At the Oakland Convention Center in 1996, the first national conference of the Harm Reduction Coalition opened with an enthusiastic call to action by Allan Clear, the group’s new executive director. A British photographer who had immigrated to New York in the early ’80s, he’d helped found ACT UP’s illegal needle exchange on the Lower East Side—and had headed up that organization as it transitioned into a successful independent nonprofit. Initially a 12-stepper, he’d come to the movement via his own recovery from alcoholism. He was excited by the big turnout.

“This is a historic meeting,” he said. He described HRC’s work, saying that its vision came from people who knew there was an alternative to the maltreatment that marked so much of American drug policy. The group’s goal, he said, was to make harm reduction into national policy for drugs and drug users.

Clear described how isolating it could be to be one of a tiny number of people trying to fight against both AIDS and the drug war. Many attendees had not previously met more than one or two others who shared their views, except perhaps online. Simply being together in one place with hundreds of like-minded people was electric. One of the other organizers of the conference remarked that the team was simply amazed that they’d managed to bring off the event at all. They were astonished that so many people had shown up.

Next to speak was Dave Purchase, the Tacoma needle exchange innovator and co-founder of the working group, which had made the conference and HRC itself possible. After riffing on how hard it could be to define harm reduction concisely, he went on to sum it up in a single sentence. “Harm reduction is against harm, neutral on the use of drugs per se, and in favor of any positive change as defined by the person making the change,” he said.

Cautioning practitioners that they needed to be just as sure to be kind and nonjudgmental to themselves and each other as they aimed to be with their clients, he emphasized the importance of pleasure. “[H]arm reduction—being logical, practical, right and effective—is more enjoyable than following a path that leads nowhere and supporting ‘laws’ of behavior that do not work. Harm reduction is fun, and fun is what I suggest you [have] here.” From the fact that so few people can remember any specific details of the conference, I am certain that many people followed this advice.

Edith Springer’s subsequent talk covered many of her key themes, exploring the difference between the all-or-nothing abstinence approach and the more gradual view of change embodied in harm reduction. She stressed that most current treatment fails to treat patients respectfully. And she emphasized how dangerous this can be, noting that in clinical training, therapists are taught never to try to break down people’s defenses before alternative coping skills are in place. When this is done— as it so frequently is in rehabs and therapeutic communities—she noted, “we run the risk of causing the person to decompensate and become worse off than … he or she was before.”

Imani Woods—whom Springer had described as her most difficult student ever—followed her mentor and teacher up to the podium. She was all-in on harm reduction now, but that didn’t mean she completely disavowed her past.

“I’m here to represent all of us who believe in abstinence,” she began defiantly. “That’s where I come from: abstinence. Years ago, when I would come into a room and hear someone say ‘harm reduction,’ I said, ‘You must be crazy.’”

“I had to ask myself: ‘What about the other 90 percent? What about the 90 percent for whom abstinence didn’t work?’”

Proudly stating that she’d grown up in Bedford-Stuyvesant and citing Malcolm X’s guidance about how it is okay to admit that you have been wrong, she described her previous self. “I was one of those dogmatic counselors, you know, ‘I came up the hard way and so can you.’” When HIV began devastating the Black community, however, she began to question this approach. “What is more important? That people stay alive or that people not use drugs?” she asked. “And then I heard Dave Purchase say, ‘Dead junkies can’t get clean.’”

At the same time, Woods began to examine the outcomes of her own counseling work, recalling how she and her co-workers often told their clients that fewer than one in 10 of them would genuinely succeed at quitting drugs. “I had to ask myself the simple question: “What about the other 90 percent? What about the 90 percent for whom abstinence didn’t work?”

She went on to explain how hard it was, specifically, for people of color to buy in to harm reduction. She noted the actual harmful effects of drugs like crack on families as well as issues of respectability and racist enforcement. She said, “Let’s be realistic. It’s a whole different ballgame when we’re talking about Black folks and Latin folks. Because the effects on the community are different … Our community, we see drugs as a barrier. It keeps us away from all that good stuff like family life, ambition, achievement and so on.” White drug policy reform advocates, in their efforts to distance themselves from drug-war scare tactics, had often minimized this.

Addressing white people specifically, she said, “I must tell you: Y’all use most of the drugs. Y’all just don’t go to jail … we’re the ones who end up going to jail. When you go into the Black community and talk about harm reduction, you got a whole other ball of wax to deal with. All people can tell you is, ‘Reduce this! Reduce these police taking me to jail…’”

Woods ended her talk with a call for unity, noting that there would undoubtedly be many arguments and clashes along the way. “Everybody thinks they’re right, including me,” she said. “With all that, you know it’s going to be a mess. But if we don’t do it, nobody’s gonna do it. Somebody’s got to make the change.”

Other movement stars like Dan Bigg and Joyce Rivera also spoke, and there were sessions related to medical marijuana, which had just been legalized in California and was an issue that could get people who hadn’t really thought about drug policy to recognize how it did harm. Also, at least two high-ranking police officials, from Connecticut and California, spoke, advocating gentler policies like diversion to treatment rather than incarceration. Later, the question of whether law enforcement could ever practice genuine harm reduction would cause conflict. But at first, the movement welcomed all comers and deliberately brought disparate and sometimes clashing views together. To make change, harm reductionists would at the very least have to know how to engage with the mainstream.

