Where a Life-Saving Needle Exchange Operates in the Shadow of the Law
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Friday night dinner service at the Salvation Army is halfway over and the front window is fogged with the heat coming off the steam trays. A long stretch of mild weather in Iowa City has finally given over to the cold, and people are trickling outside in heavy layers to smoke and shoot the shit. Sarah Ziegenhorn and John, who doesn’t give his last name, are standing a little ways off from the group, talking about planes passing overhead and the 100 or so doses of naloxone sitting in the trunk of her car.
“The cops got Narcan,” John says, calling the overdose reversal drug by its most common brand name. “But I don’t fuck with the cops.”
This is both a practical predicament and a public health crisis for the United States. Heroin is illegal, and so it often happens that many of the people carrying this life-saving opioid inhibitor—law enforcement, in ever-increasing numbers—are the same people you don’t want to run into if you are overdosing. John, who looks to be around 40, isn’t using heroin, but he knows how this works.
Ziegenhorn, a 29-year-old Iowa native and co-founder and executive director of the Iowa Harm Reduction Coalition, knows, too. So she spends three to four days every week, alongside a rotating group of IHRC volunteers, standing outside, making small talk with strangers, and trying to hand out naloxone to those in the best position to administer it effectively: People who use drugs, who are also the people most likely to be around when an overdose occurs.
After a few minutes, they move across the street, with Ziegenhorn taking a seat on the lip of her car bumper. Sorted in the stack of plastic bins behind her are most of the supplies a person using injectable drugs will need to shoot clean: vials of sterile water and vitamin C powder to dissolve the drug, single-use cookers to prevent the spread of blood-borne viruses, alcohol pads to swab the the injection site, cotton balls to prevent debris or solids from entering the syringe, and bags and bags of naloxone.
There is also a rainbow assortment of flavored condoms nearly spilling out of another box, rapid test kits for HIV and hepatitis C, and clipboards of paperwork to connect people to housing and healthcare services across Johnson County. It’s like a combination harm reduction and social service center that happens to operate out of a Honda CR-V.
“We usually have candy, too, but we’re out tonight,” Ziegenhorn says with an apologetic shrug. IHRC is volunteer-run and has no real budget to speak of, so the bulk of its supplies come from other harm reduction and public health organizations. The naloxone is also no-cost, the result of a partnership between the pharmaceutical giant Pfizer and an organization called Direct Relief.
The two of them talk for a while longer, at one point trading swigs off the whiskey John has with him, but he doesn’t end up taking any Narcan. Instead, he walks away with a box of clean syringes that he’ll use to shoot meth.
Decades of research have shown this kind of exchange—giving clean needles to someone who needs them—to be an incredibly straightforward way to reduce the spread of HIV, hepatitis C, and all kinds of skin infections associated with reusing dirty needles. It’s a model that’s been endorsed by the American Medical Association, the World Health Organization, and the American Society of Addiction Medicine. It’s also illegal in Iowa.
Because of this, IHRC, a 501c3 nonprofit, can’t do it. But Prairie Works—a kind of shadow sister to the organization that shares some of the same volunteers and tag teams with them on outreach—does it, anyway. So far without the notice or intervention of local law enforcement.
“Do you really want to arrest someone for offering HIV prevention in their communities?” a Prairie Works volunteer who declined to be named tells me. “Is that reasonable?” But as of now, the Iowa state legislature believes it is: Even as lawmakers acted to expand access to naloxone, clearing a path for the work IHRC currently does, a bill to change the paraphernalia law and allow for legal syringe exchange never made it out of committee.
So for now, a coalition of Iowans, many of whom have lived in the area for their entire lives, have come together to break and bend the law in order to fill in the gaps created by the state. These are sometimes uneasy alliances—people who think about drug use in wildly different ways and who have different goals in mind—but it remains a model of the organizing that becomes possible, and desperately necessary, in the absence of good policy or accountable lawmakers.
By the end of the night, with everyone cleared out from the Salvation Army, Ziegenhorn and the other volunteers pack up. They are running a community training tomorrow morning, and there are still booklets to be printed and an agenda to be finalized. They close up the bins and return them to the car; empty LaCroix cans rattle in the back seat as the trunk slams shut.
The first needle exchange program started in Amsterdam in 1984 after a pharmacist in the area stopped selling clean needles. In response, out of concern about a hepatitis B outbreak, a group of IV drug users calling themselves the Junkie Union started a program to distribute them.
In the United States around the same time, a man named Jon Stuen Parker, a Yale medical student, AIDS activist, and former IV drug user, was doing a version of the same thing: handing out needles and often getting arrested for it. An airy little profile The New York Times ran on Parker in 1989 called him the Johnny Appleseed of clean syringes. By then, an exchange was operating in Tacoma, Washington, and New York City was doing a limited program to test for outcomes. But the idea, despite a country finally waking up to the AIDS crisis, was still considered politically fringe. Republicans and Democrats held it in equal disdain, each scrambling to appear tough on crime and disgusted by drug users.
