE Act by going to: with Men Project. He currently resides in Wash- ing ton, D.C. www.drugpolicy.org or www.dancesafe.org.

IS JUST OVER A DECADE THAT WE HAVE A NAME FOR HEPATITIS C, and even less time that we have diagnostic tools that show its IT presence in the body. Given that hepatitis C progresses slowly—it may take decades for liver damage to manifest—it is difficult to predict what therapies will be most beneficial over the course of the disease. Most people who contract HCV will not die of it; most will develop chronic hepatitis but will otherwise live a normal life span. Quality of life is dramatically decreased for some patients, not at all for others.

In the Spring of 1998 HRC ran its first collection of articles addressing the hepatitis C epidemic in injection drug users. Four years have passed and although we haven’t had sea changes in the treatment of the disease, there is definitely enough progress to warrant another concerted look. In the intervening years our understanding of transmission has grown a bit, interferon treatment has been refined and HEPATITIS C there has finally been the beginnings of a shift in the medical profession’s views on the treatment of active users. (Un- fortunately we still don’t have a treatment that works well without nearly destroying the patient.)

We’ve included an interesting range of articles that touch on some of the issues that we think are important: HCV in the methadone patient, treatment access for current users and prisoners, patient advocacy and activism, a peek at some of the issues facing policy-makers, alternative or holistic approaches and a personal account of treatment of a HCV-HIV co-infected patient. The above list doesn’t pretend to be all-inclusive; hopefully we will fill in missing pieces in future newsletters. Treatment for hepatitis C is complicated; even if you have all of the facts, making a decision can be excruciatingly difficult. We’ve attempted to shine a bit of light on the subject. While it may not make your decision—whether to undergo the current treatment, wait for new medicines, try alternatives to Western medicine or do nothing—easier, the added knowledge should make you more confident with whatever route you choose. MANAGING HCV AMONG IDUS: OVERCOMING THE POLITICS OF EXCLUSION

by Allan Clear

SINCE THE LATE 1970S, THE U.S. HAS pursued a national policy of deterrence to make drug use as risky and as unpalatable for individuals as possible. Hence, paraphernalia laws were enacted to make purchase and possession of syringes a crime, often making the securing of sterile injection equipment impossible. At the same time, prison sentences were heightened and strictly enforced based on the mistaken belief that this threat would force drug users to cease their drug use. The unintended but, for policy makers, not necessarily regretted consequence of the war on drug users is that we now have several over- lapping, concurrent epidemics that have dev- astated the drug-using community, including HIV, HCV, incarceration and overdose. Women, African-Americans, gay men and lesbians have made great strides in achieving civil rights and human dignities, strides which so far have eluded drug users. However, despite stigmatization and the social isolation imposed upon them, drug users are capable of both self-care and self-advocacy. Since the emergence of the HIV epidemic in the mid 1980s, drug injectors have made substantial changes in the way they use drugs. As aware-

ness of how HIV was being transmitted grew Illustration by Joshua Lunsk and as they witnessed their friends rapidly die off, drug users took steps to reduce syringe as well as those who are contemplating drug Drug users are capable sharing. Contrary to popular belief, drug use, should cover two main areas: strategies users are capable of addressing their own for controlled use and realistic information of addressing their own health needs, especially when obstacles cre- about the increased risks associated with in- ated by the drug war are eliminated. jecting. Individuals transition to injection health needs, Little attention has thus far been given to drug use for a number of reasons, includ- specifically addressing HCV among drug ing economic and peer pressures. Controlled especially when users. To date, it is not possible to point to a use can be established by creating a con- single intervention that is a perfect or even sciousness around individual drug patterns, obstacles induced by satisfactory prevention strategy. We need to an investment in social networks—including launch a public education campaign that uti- family, friends and work—and a sustained the drug war are lizes a comprehensive, reality-based approach pleasure associated with drug taking. There that will affect drug-using behaviors and is very little recognition given to the notion eliminated. norms. that drugs do fulfill a viable function for people. They provide pleasure, relaxation, relief PREVENTING TRANSITION of physical and psychological pain, diminish One way of lowering transmission is to re- awkwardness in social situations and have duce the number of people who transition to been consumed throughout the recorded A successful public education campaign to injection drug use. If individuals choose to histories of all civilizations. Individuals should address the dangers of injection drug use use drugs, they should be receiving accurate have a right to explore the limits of their own can’t focus on any single risk but must en- information and strategies that support a consciousness, and also should have a right compass a range of issues, including—but healthy relationship to their drug use. Edu- to expect that society will not deny them sta- not limited to—HCV, HBV, HIV, soft tissue cation aimed at novice and young drug users, bility and civil resources. infections, endocarditis, tetanus and wound

23 It is immoral, unethical and uncivilized demics such as HIV and HCV are reduced by efforts of seropositives to stop transmitting to deny treatment to an individual the infection. There has been an on-going public education and awareness campaign based solely on their drug use. about HIV, and drug users have long been aware of the risks they undertake when injecting (even though they frequently have no botulism, overdose and the consequences of cient. Essentially we’re rolling a film back- control over the environment causing their the stigmatization of drug use. Similarly, pro- wards. Injection is a process and a skill to be risk.) Throughout the 1990s, drug users viding a range of options within such a cam- developed and we need to talk about the aware of their positive HIV status have played paign is crucial. Working out a systematic process from even before the moment drugs are a major role in reducing the HIV epidemic in plan for taking drug breaks is a strategy for obtained. Planning cannot be under empha- New York City by not sharing equipment. Ap- identifying drug use that serves a purpose sized. Good injection technique needs to be pealing to the altruistic nature of informed and use that’s by necessity. A positive rela- taught and encouraged. A sterile injection and empowered users can similarly reduce tionship with drugs can be maintained more environment may be an unlikely scenario for HCV. Widespread screening to establish easily if drug use does not become the central many but promoting hygiene should be a awareness of HCV status—accompanied by defining factor in a person’s life. Taking pe- norm. It starts with washing hands and arms, education, vaccinations against HAV and riods of time away from use is one way of and includes clearing a personal space, seek- HBV and other resources such as referrals to maintaining a healthy relationship to one’s ing out clean surfaces or spreading out a other medical and social services and access drug of choice. “Less is more” is an adage sheet of newspaper, another similar surface to injection equipment—will have an impact that can be applied here. The less frequently or a boundary marker (only clean equip- on the future of the epidemic. Needless to one uses drugs, the longer the pleasure from ment—not contaminated by exposure to say, altruism alone cannot be expected to be that drug use can be sustained. Unfortunate- blood—should pass that boundary into the the answer. Drug users need concrete and ly, individuals (especially young people) are clean field). People have recognized that as widely accepted support for their efforts. often faced with the blank dichotomy of ei- injecting sessions progress it may be easy to ther remaining in the “straight world” or lose track of what’s what, so promoting the in- delving deeper into a drug- dividual marking of syringes can be helpful, STERILE SYRINGES AND SAFE HEPATITIS C using sub culture. while having a copious supply of sterile sy- INJECTION SPACES One of the major co-fac- ringes on hand is preferable. Syringe programs have been enormously im- tors for risky drug behavior is a The division of drugs between users is pos- portant in controlling HIV among injectors. history of childhood trauma, es- sibly the point at which the majority of infec- Countries and communities that com- pecially sexual abuse. Sustained tions occur. Splitting drugs is often an menced syringe exchange programs when public education and interven- economic necessity. However, it can be ac- HIV infections were minimal, such as Aus- tions to eliminate childhood complished without contaminating the cook- tralia and Tacoma, Washington, have kept in- abuse are essential not just for er by using a new syringe to divide drugs. If fection rates low. Recent data from New York ameliorating unhealthy drug necessary, or if in doubt, the cooker can be City and New Haven indicate that an epi- and alcohol problems but to im- cleaned or replaced with a fresh one. Just as demic situation can be brought under con- prove the general health and with syringe cleaning, disinfecting a cooker trol through syringe exchange. HCV safety of our communities. requires care and time. The injection site screening data from Users Unite! The He- should be cleaned with soap and water or patitis Project at the Lower East Side Harm NEW INJECTORS with an alcohol pad. After injection, gentle Reduction Center in New York City indicates Without question, some people pressure can be applied to the injection site that 50% of tested program participants have will inevitably begin to inject using tissue or cotton to stop bleeding. (Al- positive results. This is significantly lower drugs. Some will use only once cohol pads don’t work because the alcohol than rates of 80% among injectors in other or twice, others will use periodi- stops blood from clotting.) People can be communities who do not have long term, cally and a small proportion will guided to disposing used tissue or cotton in easy access to syringes. Similarly, newer injec- use over long, sustained periods the trash, and used syringes in a puncture tors in Glasgow and Edinburgh have shown of their lives. Early studies fore- proof container or sharps box. To finish, peo- dramatic decreases in HCV infection due in cast a bleak prognosis of a brief, ple can be encouraged to wash their arms part to regularly accessing syringe exchange 6-month period from onset of and hands again, and rewipe the injection programs. Although we are a long way from injection to HCV infection. preparation surface. People should consis- acceptable levels of HCV within the drug- However, more recent studies tently be aware of where contamination may using community (is there an acceptable support increased optimism and have occurred, and take care of it before they level?), we are now seeing that the size of the reveal a much longer window of forget. HCV reservoir can be reduced. opportunity. Until now, mes- The drug-using community has adjusted Until now, safe injection spaces have not sages developed as HIV preven- drug-using norms before to fight HIV; it will been considered as a mechanism for pre- tion strategies have dealt with do so again to combat the additional chal- venting viral transmissions, although a small the end point of injection, lenges of HCV. data set from Switzerland is encouraging. namely syringe use. As drug Safe injection rooms have been primarily use- users, advocates, educators and OLDER INJECTORS ful as a response to eliminating public injec- scientists have developed Any public education campaign must also tion and reducing overdose fatalities. greater awareness of HCV, we’ve target more experienced injectors. A new in- However, along with syringe access programs started talking about not shar- jector is at higher risk of contracting HCV if they could provide an opportunity to estab- ing cookers and cottons. This initiated into injection by someone who has lish standards for hygienic injection practices education is woefully insuffi- been using for longer than five years. Yet epi- and for affecting community norms.