Alan Marlatt’s Trojan Horse

[Psychologist] Alan Marlatt’s talk covered his own work with alcohol—highlighting the controversy over whether people with severe alcohol problems can ever learn to moderate or “control” their drinking. This acrimonious debate neatly paralleled the fight for needle exchange for drug injectors. Just as traditional treatment providers had argued that drug injectors couldn’t improve their health without kicking drugs first, they also claimed that no positive change could occur for those with alcoholism without total abstinence. And by showing that alcohol behaves just like other drugs, Marlatt helped dramatically expand the scope of the movement. That’s because, while less than 2 percent of Americans regularly inject drugs, at least 70 percent of the population has had at least one drink in the past year.

Illustrating these parallels to expand the reach of harm reduction was a deliberate strategy. Marlatt knew that “undoing” drugs was essential to the mission: If alcohol isn’t seen as the drug that it is, its many users can easily dismiss “druggies” as some alien group whose experience is completely unlike their own. The spectrum of substance use must be seen in its entirety, so that we can recognize that it is indeed universal, across cultures and time.

Years later, Marlatt would tell his students explicitly that he saw alcohol harm reduction as a Trojan horse: a way to get people to take in the key ideas of the movement without immediately raising their defenses about their implications. He told one postdoc, “When I started doing this work, I had a feeling that harm reduction was the right way forward, but I knew people weren’t ready to hear that message.” And so he worked first on more acceptable approaches. One behavioral therapy that he developed became known as “relapse prevention.” This would, surprisingly, be quite rapidly incorporated into most 12-step/Minnesota Model treatment programs, albeit in somewhat adulterated form. The idea was to understand what experiences might “trigger” relapse and learn ways to manage these risky situations while staying abstinent.

Of course, relapse prevention, by its very name, does not threaten the supremacy of abstinence, since the whole point is to help people maintain it. However, it also includes information on how to minimize damage in the extremely common event of a slip—aka harm reduction.

Marlatt’s support for what became known as “controlled drinking” stirred far more conflict.

In fact, one of its key concepts is the “abstinence violation effect,” or more colloquially, the “fuck it” response. This refers to the idea that once you’ve had one drink or broken your diet or otherwise lapsed, you may as well continue since you’ve already blown it. Research shows that having this belief, especially if you also see yourself as “powerless” once you start engaging in the behavior you are trying to change, leads to more severe relapses. The phenomenon could be seen during the early days of AIDS, when without good information about risk, gay men would alternate between celibacy and sexual extremes. It recurred during COVID, when, again, people with little good information on moderating risk flip from going overboard with measures like double-masking and seeing no one to simply taking no precautions at all.

In contrast to the relatively widespread acceptance of relapse prevention therapy, however, Marlatt’s support for what became known as “controlled drinking” stirred far more conflict. The idea that some addicted people can return to moderation is far more threatening to the core idea of the Minnesota Model, which is that 12-step abstinence is the only—or, at least, the best—way to recover. Both relapse prevention therapy and the controversy over controlled drinking, however, ultimately helped spread harm reduction into whole new areas of addiction research and practice.

At the first harm reduction meeting, Marlatt described the colorful history of the cultural war over controlled drinking. The drama—in which he himself played a part—involved claims of research fraud, Congressional and university investigations, and the firing of a leading treatment doctor who was seen to be on the wrong side. There were arguments over who was to blame for a drunk driving crash that killed two people. At one point, Marlatt even received death threats.

The first round, he explained, took place in the late ’70s and early ’80s. In 1973, two researchers, a husband and wife team, published controversial data on alcohol moderation. Mark and Linda Sobell had found that training people with severe alcoholism to control their drinking led to better life outcomes and functioning, compared with abstinence treatment. And in a three-year follow-up, the results remained consistent: The controlled drinking program was superior.

This, of course, made abstinence supporters crazy and furious. It was simply not supposed to be possible for anyone with alcoholism, especially not severe cases, to cut back rather than abstain—just as people who inject drugs were seen as incapable of reliably using clean needles or moderating their use. Marlatt’s lab research had undermined the idea of “powerlessness after the first drink.” But the Sobells’ work put the terrifying notion into practice with real people who were undergoing addiction treatment. Minnesota Model supporters and many 12-step group members thought that the research simply couldn’t be true.

And so the data and the researchers were attacked in a massive media blitz culminating in a 1983 60 Minutes investigation. A dramatic portion of the show included footage shot at the graves of several of the study’s participants. The expose was based on a 10-year follow-up of the controlled drinking study, conducted by a different set of authors. To top it off, this new research was published in one of the most prestigious journals in the world, Science.

In their media appearances, the follow-up authors revealed that four out of 20 participants in the controlled drinking group had died, a full 20 percent. Before the Science paper was even publicly available, they claimed that the Sobells had faked their previous publications and lied about the positive outcome data for the earlier years of the study. And this deceit, they implied, had been fatal.

“Beyond any reasonable doubt, it’s fraud,” one of them told the New York Times. The actual journal article was more cautious in its claims: Science’s lawyers had almost certainly toned down its shrill language about the Sobells for fear of being sued for libel. Ultimately, whoever made these changes would deserve every bit of their paycheck.

When the truth finally came out, it was shocking, particularly given the zeal with which the Sobells had been attacked.

