Fighting for Space

  At Crosstown Clinic in the Downtown Eastside, long-time heroin addicts receive a fixed dose of the drug from a clean supply that’s regulated by the government.

  Photo: Amanda Siebert / Georgia Straight

  Because the drugs were free, every user enrolled in the NAOMI study could give up the daily hassles they’d been forced into to pay for their addictions. For women, that often meant retiring from sex work. Receiving drugs from a clinic also created a routine point of interaction with doctors and nurses, which led to all sorts of improved health outcomes.

  When the first NAOMI research paper was eventually published in the New England Journal of Medicine, in August 2009, the results were stark. While only 54.1 percent of participants who were given methadone remained in the study for its full term, for those given diacetylmorphine, the retention rate was 87.8 percent. Researchers found the group on diacetylmorphine was sixty-seven percent less likely to use street drugs and participate in other illegal activities. For the methadone group, that number was twenty points lower.67

  For this group of long-time heroin addicts, the NAOMI study found that patients given prescription diacetylmorphine stayed in treatment longer, used less street drugs, committed fewer crimes, and experienced improvements in health and other social indicators such as employment. “Injectable diacetylmorphine was more effective than oral methadone,” the paper concludes. “The fact that patients who received diacetylmorphine had significant improvement in these areas suggests a positive treatment effect beyond a reduction in illicit-drug use or other illegal activities.”

  A second paper, published in the Canadian Medical Association Journal in March 2012, took a look at the NAOMI data from another angle and found benefits for society as a whole. Using a mathematical research model, it calculated that fewer hospital visits incurred by participants and decreased criminal tendencies equated to enough cost savings for a prescription-heroin program to more than pay for itself.68 “Our model indicated that diacetylmorphine would decrease societal costs, largely by reducing costs associated with crime, and would increase both the duration and quality of life of treatment recipients,” it reads.

  But the NAOMI trial was just that, a fixed-term research project. As soon as it ended, Murray and everyone else who had received prescription heroin at the clinic were forced to return to the alleys.

  Murray remembers that it almost killed him. “I was frantic after the program,” he says. “I was back on the street doing a lot of heroin again. The heroin wasn’t working. I was doing a lot of pills—anything to keep the edge off. I went into detox and tried to kick it cold turkey. I went into a treatment house. And then I was back out on the street again. I tried to get serious about not using again, but nothing seemed to work.”

  He acknowledges that everyone who’d participated in NAOMI was told that the trial would end and at that point they would stop receiving heroin from the clinic. “But everybody thought that they wouldn’t actually do that to us,” Murray adds. “They wouldn’t put somebody on a drug, see that it was working, and then snatch it away from them.”

  Ann Livingston heard all of this from Murray as the pair of them drove around British Columbia, holding satellite VANDU meetings and teaching rural communities about harm reduction. During those hours in the car together, Livingston planted an idea in Murray’s head. The Downtown Eastside was buzzing with rumours of a second prescription-heroin study on the way. Livingston said drug users should have a say in how it took shape. More than that, they wanted an exit strategy: a next step that didn’t just return people to the alleys as NOAMI had. The plan Livingston and Murray came up with—really just an idea, at this point—was to eventually transform the study into a sustainable program; they wanted to establish a prescription heroin clinic.

  Murray’s life had improved considerably during the time he received free heroin via NAOMI. He’d found himself a room at one of the Downtown Eastside’s SRO hotels and started volunteering at VANDU, keeping their office open in the evenings after most other services had closed for the day. With Livingston’s encouragement, Murray also founded a group they called the NAOMI Patients Association, or the NPA, for short. (Not to be confused with the Vancouver political party of the same acronym.) His first task: find a second member.

  “Some of them had really gone downhill,” Murray remembers. “Some of them had died.” Murray and Livingston walked the alleys, looking for people he remembered from the clinic and asking other people if they knew the whereabouts of anyone whose name he could recall. Then, once they had found a few, Murray began hosting weekly NPA meetings at VANDU.