24 TREATMENT communities, so why not health clinics for of the war on drug users, class and race are The medical community has been reluctant drug users? Although Users Unite! The He- also enormously important in assessing sit- to treat HCV in active drug users, principally patitis Project shows the viability of HCV uations of risk. The more intense the drug based on fears of treatment non-compliance screening, participants are usually reluctant repression against the poor—and commu- and HCV reinfection during and post treat- to get confirmatory tests. This lack of conti- nities of color—the greater the level of risk ment. Drug users are also reluctant to inves- nuity of care is a considerable barrier to im- people face. The ultimate goal of any cam- tigate treatment and frequently have negative proved health outcomes. Successful paign is to eliminate all viral infections, but attitudes towards interferon-based therapies. treatment of drug users will decrease the with HCV an important step toward elimi- As educated consumers they are aware of side population burden of HCV and lower the in- nating new infections is to bring prevalence effects, longevity of treatment and low success cidence of new infections. down to a manageable level. This can be rates. Through experience, they are also wary done by reducing transmission, improving of attempting to access a hostile medical sys- ALCOHOL treatment access and promoting better tem. However, it is immoral, unethical and Excessive alcohol consumption, defined as 4 healthcare. However, this cannot be achieved uncivilized to deny treatment to an individual or more drinks a day, is perhaps the single effectively without preventing the discrimi- based solely on his/her drug use. Treatment greatest factor in determining progression to nation, stigmatization and isolation of drug decisions must be made on an individual cirrhosis, liver cancer and end stage liver dis- users. It won’t be public health institutions case-by-case basis. Drug users can present ease, yet alcohol is not addressed in any sig- eliminating this epidemic. It will be drug with multiple problems, including unstable nificant fashion by syringe exchange users themselves. living situations, histories of depression and programs. Health messages regarding the other mental illnesses and complicated med- use of alcohol have been mixed. Methadone Allan Clear is HRC’s Executive Director. ical conditions, all compelling reasons for programs inadvertently promote alcohol use both parties not to choose treatment. How- among their patients by testing urine for ever, individuals who have contracted HCV both secondary drug use and alcohol but 1 Consensus Conference Treatment of through transfusion may also have multiple more stringently punishing the drug use. Hepatitis C, February 27 &28, Maison de la health complications, but these patients are Even advocates who are tolerant of drug use Chimie, Paris, France. A similar tack was not systematically rejected for treatment. put out the simplistic message that alcohol taken at the recent NIH HCV Consensus Although not uniformly, doctors have will lead to death, so stop! Maybe this is in a Development Conference. A draft of the new learned to successfully work with drug users state of change, as New York City’s Positive Consensus Statement says, "All patients with in the treatment of HIV. At the recent HCV Health Project has taken pro-active steps to chronic hepatitis C are potential candidates consensus conference in France the medical address alcohol use as a health problem for antiviral therapy."(Emphasis added) community responded to the question of among its participants by applying for an al- treating drug users with, “These patients cohol treatment license. More information is should be taken in charge by a multidiscipli- needed so that drug users who drink can re- nary team before starting treatment, in order ceive credible information. We need to know HCV AT THE to evaluate their psychological, relational and how much alcohol is tolerable for someone 4TH NATIONAL social stability (often favored by replacement living with HCV. We don’t know if consistent therapy), their need for psychological sup- moderate alcohol use is better than occa- CONFERENCE port, their use of psychotropic drugs and to sional binge use, and we don’t know about Hepatitis C will be a significant focus provide them and their friends/family with occasional social use. of HRC’s 4th National Harm Reduction adequate information. Occasional drug use Similarly we don’t know enough about Conference, “Taking Drug Users by an otherwise stabilized patient does not drug use, how routes of administration may Seriously,” December 1– 4, 2002. contraindicate treatment.”1 Having doctors affect disease progression and whether drugs Frontline Hepatitis Awareness, teach safe injection techniques and also write themselves, or the various substances found scripts for syringes can minimize reinfection. in them, may accelerate liver disease. What American Liver Foundation, National Offering immediate post exposure treatment impact does drug quantity, quality, frequency Alliance of State and Territorial AIDS can treat infection. and type have on the liver? Does it make a dif- Directors, Hepatitis Education Project, There are many individuals with a history ference if one smokes, snorts, ingests or in- Hepatitis C Support Project and the of drug use who are capable of assessing the jects once one has HCV? Is a nicotine patch National AIDS Treatment Advocacy pros and cons of treatment and with whom a preferable to smoking cigarettes? Is cocaine Project are just a few of the hepatitis- comprehensive treatment plan can be de- actually helpful in promoting natural inter- oriented and involved organizations vised. And their treatment course and out- feron? What difference do varying forms of already working on the conference. comes will be no better or no worse than cut make? We need to undertake a research anyone else’s. agenda that is specifically directed to answer- There will be a hepatitis advocates What we don’t know is how medical treating questions pertaining to drug use and meeting taking place at the ment environments affect outcomes. Consid- drug users. conference to look at future ering who is infected with HCV it would seem organizing and planning strategies. to make sense that medical care and treat- CONCLUSION Topics that will be covered at the ment should be provided to drug users in a Drug users are a heterogeneous group. With- conference include HIV & HCV culturally appropriate and sensitive setting. in all populations, but particularly vulnerable coinfection, epidemiolgy, HAV/HBV Methadone programs have long established populations, power and control cannot be vaccinations, screening, prisons, on-site primary care clinics, and syringe access underestimated as co-factors in disease trans- programs could also provide the same level mission. Street-based youth and women can prevention, advocacy, counseling and of care. There are clinics that specifically be particularly vulnerable to lack of control more. At this conference chances are, address the health needs of women, gay/ over their environment. For prisoners, this if you’re living with HCV, so may the lesbian/transgendered people and other goes without saying. Within the prosecution people sitting on your left and right .

25 about social change. Since that time, other The HCV activist/ HEP C ADVOCATES AND disease-related causes, such as the breast cancer awareness movement, have been able to advocacy community ACTIVISTS NEEDED learn from these activist/advocacy groups and have brought about changes using simi- emerged in the mid- lar techniques. Unfortunately, at this time the HCV com- 1990s to tackle many munity has only a handful of activists in the by Alan Franciscus U.S. who are trying to bring about greater issues that had been (Reprinted from June 2002 HCV Advocate) awareness, more services and better care for people affected by HCV. The majority of largely ignored by these activists have previously been involved as AIDS activists—many still are, fulfilling a the government and ADVOCACY AND ACTIVISM ARE TERMS dual role in their work in needle exchanges that are sometimes confused because the and other harm reduction-oriented agencies the public sector. roles they entail can be similar and often and programs—and are mentoring and join- overlap. Activism is defined as the theory or ing the ranks of HCV activists. On the other practice of assertive, often militant, action hand, there are many HCV advocates across such as mass demonstrations or strikes as a the nation. These individuals are mainly means of opposing or supporting a contro- HCV-positive individuals who have been versial issue, entity or person. Advocacy is de- moved to respond to the lack of awareness fined as the act of actively supporting, that is, and services on the part of the government Most people believe that it is difficult and pleading or arguing in favor of something, and other agencies. time-consuming to be involved in activism or such as a cause, an idea or a policy. The HCV activist/advocacy community advocacy. This is true for some efforts, but Generally, when we think of activists, we emerged in the mid-1990s to tackle many is- there are many actions that require little time think of people who are strongly assertive sues that had been largely ignored by the gov- or involvement. An important aspect of ac- and demand immediate ernment and the public sector. The Hepatitis tivism or advocacy is that it can help those HEPATITIS C change. What generally comes C Support Project, the Hepatitis Support and with HCV feel that they can take control of to mind are civil rights activists, Education Project, Hep C Connection and their lives, and effect change that benefits antiwar activists and AIDS and many others emerged to advocate for the both the individual and the community as a breast cancer activists. In the HCV community by supporting and educat- whole. case of these movements, there ing both people with HCV and the general has been an undeniable need public. Simultaneously, programs working to WHAT YOU CAN DO for immediate change. These prevent the spread of HIV in injecting drug dedicated individuals have spo- users, like the Lower East Side Harm Reduc- ❊ Educating Individuals and the Public ken out and sometimes put tion Program, the UFO Project and the As they say, information is power, and people their lives on the line to bring Harm Reduction Coalition, realized the ex- who educate can move mountains. Learn as about social, economic, med- tent of HCV infection in this population and much as you can about HCV and educate ical and other necessary began work to curtail the spread of hepatitis people and organizations, where appropri- changes. C among IDUs and to ensure they had access ate. Make sure you know your facts and pick Activism and advocacy have to up-to-date-information on treatment and your fights carefully. Be prepared to back up taken many forms in the past. prevention. your views with solid facts, and have copies of The first large-scale success in As knowledge of HCV has increased, and reports or studies available to hand out. Gov- modern history was achieved by the organizations that work on the related is- ernment officials (including those working in Mahatma Gandhi in his quest sues have matured, there has been an ac- public health) have immense power, and ac- to gain the independence of companying increase in the need to advocate cess to lots of money. Look at the work U2’s India from Great Britain by di- for specific populations with HCV, such as Bono has done with Jesse Helms. By enlight- rect, non-violent confrontation. prisoners, and particular issues, like access to ening Helms on the impact of AIDS in Africa The Reverend Martin Luther affordable drugs. Examples include the HCV and other impoverished areas, the one-time King, Jr. was able to draw from Prison Project, a consortium of organizations foe of AIDS funding is now turning into an Gandhi’s experience to chal- working to provide support and education to advocate for it—not just in the Third World, lenge discrimination against prisoners with hepatitis C, and the Hepatitis but in the US, too. African Americans in this coun- Action and Advocacy Coalition (HAAC), try when he led the civil rights started in 1998 to tackle issues that require di- ❊ Support Groups movement in the 1960s. In rect confrontation with pharmaceutical com- HCV support groups were one of the first ad- more recent times, AIDS ac- panies and government agencies. There are vocacy efforts to emerge. A support group tivists have been able to use many other organizations and dedicated in- setting can help people with HCV learn similar strategies to bring about dividuals who have given selflessly of their about the disease, coping strategies and other much needed change for peo- time and energy to help bring about greater important areas. Starting and continuing a ple living with HIV and AIDS. awareness and more services for the HCV support group can be one of the best steps In fact, the AIDS activist move- community. However, many more are re- you can take to advocate for the community. ment, which developed in the quired to bring about needed improvements late 1980s, was the first illness- in care and services. In addition, people from ❊ Helping Individuals related group to adopt non-vio- every economic, social, racial and political Helping others can be a very rewarding ex- lent, direct action to bring group are needed for fair representation. perience. Many people with HCV have