At first, however, the coverage was positive. Other media proclaimed that Science and 60 Minutes had revealed a deadly scandal, in which the Sobells had essentially killed some of their research participants. AA was right: People with alcoholism could never achieve control over their drinking. Soon the Sobells were subject to a research integrity investigation by their employer. They were also investigated by Congress, because the National Institutes of Health had funded the study. Marlatt, who was a friend of the couple and had been given access to their data during the investigations, stood by them.

And when the truth finally came out, it was shocking, particularly given the zeal with which the Sobells had been attacked. First—and astonishingly, given the journal’s reputation—Science had made a freshman-level research error when it published the attack paper. The article only included 10-year outcome data for the moderate drinking group, not for the control group, who had received typical abstinence treatment. Without 10-year data from the comparison group, the claim that the Sobells had done harm was unsupportable.

In fact, as it turned out, the abstinence group had done even worse. Six of these participants had died, compared to the four who died after the Sobells’ treatment. And all of those who died had also tried abstinence programs after the moderation treatment had failed. Clearly, neither approach had been especially successful in these severe cases. However, the Sobells had not faked anything. All of the investigations exonerated them. They had not been the ones who’d made dishonest claims.

When Marlatt wrote about the controversy in 1983, he noted that of the 22 then-published controlled drinking studies, 21 had found that it worked, producing successful outcomes in around 65 percent of participants who were followed for at least a year. Little of this background had been mentioned in the media. And research since then has only continued to support the idea. Indeed, by 1990, the highly respected Institute on Medicine—in a report that Marlatt coauthored—recommended that alcohol treatment programs across the US expand to include options like moderation. That’s because, even though people with the most severe alcohol problems are less likely to succeed at moderation, most cases of alcohol use disorder do not fall into that category. It’s also because when people choose their own treatment goals, they do better.

Incredibly, however, when the issue came to public attention again in 1995, it replayed almost identically. I had a small role in the resulting skirmish, when I wrote an article for New York magazine that was wildly misinterpreted. Marlatt had tried to calm the media storm that resulted.

My piece had been intended to highlight the progress made by a prominent Minnesota Model program in New York, which had added an evidence-based controlled drinking option for those who didn’t agree to its abstinence approach. Instead, what I actually wrote was ignored and my story was interpreted as having claimed that the program no longer supported abstinence at all. The resulting panicked attention from the New York Times and elsewhere led to the firing of the program’s director, basically for providing therapies supported by the most prominent and respected national experts on the research!

To make the controversy even more intense, around the same time, the woman who had founded a self-help group aimed at teaching controlled drinking, known as Moderation Management, relapsed. She drove drunk and crashed, killing a father and his 12-year-old daughter. When she was arrested, her blood alcohol level was three times the legal limit. Most journalists assumed that the conclusion to be drawn from this catastrophe was self-evident: Surely, here was proof that it was unethical for alcohol treatment and self-help groups to do anything but demand full abstinence.

But again, a big element of the story was simply ignored in most of coverage. The founder of Moderation Management had written explicitly in its literature that if moderation fails, people should go to AA or other abstinence programs instead. And indeed, two months before the crash, she’d started attending AA regularly. As a result, her story could just as easily have been used to illustrate the failure of AA—if that’s how journalists had wanted to play it.

Throughout the ’80s and ’90s, this was the hostile climate harm reductionists faced, whether they were working with alcohol or other drugs. The media reflected the culture—and it was deeply committed to abstinence. When recovery was shown—whether in the news, on stage, in films, on TV—it was almost always via the 12 Steps. Indeed, 12-step programs were so popular in the early ’90s that a major film, The Player, had a storyline about Hollywood producers who didn’t have drinking problems going to AA—because that’s where the deals were being made. Around the same time, New York magazine suggested that AA was so hot that single non-alcoholic women should go there to meet men.

The 1994 suicide of grunge god Kurt Cobain had been immediately preceded by a tough-love intervention.

Celebrities touted the program; when they went to rehab it was Betty Ford or Hazelden or Eric Clapton’s program in the Caribbean, all Minnesota Model. When journalists tried to write or broadcast stories about other approaches, the response of editors was often dismissive or the piece would be played as a contrarian novelty, not exactly to be taken seriously.

Just as journalists tended to see support for the War on Drugs as “objective” because both political parties favored it, the media also tended to reflexively favor 12-step abstinence—again, because alternatives were just not visible to the mainstream. Marlatt helped change that.

Engaging with pop culture, he wrote about how the 1994 suicide of grunge god Kurt Cobain had been immediately preceded by a tough-love intervention, arranged by his then-wife, Courtney Love. Living with chronic pain, Cobain couldn’t face the idea of total abstinence, but quitting all opioids, including methadone, was presented as his only option for recovery. This made him feel even more hopeless. And as the connection between his death and the lack of harm reduction options became clear, Cobain’s record label planned to support a “Come as you are” harm reduction center in his memory, to be led by Marlatt. (Unfortunately, when the company was sold, these plans fell through.)

Further, one of his colleagues noted that Marlatt’s work on college drinking alone “made harm reduction the paradigm in college health”—at least insofar as the counseling they receive. (Campus alcohol policy is another story.) Marlatt’s relapse prevention program was also one of the most important conduits of harm reduction ideas into traditional addiction treatment.

