On a frigid Saturday in February 2019, a group of protestors lined the spiraling central gallery of the Guggenheim Museum in New York City.1 They dropped flyers and dumped fake prescriptions down to the museum’s lobby below in protest of the Sacklers, the family who owns Purdue Pharma and who made donations to the Guggenheim as well as the Smithsonian and the Metropolitan Museum of Art. The protest was dutifully covered by The New Yorker. It’s important, though it does reinforce the trope that Purdue Pharma and the Sackler family are solely responsible for the opioid crisis, that the problem is only the drug and their greed. It’s a good story (but not the complete story) and certainly money from the lawsuits people have brought against Purdue could be useful to those addressing the overdose crisis. But what happened in that art museum made only a slight blip here in central Ohio, a momentary story passing through my social media feeds.
At the same time, Dennis Cauchon and Billy were busy trying to find a site for an aboveground syringe services program, meeting with local agencies, networking with politicians. Billy was attending every health department board meeting he could—he even sent Christmas cards to all the board members. On February 19, Billy stood up at another meeting and talked about what he was now referring to as syringe services programs (SSPs), using the best terminology available. An SSP differs from a one-for-one syringe exchange program (SEP) in that it’s not always based on how many needles you bring in—though participants are encouraged to bring as many as they can. An SSP is, more specifically, a distribution site for sterile needles as well as a point of contact between people who use drugs and health professionals.2 In some cases, it’s the only contact they have. At an SSP, a person who uses drugs can get help with injuries they might have as a result of injecting drugs—abscesses, needles in their arms. They can also learn how to safely inject, how to use alcohol to prevent infections, how to use a fentanyl test strip, or how to administer naloxone. If they wish to go into treatment, someone is around to help. They can also get new syringes. An SSP, Billy would say, is really about building relationships.
It seemed inevitable that Licking County would get one. The commissioner of the health department, a quiet but self-assured man with years of experience named Joe Ebel, was on board—as were other folks working at the health department.3 They understood what was at stake and could see the rising number of hep C cases, not just in Licking County but also around the state. And everyone knew about what happened in rural Scott County, Indiana, one state away, in 2015—an outbreak of HIV resulting in 215 new cases, due in no small part to Governor Mike Pence’s opposition to SSPs.4 Writing in The Lancet, Gregg S. Gonsalves and Forrest W. Crawford explain that “the HIV epidemic in Scott County might have been prevented or mitigated with an earlier response,” including the establishment of SSPs.5 Ellsworth M. Campbell and his colleagues, writing in The Journal of Infectious Diseases, suggest, “Had an SSP been in place prior to recognition of the outbreak, the explosive phase of the outbreak may have been blunted.”6 That incident transformed many in the public health community and certainly influenced U.S. surgeon general Jerome Adams, an outspoken advocate for SSPs. It seemed inevitable that the Licking County Board of Health would concur with Billy, with research, with evidence.
After Billy left the meeting, he texted to tell me that it went well. And then the board of health went into an executive session and afterward voted 8–0 (with two members not in attendance) to oppose any syringe program in Licking County.7 A vote was not on the agenda, there was no public discussion of the proposal, and Billy wasn’t notified they were going to vote, even though he was at the meeting.8 At the time, twenty-two of Ohio’s eighty-eight counties had SSPs in place already, and Licking County’s board of health may have become the first in the state to vote against an exchange in recent years.9 Billy was devastated. Only one board member, Jim Glover, offered a comment to the local newspaper, The Newark Advocate: “I don’t see a reason for us to do something like that. I feel we’re giving them all the chances they need now. When a person decides they want help, they’ll come and get it. Giving them needles just furthers their problems.”
The Saturday after the vote, it’s partly sunny and unseasonably warm. The corner is busy. Across the street, two sheriff’s vehicles are parked side by side near the jail. Trish Perry thinks they’re watching the corner, but they could just be idling, waiting on calls. Trish is running back and forth, handing out harm-reduction kits, pulling more supplies for the tables from her trunk. She’s not too surprised by the vote—she says she has come to expect it from this place. She will keep doing what she’s doing. There will be another meeting of the board of health in a few weeks. Some folks from around the state will likely come—allies from Canton, Dayton, and Columbus. But she is worried that nothing will change, that there will never be an SSP in Licking County. Can she keep doing this on her own? Can she sustain? Right now she is the county’s SSP—serving forty to fifty people every week. She’s in good company, though. There are others around the country risking much to distribute syringes to people who need them. There’s a group called Shot in the Dark out in Phoenix distributing “clean works” out of the back of their cars.10 In Iowa, a group distributes sterile needles around Cedar Rapids.11
The number of people—almost all women—working to distribute food and clothing with Trish Perry and Jen Kanagy is growing. Some of them are in recovery; others are former teachers and social workers, people who have learned about the work Trish and Jen are doing and just want to be engaged. Every once in a while, a nice car will pull up and some middle-class person will step out and hand them boxes of food or clothing to distribute. And sometimes, like on this day, a white-haired woman in a coffee-stained overcoat will slip Trish a couple of dollars. Trish thanks her profusely, knowing how much that gift means.