26 many unmet needs. It may not seem like much, but simply listening, running er- rands, helping sort through insurance issues or accompanying someone to a medical ap- pointment can be a tremendous help. If you decide to take on this type of responsibility, be sure to define your role in the relationship from the beginning. It is also important to make sure that you can carry out any commitments you make. ❊ Create Educational and Training Materials This is especially important when working with stigmatized groups like injection drug users and prisoners. Creating and distributing educational materials gets crucial information out to the people who need it, and can also help stimulate changes in policy and clinical practice, as service providers come into contact with new ideas, and stereotypes are challenged. Training can help ensure the replication of such state of the art work. ❊ Political Advocacy Involvement in local and national politics can have a tremendous impact. Check with your local city or county health department or agency and attend meetings addressing HCV- related issues. Putting together a petition to submit to a local government can be highly effective. Become involved and know your local candidates; send them letters about issues that affect the community. An example of effective political advocacy is the recent campaign to have the NIH HCV consensus statement amended, ending the current recommendation to refuse treatment to anyone who has not been abstinent from drugs or alcohol for at least six months. A letter signed by many prominent community advocates, researchers, public health special- ists and clinicians was presented at the 2002 Illustration by Joshua Lunsk Consensus Development Conference on Management of Hepatitis C to the authors of to influence public opinion, confrontations other boards and committees demand a the new statement. Additionally, supporters with government agencies such as the Na- great deal of time and energy. Do your home- of the revisions presented research to sup- tional Institutes of Health to demand more work and take your responsibilities seriously. port the requested changes. As a conse- research and visits to drug companies to de- Remember that you represent the communi- quence of these efforts, the new draft version mand lower prices. HCV activists have fol- ty, and act accordingly. of this statement says that “many patients with lowed this lead, for example, by calling for We can all make a difference in our own chronic HCV have been ineligible for trials better care for people with HCV in prisons way. Many times, I have heard people remark because of injection drug use (IDU), alcohol and demanding reduced prices and un- that one person cannot possibly make a dif- abuse, age, and a number of comorbid med- bundling of HCV drugs. ference. This type of sentiment could not be ical and neuropsychiatric conditions. Efforts further from the truth. In my advocacy work, should be made to increase availability of the ❊ Community Advisory Boards/ Committees I have met extraordinary people who have best current treatment to these patients. Be- A community advisory board is a group of taken action and made remarkable progress cause a large number of HCV-infected per- individuals who represent a community and in bringing about more awareness, education sons in the United States are incarcerated, provide informed recommendations, for ex- and improvement in the quality of life for strategies should be developed to better pre- ample, to a pharmaceutical company or a people with HCV. Are you ready for the chal- vent, diagnose, and treat these individuals.” research team. Local governments, private lenge? You can make a difference—all you companies and charitable organizations need to do is to make an effort and follow ❊ Direct Action often have committees that can benefit from your heart. AIDS activists pioneered the use of direct ac- the input of members of affected communi- tion to influence government officials, drug ties. The level of involvement required varies Alan Franciscus is Executive Director of Hepatitis companies, religious leaders and others. from group to group. Sometimes a voice C Support Project and Editor-in-chief of the HCV Such actions have included demonstrations from the community is all that is needed, but Advocate newslettter.

27 LIVING WITH HIV AND HEPATITIS C

by Beri Hull (Reprinted from W.O.R.L.D., May 2002)

I’M A WOMAN LIVING WITH HIV AND In 1999, 1 decided to hepatitis C (HCV). The HCV diagnosis came start HCV treatment. I first. In 1992 my doctor wanted me to get an knew if I let my disease HIV test, but I wouldn’t do it. I was too afraid. progress to cirrhosis, it She tested me for hepatitis C, and it was pos- would be a lot more dif- itive. I was still so scared about HIV that I ficult to treat. I did not shoved HCV into the back of my mind. have a biopsy, which I re- A couple of my friends had HIV. I suspect- gret. A high viral load is ed I was HIV-infected, but didn’t want to not good—and mine know. They gently and lovingly shot down my was super high (95 mil- excuses, assuring me that I could handle it. lion)—but it doesn’t pre- Seeing them living well with HIV convinced dict disease progression me that I might be able to handle it too. the way HIV viral load In 1993, I tested positive for HIV. I only tests do. With HCV only

HEPATITIS C had 131 T-cells, which meant I’d a biopsy can tell you how had the disease for a long time your liver’s really doing. and my immune system was I went on interferon

pretty vulnerable. For three and ribavirin. I took Illustration by Joshua Lunsk months I was a mess. I couldn’t daily ribavirin pills. The focus. I acted crazy. I got lost in interferon had to be injected three times a pegylated interferon (which only has to be in- self pity. I numbed out. I was pa- week—stomach, thigh, other thigh. For some jected once a week), but I’m watching for the thetic. Then I decided to get ed- people, especially former injection drug next line of drugs after that. We need better ucated. users like me, having to use needles can be a drugs! In the early 1990s, we didn’t “trigger,” giving you the urge to shoot dope There are a lot of things you can do to have the HIV drugs we have again. The needles didn’t bother me, but the help your liver, like eating well, exercising now. We assumed we’d die of interferon felt like a bad drug trip. and avoiding or reducing alcohol and drugs. AIDS, so other diseases didn’t I knew going on treatment would be diffi- My liver enzymes go up (bad) when I’m off matter. Once new drugs be- cult, but I had no idea how difficult it would HIV meds, and go down (good) when I’m on came available, and people be. HIV meds have nothing on HCV drugs. them. (I take 6 month on and off cycles with started living longer with HIV, I I’d heard you might be fatigued, but I hon- HIV medication along with an annual five started seeing friends die of estly never knew you could be so tired and day regiment of interluken-2.) I was skeptical liver disease. Some of them had still be alive. when my doctor said HIV was worse for my low HIV viral loads and high My HCV viral load went to undetectable, HCV than the HIV medication, but because T-cell counts. Their HIV was after about five months, which was a relief, of the changes in my liver function tests while under control, but they were but then I became irritable and depressed. off HIV medication I am more of a believer. still dying. I realized I needed to I isolated a lot. Antidepressants helped, but I Those of us who are co-infected can’t af- learn more about HCV. still felt like crap. It got worse when I was pre- ford to ignore HCV. Menopause, cirrhosis or I learned that HCV is a seri- menstrual or on my period, even though you balancing HCV meds with HIV meds can ous disease that can destroy never read about that. I got anemia which make HCV harder to treat. It’s a “silent in- your liver, a crucial organ. More had to be treated. I realized too late that it fection”—if you wait until you get symptoms, people have HCV than HIV, was a mistake to try to hold down a demand- it maybe too late. Why have regrets when you and most don’t know it. Since ing job and be on treatment. can replace fear with knowledge? it’s transmitted by blood it’s My doctor took me off treatment after six By the way, my HIV is under control. Re- most easily passed by sharing months. I knew I should’ve probably stayed member how I had 131 T-cells 9 years ago? needles or contaminated para- on for a year, because of my HIV, but I was so Now I have over 900. 1 just bought my first phernalia—and at one time, tired of feeling lousy. house, and I’m a treatment educator at AIDS transfusions—but can also be My HCV viral load came back almost im- Alliance. Having HIV and HCV isn’t what I passed by sex, if blood is pre- mediately. That was disappointing. But a liver wanted, but I’ve learned to live with it. sent. Some people who get biopsy showed that my liver did benefit from HCV “clear” the virus on their treatment, so I think I did the right thing. At Beri Hull is currently the Consumer Education own, but most become “‘chron- some point, I’m going to need to do it again. Specialist for the Aids Alliance for Children, ically” infected. The drugs have gotten a little better with Youth and Families.

28 fair if I alone were to receive treatment. I from the phonebook at random. I had SCORING TREATMENT wrote to the Director and asked him if it was friends, family and anyone else I could get FAIR for me to serve my country while others to help placing posters up around town. I’d FOR HEP C: A PRISONER went to Canada, to be allowed to come back send these posters myself to fast food restau- home later with no fear of prosecution? rants, convenience stores and temporary BEATS THE SYSTEM Needless to say, there was no response. employment agencies. I sent them anywhere I did an interview with the local magazine. and everywhere I thought a lot of people Shortly afterwards I began doing other inter- could see them. By the time I had finished, I views. I located an attorney after writing near- had sent out around 1,000 letters and by Michael K. Paulley ly every civil attorney in Louisville. A civil posters. rights group became involved and set up a The law firm of Rubin & Rudleberger fi- news conference with Dr. Cecil and my attor- nally contacted me. They required more in- neys present. formation than what I had put in my IT WAS EARLY 1990 AND I HADN’T BEEN I started doing my own research about generalized letters. I forwarded the infor- out of prison very long. I was hungry, hard the disease. Every piece of material I could mation to them. They received it on a pressed for money and decided to sell a pint find about HCV I would read. Slowly, I was Wednesday, spoke with Dr. Cecil on a Thurs- of blood in order to buy something to eat. becoming educated about the disease. I dis- day and were at the prison on a Friday. I When I went back to the blood bank a few covered that a time bomb was inside my body knew without a doubt; this was the team I weeks later they told me I couldn’t donate be- that could kill me. I eventually had to be hos- wanted on my side. cause I had been exposed to HCV. I didn’t pitalized over my gallbladder failing me. The know the first thing about the disease at the surgeon told me he would do a biopsy since time so I wasn’t concerned when they gave he was going to be inside my gut anyway. The I started doing my own me the news. I simply filed it away in the back biopsy confirmed that I had a cirrhotic liver. of my mind as some insignificant ailment. It The surgeon told me from simply eyeballing research about HCV. I would be many years later before I would the liver that it wouldn’t be too long before I learn anything about HCV and the harm it would need a transplant. began discovering that had caused me. The prison doctor we had at the time sent I became hospitalized in 1991 from a me out to be seen by a gastroenterologist. inside my body was a grand mal seizure I suffered while roofing. I This GI doctor said he could see no reason became unsatisfied with the aftercare I was why I wouldn’t live another 20 years. In a sar- time bomb that could receiving from the hospital I was going to at castic tone, I told him I thought it fascinating the time, so I decided to have my care trans- that he could make such a prognosis without kill me. ferred to the local VA hospital. I brought the my medical records, especially doctors at the VA up to date on all I had been in light of the fact that a sur- told about the HCV. They decided to do their geon had seen my liver first own confirmation testing. Afterwards, I hand and stated I would need would undergo a liver biopsy. I never re- a transplant. The GI doctor ceived that biopsy because I found myself on went so far as to tell me there my way back to prison. was no treatment for this dis- I met another prisoner with HCV after I ease. I knew immediately he was back in for a few years. We discussed his was lying. (The first indication diagnosis and mine. After only a few minutes, he was lying to me was when I we both discovered neither of us knew the saw his lips move.) I had al- first thing about hepatitis. In October of ready read up quite a bit on 1998, the Department of Corrections ap- this disease and I knew there proved my treatment at the VA Hospital. was treatment for it. I re- That is when I first met Dr. Bennet Cecil, Gas- turned to the prison that day troenterologist/Hepatologist. He began run- furious. I told the Medical De- ning a series of tests to ensure I would be able partment what had tran- to undergo treatment. All the test results spired. I asked to be seen by came back good. In April of 1999, I began the local VA Hospital. Eventu- treatment. Unfortunately for me, the treat- ally, my request was approved. ments were to be short lived: two weeks later, While all of this was taking the Department of Corrections stopped place, I started a campaign them. Upon discovering the news, a nurse at to secure my treatment. I the prison notified Dr. Cecil of what had tran- had written letters to every spired. That’s when he began taking action civil rights group I could on my behalf. get an address for, politi- Dr. Cecil contacted the Governor, Com- cians, church and religious missioner of Corrections, Undersecretary of organizations, media, med- Health for Veteran’s Affairs, the Corrections’ ical organizations, celebrities, Medical Director and a local magazine. VA groups and special inter- When each responded, the one above passed est groups. When I ran out of the buck to the next one down the ladder. ideas of whom to write, I The Medical Director stated it would not be began picking John Q. Public Illustration by Joshua Lunsk