Ram Dass and Questions of Identity

The final speaker at the first harm reduction conference, fittingly, was the psychedelic guru Ram Dass. In his pre-drug life, he’d been known as Richard Alpert and was an assistant professor of psychology at Harvard. Working with Timothy Leary, he’d conducted some of the earliest research on LSD, psilocybin mushrooms and spirituality in the early ’60s.

Critically, Dass helped develop the concept of “set and setting,” which is important in many types of harm reduction. Originally, this was the idea that psychedelic experience is determined not just by a drug’s pharmacological effects, but also by the user’s emotional state and expectations and the cultural and physical environment where the drug is taken. Understanding set and setting is important because it allows people to recognize dangerous situations for psychedelic use and avoid them.

But the concept has also been highly influential beyond hallucinogens, because it turns out to apply to all substances: for example, the effect of alcohol expectations that Marlatt found studying drinking. And within harm reduction, a movement focused specifically on psychedelic drugs developed in conjunction with other organizing, starting in Liverpool and Manchester’s ecstasy rave scene, during the late 1980s and early ’90s.

Dass’s own psychedelic experience, which led him to visit India and become a spiritual leader, had made him intimately familiar with the harms related to the War on Drugs. In his talk, he noted the importance of listening to people who take drugs when setting policy related to them. “I look at harm reduction as relieving the maximum amount of suffering,” he said.

Answering the question “Who speaks for drug users?” would be at least as tricky as trying to redefine addiction and recovery.

Then he went on to make a more subtle but just as important point. Explaining that lack of human and spiritual connection causes much of our pain, he noted that a great deal of this suffering is linked to our attachment to specific identities and the social status we believe we get from them. This attachment can cause serious problems, especially within political movements like harm reduction.

“It’s perfectly fine if you are an administrator to administrate,” he said. “Just don’t get caught in thinking you are an administrator … If you are a junkie, God bless you, but don’t get caught in being a junkie! It’s not interesting enough, there is no role identity which is that interesting.” He added, “If you are recovering, recover, by God, recover! But don’t get caught up in the drama of being a recoverer.”

This wisdom about identity would be greatly needed as harm reduction grew. In order to center people who use drugs, the movement had to come up with a way to determine who could legitimately speak for such people. Was it only people who injected drugs? What about abstinent former users—or those who took psychedelics? A group fighting for the human rights of drug users clearly shouldn’t be dominated by those without drug experience. However, if people’s social status within harm reduction relies on their continued use of dangerous substances, that could also obviously pose problems.

Here was yet another situation in which the concept of drugs had to be deconstructed. Answering the question “Who speaks for drug users?” would be at least as tricky as trying to redefine addiction and recovery.

Top photograph by Rohan Makhecha on Unsplash

UNDOING DRUGS: The Untold Story of Harm Reduction and the Future of Addiction, by Maia Szalavitz. Copyright © 2021. Available from Hachette Go, an imprint of Hachette Book Group, Inc.

The post How Key Early Ideas Helped Shape Today’s Harm Reduction Movement appeared first on Filter.

But Let the Record Show: A Political History of ACT UP New York, 1987-1993 is not only the story of one of the most successful activist groups in American history. The just-published book is also a guide to understanding how ACT UP achieved so much change so quickly—and offers instructions for today’s activists on how to attain similar results.

Founded in New York in 1987, ACT UP still has chapters around the world and is an extraordinary model of activism by people with lived experience.

Schulman, a playwright, novelist, author and the co-founder of the Lesbian Avengers, was a member of ACT UP herself during the period she covers. I spoke with her about ACT UP’s accomplishments and what they can teach us.

Maia Szalavitz: You write early in the book about why some people become activists and others don’t. One of the things that struck me was that so many of them seemed to tell you something like “Well, I couldn’t not do it.” What did you conclude about what makes an activist?

Sarah Schulman: I was interested in, what do these people have in common inside ACT UP? Because they were so different. And at first, I thought, well, maybe they all came from childhoods or families who are community-oriented, but that did not pan out. And then I thought, well, maybe they’d all had particularly transformative experiences with AIDS. But that was not true either.

It’s the kind of person who can’t be a bystander.

People joined who didn’t know anyone who had AIDS. And in year eight, I interviewed Rebecca Cole, who at that time was an apolitical actress who had gotten a job at the AIDS hotline because she needed the money.

And she got a phone call from a woman in Connecticut who couldn’t get into a drug trial, because they didn’t accept women. And when Rebecca called the CDC and made an appointment with them and went with a friend and met with them—well, this is the beginning of the women with AIDS movement.

So, I was like, “Okay, this is a personality type.” I realized that it’s characterological, not experiential. Because of course, there were people with AIDS themselves who never did anything. So, it’s the kind of person who can’t be a bystander.

What would you class as the major successes of ACT UP?

ACT UP forced the Food and Drug Administration to restructure the way drugs were approved so that they would be available to people who needed them, even if they hadn’t gone through the approval process.

ACT UP won a four-year campaign to get the CDC to change the definition of AIDS to include symptoms that affected only women. And this change not only got women benefits, but it allowed women to get into experimental drug trials. Today, every woman with HIV who takes these drugs benefited from that.

ACT UP transformed the way that the world saw people with AIDS.

