But as the opioid epidemic has led to a surge in new HIV diagnoses in places like Indiana, and as the death toll from drugs including Opana and fentanyl mounts in nearby West Virginia, the work of syringe exchanges like Prevention Point Pittsburgh has become more important.
So we wondered: What's it like to operate a syringe exchange in a highly regulated but still criminalized place such as Pennsylvania? Prevention Point staff allowed us to follow them but asked that we not speak directly to any of their clients. We agreed.
Here's a day in their life.
Wednesday, September 14, 2016
The offices of Prevention Point Pittsburgh are three cramped rooms that in places look more like a warehouse than an office. In the office's main room, wire shelving is stacked high with boxes of insulin needles and, across the room, a metal cabinet sits with its door ajar. This room serves as conference space and staging area. It's where Alice Bell, overdose prevention project coordinator, compiles flyers and fact sheets about preventing overdose with naloxone (Narcan), along with little black, plastic baggies containing two vials of overdose antidote and a few syringes. It's also where Danforth folds brochures to restock the supplies in the organization's unmarked, white van, now parked at the far end of the weedy parking lot across the street.
Spread loosely on the wall of the main room, between posters urging people not to shoot up alone and a construction-paper display of the supplies the organization provides, hang paintings of women with their faces turned away, on canvas but not stretched across a frame. The paintings were done by the brother of one of PPP's founders, Carnegie Mellon University Professor Carolyn Acker. Acker's brother died from complications of AIDS, and Acker donated the paintings when the organization moved into this office.
Off the main room are the offices where PPP's four staff members work: In one sit the organization's executive director, Aaron Arnold, and case manager, Ron Johnson. Everyone knows Johnson; he's the guy to go to if they want to get clean or need a place to stay -- or just some food for their families. Danforth said the most common question she gets when she takes the van out by herself is, "Where's Ron?"
"They aren't just saying, 'Where's Ron,' when they say that," she said. "They're saying, 'This is my van, and that's my guy. Where's my guy?'"
The other room, the one with the giant houseplant, copy machine and whirring air conditioner, is where Danforth and Bell sit before and after their trips to see the people they serve -- both people who inject drugs and those who want to stop overdoses, sometimes both, often one and the same. Bell and Danforth are PPP's first and most recent hires. Bell was PPP's first -- and for two years its only -- paid employee, starting a year before the organization went legit in 2001 with authorization from the board of health. She volunteered for the group before that.
Danforth, meanwhile, came to Prevention Point Pittsburgh in October last year, an outreach worker new to Pittsburgh from Asheville, North Carolina, where she worked with homeless people and sex workers. In a fit of packing procrastination and after years of circling the idea, Danforth applied for a master's in public health two days before leaving Asheville. Now she's enrolled in classes at University of Pittsburgh, where she often finds herself searching Google for harm-reduction data -- a frustrated reaction to the abstinence-based public health messages she hears in class. She'd like Prevention Point to stencil the words "HARM REDUCTION SAVES LIVES" on the van she and Johnson take out on Tuesdays and Wednesdays to meet clients and pass out needles, cookers and breakdown (medical-grade vitamin C used to break down insoluble drugs to something that can be liquefied and injected), among other things.
On this sunny September day, the sweltering heat from the month before had finally broken, and Danforth was wearing an orange, short-sleeve top that showed off her "no shame" tattoo. By the time she arrived at the office at 10 a.m., Bell had already been there for an hour and worked from home for an hour or two before that. Today, Bell had been answering emails and drafting a letter to the U.S. Food and Drug Administration about the suggestion that the standard one or two doses of naloxone isn't powerful enough to counteract fentanyl overdose.
"That's not been our experience," she said. "Our finding has been that 93-95% of the time, two doses or less is sufficient."
Later, Bell would finish prepping the brochures, pamphlets and oft-photocopied fact sheets, along with the kits of naloxone, for a community meeting she'd attend that night. Some folks in McKeesport, about 30 minutes from the Prevention Point office, asked her to come out and talk to them about the antidote. The most common question she gets, she said, is how people can get ahold of it.
"It's not easy," she said. "There's not enough of it."
When Danforth arrived, she went immediately to the photocopier, where she duplicated brochures on safe crack injection and PPP's case management services. She folded them at the conference table and packed them up -- along with medical disclosure sheets, more naloxone kits and instructions on how to use them -- in a slim plastic file carrying case.
She also ducked into an actual storage room on the same floor and grabbed a few sharps containers and a few more of the blues, the syringe type her regulars prefer.
Around noon, she headed out to the Hill, a traditionally African-American neighborhood of tidy houses interspersed with overgrown and abandoned ones that is not far from the sprawling Victorians of the Friendship neighborhood or the rapidly gentrifying rowhouses of Lawrenceville.