The woman, like a lot of people who come here for the hot dogs or the harm-reduction kits, looks like she has lived hard. Many of them have—either they are homeless or close to it. One man tells me that he used the naloxone Trish gave him on someone this week. A woman with blond hair tells me her boyfriend just went to prison, and she’s been sleeping under a bridge—she’s hurting and desperately wants to get high. A man with a crew cut says he’s having a hard time finding work that pays well and is close enough to this side of town. They tell me how many times they’ve nearly died, how many times they’ve overdosed. They know these things. They also know how many people they have saved, how many overdoses they’ve reversed.
Jen would love to get some of these people to the next board of health meeting—many are already planning to attend. People who use drugs or who are homeless are not usually given space in public settings—nor do they often seek it—especially in a small community like this. People who use drugs are being talked about but not with, Jen Kanagy says. She wants to try to see if she can get them to this meeting. She was distributing handbills to everyone at the corner. “I can seat ten people in my van,” she tells me, but then wonders aloud if it is even possible to organize people who use drugs.
Billy drives up in his truck. He’s helping move a woman into a shelter today. Jen says, “Billy is like a camel—his back is sagging from all that we put on him.” As if on cue, he walks over and talks about the meeting, saying he wishes he could organize a harm-reduction group at the center in Newark with people who use drugs.
On the day of the board of health meeting, I meet Trish at the corner. It’s a blue-sky evening; the trees are still bare, but spring feels imminent. We wait around for fifteen minutes, but no one shows up. It was a long shot, she says, to get people from the corner to come. She says she knows that people who use drugs are nervous because they’re afraid of being seen in public or because they have warrants. But she just hoped. To stand up in that room and talk about themselves, their drug use, and their desire to be treated with dignity—it would be unprecedented. I can see she’s a little disappointed.
“Well, Jen’s going to come by in a little bit,” Trish says, still hopeful. “See you over there.”
I drive across town to the health department. It’s located in an old tuberculosis sanatorium on the far north of town, miles away from the corner. In the parking lot in front of the building, about a dozen or so people are hanging out—there’s a positive buzz in the setting March sun. Reporters from local papers, along with a couple of TV crews from Columbus, are already getting a story.12 As more people show up—including a contingent from Canton, Trish’s friends from OhioCAN (Change Addiction Now)—one of the crews asks all those present to assemble on the steps, an orchestrated photo op. There are some new faces among the handful of people on the steps, but also some familiar ones, people coming together to support one another: Allen, C.J., Billy, Dennis, Trish. They hold signs that read “Science over Stigma,” “Reduce Infectious Disease Rates Now,” “No Body Benefits from Disease,” and “Meet People Where They’re At.”
A reporter from Spectrum News 1 asks Billy if he’ll go on camera. Billy tells him how he had attended board of health meetings for months asking for support for an SSP, how the board voted in executive session without public discussion and without listing it on their agenda, how they have yet to explain their decision, and how he is here today to seek answers, and hopefully change some minds.13 “If they’d paid attention to the research and science and all the counties that have done this,” Billy says, “it’s a no-brainer … It’s easier for them to say ‘no comment’ than to say, ‘We’ve made a decision based on scientific fact and we’ve decided to go against it.’”
Billy is clearly fired up and the reporter asks him why.
“I’m a ten-year IV drug user,” Billy answers. “Been in recovery for over a year now. During the ten years of using, I contracted hepatitis C. I’ve had abscesses that almost took my life. I’ve been hospitalized for endocarditis. A small thing like a twelve-cent syringe could have prevented a lot of that. What we’ve been doing for so long with the war on drugs is not working. In fact, it’s cultivating addiction. We gotta start looking at other pieces to the puzzle. There’s no one fix to the opioid crisis in America.” He’s on message. On point. And he seems more comfortable with this camera in his face than he did standing in front of city council.
Then the reporter asks him what advice he would give to people who, like him, are no longer using drugs, trying to be abstinent?