ACT UP won needle exchange in New York City. They started the movement of housing for homeless people with AIDS. And ACT UP challenged the Catholic Church [New York’s Cardinal O’Connor had inserted his religion into policy debates, opposing sex education in public schools and in particular, a curriculum that accepted LGBTQ rights. He also spoke out against syringe programs and condom distribution].

They also won the acceptance of a campaign called Countdown 18 months that was run by a 17-year-old girl, Garance Franke-Ruta. It restructured how researchers approached AIDS, going from looking for a medication that would cure AIDS to [focusing on] treating opportunistic infections.

And ACT UP transformed the way that the world saw people with AIDS and how they saw queer people and how they saw themselves.

It’s incredible how much ACT UP got done—and the impact it had on people with medical disorders becoming involved with research and treatment of those conditions.

I think [that] originally comes from the feminist women’s health clinic movement of the 1970s. Women were doing self-exams, physical exams, and that probably comes from the illegal abortion network.

And it’s why I say that reproductive rights was very influential [in ACT UP].

Tracy Morgan being arrested at the CDC in Atlanta, Georgia, on January 9, 1990. Allan Clear, who took the photo, was arrested shortly after.

Why do you think needle exchange as an accomplishment of ACT UP was so ignored by the media and by other writers and documentarians?

Everything that ACT UP did was ignored except for treatment activism. Why? Because there’s this idea in America: the John Wayne, the white male hero who triumphs as the individual hero. And drug users are not viewed that way, even though there’s a lot of overlap.

It took a long time to convince the world to stop looking at what category you were in and start looking at your behavior regarding AIDS. They didn’t think that white gay men use needles and they didn’t think that homeless people had gay sex. There were very racist and class-based lines. And that was influential in the way that history was written. 

Yeah, I was absolutely astonished when I set out to write my harm reduction history [Undoing Drugs, to be published on July 27] that no similar book had previously been published. There’s not even a real history of needle exchange. These things get ignored.

One of the things I really liked about your book is that you were also looking at what made ACT UP successful. Please say a bit about that.

There were a lot of things. The central issue, I think, is that ACT UP did not work on a consensus model. That was one of its great contributions. So, if you wanted to do needle exchange, for example, needle exchange was very controversial at the time. You have to understand that David Dinkins was the city’s first Black mayor and he was really afraid of needle exchange, because powerful people [across racial and political lines] opposed it.

The only principle of unity was “direct action to end the AIDS crisis.”

In fact, the first thing he did when he got elected was shut down the city’s experimental exchange program.

That’s right. So you know, ACT UP was always fighting the disease plus City Hall. Still, there were people in ACT UP who were not supportive of needle exchange. But because ACT UP was not a consensus-based movement, it really didn’t matter. Whoever wanted to work on it, could work on it.

The only principle of unity was “direct action to end the AIDS crisis.” So even if people didn’t understand needle exchange, if they didn’t support it, they just simply wouldn’t work on it. There was no mechanism for stopping people from doing things. And that’s very important and a contemporary movement could learn a lot from that.

I think of Occupy Wall Street, which didn’t seem to learn from that.

Well, they didn’t have demands. I mean ACT UP was a reform movement, not a utopian movement. It was made up of people with a terminal disease. They had concrete demands based on the needs of people with AIDS.

I think that concreteness was enormously helpful because they did seek specific things, like “We want treatment for opportunistic infections, not for the virus itself.”

That took a reconceptualization. Because at the beginning Pharma was recycling failed cancer drugs that they had the patents for. And so, everyone was looking for the pill that [eliminated] AIDS. But it took a more sophisticated reconceptualization to see that [because] AIDS is an umbrella term, kind of like cancer. It’s not one thing. And it manifests differently in different people and requires different treatments. And so, going for the opportunistic infections is an evolution of thinking about how to approach AIDS treatment.

And it also kept many people alive long enough for the effective anti-HIV drugs to be invented. What else do you think made ACT UP so successful?

The other factors were direct action—not theory, and not social services. So that was very important. And just the idea of radical democracy, that you have a framework which recognizes that people can only be where they’re at. And this facilitates people responding in a place that makes sense to them, instead of trying to force the homogeneity of analysis or strategy or even language. And that was very crucial.

It always amazed me how many people in ACT UP who were positive lived. And you kind of wonder if the activism itself helped them live longer?

Well, I will say that that’s true for men. Every HIV-positive woman in ACT UP has died. Women had a completely different experience. Women couldn’t get benefits [like housing and Medicaid], they couldn’t get experimental drugs. They were sicker before they were diagnosed. They often came from poverty backgrounds. So, they did not live. But for the most part, people in ACT UP had access to cutting edge information.

Mark Lowe Fisher’s funeral. From left to right: Tim Lunceford, Joy Episalla, BC Craig, Vincent Gagliostro, Scott Morgan, Eric Sawyer (partial). Photographer unknown.

How did ACT UP decide that, basically, if you didn’t agree with something, you didn’t have to do it, but you wouldn’t stop others who wanted to do it.

It was never decided. ACT UP did not theorize itself. And its message just evolved organically and wasn’t debated. ACT UP never said, “Oh, we’re gonna let everyone do what they want to do.” It just happened that way.

It seems that our best approach is a big-tent, radically democratic movement that does not demand conformity.

