Fucked-Up Models of AIDS Prevention
Plenary Speech by Donald Grove, March 22, 1997
ACT UP 10 Year Anniversary AIDS Activist Conference
Dedications: Living: Loretta "Sweetliff" Dudley, Richard Harris. Dead: Fred Gottbetter, Sherri Humm, Linda Edwards, "Ace", "Pearl", Jerry Baer, Ben Agosto, Jose Rivera, Sam Smith, Ron Zattler. Missing: Ricky Weiss
"I have been a drug user since I was
thirteen. Like most people with a history of chronic abuse, I
shift between abstinence and use and my life ain't over yet.
"My comments today are going to focus on the future of AIDS activism as it relates to issues for drug injectors.
Anyone who thinks that the current New York State Needle Exchange programs can stop the spread of AIDS is delusional or misinformed. Users need sterile works but New York State has no genuine initiative, and there are no plans to build on what we have. Current efforts have made inconsistent contact with about 1 out of 5 injectors in New York, and provide these people with inadequate numbers of syringes, and virtually no useful access to disposal, except under highly restricted conditions at Needle Exchange Programs. In fact, the current model of one-for-one exchange is seriously flawed, and the State is showing very little response to the problems the model creates. I will talk more about this in a moment.
The only accepted social response to drug injectors is intense hostility. Before we had "drug treatment" non-injectors said "What are WE going to do about THEM?" Any solution identified drug injectors as dangerous criminals who needed to be controlled for the good of"good people". After "drug treatment", some people changes what they said to "What are WE going to do for THEM". Some people here today may think that was the correct, but it wasn't. The change was small, from controlling criminals for the good of good people to controlling criminals for their own good. The cherished notion that drug injectors are criminals to be controlled was not changed. And no solution to the problem ever included the point of view the injectors.
This is precisely the failure of one-for-one model for exchange of syringes. Drug users and drug use were left out of it. Look at history. What was the first response to the spread of HIV among people who shared works? Drug users must be sharing works because they like to. A lot of shit was said about how syringe sharing was a kind of bonding ritual between crminals bent on their own destruction.
Needle Exchange programs have been successful in changing this misunderstanding. Drug injectors are perfectly willing to use clean works when they have them. No one wants to use someone else's set. But they do want to get off. Restricted access to clean works has resulted in widespread sharing of used works. Restricted access has not resulted in reduced drug use. Anyone who was hoping that AIDS would kill all the junkies was mistaken. Anyone who thinks that the spread of deadly viruses can have a benign social effect is out their stinking, puny mind.
So what is wrong with Needle Exchange
the way we do it?
It is this exchange shit. A participant coming to a program is allowed one sterile syringe for each used syringe they return. The system recognizes that new syringes have a value for injectors, but that value is used to force injectors dispose of their used works at specific locations. The system assumes that their are adequate numbers of syringes already available to drug injectors, so one-for-one exchange is all that is necesary, although the constant sharing of the few syringes available suggests the opposite.
NEPs ask drug users to save and carry around their used injection equipment, and we want them to take it all out for us and count it, so that we can make sure we don't give them too many new ones. Does this sound crazy? Don't we want them to have new ones. Here are people who have already shown that they will reuse syringes if they DON'T have new ones. But we want them to hold onto their used stuff, and make it readily available for counting.
The reason this won't work: Needle Exchange Programs don't practice sterile injection. Drug injectors practice sterile injection. It doesn't matter how many programs you create. They won't prevent shit if injectors still have sevaely restricted access to injection equipment and disposal.
Its really about hygiene, but people don't think of hygiene, which is a good thing, being related to shooting drugs, which they say is a bad thing. The standard for any doctor is to use a syringe once, and then dispose of it immediately. We don't say this for people who shoot drugs. We say: Save that used set! ! Just don't let anyone use it again, even if no ones got more. No one ever bothered to talk to them. The way the current system is set up, no one ever has to hear what they have to say. When they walk in our doors, we are required to say things to them: tell them to use each set once, tell them to use a condom, tell them a whole lot of shit. But when it comes to "Are we giving you enough sets?", that is a question we don't ask. Why not? If someone isn't getting enough sets, they are going to reuse them, or reuse someone else's. We also don't ask if they have a safe place to shoot up, or whether their johns pay more if they don't use a condom.
Here's the truth: based on research (they DO the research, they just don't share the answers) anyone getting works from a Needle Exchange probably has to reuse each set at least 4 times. Even so, Needle Exchange has helped some people to stop sharing. But what happenned was we gave people an inch, and they made a mile with it. Now lets give them a mile and stop the epidemic.