“As cliché as it sounds, take it one day at a time. Once we stop using drugs doesn’t mean our life turns into rainbows and unicorns. Life is difficult at best, but taking life one day at a time, one obstacle at a time, what I’ve been able to accomplish in this last year has blown me away.”
About ten minutes before the meeting starts, everyone files into the building and up to the already packed boardroom—standing room only when I walk in. Dennis speaks first, and he’s visibly angry, saying that for months now they have been “midwestern nice”—attending meetings, joining task forces. “Billy was at your meeting last month,” Dennis continues. “It wasn’t on the agenda. You revised the agenda. You went into a secret meeting and outlawed exchanges, not just our exchange, all of them. It’s not courteous. It’s not how government is supposed to function. If we had been Park National Bank, would you have done this to us? I think there’s no way you would have backstabbed us like this. Who did you backstab? Billy. Who has been coming to every meeting. And what do you call that? It’s called stigma. And that’s why we’re here … We are in the mainstream. You are out of the mainstream in how you have behaved. Polls show that most Ohio residents support needle exchanges … We’re here to promote science over stigma. You are the board of health, not the board of moralism. These people, you are increasing their chance of dying. It’s a serious issue. You need to take it seriously and look at the evidence. These are real people.” He says that what they did in February was an open meetings violation and that they will be challenged on that. All the while, he is holding a sign that reads “Every Human Is a Human.”
Billy follows. “Hello, everyone,” he begins. “Good to see you again. Appreciate you letting us come in. I’m curious, if it was an evidence-based decision, if it was based on public health, I think it would been a no-brainer for the board of health to agree to this. So I’m wondering if there’s some sort of pressure, political, or what exactly it is. Because I think we’ve proven that the community overall supports this … Would it be possible to come out and let us know how you guys came to this decision to all vote no?” He says they should go visit one of the state’s exchanges, get out of their comfort zone.
And then Trish speaks. And then a retired nurse, two working nurses, a mother from Canton named Cindy Koumoutzis with OhioCAN, a man with hep C, several mothers, a chemist, a woman who used drugs, and another who says, “I used needles from people who had hep C because I couldn’t find a clean one. It didn’t matter. I’ve seen needles break off in people’s arms. I’ve had abscesses. I’ve had MRSA … I can’t speak enough for it—I’ve lived it.” Throughout the testimony, Billy stands focused, back against the wall, nodding in agreement. At times he squats and listens intently. After each speaker finishes, he claps and offers a generous smile as he tells each person thank you.
The last person to speak is Dr. Robert J. Masone, chief medical officer at Life Spring Recovery, a local outpatient substance use disorder treatment facility. He says that there’s no one way to help people with substance use disorder. There are several approaches, just like with any problem, and offering “clean needles” is one way. It’s practical, cost-effective. “But,” he says, “I heard some talk here about love. To provide a clean needle to someone is a sign of love. They don’t get it, but they need it.” Not having love, he says, is probably one of the causes of addiction. “And that love can cause them to open up, and we can approach them and get them to another level of treatment. I look at needle programs as intake—harm reduction, cost reduction—but also an intake to give hope to the people.”
The World Health Organization and the U.S. Centers for Disease Control have supported syringe programs for many years. The Ohio Department of Health supports them. In Licking County, the United Way and the Licking Memorial Health Systems support having one.14
The members of the board of health are silent. They listen but offer no explanation for their decision. No comments. No questions.
Board of health president Neisha Grubaugh issues a statement that doesn’t respond to questions but just says the board appreciates the comments and that the health department is committed to disease prevention, offers hep A vaccines, gives out free naloxone, and educates “the public about the dangers of opioid abuse.”15
After public comments are closed, we file slowly out of the building, chatting excitedly along the way, energized, galvanized. As a big full moon begins to rise, the crew from Canton and Billy and his girlfriend, Samantha, are gathered by Billy’s truck, which is loaded down with ladders and painting supplies.