Things have shifted some in the decades since. The rising visibility of middle class white people using prescription and injection opioids in recent years has led the federal government—which for decades pathologized and criminalized drug use in black communities—to adjust certain policies. In 2016, the federal ban on funding for syringe exchanges was lifted and now even Donald Trump tends to use soft language when talking about opioids. Still, these are minor changes in the face of a massive problem.
Total abstinence—the idea that there is some possible future in which no one uses illicit drugs—is a fantasy.
In 2017, it is no longer a question of if needle exchanges and harm reduction work as public health strategies. The question is whether or not the government will embrace good policy at the scale necessary to let them work.
Harm reduction, at bottom, is about reducing the negative and preventable consequences related to drug use. It is anchored in profound realism, and acknowledges something that many lawmakers, and millions of regular people, are often loath to admit: People use drugs for a variety of reasons, and always will use drugs for a variety of reasons. Total abstinence—the idea that there is some possible future in which no one uses illicit drugs—is a fantasy.
Instead of wishing things were different, harm reductionists meet people “where they’re at.” In Iowa right now, where the rate of heroin overdose deaths and reported cases of hepatitis C are on the rise, if where you’re at is injecting opioids, then you will need clean needles and naloxone to do that more safely.
The outcomes are uniform, from Vancouver to San Francisco. Syringe exchange programs dramatically reduce the rate of HIV and hepatitis C infection in the communities where they operate; help keep used syringes off the street; and protect first responders, law enforcement, and other people who come into inadvertent contact with syringes, because syringe pickup and disposal is often an added service with most exchange programs. Participants in needle exchange programs are also five times more likely to enter drug treatment than non-participants because, just as IHRC and Prairie Works connect people to housing, they function as conduits to other services.
And yet harm reduction strategies are often only embraced by policymakers in this country after something has gone terribly wrong. Indiana is a case study in this kind of political myopia. In 2015, then-governor Mike Pence signed off on a needle exchange program, but only after more than 200 people in a single county were diagnosed with HIV.
The decision was rightly celebrated by public health advocates a positive step, but the legislation was narrow enough to almost guarantee a devastating repeat. According to the law, in order for a locality to establish a needle exchange, officials have to first demonstrate that they’re already in the midst of a public health crisis related to IV drug use. It’s the policy equivalent of handing out bandages only after someone has showed you they’ve sawed off their own arm.
The limited scope of the law has also allowed for counties to arbitrarily dismantle their exchanges, again undercutting the program’s longterm benefits. In October of this year, Lawrence County ended what was an effective syringe program because county commissioners had moral objections. Rodney Fish, one of the members who voted against maintaining the exchange, quoted the Bible in the meeting before the vote was held. (People using drugs must “turn from their wicked ways” so that God might “heal their land,” he suggested.)
“It’s just a constant struggle to apply the science when people hold such strong preconceived notions about what it means to provide care,” Lindsay LaSalle, a senior staff attorney with the Drug Policy Alliance, tells me. “It is horrifying to me that you needed to have an HIV outbreak in order for a Republican legislature to embrace it.”
It isn’t the science or research that’s the problem, she says: “It’s really about how the science breaks through ideology, and that is what we’re really butting up against.”
On Saturday morning, 33 people are standing in a circle in Public Space One, an art space in the basement of a Methodist Community Center in downtown Iowa City. This is a college town, and the room pulls heavily from that cohort: professors, medical professionals, and students at the medical school make up most of the group waiting to be trained in the principles of harm reduction and naloxone 101.
For the main exercise of the day, Ziegenhorn, facilitating the training with IHRC outreach team leader Jared Krauss, offers a series of questions and statements about drugs and drug use. She reads them aloud, then asks people to rate their agreement or disagreement on a scale of 1 to 10.
Is addiction a disease? Can illegal drugs be a useful way to cope with stress? I feel sorry for people who are drug users. Most injection drug users don’t care about their health or healthcare.
People move around the room as a response to each, assembling in groups clustered by where they stand on the scale of agreement or disagreement. After everyone settles into their spot, they discuss why someone would feel the way they do. Most people in the room agree that drug use, instead of being a criminal issue, is a medical and social issue, but it becomes clear pretty quickly that there are limits to their consensus.
An older academic whose son uses heroin says he has come out to try to gain understanding, but his fear, the heavy weight of love and anxiety felt by a parent who just wants their child to stay safe, is palpable in his responses.
When a question about whether or not drug users care about their healthcare and health comes up, a debate breaks out. He is among the group that believes people who use drugs often lose a sense of themselves—of any perspective about the rest of their health, their families, their lives. It all becomes about getting high.