So many people were sick, so many people in ACT UP died in ACT UP, that the idea of controlling each other seemed like a waste of time. For example, at the beginning, there was a rule that you shouldn’t vote unless you’ve been to three meetings. It was never policed. Or, famously, they would say somebody needs to write a letter to the police commissioner or something. And somebody would say, I’ll do it, and then they would just do it. Nobody would read the letter. It wasn’t this type of micromanaging.

What would you say are the most important things that activists now could learn from ACT UP?

Right now, because so many people are under attack and because of economic inequality and racism, there are huge numbers of people who want profound transformation in this country. It seems that our best approach is a big-tent, radically democratic movement that does not demand conformity. And that people are encouraged to work in like-minded small groups that stand shoulder-to-shoulder with each other in a larger way. I think that any kind of movement that tries to force people to use the same words, or have the same analysis, those movements historically fail.

I guess that can make a lot of people right now nervous because of all this supposed “cancel culture”?

I don’t know. It’s interesting, because, for example, if you look at the St. Patrick’s event in 1989: So ACT UP had voted to do a silent die-in [where people lay on the floor as if dead]. And we went to the cathedral intending to do a silent die-in because that’s what we had negotiated. Then, Michael Petrelis jumped up on a pew and started screaming at Cardinal O’Connor, “You’re killing us, you’re killing us! Stop it, stop it!”

Total chaos ensued. People were screaming. There were dogs. There were police. It was crazy. Afterwards, people were angry with Michael because he had gone against the group. But no one suggested kicking him out of ACT UP. Because we didn’t have a self-concept of being a dominant culture as a group. It was very oppressed people—even white gay men in that period were profoundly oppressed. In order to kick someone out, you have to have a sense of yourself as powerful. But that concept just simply didn’t exist.

The Latino Caucus at the Storm the NIH action on May 21, 1990. Photograph by Dona Ann McAdams.

Another thing that struck me was how the actions were specifically organized, despite sometimes deviating from plans—with marshals and civil disobedience training and legal support.

Well, I do show that direct action historically, really was inherited from the civil rights movement.

I think that a lot of us in ACT UP were born in the ‘60s. We grew up seeing the Black civil rights movement using direct action and nonviolent civil disobedience on television or we saw it in Life magazine. Many of us had families that were involved in those movements.

What did you find in your research that hasn’t received enough attention?

One of the really big scoops in the book is the chapter on Dr. Joseph Sonnabend, who just passed away, unfortunately. Through the Freedom of Information Act, he got the paperwork on the Burroughs Wellcome AZT trial [the first anti-HIV drug marketed]. This was the trial that found that AZT worked, and then made AZT the highest profit-making pharmaceutical in history.

And he shows, by examining the trial, that it did not work, and the trial was corrupt. I think that this is something that should be on the front page of the New York Times. It’s an incredibly important story. 

The Storm the NIH Action on May 21, 1990. From left to right: Mark Bronnenberg, Bill Monahan (obscured), Maria Maggenti, Phil Montana, Heidi Dorow. Far right with sign: Rand Snyder. Front: Tim Powers, Garry Kleinman. Photograph by Dona Ann McAdams.

What did you learn that most surprised you?

When you really tally it, ACT UP was involved with basically every community that was vulnerable at the time. I mean, working with Haitian homeless people in finding housing. On every level, ACT UP was there—and it’s really important to understand that that is not just five guys [who are featured in other books and documentaries on the group].

Movements work in coalition—and that’s crucial information for anybody who wants to make change in America.

Top photograph by Dona Ann McAdams of an ACT UP demonstration at the Waldorf Astoria in 1990. Carrying the coffin is Assotto Saint. 

All photographs are courtesy of Farrar, Straus and Giroux, the publisher of Let the Record Show: A Political History of ACT UP New York, 1987-1993 by Sarah Schulman.

The post What the Incredible Achievements of ACT UP Can Teach Activists Today appeared first on Filter.

But most of these reports and discussions dance around the edges and bureaucratic obstacles to change. Few address the fact that deep systemic change is needed.

I’d like to lay out the rudiments of what would actually help—and which measures matter most.  I’ll start with the most immediately practical and move on to what is needed long-term.

1) Genuinely expand access to medication treatment—yesterday.

We have two drugs that are proven to cut the death rate from opioid addiction by half or more when used long term: methadone and buprenorphine. Anyone who is addicted to opioids and  wants to get even a single dose once should be able to access these medications on demand—in hospitals, doctor’s offices, emergency rooms and syringe exchange programs. Minimal restrictions, for example, to prevent people from getting more than one dose per day, may be justified—but that’s it. No urines or counseling or abstinence from opioids or other substances should be required to get these drugs, just as those barriers are not imposed on people with other disorders who need medication.

Possession and sales of buprenorphine should be decriminalized, as is being done informally in Burlington, Vermont. It’s far better for someone to buy this medication illegally than for them to buy and use heroin or pills likely to be contaminated with fentanyl.  The DEA and state prosecutors also need to stop targeting buprenorphine prescribers, regardless of whether they are providing optimum care. Simple access to the medication saves lives: Get out of the way!