29 Not long after we had filed suit in Federal became so great, I had to start using a wheel- water, I was going see this thing all the way Court, I asked the attorneys to file for an chair to get around. At times, it took every through. emergency order to get me treatment. I felt ounce of strength I could muster just to get I went for six weeks without an injection. that without treatment, I might not live long into the chair to make it to the restroom. Labs were drawn which showed my ALT’s to enough to see the case to its end. My health Adding insult to injury, I was required to wait be as low as they had been when I was on the was declining; I needed treatment soon. We in pill lines during searing hot days, in the treatment. My albumin level had nearly dou- had a hearing in Federal Court in September pouring rain and then, later, in the freezing bled. I will soon know whether or not my viral of 1999. The Department of Corrections put cold. load is undetectable. My V.A. Doctor and I on their one and only witness. It was their For 18 months I took daily injections of in- are optimistic in hoping for no trace of the new Medical Director. The one who had terferon at 2.5 mu. Due to side effects, I was virus. stopped my treatment decided to leave the taking anywhere from 200 to 1200 mg. of rib- Some progress was made since that March country. The new Director was not at all pre- avirin. I interrupted treatment after 18 day in Federal Court. We now have someone pared. He had only been on the job a month months to take a break from all the side ef- heading up the Department of Corrections and wasn’t very familiar with my medical fects. Six weeks after interruption my ALT’s Medical Section who has experience in treat- records. Our expert, Dr. Cecil, took the started climbing and my albumin was ex- ing Hep C patients. There are now about a stand. He spoke with confidence, authority tremely low. I began taking treatment again. dozen or two other prisoners who have been and precision. The Court and the media This time however, I started on pegylated in- treated, or are currently being treated. I were very impressed by him. terferon, the once a week shot. The side ef- helped one other prisoner with his suit, and In December of 1999, the Federal Magis- fects from it were not nearly as bad as the now he is receiving treatment. He too has trate/Judge issued an 84-page opinion and ones from the daily injections. HCV Cirrhosis. recommendation in my favor. He found the I came down with double pneumonia a I started the first Hep C Support Group in D.O.C. expert’s credibility to be highly sus- few months back. The antibiotics I was given the Kentucky Prison System, with the help on pect, and their reason for denying treatment did very little to help. After 5 1/2 months of one of the psychologists here. Through the to be financial—not medical. He went fur- the new treatment, I again interrupted it to group, I continue to educate other prisoners ther and declared Dr. Cecil’s credibility reli- help bring my immune system back up in about the disease and its treatment. I receive able. On March 30, 2000, the U.S. District order to rid myself of the pneumonia. I knew a lot of mail from prisoners throughout the Court Judge ordered that I be allowed to be the D.O.C. was watching my progress. I felt U.S. wanting help and advice. They often re- treated by Dr. Cecil at the VA Hospital. that nothing would make them happier than quest copies of my lawsuit. I do my best to ac- I was on the combination therapy for 18 for me to die on treatment, or for treatment commodate them all, but my funds have months, starting April 12, 2000. I can assure to fail. Either way, it would give them an ex- dwindled. All I can basically do now is reply you from first hand experience, it was no joy cuse for not treating other HCV+ prisoners in to their letters. ride. There were times that the treatment the future. No matter what, I was determined There are a lot of changes yet to be made made me feel worse than what I thought the that I would not give up. I was not going to let in treating prisoners with this disease. All I’ve disease could ever do. The fatigue and pain them find an easy way out. Come hell or high done is reach the tip of the iceberg. No matter what, as long as I live and breathe, I will continue to fight for treatment. Unless you WA N T have watched someone die from this disease, WE YO U you cannot even begin to imagine the agony FOR and misery they endure. I strongly urge every prisoner, every veter- HRC MEMBERSHIP an, every civilian, every living, breathing human being to become involved in this fight Becoming a member of the Harm Reduction Coalition is one of the most significant ways you for treatment. No matter how insignificant can support our organization’s work and mission. As a coalition of harm reduction practitioners, providers, and consumers, HRC draws its strength, diversity, and expertise from the nationwide you might think your letter or your voice may network—people and organizations like you—that is HRC. As a member, you will receive regu- be, yours may end up being that one that lar reports about HRC activities and events; a one-year subscription to Harm Reduction makes a difference. I urge everyone who Communication; and discounts on HRC conferences, trainings, publications, and merchan- reads this to do something everyday regard- dise. So demonstrate your support of harm reduction and the Harm Reduction Coalition by being hepatitis C. It doesn’t matter what it is as coming a member today. long as it is something. It may be no more _____ Individual ($35 up to ?) than talking with a family member or a friend _____ $100 Organizational about this disease. It may be sending off to _____ $250 Senior Member ☛ get some up-to-date information. _____ $500 Core Member If you would like to write and discuss the _____ $1000 Harm Reduction Partner disease, express your opinion or have ques- Name: ______tions, I would be glad to hear from you. You can write to me at: Michael K. Paulley # Organization:______91253, Kentucky State Reformatory, 3001 W. Address: ______Hwy. 146, LaGrange, Ky. 40032. I will do my City: ______State: ______Zip Code: ______best to reply to each and every letter. Phone: ( ) ______Fax: ( ) ______E-mail: ______Michael Paulley is imprisoned at the Kentucky Send all membership subscriptions to: Membership, Harm Reduction Coalition, State Reformatory in LaGrange. He vows that he 22 West 27th Street, 5th floor, NY, NY 10001 will not stop fighting until every single American prisoner has access to HCV treatment.

30 HRC’s THE STRAIGHT DOPE education series meets your need for accurate, practical and non-judgmental information in straightforward language on drugs and drug use.

H is for Heroin, C is for Cocaine, and S is for Speed each describe their respective drug and the forms in which it comes; how it is used; its physiological and subjective effects on the body and the mind; tolerance, addiction, and withdrawal; detoxification; overdose prevention and management; legal issues; and stigma. Written by users themselves, each gives an honest account of the benefits that users report as well as the risks, dangers, and negative effects of their use.

Overdose: Prevention and Survival Often the difference between life and death depends on what actions someone takes to care for a person who has overdosed. Step by step “what to do’s” and “what not to do’s” are specifically outlined in this brochure. Tips on how to prevent an overdose are also included.

Sobredosis Prevención y Supervivencia Este folleto ofrece información importante de lo que es una sobredosis y como evitarla, y los pasos a tomar que pueden salvarle la vida a una persona en esta situación.

Hepatitis ABC Hepatitis is a disease that causes inflammation, swelling and sometimes permanent damage to the liver. For people who inject drugs it is especially serious. This brochure was created for people who inject drugs and want more information. It is also appropriate for anyone who wants clear, general information on Hepatitis A, B and C.

Hepatitis ABC (en Espanõl) La hepatitis es una enfermedad que causa inflamación, hinchazón y aveces daño permanente al hígado. En las personas que se inyectan drogas es especialmente peligrosa. Este folleto fue creado por personas que se inyectan y quieren más información acerca de la hepatitis A, B y C.

Getting Off Right is a plain-speaking, how-to survival guide for injection drug users. Written by drug users and service providers, it is a compilation of medical facts, injection techniques, junky wisdom and common sense that aims to provide the necessary information to keep users and their communities healthier and safer.

STRAIGHT DOPE brochures can be purchased in bulk at 20 cents each. Getting Off Right is available at $1.50 per copy. Shipping charges: For orders in the Continental US: up to 200 brochures or 10 manuals, add $4.00. For 201-1000 brochures, or 11-50 manuals, add $6.50. ALL OTHER SHIPPING: Please Call HRC @ 212 213 6376, ext. 12 for prices. PLEASE NOTE: WE WILL NOT FILL ANY ORDER UNTIL THE SHIPPING COST IS CORRECTLY CALCULATED!!! For agencies placing large orders (over 1000 brochures, or 50 manuals), you will have to call us for shipping costs. PURCHASE ORDERS: Any agency using a purchase order must call us (212 213 6376, ext. 12) for shipping rates prior to submitting the P.O.