Jeana Hoeninghausen, who is 27, on the board of IHRC, and newly sober, bristles. “As a drug user, I always thought about that stuff. I didn’t want to look like a product of what I was doing,” she says. Using heroin didn’t stop her from being meticulous about her appearance, getting to work on time, or taking care of her daughter. The fact that she was using was invisible to almost everyone in her life. “I would get my daughter dressed and out to school, come home, clean the house. It was just one more thing to do in my day: Okay, have to get high.”
A lot of the day’s discussion goes like this—respectful but often tense exchanges about what it actually means to destigmatize drugs and drug use when these are attitudes that many of us were raised on and often live deep in our bones. The resulting discomfort is part of the point.
People come to harm reduction for different reasons. For Ziegenhorn, living in Washington, D.C., as a young public health worker and volunteering with HIPS, a community health and sex workers rights organization, was her first formal experience with the model. For Hoeninghausen, it was her own drug use and the fact that, in the height of her addiction, she had no idea there were options to help her use more safely.
She knows it may strike some people as odd—being thoughtful, almost uptight about how you go about using heroin—but that’s what it was for her, she says: “I did care, I cared very much.”
For Ann Aschoff, a 57-year-old nurse practitioner who lives in neighboring Coralville, Iowa, and listens quietly for most of the volunteer training, it was pain that brought her in. She lost her 27-year-old son Zach to a heroin overdose in February of last year.
When Aschoff first begins to describe Zach to me, she closes her eyes like she is in prayer. “He was a deep thinker. He had lots and lots of friends. He was a risk taker, an adventure lover. He skateboarded and snowboarded. He was just super graceful. He just gobbled up life,” she says. “I don’t think we’re ever really going to understand the reasons why he got into heroin.”
But he did, and hid it well enough that Aschoff couldn’t see it. In retrospect, she says, there may have been signs she was missing. “I know, in hindsight now, that Zach tried to tell me. But I think he was really concerned that I would be worried forever. And I would have been, but I would have liked to have the chance to help him. We would have done anything to get him treatment.”
Today she makes calls to her local representatives to push for legal syringe exchange and a Good Samaritan law that can help shield people from criminal prosecution if they call 911 to report an overdose. She is working up to doing outreach with IHRC: “I just really feel committed to preventing this from happening to somebody else.”
The emotional component of all this is not lost on Ziegenhorn. In these early days, with the fate of syringe exchange legislation uncertain and countless other hurdles standing in the way of more comprehensive state reforms, much of the work right now depends on the strength of the community coming together in that basement. “A lot of this is about relationship building,” she says.
Even as increasing peer-to-peer access to naloxone and syringe exchange gains traction among community members and influential state lawmakers of both parties, Ziegenhorn understands it is just one small intervention in what has to be the robust, long-term work of bringing people on board for more.
“Naloxone is the olive branch for working with police and substance use treatment agencies who are getting behind the idea that dead drug users don’t 12-step, dead drug users don’t recover, and we need to keep people alive,” she explains. “But that’s really the first step in talking with folks about, well, if we’re doing this, maybe we should be doing safe consumption sites, too.” (Safe injection sites are a lot what they sound like: a clinic environment where people can go to use drugs where they will also have access to social services around housing and healthcare—and swift intervention in the event of an overdose.)
This targeted kind of advocacy, starting small and working from there, makes sense given the current political landscape, both in Iowa and nationally. Kellyanne Conway, who has no experience in public health and has been an enduring mouthpiece for this administration’s assault on healthcare and the social safety net, is now something called an opioid czar.
Chris Christie, who shuttered health clinics in his own state, led the task force on federal action that led to Trump declaring a “state of emergency” but failing to request the funds needed to do something about it. Decades of bad policy wreaked havoc on communities and cost countless lives, but the coalition working in Iowa City, mirroring early grassroots efforts in Europe, Canada, and elsewhere in the United States, offers a chance to stanch the bleeding.
“I wonder all the time if people who are public health experts, who are law enforcement folks, who are legislators—I just wonder if they’ve ever put a needle in their arm before or if they’ve sat with someone and watched them prepare to shoot up,” a Prairie Works volunteer, who also asked not to be named, says of the policy horizons in her state. “Things change so much when you either are that person or you have the trust of another person where they will shoot up in front of you. It changes a lot of how you think about what drug use is, why it happens, and the solutions to it.”
But for now, Prairie Works remains underground. And IHRC remains a small, volunteer-run organization stretching to meet community demand. In between a police naloxone training and a pick up at a methadone clinic that weekend, Ziegenhorn had to stop at a coffee shop to submit a grant that would allow them to take on their first paid staffer.
And as much as the politics may be aligning around syringe exchange, a change in the law can still feel like a long way off. There’s a lot to do in the meantime. There is another outreach shift in Cedar Rapids tomorrow. The temperature will be in the high 30s again. Reaching people who stay outside gets harder during the cold months, and there’s a long Iowa winter ahead.