Ultimately, of course, we need to provide access to other medical opioids as well for people with addiction who would otherwise take street drugs. This means hydromorphone (Dilaudid), which has already been studied in Canada and found helpful; injectable methadone, which is used in the UK; and perhaps others so that people can find what works for them. Heroin itself should be made available by prescription, but given the legal obstacles to getting anything (including marijuana!) out of the completely illegal category (Schedule 1) this seems unlikely to be possible soon.

2) Stop forced tapering of pain patients and provide real access to proven alternatives.

In response to the overdose crisis, in 2016 the Centers for Disease Control released a set of guidelines intended to reduce overuse of opioids in the treatment of chronic pain in primary care.  Quite predictably— to anyone who has observed the extreme swings of American opioid policy in the past—these were rapidly “weaponized” as Dr. Stefan Kertesz of the University of Alabama put it in an excellent paper that recently summarized the resulting problems.

No evidence shows benefit from forced taper; some suggests severe harm.

Basically, the guidelines are now seen as the national standard of care—and stepping outside the maximum recommended dosages is viewed as flirting with medical board or even prosecutorial scrutiny, even for specialists. Their recommendations are being applied indiscriminately, with even some cancer and end-of-life patients being denied adequate pain relief.

Simultaneously, afraid of losing their licenses and/or their freedom, many doctors have simply decided to stop prescribing opioids, period. States are also creating rigid policies while insurers and pharmacies are increasingly restricting what they will allow, often citing the guidelines. The result is tens of thousands of patients—many of whom were formerly medically stable—being left in pain, increased disability and withdrawal. Dozens of suicides by pain patients have been reported. People with addictions whose prescriptions are cut are not being helped either. This simply makes their addiction more dangerous by pushing them to street drugs. It is not treatment.

Medical abandonment when a patient is medically stable on opioids or has been caught misusing them is not care. First, reduce harm, rather than causing it. And, please, leave legacy pain patients who are doing well on opioids alone: Provide support if they want to try to taper and suggest taper with support if they aren’t doing well, but don’t force it.

No evidence shows benefit from forced taper; some suggests severe harm. The only realistic way to reduce reliance on opioids for chronic pain—which is still necessary for some patients and will continue to be in the foreseeable future—is to provide effective  alternatives for particular patients that are covered by insurance and actually locally accessible.

Stopping the shift from medical to non-medical opioids caused by this crackdown will save lives and reduce disability.

3) Create a tiered system for addiction medication access.

There are three primary uses of medication treatment: harm reduction, stabilization and ongoing care. Consequently, we need three separate tracks of programming to meet each of these specific needs. States and insurers need to incentivize providers to create this kind of system of care.

For harm reduction, what’s needed is a welcoming place where people can simply get a dose of medication and see some friendly faces. This track is low-threshold and has no requirements of regular participation—but it also provides rapid access and guidance into care for those who decide they do want additional help.

If you are successfully managing any ongoing mental health issues, you don’t need to keep showing up at a clinic.

For stabilization, people who want to put their lives back together need easy access to services that meet their particular needs, such as counseling, medication-friendly peer support, psychiatric care, housing and job training. This track is “medium threshold”—meaning that regular participation is expected and the goal is no use of non-prescribed opioids, but it is flexible and nonjudgmental. For example, in an effective system, non-medical marijuana use would be ignored: Some research says it improves or at least does not worsen outcomes for people taking methadone or buprenorphine for opioid addiction.

After people have been stabilized, however, they will need the third track, which is also a low-threshold approach but does not create risk via unavoidable interaction with people who are still actively addicted. If you have a job and family and are successfully managing any ongoing mental health issues, you don’t need to keep showing up at a clinic or get further counseling.  This track—sometimes called “medical maintenance”—basically requires a once-a-month check-in to get medication via a primary care doctor and ensure all is well.

People will often need to move back and forth between these levels—and ideally, some level of continuity of care would be available. In Vermont, this is provided by a “hub and spoke” system:  People who want intensive services start at the hub and move to a spoke once they are doing well and require less support. If they relapse and need additional care again, they can go back to the hub. Those who aren’t willing or able to stop chaotic drug use receive harm reduction services at syringe exchanges and ER’s. This is one potential model; others should be explored as well.

4) End insurance coverage, Medicaid or other government funding for rehabs and “sober homes” that reject the use of medication; provide no coverage of 12-step focused content.

The idea that people who are stable on medication who are not using additional substances somehow “contaminate” abstinence-focused programs is sheer prejudice. When people are stable on medication, they are indistinguishable from people who are abstinent or who are taking other needed psychiatric medications.

The continuing propagation of anti-medication ideology will be much reduced if we stop paying for it.

While it does make sense to reduce interactions between people with active addiction and those who are early in stable recovery, this does not require banning medication. Instead, it requires managing full relapse (not a single “slip”) with referral to appropriate harm reduction services—not abandonment.

The continuing propagation of anti-medication ideology will be much reduced if we stop paying for it.

And there remains no sensible reason why insurers and governments should pay for self-help people can already get for free, instead of funding effective alternatives (such as cognitive behavioral therapy or motivational enhancement therapy) that do not raise issues related to moral judgment (“character defects”) or the First Amendment.  All humans could probably benefit from moral inventory, making amends and service to others: the problem is making these 12 step practices a requirement to treat the unique badness of all people with addiction, rather than one pathway for social support and growth out of a menu of options..

5) Create and fund a full range of harm reduction services.  