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31 making the point that debilitation is more candidates are supported by other patients HEPATITIS C DRUG likely than death. who have been through the process—many The first step is to confirm the presence of clients find this particularly daunting. The THERAPY FOR PEOPLE hepatitis C using ELISA antibody tests for biopsy is not compulsory, nor a condition of ON METHADONE HCV. If the test comes back positive OASIS treatment. uses the PCR or bDNA test to confirm the Before being started on treatment, pa- MAINTENANCE presence of virus particles in the blood. To tients must show their commitment by regu- date OASIS has found that 23% of their larly attending the educational sessions. by Matthew Dolan clients who are antibody positive are PCR Requirements for active users: they must (Reprinted from Spring 2001 User’s Voice) negative, a higher than average figure. It is want and need treatment (histologic need or speculated that this MIGHT have something showing severe symptoms), have no medical to do with the immune systems of IDUs being contraindications and be able and willing to on “red alert,” possibly relating to the large reliably come to appointments. Treatment THE SUBJECT OF TREATING HEPATITIS number of impurities in street drugs. Geno- currently consists of pegylated interferon C positive (HCV+) opiate-injectors users with type tests are also ordered, because this has a plus ribavirin. (Ed: the results reported below are interferon-based therapy has been shot big bearing on the likelihood of response. for standard interferon/ribavirin, as the pegylated through with controversy (no pun intended). Sylvestre notes a high incidence of au- version had not been released at the time treatment I recently attended the Hepatitis C Global toimmune conditions among her patients, was conducted.) They have found that pegylat- Foundation Conference in San Francisco particularly type II diabetes. It is not clear to ed interferons, only needing to be injected (Ed: Matt’s referring to the July, 2001 event), what extent these are due to HCV, or lifestyle. once per week, have greatly assisted compli- where I was able to interview doctors treating Tests for hypertension, blood cholesterol, ance, but have certainly not neutralised side these groups. anaemia and arthritis are ordered. They are effects, as is sometimes claimed by those close Barry Clements, P.A.C., and Diana also screened for other co-morbid or compli- to the pharmaceutical companies manufac- Sylvestre, M.D., work at OASIS (Organization cating conditions such as HIV, TB, hepatitis turing these drugs. to Achieve Solutions in Substance Abuse), a A and B and syphilis, as well as for psychiatric “This is a heavy treatment, particularly if nonprofit medical clinic in Oakland, Califor- disorders and signs of using street drugs. folks are having a rough time already; this nia. They provide medical treatment to hun- A full panel of blood tests for liver func- can push them over the edge….We need to dreds of people living with HEPATITIS C tion are ordered for candidates: these in- see these patients frequently. People have hepatitis C (and sometimes clude ALT/AST, bilirubin, albumin, GGT, died on this,” comments Sylvestre. HIV, too) most of whom are AFP, platelets and prothrombin time. Liver Once the patient has started, OASIS’ ap- methadone patients, or in a biopsy is the preferred method of confirming proach is to go to great lengths to support few cases, active drug users. In levels of both structural damage and inflam- them with medication. It is not uncommon general OASIS’ clients are eco- mation in the liver. Sylvestre and Clements to prescribe patients Procrit (a bone marrow nomically disadvantaged, have are keenly aware that normal ALTs are poor treatment supporting red blood cell produc- ongoing chemical dependency absolute indicators of liver damage in HCV tion), anti-depressants, and anti-inflammato- issues and a substantial num- patients, and that AST levels can correspond ry drugs. About 24% drop out. Of those who ber have mental health prob- to organs other than the liver. Twenty-two stay the course 88% are on anti-depressants lems. OASIS also provides percent of their patients with advanced fi- by the end of therapy. counselling and facilitates peer brosis have normal AST/ALT results; a pecu- The staff are very proud of their results. support groups, which have liarity they attribute to liver damage caused 54% of methadone patients are free of de- played a key role in advocating by long term HCV infection (damaged livers tectable virus at the end of therapy,1 which is and managing drug therapy often produce fewer liver enzymes). Biopsy in line with other published results in the U.S. for maintenance clients. “Our clients who have been through therapy are the best advocates for this treatment; on-going support is critical to the success of our programme,” observes Dr. Sylvestre. There is no pressure on people attending the clinic to take the therapy. Those who express an interest are carefully screened for both suitability and the likelihood of being able to comply. Suitable candidates must show evidence of the presence of HCV RNA in the blood, as well as liver disease progression, two widely accepted indicators of a need for this imperfect therapy. Clients are counselled regarding the implications of HCV, including Illustration by Joshua Lunsk

32 Sylvestre is also keen to stress what she sees date have not shown a substantial impact of as the qualitative, social benefits of the pro- TREATMENT OF HCV IN substance abuse relapse on treatment out- gramme, which, she emphasizes, is depen- comes in IDUs,14, 23 and careful adherence dent upon group support and close, THE METHADONE data is lacking. In light of the overwhelming frequent monitoring: prevalence of HCV in IDUs,3, 8 the increasing “The treatment can be a bridge to a sober PATIENT morbidity of this disease,2 and the limited ac- life; we have seen some remarkable stories.” cess of IDUs to liver transplantation,24 it is im- perative to develop treatment approaches for Matt Dolan is the author of The Hepatitis C IDUs that realistically assess and surmount Handbook–Revised Edition. Edited by Iain M by Diana L. Sylvestre, MD these barriers. An approach that focuses on Murray-Lyon MD. CALL 020 8986 4854 ISBN (Reprinted from HCV Advocate Medical Writers’ Circle, a pub- more stable recovering IDUs provides an lication of the Hepatitis C Support Project. Visit their web site at is 0 9529509 2 8. Email [email protected] for http://www.hcvadvocate.org) ideal opportunity to understand the impact further enquiries and ordering information. For of treating this relatively difficult population additional information about O.A.S.I.S, see with medications that may potentially be http://www.oasisclinic.org. problematic. INJECTION DRUG USERS (IDUs) HAVE THE Methadone maintenance is currently the highest HCV infection rates of any behavioral most effective pharmacologic treatment for 1 Note that these are end of treatment results, risk group, and in the U.S. injection drug use chronic heroin addiction.25-27 A synthetic nar- not sustained viral response (SVR) rates. See accounts for at least 60% of new cases.1 Ap- cotic with actions similar to morphine and the accompanying article “Treatment of HCV proximately 70-96% of long-term injection heroin, methadone has a half-life of 15-25 in the Methadone Patient” for the OASIS drug users are infected with the virus.1-6 hours and can be dispensed as a treatment patients’ SVRs.

POSTSCIPT: Last January I spoke to Diana Sylvestre to see how the OASIS program was progressing. She ex- plained that the results Matt reported in his earli- er article were from OASIS’ patients who had been receiving the standard interferon/ribavirin combination treatment on an outpatient basis. Some of them were formally enrolled in a study (study requirements: active disease-demonstrated histologic need or presence of severe side effects, no unstable medical or psychiatric conditions, willingness to undergo treatment, at least 6 months of abstinence from alcohol and/or illicit drugs prior to onset of drug therapy); others were treated in parallel by OASIS, with the same less rigid requirements for treatment as reported on the preceding page (patients must want and need treatment, have no medical contraindications and be able to come to appointments reliably). A new study protocol is in the works, using pegylated interferon/ribavirin, with half of the 200 patients receiving standard Illustration by Joshua Lunsk outpatient therapy and the other half undergoing directly observed therapy (DOT, where the patient Parenteral transmission is very efficient: as takes the medication in the presence of a health care many as 65%-70% of IDUs are infected within Those using [heroin, provider). In the new study, the formal criteria re- main the same as above, but OASIS has the option one year of needle use, and after 5 years of in- cocaine, amphetamines] of admitting patients with three to six months of jecting, as many as 90% of users are infected 4, 5, 7-9 abstinence if they meet all of the other study re- with HCV. For this reason, many experts quirements. Patients in the formal study receive free estimate the length of exposure to HCV in showed an SVR of 20%, medication. Patients not on the study who cannot drug users by subtracting one year from the afford treatment will not be turned away. (Note: total number of lifetime years of needle use. compared with 32% in there are some patients with medical insurance who Despite the remarkably high prevalence of pay for their office visits and lab tests.) HCV in IDUs, there is surprisingly little data abstinent patients. One additional finding of interest that Matt about treatment in this population. Comor- doesn’t mention: OASIS’ methadone-using bid psychiatric disease,10-12 relapse to sub- patients raised their doses by a median of 10 mg. stance use,13, 14 reinfection15-17 and poor over the course of their treatment. For a full report adherence18, 19 are potential obstacles that on OASIS HCV treatment program, see the accom- must be addressed when treating IDUs for panying article, “Treatment of HCV in the HCV. However, severe interferon-mediated Methadone Patient .” depression does not necessarily correlate with pre-existing psychiatric disease,20-22 and human data on HCV reinfection after treatment is extraordinarily scant.14, 23 Studies to

33 Clearly, methadone use during HCV 29%. Because of the low number of patients in the alcohol group, a subanalysis of the ef- treatment is not problematic. fect of larger vs. smaller quantities of alcohol could not be undertaken. An analysis of the impact of sobriety length on treatment outcomes showed that for heroin addiction only by hospital phar- stantially more advanced liver fibrosis, or being sober at the start of treatment was im- macies and by federally regulated drug treat- scar tissue, as compared with typical non-de- portant, even if that period was relatively ment programs.25 The methadone withdrawal pendent populations. Fibrosis on liver biop- short. Patients with sobriety lengths of less syndrome is qualitatively similar to that of sies is typically graded on a scale of 0-4, with than six months exhibited virologic respons- heroin, but it differs in that the onset is slow- 0 being no fibrosis and 4 being severe fibro- es similar to those with more lengthy sobriety, er, the course is more prolonged, and the sis, or cirrhosis. The average fibrosis stage in 37% vs. 30%, respectively. However, patients symptoms are less severe. It is used most O.A.S.I.S. methadone patients is 2.6, much without pretreatment drug sobriety showed a effectively as a long-term maintenance treat- higher than the scores of approximately 1.2- decrement in treatment outcome, with an ment with ancillary psychosocial interven- 1.4 seen in typical treatment populations. overall SVR of 17%. tions.28 Used appropriately, it has been shown Advanced fibrosis of stage 3 or higher was Thirty-five percent of study patients used to dramatically reduce recidivism and assist seen in 29% of O.A.S.I.S. patients, and fewer heroin, cocaine, and/or methamphetamines the majority of those taking it with achieving than 20% had minimal liver disease. Of during HCV treatment. Those using these medical, psychological, and psychosocial sta- those with elevated liver enzymes on blood drugs showed an SVR of 20%, compared with bility.25 testing, 37% showed advanced fibrosis of 32% in abstinent patients. When analyzed by O.A.S.I.S. (Organization to Achieve Solu- stage 3 or higher, and surprisingly, up to 22% quantity of drug use, a stepwise decrement in tions in Substance-Abuse) is a nonprofit or- of those whose liver enzyme tests remained treatment outcome was seen, with the most ganization located in Oakland, CA that persistently normal showed advanced fibro- dramatic effect of this behavior seen in those provides medical treatment to recovering sis. It is obviously of great importance in using drugs regularly. None of these patients IDUs, with a focus on developing HCV treat- these patients to proceed with a full workup, showed a virologic response, whereas 20% to ment strategies in this population. Nearly even in the presence of blood tests that many 29% of those using drugs less frequently