  “We did these meetings with a big sheet of paper and wrote down the names of everybody we could remember,” Murray says. “Then the people who came to the meetings suggested other people. It was three or four at the beginning and then five or six and then nine or ten.”

  By January 2011, the NAOMI Patients Association was a group of a few dozen people and had come to agree on what it wanted from the second research project, the Study to Assess Longer-term Opioid Medication Effectiveness, or SALOME, as it was now called. The NPA wanted priority enrollment for former NAOMI participants, social services provided in conjunction with participation, and a way to keep participants on diacetylmorphine after the trial ended. But while the group had a voice, it still wasn’t sure how to make that voice heard. Murray found the answer to that question in a chance encounter on the other side of the country, in Ottawa.

  Susan Boyd was an old friend of Bud Osborn’s who had worked in harm reduction in the Downtown Eastside since the late 1980s. Now she was working with Donald MacPherson, who had retired from his position as the City of Vancouver’s drug policy coordinator and was trying to establish a new national group called the Canadian Drug Policy Coalition. To that end, MacPherson had brought both Boyd and Murray to Ottawa, and there they got talking about how the NAOMI Patients Association could influence the researchers behind SALOME.

  “When we get back home [to Vancouver], maybe I’ll come down to one of your meetings,” Boyd told Murray. She was trained as an academic researcher. Over the next few months, Boyd tutored the NPA and helped them write a paper of their own. “I teach methodology classes and how to do research so I helped facilitate the research that they wanted to do, helped them decide on methods, and the back-and-forth process that we wanted to create.”

  Murray recounts the experience as liberating. He explains that during NAOMI, it felt like the power that researchers exercised over him was absolute. With SALOME, even if he was still a research subject, he wanted a piece of that power. “We wanted to do something different,” he explains. “We wanted to do our own research with Susan as our mentor.”

  The first paper they published is titled, “NAOMI Research Survivors: Experiences and Recommendations.” It describes participants’ experiences with NAOMI in their own words. “The NPA hopes that this Report will guide future research studies and the setting up of permanent heroin and other drug maintenance programs in Canada,” it reads. “Foremost the NPA encourages other groups to engage in creating their own research to tell their stories.”69

  Boyd also gave the NPA a copy of the Helsinki Declaration, an international agreement that governs human research ethics. It reads in part: “At the conclusion of the study, patients entered into the study are entitled to be informed about the outcome of the study and to share any benefits that result from it, for example, access to interventions identified as beneficial in the study or to other appropriate care or benefits.”70

  Murray remembers a light bulb going off: “If a drug works during a trial, they can’t take it away from the people that it was benefiting,” he emphasizes. With the NAOMI Patients Association involved in discussions on SALOME, they wold make sure that didn’t happen again.

  It’s a bit of a coincidence how Eugenia Oviedo-Joekes came to work with drug addicts in the Downtown Eastside. In the early 2000s, she was an academic in her home country of Spain and was feeling like she’
d hit a glass ceiling. She thought it would be a good idea to try to work in an English-speaking country for a few years. The United States was out; she didn’t like the politics there. It eventually came down to the United Kingdom or Canada. “And the UK had a quarantine requirement for my dogs and Canada didn’t,” she recalls. “That’s the reason I came to Canada.”

  When she was still living in Spain, Oviedo-Joekes had repeatedly attempted to contact the principle investigator of the NAOMI trial, Dr Martin Schechter, but he’d not responded. Finally, through a friend of a friend, word reached Schechter that Oviedo-Joekes had relocated to Canada. She had worked on heroin-assisted therapy in Spain, which made her one of the few academics in all of North America with that experience. In 2007, Schechter finally called her up and asked if she would work with him in the Downtown Eastside.