Then there is the bleach. We provide bleach and water to whoever needs it. But it seems to me that if someone picks up a bottle of bleach at my program, they might as well wear a sign which says "I am going to reuse my sets or someone else's" That's why they pick the bleach up. We also provide cookers and alcohol pads. When someone picks up 40 alcohol pads and 15 cookers and a couple bottles of bleach, but only has gets five sets of works because of a low return rate, I think that the one for one model of exchange need to be revisited.
Some people say "But they're addicts. They just want to get over. They just sell the works." I say "That is exactly who I need to reach. That is exactly who is gonna need a clean set when they inject. Just because someone has a racket, because they need money, because they shoot drugs is not a reason to exclude them from HIV prevention efforts." Withholding sterile sets from drug injectors because they may be thieves or con artists is going to continue to cost us lives. Nothing else about the scene has changed. People are gonna boost shit and rob you to get what they need to cop. Does that mean we should allow the virus to spread? That is exactly who we should be reaching. That is exactly who needs a clean set.
So lets talk disposal. If you don't want people to reuse syringes, then you gotta get rid of them. The best model for hygiene is to have disposal right there, where I inject, so that I can get rid of my set immediately after I use it. Then its not available to share. Instead, we have a few Needle Exchange Programs, spread out over a large area. If you don't carry around your works and get rid of them at the Exchange, you don't get more. No one stops to think: a drug injector might be doing the right thing if they get rid of used their used works to protect children, or loved ones, or themselves. We want them to save all their used works and carry them around, but we don't want them to share them with other people, who ALSO don't have access to sterile syringes. Insanity.
What Exchange offers to people who can't save their works is just exactly what they had before: Restricted access to works and useless access to disposal. No wonder we only reach 1 out of 5.
Who came up with this shit? Not the NEPs. This was imposed on us. It is generally agreed by the NEPs that unrestricted access to sterile syringes and hygenic waste disposal will prevent the reuse of sterile syringes. Give people what they ask for and provide them with the means to dispose of it.
Why am I saying this now, here? Because if people want to know what the future of AIDS activism looks like, you need to hear this. The people who started Needle Exchange here have accomplished a lot, but we are also stuck with a limited model which doesn't allow the injector to identify their needs. So they keep sharing and we look the other way. Their needs are identified by the program by how many used works they feel comfortable toting around the streets of the Lower East Side or Harlem or Morrisania in the Bronx.
The State needs to be attacked for this. The State won't really do Needle Exchange right, because they are still afraid. They are still not sure that AIDS prevention is a good thing. Force it from them.
But first we need to look at the problem within ourselves. What is this Us and Them mentality about drug use? Many of us are drug users, recovering or not, and many of us know and love someone who uses. But we allow this kind of shit, this one-for-one shit to pass by without even questioning it. Maybe even saying its good. And when the issue of lives saved is brought up, people think we are doing "junkies" a favor by saving their lives, as though they were ours to take. Naturally, this is a typical racist ploy, the Great White Father tosses the little brown brother another scrap, and suburbia applauds.
Face it. Injectors are saving their own lives when they use clean needles. The role of non-injectors is to remove the barriers which were put there in the first place.
This is my City. This is my State. Anyone here who is injecting with a clean set of works isn't just doing themselves a favor, they are doing me a favor. They are doing everyone a favor. So lets cut out this "us and them" shit. We are all here together, and some of us use. We do this for ourselves. Trying to make it happen any other way will just give you fucked up models and waste precious time and lives.
Issue Number Two: Housing
HOPWA, the primary source of funding for Housing for people with AIDS, requires abstinence from substance use for its clients. Change that. People with AIDS need housing, whether they are active users or not. The changing face of AIDS is gonna be about homelessness, especially with drug testing for welfare recipients coming down the pike. End of discussion.
Issue Number Three:
AIDS Care and Treatment and AIDS as social Blackmail
What is the future of AIDS activism? What is the changing face of AIDS? For me, it is a process of constant re-education. I was taught on the knee of ACT UP. Homophobia was used as the primary reason for the entire nation to ignore AIDS. After 10 years of wildfire epidemic, in 1991 George Bush was still very comfortable saying "This wouldn't be a problem if people would change their behavior". The message was, be straight or die The gay or queer community did not tolerate this mode of thinking. Our sickness and our death could not be used as blackmail to make us straight. Sexuality was not the cause of the epidemic. It was a virus.