Years before, in the late 1980s, activists, especially in New York City and San Francisco, advocated for needle exchanges as a way to prevent the spread of HIV. They attended forums with health officials, they demonstrated, and in some cases they broke the law. Needle exchanges had already started in Europe (even in Margaret Thatcher’s England) and been proven effective. Indeed, research from Amsterdam, Sydney, and elsewhere showed that people who used new syringes had lower rates of HIV infection. Acceptance for syringe exchange programs moved more slowly in the United States; indeed, there was significant pushback from law enforcement, community leaders, and politicians. Dianne Feinstein, as mayor of San Francisco, opposed her health commissioner’s proposal for one. In 1988, Senator Jesse Helms pushed for a law banning federal funding for needle exchanges.16
But the mood was shifting. In late-1980s New York City, ground zero in the United States for the AIDS crisis, around half of the city’s 200,000 IV drug users were infected. The situation was dire between 1988 and 1992: according to CDC numbers, 202,520 Americans had AIDS. In 1987 alone, 13,329 people died from the disease; by 1990, that number jumped to 21,628. There was a growing awareness that while the spread had been slowed among gay men, AIDS was spreading quickly among IV drug users, especially in poor communities of color, and this was why, as William A. Schwartz reported in The Nation in 1987, the street price for “clean works” seemed to have doubled in Boston since the beginning of the AIDS epidemic. Given the stigma around drug use, needle exchange was a hard sell. Noting that the common refrain from naysayers is that exchange promotes drug use, Schwartz writes:
But even if it were true, there is no comparison between the dangers of cleanly administered i.v. drugs—which, while real, are limited, can be escaped through treatment and are uncontagious—and those from AIDS, which is always fatal and can be spread to other users, sex partners and babies. Where drugs are available, needles generally are; the question for public policy is whether they are to be clean or dirty. Few would openly support making intravenous use of heroin and cocaine capital offenses, but this is what withholding sterile injection equipment effectively does.
He cites a “profound contempt for addicts in our society” that is reinforced by racism.
The only pragmatic way forward is to highlight the risks to everyone—not just people who use drugs. “It is clear that compassion for the dying is insufficient to produce serious action. Fear may prove a more powerful motive.”17
In a 2011 study of the movement for access to syringe exchange in New York City, researchers Daliah Heller and Denise Paone note, “Even today, ‘winning’ arguments for the expansion of syringe access have been rooted in the crisis of HIV/AIDS rather than the need for a continuum of care and treatment services addressing problems of drug use.”18 It’s the fear of the spread of disease that seems to matter—not the individual who uses drugs.
In a short 1988 documentary by the Gay Men’s Health Crisis, a gray-haired nurse from St. Luke’s Hospital named Cynthia Corcoran says that people need to stand up, that many people are dying from AIDS and the hospital can’t handle all the deaths. “I won’t handle them,” she declares, adding that health professionals need to give out needles. Her father went to jail to fight prohibition, she says, suggesting a new round of civil disobedience: “I think all of us should be willing to do the same to literally save them.”19 People must be willing, she asserts, to call out the immorality of laws and policies. They must be open to discomfort and have the courage to break unjust laws—indeed, at the time eleven states, including New York, New Jersey, and Massachusetts, had criminalized possession of syringes: no one except medical professionals or people with prescriptions could have a needle. The law, of course, led to a lot of sharing—and even renting—of needles. Today, all but five states have laws prohibiting possession of syringes without a prescription. In Ohio, possession of a syringe is a second-degree misdemeanor punishable with up to 90 days in jail and a $750 fine; if a person already has another drug-related conviction on his or her record, the punishment goes up to a first-degree misdemeanor with the possibility of 180 days in jail and a $1,000 fine.20
Many early exchanges were low-budget and illegal. The people involved were aware of the law but didn’t care. They had done their research and viewed providing sterile syringes as an effective method for reducing the transmission of AIDS, first and foremost, but also for treating people who use drugs like human beings. The apparent first exchange in the United States, started in 1988 in Tacoma, Washington, by a biker named Dave Purchase, was little more than a TV tray on a corner from which he exchanged new works for used ones.21 In San Francisco, also in 1988, an underground program called Prevention Point offered syringes, bleach, alcohol wipes, cottons, and condoms to affected communities, transporting supplies in a baby carriage to avoid suspicion. In New York City, groups like the AIDS Coalition to Unleash Power (ACT UP), Jon Parker’s National AIDS Brigade, and the Association for Drug Abuse Prevention and Treatment (ADAPT) were behind the work to establish a needle exchange, at a time when “60 percent of I.V. drug users were HIV positive.”22 They set up shop on street corners and in single-room occupancy units around the city. Indeed, Parker had already set up exchanges in New Haven and Boston, and ADAPT had started giving out needles on its own around the city. ADAPT’s president, Yolanda Serrano, told The New York Times, “We know whoever does this is going to get arrested, but somebody has to take the first step. This virus is spreading like wildfire in minority neighborhoods. It’s getting out of hand, and no one is really addressing the issue.”23
When New York City’s health commissioner, Dr. Stephen Joseph, proposed a small experimental program, it was supported by then mayor Ed Koch and the state board of health. In late 1988, New York City finally had a legal syringe exchange, but not for long. That program ended in January 1990, when Mayor David N. Dinkins made good on a campaign promise and stopped it. Most activists felt it was too small to have any real effect.