  With SALOME, Oviedo-Joekes took a lead role and sought to apply lessons they had learned from NOAMI. Her office was at St. Paul’s Hospital. In a fifth-floor boardroom there, she met with Scott Harrison, director of HIV/AIDS and urban health at Providence Health Care (a partner of Vancouver Coastal Health that’s not religious but was founded by Catholic nuns). She asked Harrison to work with her on SALOME. He agreed, on one condition: “The first thing we do, as soon as we start a clinical trial, is put all of our efforts toward expansion,” Harrison said. It was exactly what Oviedo-Joekes wanted to hear. She recalls being devastated when she and her fellow researchers had to tell each NAOMI participant that they could no longer visit the clinic for prescription heroin and that they would have to return to dealers on the street.

  “There is a saying in Spanish,” she remembers telling Schechter. “The surgery has been a success, but the patient is dead.”

  “That’s how I felt,” Oviedo-Joekes says. “There was no joy in publishing in the New England Journal of Medicine. There was no joy at all.”

  Now, Harrison, a higher-up in the health authority, told her that with SALOME, they would find a way to save the patient. Next, they needed a physician.

  Dr Scott MacDonald was brought onto the NAOMI trial not long after Schechter got it off the ground. He says that the benefits of diacetylmorphine had become clear to him and, like Oviedo-Joekes, was distraught when they had to tell patients it would no longer be available to them. “I remember one guy who did really well in NAOMI,” MacDonald recalls. “He was tall, with a white beard, long white hair, [and] had been in and out of jail a few times.” With NAOMI, MacDonald put him on prescription heroin and the man stopped getting into trouble with police. Then the trial ended. MacDonald continued to see him as a patient, prescribing him methadone. The man took it, but it never worked to supress his cravings for opioids. He continued to buy from dealers. “And then, on one of his relapses, he died of an overdose,” MacDonald says. “If he had had access to diacetylmorphine, he would still be alive.”

  The doctor was on board. The next step was patient recruitment.

  MacDonald explains how it is more difficult to give people free heroin than one might think. “The medical model for recruitment will not work,” he says. “You cannot just open up an office with a sign that says ‘Free heroin’ and expect people to come in. People trust their dealers more than they trust the medical system. They have been traumatized by the medical system, almost universally. We assumed, in NAOMI and SALOME, that recruitment would be easier. But it wasn’t.”

  Although not officially involved with the SALOME heroin clinic—which by now was named Crosstown Clinic—Mark Townsend and Dean Wilson helped behind the scenes. Wilson was connected to the streets, and Townsend had the Portland’s hundreds of hotel tenants, many of whom were long-time heroin addicts who easily fit the criteria for SALOME. Townsend had actually pushed for a prescription heroin program in the Downtown Eastside for a decade by this time, but PHS prioritized supervised-injection, and his goal never got off the back-burner. He appointed Kurt Lock, a PHS employee who had worked at Insite, to assist Crosstown on behalf of PHS. Lock had played a critical role in NAOMI, swooping in to save the day when the first trial faced challenges connecting with drug users. With SALOME, he reprised that role.

  “Eugenia [Oviedo-Joekes] and I visited every single agency and drug user group that we could think of to let them know that we were going to open up recruitment,” Lock recounts. They obtained a telephone number that addicts could call to apply and set up tables around the Downtown Eastside where people could learn more about SALOME and register their interest on the spot. Then there were a few weeks of interviews, where applicants met one-on-one with a doctor and received a number of tests related to eligibility. Whereas with NAOMI the community was intensely skeptical, with SALOME, interest was beyond what Crosstown could accommodate.

  “We had 130 people the first day and then over the course of about a year and a half while we were recruiting, we had about 560 people apply,” Lock says. “So a whole bunch of them were left on the waiting list, which was pretty sad. I still get people applying.”

  Oviedo-Joekes remembers how angry some members of the community still were with her and her academic colleagues. At VANDU, she met with the drug-user community and addressed their concerns personally. “Listen, if we don’t keep going with another clinical trial, this whole thing is going to die,” she told them. “The only way to keep the torch burning, even with just this little timid fire, is another fucking clinical trial … This is the game.”