In order to save lives, we need safer consumption spaces (or better yet,  call them “overdose prevention sites”) in areas where drug use and sales are concentrated; syringe exchange programs scaled to meet demand; and increased access to supplies like fentanyl-checking test strips.

We also need shelters and housing, separate from those aimed at stabilization and abstinence, for people who are actively addicted, many of whom are also mentally ill and have symptoms related to severe trauma. When people have safe places to live and to use drugs, they are both much more likely to survive and much more likely to find ways to sustained recovery.

6) Decouple “beds” from treatment.

People with addiction have a wide range of individual needs and institutional “programs” will never be able to meet all of them. Moreover, once a treatment “bed” is labeled as such, it generally becomes more expensive than an ordinary, safe place to stay. “Sober homes” also tend to be based on a 12-step ideology, which is fine for those who find that pathway amenable, but not for those who don’t—and not when that ideology is interpreted to stigmatize and discourage medication use.

The mental health field has recognized that institutionalization is generally harmful.

For most illnesses, medical and psychiatric, people recover better when they can stay in their own home with their friends and family nearby. This can be more complicated in addiction if friends and family are not supportive of recovery, or are actively addicted themselves. But many people with addiction are not in that situation and all will eventually need to manage cues and other sources of stress in the community where they live.

Consequently, “beds” are only really needed for people who are either homeless, living in an unsafe situation or psychiatrically or medically complicated enough to require inpatient medication stabilization. This is not the majority of people with addiction, even with opioid addiction.

The mental health field has recognized that institutionalization is generally harmful and that when needed, should only be used for the shortest possible time. Addiction treatment needs to catch up.

We need a system that provides a menu of individualized options—not residences staffed mainly by non-medical people that charge inpatient hospital care rates.

7) Create an FDA-like system to approve—or reject—psychological and addiction treatments.

For all the problems with psychiatric drugs and their regulation, at least before they are sold they are required to be proven effective with minimal harm—and if harms are later discovered, they can be pulled from the market. The same is not true for talk therapies: Anyone can claim anything is effective and it’s extremely hard to “recall” harmful approaches—like the confrontation and humiliation that are still used in some addiction and teen programs.

If we want evidence-based psychological treatments for addiction and mental illness, we need a much better way of identifying them and making them widely available. While there are obvious First Amendment obstacles to banning forms of speech as therapy, many states have already banned harmful “gay conversion” therapy and there’s a difference between banning common speech and regulating tactics and approaches sold as treatment by professionals.

8) Recognize the implications of polydrug use.

Around half of all addictions—and a similar proportion of overdoses—involve multiple drugs. 

Addiction is not caused by any particular drug. It is caused by people discovering that altering their consciousness in certain ways helps them cope in particular environments—and then continuing to do so after it has become more harmful than helpful. Typically, the most traumatized and severely mentally ill people use many different drugs in many combinations—and when someone’s goal is to obliterate, rather than alter, their consciousness, reducing risk can be challenging.

All services aimed at people with addiction need to consider the needs of polydrug users, while also recognizing that for some, one drug is problematic while another can be managed successfully or even used to reduce harm (e.g., marijuana instead of or in order to reduce opioids).

9) Decriminalize drug possession.

In 2017, according to the latest FBI report, just over 1.6 million people were arrested for drug-law violations, and 85 percent of these arrests were for possession, not sales. Despite legalization in some states, most of these arrests are still for marijuana—and the number of arrests actually rose that year.

The primary purpose of criminalization is to stigmatize drug use … And that stigma, of course, is a huge barrier to getting people into treatment.

While it is difficult to precisely calculate the costs here, according to the ACLU a single marijuana arrest costs $750 (there’s no estimate available for other drug arrests), excluding court and jail costs. Per day, jailing someone costs roughly $85 and if we assume at least 2 days in jail, we get to over $1.2 billion without even counting court costs and costs in lost jobs and other consequences from a criminal record.

Since possession arrests do not deter drug use, raise drug prices or treat addiction, every cent spent this way is wasted. But it’s actually more harmful than that. People arrested and jailed for opioid addiction lose their tolerance and are three-to-five times more likely to overdose after release than if they had not been incarcerated.

Worse, the primary purpose of criminalization is to stigmatize drug use and people who take drugs—if criminalization is to deter people, it must stigmatize. And that stigma, of course, is a huge barrier to getting people into treatment whether for addiction or for overdose; to making treatment more effective; to expanding harm reduction; and basically to everything we need to do to end the crisis.

Criminalization also makes services less user-friendly because so many people are coerced into treatment by legal sanctions. Ending this practice, or at least reducing it, would force providers to do more to attract patients—and the more compassionate and welcoming addiction treatment is, the more effective is.

10) Make universal health care happen.

While having a national health care system in the US once seemed to be a pipe dream, the increasing embrace of “Medicare for all” by Democrats and the fact that majorities now support it in polls means that—providing we survive the current administration—it may soon be possible.

Research shows that states that expanded Medicaid under the ACA (Obamacare) reduced depression and increased access to addiction care. If we really want to fight addiction in the long run, safe, evidence-based care must be available to everyone who needs it.

Photo by Jake Hills on Unsplash

The post Deep Systemic Change: My 10 Steps to Transform Addiction Treatment appeared first on Filter.