HEPATITIS C 1,000 IDUs have been would consider reassuring. showed a sustained virologic response. Be- screened for HCV and approx- Treatment results of the first 59 cause a substantial proportion of patients imately 100 methadone pa- methadone patients (of 105 projected) to using drugs infrequently showed acceptable tients have been treated for the complete standard interferon/ribavirin com- virologic outcomes, relapse to drug use dur- disease.29 Its group treatment bination therapy using the O.A.S.I.S. group ing HCV treatment should not prompt HCV model is to date the most ef- model show a sustained response rate (SVR) treatment discontinuation, but rather an fective means of treating HCV of 28%, modestly lower than the 41% SVR early and aggressive attempt to intervene be- in IDUs.30, 31 Current research seen in large trials of non-dependent popu- fore the drug use becomes regular. is focusing on HCV treatment lations. The overall dropout rate for this pop- Putting it all together, methadone patients in methadone patients and un- ulation is 24%, similar to the 20-21% dropout undergoing HCV therapy have a host of po- derstanding the impact of psy- rate typically seen in HCV treatment trials. tentially difficult barriers to treatment, in- chiatric disease, length of These results raise a question: what is it about cluding underlying psychiatric illness, sobriety, and intervening drug the methadone patients undergoing treat- alcohol use, and drug use. When treated pa- and alcohol use during HCV ment in this trial that led to a reduced treat- tients without any of these characteristics are therapy in this population.31 ment response? How does psychiatric disease, analyzed separately, their SVR is 50%, even Compared to HCV pa- sobriety length, and drug or alcohol use higher than that of the published trials. tients in large worldwide stud- during treatment influence response rates? Is Clearly, methadone use during HCV treat- ies of HCV therapy, O.A.S.I.S. the use of methadone while on HCV treatment is not problematic, and may indeed be methadone patients are older, ment problematic, and therefore should protective of response rates by assisting with more racially and sexually bal- methadone patients undergo detoxification adherence to HCV therapy and maintaining anced, and are therefore more prior to HCV treatment? medical stability. representative of HCV-infected Patients reporting a pre-treatment psychi- These results suggest that a decision to persons in the U.S. The medi- atric diagnosis showed a lower SVR when treat HCV should not be negatively influ- an length of HCV infection is compared with non-psychiatric patients, 22% enced by methadone therapy, and that, while over a decade longer than that vs 37%. Overall, 50% of patients in the study substance use is associated with reduced seen in most studies, and a his- were taking antidepressants prior to therapy treatment responses, a significant proportion tory of heavy alcohol use is and 88% were taking such medications by of patients still benefit. In light of these find- common. The majority of pa- treatment completion, with SSRIs like citalo- ings, although we emphasize helping our patients report a previous diag- pram (Celexa) and paroxitene (Paxil) being tients avoid any substance abuse, a strategy nosis of psychiatric illness. the category of medications most commonly that focuses on aggressive psychiatric inter- Seventy-seven percent of pa- prescribed. These results suggest that pro- vention, side effect management, and pre- tients exhibit current infection phylactic antidepressants might need to be venting relapse to regular drug use will assist as determined by PCR. considered in the majority of such patients a substantial proportion of methadone pa- In concert with the rela- contemplating treatment. tients with successfully completing therapy. tively lengthy exposure to the Overall, 21% of treated patients con- HCV virus and frequent histo- sumed alcohol of some quantity during HCV Diana Sylvestre is a physician and Assistant Clin- ry of comorbid alcoholism, therapy, but the patients who consumed al- ical Professor of Medicine, UCSF. She is the Execu- methadone patients show sub- cohol had only a mildly reduced SVR, 25% vs. tive Director of OASIS, in Oakland, CA.

34 REFERENCES 16. Tisone G, Baiocchi L, Orlando G, et al. 23. Dalgard O, Bjoro K, Hellum K, et al. 1. Alter MJ. Epidemiology of hepatitis C. Hepatitis C reinfection after liver Treatment of chronic hepatitis C in injecting Hepatology 1997; 26:62S-65S. transplantation in relation to virus genotype. drug users: 5 years’ follow-up. Eur Addict Res 2. Alter MJ, Mast EE, Moyer LA, Margolis HS. Transplant Proc 1999; 31:490-1. 2002; 8:45-9. Hepatitis C. Infect Dis Clin North Am 1998; 17. Wyatt CA, Andrus L, Brotman B, Huang F, 24. Koch M, Banys P. Liver transplantation and 12:13-26. Lee DH, Prince AM. Immunity in opioid dependence. Jama 2001; 285:1056-8. 3. Thomas DL, Vlahov D, Solomon L, et al. chimpanzees chronically infected with 25. McCaffrey BR. Methadone treatment: our Correlates of hepatitis C virus infections hepatitis C virus: role of minor quasispecies vision for the future. J Addict Dis 2001; among injection drug users. Medicine in reinfection. J Virol 1998; 72:1725-30. 20:93-101. (Baltimore) 1995; 74:212-20. 18. Bangsberg DR, Hecht FM, Charlebois ED, et 26. O’Connor PG, Fiellin DA. Pharmacologic 4. Zeldis JB, Jain S, Kuramoto IK, et al. al. Adherence to protease inhibitors, HIV-1 treatment of heroin-dependent patients. Seroepidemiology of viral infections among viral load, and development of drug Ann Intern Med 2000; 133:40-54. intravenous drug users in northern resistance in an indigent population. Aids 27. Johnson RE, Chutuape MA, Strain EC, Walsh California. West J Med 1992; 156:30-5. 2000; 14:357-66. SL, Stitzer ML, Bigelow GE. A comparison of 5. Garfein RS, Vlahov D, Galai N, Doherty MC, 19. Knobel H, Carmona A, Grau S, Pedro-Botet levomethadyl acetate, buprenorphine, and Nelson KE. Viral infections in short-term J, Diez A. Adherence and effectiveness of methadone for opioid dependence. N Engl J injection drug users: The prevalence of the highly active antiretroviral therapy. Arch Med 2000; 343:1290-7. hepatitis C, hepatitis B, human Intern Med 1998; 158:1953. 28. Newman RG. Methadone treatment. immunodeficiency, and human T- 20. Van Thiel DH, Friedlander L, Molloy PJ, Defining and evaluating success. N Engl J lymphotropic viruses. American Journal of Fagiuoli S, Kania RJ, Caraceni P. Interferon- Med 1987; 317:447-50. Public Health 1996; 86:655-661. alpha can be used successfully in patients 29. Sylvestre D, Clements B. Characteristics of 6. McCarthy JJ, Flynn N. Hepatitis C in with hepatitis C virus-positive chronic methadone patients with active hepatitis C, methadone maintenance patients: hepatitis who have a psychiatric illness. Eur J American Society of Addiction Medicine, prevalence and public policy implications. J Gastroenterol Hepatol 1995; 7:165-8. Atlanta, GA, 2002. Addict Dis 2001; 20:19-31. 21. Van Thiel DH, Friedlander L, De Maria N, 30. Sylvestre D, Clements B. Treating hepatitis C 7. van den Hoek JA, van Haastrecht HJ, Molloy PJ, Kania RJ, Colantoni A. Treatment in methadone maintenance patients, Goudsmit J, de Wolf F, Coutinho RA. of chronic hepatitis C in individuals with pre- American Society of Addiction Medicine, Prevalence, incidence, and risk factors of existing or confounding neuropsychiatric Atlanta, GA, 2002. hepatitis C virus infection among drug users disease. Hepatogastroenterology 1998; 31. Sylvestre D. Treating Hepatitis C in in Amsterdam. J Infect Dis 1990; 162:823-6. 45:328-30. Methadone Maintenance Patients: An 8. Bell J, Batey RG, Farrell GC, Crewe EB, 22. Pariante CM, Orru MG, Baita A, Farci MG, Interval Analysis. Drug Alcohol Depend Cunningham AL, Byth K. Hepatitis C virus in Carpiniello B. Treatment with interferon- 2002; in press. intravenous drug users. Med J Aust 1990; alpha in patients with chronic hepatitis and 153:274-6. mood or anxiety disorders. Lancet 1999; 9. Gerberding JL. Incidence and prevalence of 354:131-2. human immunodeficiency virus, hepatitis B virus, hepatitis C virus, and cytomegalovirus among health care personnel at risk for blood exposure: final report from a longitudinal study. J Infect Dis 1994; 170:1410-7. 10. Ho SB, Nguyen H, Tetrick LL, Opitz GA, Harm Reduction Communication Basara ML, Dieperink E. Influence of psychiatric diagnoses on interferon-alpha Ad prices treatment for chronic hepatitis C in a veteran population. Am J Gastroenterol 2001; 96:157-64. Nonprofit* 11. Mason BJ, Kocsis JH, Melia D, et al. Biz card ...... $75 Psychiatric comorbidity in methadone 1/4 page ...... $100 maintained patients. J Addict Dis 1998; 1/2 page ...... $175 17:75-89. full page ...... $300 12. Milby JB, Sims MK, Khuder S, et al. Inside front and back covers ...... $500 Psychiatric comorbidity: prevalence in methadone maintenance treatment. Am J Drug Alcohol Abuse 1996; 22:95-107. 13. Davis GL, Rodrigue JR. Treatment of chronic Corporate* hepatitis C in active drug users. N Engl J Med Biz card ...... $250 2001; 345:215-7. 1/4 page ...... $400 14. Backmund M, Meyer K, Von Zielonka M, 1/2 page ...... $750 Eichenlaub D. Treatment of hepatitis C full page ...... $1250 infection in injection drug users. Hepatology inside front and back covers ...... $5000 2001; 34:188-93. 15. Lai ME, Mazzoleni AP, Argiolu F, et al. Hepatitis C virus in multiple episodes of Back Page ad/ Issue sponsorship acute hepatitis in polytransfused Call Paul Cherashore at 212 213 6367, extension 16. thalassaemic children. Lancet 1994; 343:388- *Prices are for print ready ads and DO NOT include typesetting. 90.

35 HCV HEALTHTIPS

by James Learned

MAYBE YOU’VE JUST FOUND OUT THAT you have hepatitis C (HCV). Maybe you’ve known for years and have avoided dealing with it. Or maybe you’ve put off being tested because you’re scared. Whatever the case, don’t panic! Sure, the prospect of dealing with a viral infection can be frightening, and chronic HCV infection can sometimes lead to serious liver disease, even liver failure and death. But our understanding of HCV is growing every day. Recent advances in treatment, particularly the new pegylated interferons, have under- standably led many health care HEPATITIS C providers and people with HCV to rush to treat. Some doctors suggest treatment right away, no matter what. But there’s usually no need to rush into treatment. The effectiveness of interferon, including the pegylated versions, is limited, and most people experience severe side effects during the course of treatment. [Pegylation is a process

that keeps interferon in your Illustration by Joshua Lunsk body at more consistent levels than standard interferon. This allows for once a week injec- Learn everything you can about HCV, see The more you know tions, rather than three times a a health care provider regularly, keep track week, as well as higher success of your lab results and take care of your liver about HCV, the better rates. The FDA approved one —you only have one, and there’s lots you brand (PEG-Intron) in Janu- can do to keep it as healthy as possible. treatment decisions ary of last year, and another (Pegasys) will hopefully be MONITORING LIVER HEALTH: you can make for available later this year.] DIAGNOSTICS & TESTS Figuring out whether or With chronic HCV infection, no one can yourself now and in not to begin treatment for predict who will live for decades without HCV is complicated. It’s even symptoms and who will develop liver scar- the future. more complicated if you’re ring (fibrosis, cirrhosis) or liver cancer. Find also living with HIV. This is a a doctor who understands HCV (usually a very personal and individual gastroenterologist or hepatologist) and work decision. Take into account with him or her to monitor how your liver is what’s going on in your life, doing. Keep track of your test results so that including the type and degree you’ll have as much information as possible of your drug use, the level of in order to make treatment decisions that emotional support available are right for you. to you and whether you’re Liver Function Tests: Liver cells constant- prepared for six months to ly die off and new ones grow. A by-product one year of sometimes debili- of liver cell damage or death is the secretion tating treatment. of liver enzymes into your blood. Liver