But now, in 1997, New York City's supplemental Ryan White application, we read the following: "Drug use is incompatible with the stable, organized life patterns that can preserve health and quality of life for HIV infected people." What a stinking racist lie. What this means is that Ryan White dollars can be used to support health services for people with AIDS as long as they are not using drugs. This plays out down to really deep levels of hostility against large numbas of People with AIDS who DO use drugs. Abstinence based drug treatmant, the only existing model allowed in our country, is only effective for about 10% of the drug using population. This means that the majority of people with AIDS infected through unsanitary drug injection will not have improved access to any health services.
Blackmail. Your body and the battle you are fighting with the virus will be used to force you to change.
Although the City reports a drop in the AIDS death rate, it still has not provided much information on which communities have benefitted from this decline. NYC would show the same pattern as other cities affected by AIDS: the decline is really mostly among white gay men. Another thing I learned from ACT UP is that we are all members of communities, and how our community fits into the larger city is a major component of how we live or die. When AZT was all the rage, it began to look as though it might actually be contributing to mortality among men of color, but then the studies came out which showed that it wasn't AZT which was lethal, it was the shitty health care which existed for people of color in their communities.
How does this play out in the Ryan White Title I application? The dollars focus on providing care to People With AIDS, when it is clear that entire communities are suffering from inadequate access to healthcare, and the overall shitty care is affecting the mortality of People With AIDS. People in need of medical care are treated like thieves just for being sick.
1. People with AIDS in communities of color will still die, no matter how much money is targetted for AIDS specific services, unless the general quality of healthcare for everyone is improved.
2. The money won't go to those communities anyway if the people are using. The money will be used selectively, provided to "good" people with AIDS, and not available to "bad" people with AIDS. Overall health issues for the community are masked by the hysteria of the War on Drugs.
AIDS as blackmail.
Huge amounts of power are located where the money is. And the money, even AIDS money, is funding the system which makes drug injectors criminals, although they are the majority. The dollars which fund drug treatment and law enforcement are spent in ways, which identify substance users as the enemy as a matter of policy.
The future of AIDS activism lies in confronting the power structures which turn substance users into pariahs and criminals.
In the meantime, without any scientific data to support it, many health provoders don't prescribe protease inhibitors to people who appear to be active in their substance use, on the premise that poor compliance with prescribed regimens will result in Multiple-Drug Resistant HIV. How does this play out? If you are a person of color with AIDS, if you have a prison record or a drug treatment record, a doctor is welcomed to make judgments about your character and what kind of healthcare you deserve. Make no mistake about it, skin color will be the biggest factor. Reports back from some people at Beth Israel are that white people on US HealthCare are on Protease, black people aren't.
I think the problem is best summed up by one salesperson from Abbott Labs, which makes the protease inhibitor with the highest incidence of toxicity, Norvir. When I discussed the problem of regimen compliance with her, while she admitted that she did not personally know any people with AIDS, she said "If you don't want to follow the regimen, there are plenty of people out there who do."
AIDS is now a bargaining chip. Your health condition can be used as blackmail. If you don't do what we want, then go ahead and die. And we mean die in the street.
I want to stress two things here. There is no evidence that substance use is incompatible with a healthy lifestyle. I will be the first to agree that there is a specific group of substance users whose lives are in chaos driven by chronic substance use. But I don't think that most of the substance users living with AIDS today are at that point. Why? Because I know lots and lots of them. They are housed, many of them are in "treatment" although they still use, and most of them take their health condition very seriously, stubbornly trying to stay well in a system which routinely treats them as unworthy of receiving it. In a system that treats them like shit, like they are stealing health care because they are sick.
I don't need to go very far for examples, because I see fresh new ones on a daily basis. One woman I know got out of the hospital last month after a rough bout with MAI. She is currently receiving DOT tuberculosis therapy at Beth Israel Hospital in Lower Manhattan, although she lives in Brooklyn. Three times a week, she comes into the City to stand in front of a nurse and choke down twenty pills. When she raised the issue with program staff that she is currently not well, convalescing from one illness and fearful of another, and that she was also faced with problems regarding the care of her grandchildren, she was told "This is not a drug treatment program. You don't get weekend pickups."