On March 6, 1990, ten activists set up a table at the corner of Delancy and Essex on the Lower East Side of Manhattan.24 At the time, this was a working-class neighborhood, a place where they had done this work before. Tipped off by a story in Newsday the day prior, the press knew they’d be there, and so did the police. Activists from ACT UP were on one corner, and members of Curtis Sliwa’s vigilante anticrime organization Guardian Angels were on another, shouting, “No drugs! No needles!” And then, after a brief meeting at Katz’s Deli (according to The New York Times), a needle exchange was set up on a third corner around noon. Those at the exchange tried handing out “AIDS-prevention kits,” which included condoms, bleach, and new needles. But police rushed in shortly after they set up a black card table, and with the police presence and a mess of reporters and cameras, nothing was distributed. The people at the table, including Jon Parker and Richard Elovich, were arrested. Mayor Dinkins remarked about the incident, “I do not wish to see people assisted in becoming addicted.”
In court, the activists relied primarily on the justification or necessity defense—the idea that public policy is supposed to address public problems and that, if it doesn’t, citizens can intervene.25 For example, breaking into a cabin in the midst of a blizzard or trespassing in your neighbor’s yard to put out a fire can be excused as a necessary action. The lawyer for the defense called the activists modern-day John Snows, a reference to the British doctor who sabotaged a town pump to prevent the spread of cholera in 1854. Obviously, people were angry when Snow took the handle off the pump. But he was right. This was a situation, the lawyer argued, when the body count was increasing and the problem had to be addressed.
In the end, the New York City activists were acquitted.26
Syringe exchange became an official part of the public health response to AIDS in New York City in the late 1980s, and today the U.S. surgeon general and the CDC support SSPs, though federal dollars cannot be used to purchase syringes.
On a Friday in April 2019, I spend the afternoon at an SSP in Canton, a guest of Trish Perry’s friends from OhioCAN, Cindy Koumoutzis and Ron Stromsky. The program is called the Stark Wide Approach to Prevention (SWAP), and there are 430 people enrolled. During my visit, there are forty-five visitors and the program gives out likely thousands of needles. Some of the people who come in look like they’ve been struggling for a while, but others do not; some are coming from work, and there’s a mom talking about getting her kids from school. Ron offers peer support to those who request it, and anyone can get Narcan training and hep A shots.
Public health worker Amanda Archer sits at a desk when people walk in and show their ID card, which gives them safe space within up to a thousand feet of the place, though the police tend to stay away, they tell me. Amanda asks them which services, in addition to new syringes, they are interested in. She worked at the coroner’s office until 2014 and remembers when she first started seeing prescription opioids (Percocet and OxyContin, in particular) and when she did her first autopsy on someone who died of an overdose from heroin. She remembers thinking, just before she left the coroner’s office, that things were peaking. She was wrong.
Amanda is sporting straight black hair, black-framed glasses, and a navy-blue Canton Health Department hoodie. She has a good laugh, too. Despite the seriousness of the work, she erupts every once in a while as if decompressing. The space is reminiscent of a doctor’s office, but then there’s Amanda laughing and Cindy in the corner making grilled cheeses on a sandwich press. Today, Cindy chats it up with folks about travel, dieting, and Greek Easter. Amanda launches a debate about the relative merits of morning glories versus petunias, with a sidebar about the latest season of The Great British Baking Show. And they all seem to know everyone who comes in and can ask them personal questions, can check in with them, can show them a little love.
A few days after the board of health protest, Trish went with her grandson Ethan, his wife, and Billy down to Myrtle Beach, South Carolina. She takes this trip every year, but this is the first time she has ever taken Billy. So many times in the past he couldn’t do it, wouldn’t do it, or simply made their vacations next to impossible. One time they were driving to Kentucky’s Newport Aquarium, on the other side of the river from Cincinnati. They made it to I-70 before Trish had to turn around and bring him back. She and the others continued the trip, but Billy messaged them the whole time that he was going to kill himself.
But now, throughout this week in Myrtle Beach, Trish posts photo after photo on social media of Billy and his son, Ethan. Billy in the ocean, blue sky. Billy in the pool with Ethan. Smiling.