36 function tests measure your enzyme levels spond to interferon treatment. Learning course these and other alternative substances each time you get blood work done. If you’re your genotype will give you some statistical in- can sometimes have dangerous side effects, HCV-positive, most doctors will monitor your formation about how likely you are to bene- especially if taken in high doses. For exam- liver enzymes (ALT, AST) every six months. fit from treatment. So if you’re considering ple, over 800 mg. a day of vitamin E can be It’s a good idea to get a baseline reading, but treatment, knowing your genotype can be toxic to your liver. Other supplements can ac- your enzyme numbers can be affected by so very helpful. tually harm your liver—peppermint, mistle- many variants that they’re primarily useful for toe, yerba tea, sassafras, germander, comparison purposes over time. Your en- TAKING CARE chaparral and vitamins A, D and K. zymes may be high if you’re taking medica- OF YOUR LIVER If there’s no indication of liver problems, tions, including some anti-HIV medications, In addition to monitoring HCV disease pro- see your health care provider every six as your liver works overtime to break down gression and liver health by keeping track of months for regular blood work. Be an in- the drugs. Alcohol and some street drugs can the results of the tests discussed above, do formed, willing and active partner in your significantly damage the liver, resulting in in- what you can to avoid stressing your liver any health care. Don’t be afraid to ask questions. creased liver enzyme levels. If your liver is in further. Drink lots of water! Obviously, water The more you know about HCV, the better really bad shape, your enzyme levels may be won’t get rid of HCV, but it’s a relatively sim- treatment decisions you can make for your- normal or low because your liver is too worn ple (and cheap!) way to flush your liver. If you self now and in the future. out. Bottom line: although extremely impor- haven’t already done so, get vaccinated tant, liver enzyme levels don’t offer a com- against hepatitis A and hepatitis B. If you’re plete picture of possible liver damage. HCV-positive, co-infection with hepatitis B James Learned is Director of Treatment Education Viral Load: Also for comparison purposes can speed up liver damage. And getting heat AIDS Community Research Initiative of Amer- over time, get a quantitative HCV viral load, patitis A can be fatal if you already have HCV. ica (ACRIA) and a member of Hepatitis C Action which tells you how much virus is in your Alcohol use increases the risk of cirrhosis & Advocacy Coalition (HAAC). blood. Don’t freak out when you get the re- enormously, so avoid al- sults! Most people with HCV have viral loads cohol if possible, or at in the millions. There’s no comparison be- least limit the amount tween HCV viral loads and those for HIV. A you drink. High doses (over 2,000 mg a day) of HRTI NY Calendar Fall 2002 viral load of one or two million is considered (Courses marked with an * are full day, others are half day) very high in HIV, but the same result with acetaminophen—Tylenol HCV isn’t necessarily considered high. and other non-aspirin Overview of Harm Reduction* Tuesday September 10 There’s little information yet about how spe- pain relievers—can be ex- cific HCV viral load levels relate to the likeli- tremely toxic to the liver. Facilitating Harm Reduction Groups* Thursday September 12 hood of current or future liver damage. And Try to eat a nutritional, Case Management* Friday September 13 HCV levels can fluctuate a lot. So, as with liver balanced diet. Foods with Homophobia and Heterosexism enzymes, don’t make treatment decisions high salt, sugar or fat Awareness Training Tuesday September 17 based only on viral load results. content—such as cheese, Ultrasound Scanning: Some doctors do an pickles, fast food and Self Care (Avoiding Burnout) in the ultrasound (sonogram), which uses sound processed foods—can Harm Reduction Trenches Tuesday September 19 waves to show images of the liver. An ultra- stress your liver. So can Hepatitis A, B, C Friday September 20 shellfish and raw fish. As sound isn’t invasive, but it can’t tell how Harm Reduction with the Hip-Hop Community Tuesday September 24 much damage your liver has suffered either. much as possible, avoid The test is better for detecting abnormalities, exposure to pollutants Domestic Violence* Wednesday September 25 like tumors, than it is for detecting more gen- and chemicals like clean- Understanding the Criminal Justice eralized problems like cirrhosis. It can locate ing products, paint System in New York* Thursday September 26 an obstruction by showing the blood flow in fumes, paint thinners, sol- the blood vessels of the liver. Your doctor vents, spray adhesives, in- Harm Reduction with HIV+ and At-Risk Users* Friday September 27 might use ultrasound as a guide when insert- sect sprays and other Group Work with Street Youth Tuesday October 1 ing the needle for a biopsy. aerosol sources. When Motivational Interviewing Wednesday October 2 Liver Biopsy: This is currently the best way you breathe in the toxins to measure the degree of liver damage. A in these substances or ab- LGBT: Sexuality and Diversity* Tues.-Wed. October 8-9 liver biopsy is an outpatient procedure that sorb them through your Outreach to Sex and Body Workers Thursday October 10 skin, your liver has to just takes a few minutes while you’re awake. Drug Use Management* Friday October 11 A needle is inserted through your abdomen, break them down, adding just below your right ribs, into your liver, and further stress. Boundary Issues for Service Providers* Wednesday October 15 a small tissue sample is taken out and exam- Many people use cer- Women, Drug Use and HIV* Thursday October 16 ined. It’s used to measure the degree of liver tain herbs and supple- inflammation and scarring. Liver biopsy can ments to cleanse the liver. Drugs and Booze: A Basic Pharmacology Wednesday October 17 be repeated to assess disease progression over Those that are most com- Counseling Active Drug Users* Friday October 18 time and is particularly important if you’re monly used and have the Managing Day-to-Day Crises on the Job* Tuesday October 22 considering treatment. most data include milk Genotype: describes the genetic make-up thistle (silymarin), astra- Intermediate Harm Reduction* Wed.-Thurs. October 23-24 of your strain of HCV. Of the three main galus, dandelion, bupleu- Working with Youth* Tuesday October 29 HCV genotypes (1, 2 and 3), genotype 1 is rum, garlic, licorice root, Wellness Workshop* Wednesday October 30 the most common in the U.S., accounting for vitamin E, artichoke, about three-quarters of infections. Unfortu- thioctic (alpha-lipoic) Successfully Housing Substance Users Thursday October 31 nately, it’s also the genotype least likely to re- acid and ginko biloba. Of

37 behaviors to be the goal of intervention, or Case illustrations are an objective on the path towards self-actual- provided within each ization, this book will offer experienced clin- chapter and Dr. B icians—as well as service providers who are Tatarsky provides com- ook relatively new to the field—an array of help- mentary on each case ful approaches. Because harm reduction is and mode of interven- meta-theoretical, providers can embrace and tion. This approach Review utilize a range of methodologies that may be provides consistency adopted to meet the needs of the client or throughout the book The new book, Harm Reduction Psychotherapy. consumer of services. The authors who have that is often lacking in A New Treatment for Drug and Alcohol Problems, contributed to this book embrace a variety of other edited works. makes an outstanding contribution to the these: traditional psychoanalysis, psychody- This reviewer was growing body of literature on harm reduc- namic, cognitive-behavioral, ego-psychology especially pleased to tion and harm reduction practices. Edited by and existential and humanistic psychology. see that group work Dr. Andrew Tatarsky, current chairperson of This is wonderful for the reader who may was addressed, given that so much of agency- Mental Health Professionals in Harm Reduc- be drawn to a particular theoretical orienta- based practice, especially in the chemical tion, it presents a broad range of issues that tion because of training or affinity. It's also an dependency field, is based on group ap- human services professionals may be likely to opportunity for readers who may be less fa- proaches. There are two chapters on harm encounter while working with substance- miliar with some of these theories and their reduction groups that address residential and using clients, and offers suggestions for ef- practical applications to gain insights into outpatient models, one written by Dr. Barbara fective intervention strategies. how to integrate them into their own work. Wallace and one written by Jeannie Little; Because harm reduction is a paradigm There is a downside to this approach, both are outstanding, as are all of the chap- shift away from the “cookie cutter” or “one though. In some cases, harm reduction may ters in this exciting new book. size fits all” approach to drug use inter- come across as an additive rather than inte- A limitation for some readers may be that, vention, a point that is made consistently grative approach; that is, something that can consistent with the title, the book focuses on throughout the book, there is no single in- be simply added to traditional interventions drug and alcohol problems and therefore pro- tervention that can be consistently applied rather than recognized as a fully conceptual- ceeds from a deficit model, rather than from across the continuum of drug use, from ized strategy in its own right. an alternative strengths perspective. However, experimentation to severe and persistent Each chapter is authored or co-authored this critique in no way detracts from the chemical dependency, or across the pharma- by experienced clinicians and this “practice book’s substance; readers from across disci- copoeia of licit or illicit substances. This book wisdom” is quite evident. The authors repre- plines and treatment or service settings will invites the reader to accompany the authors sent a variety of disciplines, including psy- find the information practical and enlighten- on a journey through wonderful case exam- chology, social work and psychiatry, and their ing. It is essential reading for everyone inter- ples, thereby enlightening service providers, backgrounds include program manage- ested in furthering the practice of harm regardless of practice settings, on effective ment, education, training and independent reduction. interventions. practice. Specific modalities of intervention, Whether one considers the reduction of notably individual and group, are also pre- Don McVinney is the Harm Reduction Coalition’s drug-related harm or harmful drug-related sented. The book is quite nicely structured. National Director of Education and Training.