  Oviedo-Joekes—who in the middle of all of this gave birth to twins—gave the room no assurance that when SALOME concluded they could continue with prescription heroin. But she said that they were going to try.

  A former VANDU president named Dianne Tobin helped bring the community around. Like Murray, she had participated in NAOMI and worked as a community liaison for the clinic. Tobin remembers that it was far from a sure thing that drug users would cooperate with SALOME. Through the consultation phase, she met with Pivot Legal Society lawyers and contemplated organizing NAOMI patients into a class-action lawsuit. (Another idea that Ann Livingston played a role in shaping behind the scenes.) They were very close to suing the researchers for what they argued was denial of a proven treatment. Tobin says it was Oviedo-Joekes who convinced them that the larger picture was more important.

  “As a group, we talked about it and realized that if we had a lawsuit against them that this study would never come about,” Tobin says. “So we put the lawsuit on the side and decided instead that we would work with the people who were setting up SALOME.”

  Murray, Tobin, and the other drug users were on board.

  Using the same Section 56 exemption from Canadian drug laws for which Insite had gone to court, Crosstown Clinic began administering prescription heroin for the SALOME trial. It ran for four years, from 2011 to 2015, but no one patient was enrolled for that entire period. The first group to lose access to the drug was scheduled to transition out in late 2013. It would have been NAOMI all over again. But this time, the researchers running the trial had a plan.

  They turned to a federal mechanism called the special access program (SAP) that doctors and health researchers use to prescribe unconventional drugs that have not been approved for use in Canada. It’s primarily used in cases where, for example, somebody is going to die of cancer and where traditional treatments have failed. In such a situation, a doctor can use the SAP to apply for a potentially lifesaving treatment that’s still in its research phase but which might provide some benefit to the patient.

  At Crosstown, doctors attempted to use the SAP to order prescription heroin from Europe to give to long-time addicts who had repeatedly tried and failed to stabilize their lives with other drugs such as methadone.

  In August 2013, Crosstown filed thirty-five SAP applications for diacetylmorphine. Staff held their breath. Then, on September 20, to everyone’s surprise, twenty of them were approved. For the first time in North America outside of an academic trial, heroin addicts would receive their drugs from a doctor instead of a dealer. But just before that co
uld happen, Ottawa got wind of what was going on over at Vancouver’s little Crosstown Clinic.

  The Conservative politicians who had fought Insite for so many years were still in charge of the federal government. When their new Health Minister, Rona Ambrose, heard that one of her bureaucrats had approved a SAP request for prescription heroin, she intervened.

  On October 3, 2013, MacDonald received a call from a colleague at Crosstown Clinic. They told him to get online and read the news: Ambrose was shutting them down.

  “This [special access] program provides emergency access to lifesaving medicine,” Ambrose said at a press conference. “It was never intended to provide heroin to addicts, and we are taking action to close this loophole. Our Government understands that dangerous drugs like heroin have a horrible impact on Canadian families and their communities. We will continue to support drug treatment and recovery programs that work to get Canadians off drugs in a safe way.”71

  The health ministry rewrote the special access program to eliminate the possibility that it could be applied to street drugs including cocaine and heroin. Patients who had already exited SALOME would no longer have any route to access diacetylmorphine. “People are going to die,” MacDonald remembers thinking. “For us, this is about patient care and providing good care. For those guys, it was about something else.”

  Oviedo-Joekes had a different reaction. “She [Ambrose] gave us the perfect platform to start the fight,” Oviedo-Joekes says. “Suddenly, Rona Ambrose was taking away a right from the poorest and the most vulnerable. The nuns here at Providence Health Care said, ‘No way. You’re not doing that.’”

  With a legal team led by Joseph Arvay, the Vancouver lawyer who had beaten the federal government once already on the Insite case, Crosstown Clinic took its prescription-heroin program to the BC Supreme Court. “Now we were having to persuade the court not only to provide [users with] a safe place to inject but to provide them with the very drug that was causing them to inject,” Arvay says. “It was a much harder harm-reduction case to make. But we made it.”