The question that this raises is: Don't we all want this woman to complete her course of treatment? Does it behefit any of us to make it difficult for sick people to access care we need them to receive? This woman is on drug treatment, and may still occasionally use, but she has been 100% compliant with a very demanding regimen of travel, childcare, choking down pills and taking abuse from program staff, all of this while she is sick and convalescing. Just how incompatible is her substance use with health care? How much more compliant does she have to be? And what she was told was against the rules. Naturally, the hospital has rules about treating patients well. But the country also has a constitution, and cops also have rules, but if you are a drug injector, you know about how often they are broken.
My point is this, for the non-injecting AIDS Activist: Don't assume that drug users get the same treatment as everyone else at the clinic or hospital. They don't. And like I said before, if you have a prison record or a drug treatment record, doctors feel very qualified to make a lot of assumptions about you. Just ask them, they are not ashamed to tell you. And that means if you are a PWA, the color of your skin also speaks to the doctor.
Another example is a man I spoke to this week at out NEP. He reported to me that his doctor wants him on Protease Inhibitors. What is the problem? Last time he was at Ryker's Island, they would not provide him with his medication. These are the real issues of compliance. We wage war on drug users with one hand, and them hold back healthcare with the other, saying their lives are incompatible with care. How compliant is anyone going to be when they are in and out of prison? And make no mistake, this is a race issue. When I go down to 100 Center to advocate for program participants facing charges, it is not an ocean of white faces which I walk into. The War on Drugs is a war against communities of color, falsely pretending to eradicate problems which it actually worsens.
And the community of active or former drug injectors living with AIDS is a community created by force. Drug injectors have amply demonstrated that they will use sterile syringes to inject, if they have access to them. The spread of AIDS among drug injectors was allowed to happen, invited to happen. Its happening was positively welcomed by huge numbers of people.
And many AIDS activists are really not interested in including drug injectors issues in their advocacy, even though this will soon be the majority of people with AIDS. Many people in ACT UP applaud the idea of Needle Exchange and say they want more visible self advocacy from drug users, but then say, "But they can't be high if they come to the demo" or "They can't use during the action" or "They can't bring their shit to the action". I really have to ask 'What sort of white picket fence drug users are you looking for? Users who don't use? Users who don't have drugs? Users who won't make us '100k bad", but will make us look inclusive?" You want drug users for their pity-power. Screw you. Drug users use drugs. If you want to advocate for them, or you want them to advocate for themselves, you need to get over this.
The last thing I want to say, we all talk about syringe decrim, and harm reduction this and that. Who talks about legalizing prostitution? I think this is a clear example of who sets the agenda for AIDS activism. The issues of the sex trade are never discussed. We are comfortable discussing advocacy for people whose problems we are comfortable addressing. This doesn't include sex workers, ever. Here is a population which is harassed by everybody, not just cops, but by customers, pimps and socalled managers, drug dealers, community residents, and the entire media and political system. Hating prostitutes is a good way to advance a career in public office. It is a venerable institution. But this is the changing face of AIDS activism, and most people don't even know how to approach it. Because most people want to use pity, not empowerment.
George Bush knew that most people just don't care, so he said Fuck You to people with AIDS (and just about everyone else). Bill Clinton knew that he could make George Bush look mean and himself look good if he said he cared, if he said 'I feel your pain". It also meant that he wouldn't have to do anything at all. All he had to do was say he cared and he was automatically on the "good" side of the fence. Why, because he didn't spit on us? Are we supposed to be grateful when people don't spit on us? Fuck him. He still hasn't done anything. I don't really care whose pain he feels.
But that is why I bring up the example of sex workers. Who is going to lobby for decrim of prostitution? Who is going to lobby for unionizing sex workers? No one. It is not as convenient or as neutral as pity. And are sex workers supposed to be grateful, or call it AIDS activism when we don't spit on them, but just ignore them? Every time a sex worker puts a condom on a john, she or he is an AIDS activist and educator.
So there is your agenda. Fix needle exchange so that drug users can have the sterile syringes we ALL need them to have. Demand that necessary housing and health care for people with AIDS, including protease inhibitors, be made available to users, active or not. But also look at who you are comfortable leaving out of the discussion. There is always someone.
AIDS is being
used as blackmail and most of us aren't talking about it. We are
clinging to "us and them" about drug users, and expecting
them to be grateful when we don't spit on them or kill them and
call that charity and caring.
Plenary Speech by Donald
Lower East Side Needle Exchange, New York City
ACT UP 10 Year Anniversary AIDS Activist Conference March 22, 1997
Mayor's Office Suppressed Report on Needle Exchange
What You Can Do To Help___
Lift The Federal Ban On Funding Syringe Exchange