Letters, continued from page 3 to other tenants.” The action against Rucker had nothing to do with her grand- detail, I do want to point out that the mistake changes nothing in the analysis of son (as far as I am aware, she doesn’t even have one), and nothing to do with the case, especially because the decision is as much about Lee and Hill as it marijuana. was about Rucker. And a sidenote to the fact that the Housing Authority ulti- I agree with Corinne’s main argument. However, she fails to point out that mately settled with Rucker (which is a little different from outright dropping the the Housing Authority by law is provided with discretion in these matters, and case), many of us (lawyers who do these kinds of cases) believe that the Oak- IN THIS CASE, clearly used it. There is no evidence whatsoever (and none land Housing Authority would not have settled were it not for the case. Their presented by Carey) that “thousands of families will lose their government-sub- exercise of discretion in settling Rucker’s case was very strategic and very time- sidized housing.” If there was such evidence, you would have done us a great ly. How could the justices say the policy was applied unfairly and irrationally if service by presenting it. the Housing Authority actually let one of the named plaintiffs stay? Please—a little more fact-checking before publication. Thanks! 2. My comments about what the likely results of Rucker will be are predic- —David H. Albert, Washington State tions. Of course I have no numbers to show you. What I relied upon, however, were the comments made in the national media by Public Housing Authority Corrine Carey Responds: staff about “aggressively” pursuing these cases post-Rucker, my own observa- Thank you for your recent comments to HRC regarding the Harm Reduction tions of the increase in actual cases of eviction of “innocent” family members Communication. With regard to some of the facts in the article that you point to (at my agency and others in New York City), my discussions with other hous- as inaccurate: ing advocates and the simple fact that while the HUD regulations may have 1. There were four plaintiffs in the Rucker case. You are correct that Pearlie been on the books since 1988 (and then significantly expanded in 1996), Rucker (not Darlene) was subject to eviction proceedings as a result of her Housing Authorities did not pursue evictions of family members who clearly (mentally disabled) daughter’s possession of crack cocaine and a pipe 3 had no knowledge of the drug-related activities of a household member. It sim- blocks from Rucker’s apartment. Unfortunately, I mismatched the plaintiffs with ply wasn’t happening. Rucker drastically changed the standard. Across the the offenders, as two of the other plaintiffs were Willie Lee (71) and Barbara country, tenants were successfully arguing an “innocent tenant” defense in the Hill (63), both grandmothers whose grandsons were caught smoking mari- few cases that were being brought. No longer. Perhaps your local housing au- juana outside of the projects, the offenses which served as the bases of Lee’s thority’s policies have not changed; that certainly may be the case. and Hill’s evictions. I will make sure to correct this point in the next issue of the Again, I thank you for your attention to detail, and I hope that my clarifi- Communication. (Ed: Correction noted!) While I appreciate your attention to cations are helpful to you.

38 An Herbal Approach to Managing Hepatitis C by Donna Odierna HERBAL ALLIES FOR PEOPLE LIVING WITH HEPATITIS C SCHIZANDRA REFRESHER: Place 1 tablespoon of schizandra W Many people living with Hepatitis C use holistic, alternative and com- berries in a quart bottle of spring water. Sip from the bottle throughout plementary therapies to improve health and quality of life. Many find the day, refilling the bottle when empty. At the end of the day, discard themselves enjoying the best health of their adult lives. Herbal medi- the used berries, and start fresh the next morning. Tangy and re- cine has much to offer. There are many systems of herbal medicine freshing. Supports liver, lungs and kidneys in removal of toxins from (Traditional Chinese Medicine, Ayurveda, Kampo, Tibetan and oth- the blood. I ers). What follows is a collection of suggestions from the perspective IMMUNE POWER SOUP: 4-6 dry shiitake mushrooms, 4 large slices of modern western herbal medicine. astragalus root, 2 small slices cultivated American white ginseng root, Some herbs, like dandelion, milk thistle, burdock and lemon balm, 6 whole cloves garlic, several slices of fresh ginger root, 1 cayenne are nontoxic and can benefit almost anyone with HCV. Some herbs, pepper. Add the herbs to 2 quarts of water or broth, along with any T though, are much better for some people than for others, should be vegetables that strike your fancy (or use bouillon cubes or plain taken only for short periods or are toxic in high doses. Always re- water). Bring to a boil, lower heat, simmer at least 45 min. Strain, search any herbs you are thinking of taking, and check with an drink broth, eat the shiitakes. For extra “oomph,” place a clove of fine- herbalist if you have any questions. ly chopped garlic in a tablespoon of olive oil, let stand at least 10 minutes, add to soup when it is done. Other possible last-minute ad- C GENERAL HERBAL SUPPORT ditions: 2 tablespoons flax seeds, 3-8 tablespoons of miso (depend- MILK THISTLE (Silybum marianum), seeds, 1-3 tsp. or as standard- ing on variety). Have this several times a week. Extra benefit: keeps ized Silymarin 80%, 200mg, three times a day. Milk thistle’s “active colds and flu at bay! constituent,” Silymarin, is actually a hepato-protective flavonoid complex. The seeds themselves also contain beneficial fiber and essen- HERB CAUTIONS H Warnings about specific herbs and herbs in general may be found tial fatty acids. Milk thistle is non-toxic, and safe for long-term use. Many people who take milk thistle find that their ALT levels are re- in most books about hepatitis C, on hepatitis C web sites and in many duced, and sometimes return to normal. Because ALT levels are one doctors’ offices. Some of these warnings are clearly based on weak of the many items doctors monitor to gauge the success of HCV med- theory and speculation, others on clinical data and common sense. E ical treatments, it is important to tell your doctor if you are using milk Skullcap is on nearly every warning list, not because of its effects, but thistle or other herbs. because it has sometimes been adulterated with hepato-toxic germander. It is clear that we should be using high quality, correctly iden- DANDELION ROOT (Taraxacum officinale), #00 capsules, 2-4 cap- tified herbs, and that HCV patients need to get their herbs from sules 3-4 times a day. Use when liver is inflamed, or under stress from impeccable sources. Also, pregnancy and many medical conditions S’ solvent use, drinking, etc. Indications for use: constipation, light-col- require special caution when using herbs and medications. Check ored stools, poor digestion of fats, jaundice, soreness or swelling of with your health care provider and your herbalist. That said, the fol- the liver. lowing herbs should be avoided when working with HCV patients— or used with caution only by people who understand them: IMMUNE TONICS Herbs that contain hepato-toxic pyrolizidine alkaloids, which can A strong immune system is thought to be crucial in limiting viral repli- cause veno- occlusive liver disease, a rare but potentially fatal con- cation and liver damage. Immune tonics can be incorporated into dition: Comfrey (Symphytum officinale), Coltsfoot (Tussilago farara), daily routines as ingredients in foods, soups and teas. Herbs that sup- most Senicio species, etc. port immune responses include: Shiitake mushrooms (Lentenula edu- Other possibly dangerous herbs: Chaparral (larrea tridentata), ma B lus), elderberry (Sanbuccus nigra), astragalus (Astragalus huang (Ephedra Vulgaris), Aristolochia species (Snakeroot, Indian membranaceous) and antivirals such as Lemon balm and garlic. root). The FDA recommends that these herbs not be sold for internal use. ALTERATIVES Herbs that may be useful for some people, and dangerous for others: These are herbs that cause gradual and deep change, improving the Licorice root, Bupleurum (American Bupleurum , Thoroughwax), Lo- R matium (Leptotaenia, Biscuit Root), Isatis, and others. Check with an body’s ability to detoxify: Red clover (Trifolium pratense), burdock (Arctium spp.), nettles (Urtica dioica), etc. These are especially im- herbalist before using these. portant for long-term strategies and for people recovering from drug Until further research is conducted, it is advisable to avoid using St. therapies (or from drug addiction). It is helpful to change these sea- Johnswort if you take protease inhibitors, or certain other prescription E sonally and/or to choose an alterative that is a good “fit.” Burdock drugs, including methadone. Check with your medical provider and is great in the fall, and for people with skin conditions; it builds and a trained herbalist. strengthens. Red clover is calming, and it gently corrects many of the hormonal imbalances women experience after using birth control AND DON’T FORGET pills or opiates—and while in menopause. Nettles helps the body in Diet is a very important part of HCV management. Herbs won’t W times of stress and exhaustion, supplying a deep energy to the whole work as well if nutritional intake is inadequate—or if the foods that system. These should be drunk as tea, 2-4 cups a day, for up to three are eaten stress the liver. months at a time. And burdock root is delicious in soups and stews Exercise, massage, saunas, energy work, acupuncture, breathwork (look for “gobo root” in Asian markets). and meditation lend themselves to detoxification, relaxation, increased energy and optimal health. SOME FAVORITE HERBAL BREWS FOR LIVER HEALTH Gradual change is the key to long-term change; HCV is a chronic LIVER LOVIN’ TEA: 2 parts burdock, 1 part dandelion root and leaf, 1 condition that most patients will live with for decades. Slowly add 1 part schizandra, ⁄4 part licorice root. (Do not use licorice root if you liver-healthy changes into your daily routines, so they become easy to have high blood pressure, or if you tend to retain fluids). Place 1 ounce live with for the rest of a long, healthy life. tea mix and 5 cups cold water in a non-reactive (made of something other than aluminum: aluminum can react with what you’re heating) pan. Slowly heat to simmering, then simmer for 10 minutes and remove Donna Odierna is a herbalist, nutritionist and health educator. She currently from heat. Let sit until lukewarm, strain and drink throughout the day. balances her time between private practice in Oakland and the Public Health Make a fresh batch every day. Supports digestion and liver function. doctoral program at UC, Berkeley.

39 NON-PROFIT ORG. U.S. POSTAGE PAID Harm Reduction Coalition PERMIT NO. 569 22 West 27th Street NEW YORK, NY 5th Floor New York, NY 10001

Harm Reduction Conference I December 1 – 4, 2002 Taking Drug Users

National SERIOUSLY th 4 Harm Reduction Conference Co-Sponsors harm reduction (harm ri•duk'shen) Seattle-King County Department of Public Health I The Addictive Behaviors Research Center and The Alcohol 1. Modality of working with and Drug Abuse Institute at the University of WA I Street Outreach Services I Frontline Hepatitis Awareness I Home Alive I Lifelong AIDS Alliance I Point Defiance AIDS Project individuals and communities to I Blue Mountain Heart to Heart I Evergreen Treatment Services I The BABES Network I North American Syringe minimize adverse consequences of Exchange Network I Housing Works I National AIDS Fund I National Alliance of State and Territorial AIDS Directors I Critical Resistance I November Coalition I International drug use. e.g. Overdose prevention, Harm Reduction Association I International Women and Drugs Network I National Minority AIDS Council I AIDS syringe access, healthcare especially Action I National AIDS Treatment Advocacy Project I People of Color Against AIDS Network I Latino Commission for HIV, hepatitis and mental health on AIDS I HIV Center for Clinical & Behavioral Studies/NYS I Canadian Harm Reduction Network I Vancouver Area Network of Drug Users I DanceSafe I Family Justice, Inc. needs, drug law reform including I Danzine I Harm Reduction Project I Advocates for Recovery Through Medicine I National Alliance of Methadone prison reform, housing, and drug Advocates I Caribbean Harm Reduction Coalition I Drug Policy Alliance I Common Sense for Drug Policy I The Center treatment options. 2. A movement for Health Policy Development I Hepatitis C Support Project I American Liver Foundation I Hepatitis Education Project I Major Donors: Agouron I American Foundation for AIDS for social justice. Research I Bristol Myers Squibb Virology I Ford Foundation I Red Hot Organization I Roche

Keynote Speaker Former US Surgeon General December 1– 4, 2002 The Sheraton Seattle Hotel and Towers Dr. Joycelyn Elders 1400 Sixth Avenue at Pike Street, Seattle,Washington 98101 Taking Drug Users Taking SERIOUSLY