"Let me make a prediction," she said. "I'll serve 15 people and give out eight naloxone kits. Let's see how I do."
Lives Won't Wait for the Legislature
On this day, PPP Executive Director Aaron Arnold wasn't in the office. He had spent the previous day driving out to Harrisburg, the state capital, which also happens to be near his hometown in Pennsylvania Dutch country.
It was there, in Lebanon, that he was first exposed to injection drug use. In high school, heroin came to his hometown. After not too long, he said, people he knew began to make the nearly two-hour drive to Philadelphia to attend that city's Prevention Point syringe exchange (it's unaffiliated with PPP). In Pennsylvania, only Philadelphia and Allegheny County, where Pittsburgh is located, have passed ordinances allowing syringe exchanges to function legally.
Today, PPP serves about 1,000 people who inject drugs every year -- a fraction of the people in the area who could use the service. There are no good numbers on how many people inject drugs in Pittsburgh. A study published in 2004, Arnold said, estimated the number was around 12,000 in the greater Pittsburgh area.
"We know that in recent years more people are using opioids and injecting drugs, so that's definitely an undercount," he said.
There are syringe exchanges in other places, Bell said; she often gets calls from people operating exchanges off the books in places such as Beaver County, York and Lancaster. But for now, Pittsburgh and Philly are the only cities in the state where syringe exchanges can operate legally.
When Arnold moved to Pittsburgh 11 years ago to attend college, he found Prevention Point and started volunteering. He continued to do so throughout college, though it became more sporadic as he began grad studies in public health and started working at Pittsburgh AIDS Task Force.
But then he heard that PPP needed an HIV tester at their Sunday syringe exchange, held in Pittsburgh's Oakland neighborhood. In March this year, he became the executive director.
So while Danforth was driving the van to the Hill, Arnold was in the state capital, meeting with the state's HIV planning group, a loose group of HIV stakeholders who gather to guide priorities related to HIV prevention and care. Right now, they're constructing a five-year plan for the state. It's Arnold's goal to make sure that regulations against syringe exchanges are loosened so that more exchanges can function, making it easier for people to shoot up without getting sick or injured or acquiring HIV -- and to make sure there's funding for those programs.
Recently, Pennsylvania applied to the U.S. Centers for Disease Control and Prevention (CDC) for recognition of their public health emergency related to HIV or hepatitis C outbreaks. The CDC approved the application, and now Arnold is hoping to leverage that status to get the state's secretary of health to waive or suspend the paraphernalia law that makes possessing or distributing syringes and other supplies illegal.
"We're really hoping to move quickly," he said. "Places like Washington County and Beaver County urgently need harm reduction. Those syringe exchanges aren't comfortable being up and running without a nod from the state."
What he doesn't want is to wait for the legislature, which is still largely conservative, to enact a new syringe exchange law. The process could be lengthy and legislators could add something that hurts people who inject drugs or makes it even harder to bring evidence-based public health solutions to the opioid epidemic to the public.
And, while it's legal for people to buy syringes at pharmacies in Pittsburgh, only certain people can afford this option -- and even fewer feel comfortable doing this. Besides, said Arnold, many pharmacies in the state still don't understand the law or think they're enabling drug addiction when they follow it. So it's not uncommon for pharmacies to refuse to sell needles to those who need them. And that means the options remain the same: sharing needles or getting them from a syringe exchange.
The Secret Truth of Syringe Exchange
That afternoon, Danforth pulled the van up to their spot in the Hill. There's nothing around; an agreement with the neighborhood not to park in residential areas means that she must go to an industrial area with construction across the street and large, anonymous buildings all around. Unless you're working at the construction site, Danforth said, there's no reason to be there.
On this day, as on most days, someone was waiting when she opened the doors. Sometimes there are 15 people. But today there was just one -- a new guy, white and in his 40s. He approached the van hesitantly, Danforth said, with a stiffness in the shoulders and a slowness in his approach that she's seen many times before.
"I'm here to get ... needles?" Danforth said he told her, in a way, she said, that communicated, "Is that what I'm supposed to say?"
She waived him on to the van and sat him in the folding chair she'd unlatched from the bungee cords that held it in place as she drove over the potholed roads of Pittsburgh.
He pulled a needle from his pocket, she said, one he'd been using all week.
"I need a new one," she said he told her. "This one really hurts."
"How many do you want?" she asked, pulling out a form on which she keeps track of what supplies people take. "Is 80 enough?"
After the first guy left -- and it was a quick, a five-minute interaction -- Danforth busied herself with other things. There's always something to do in the van: sorting the supplies, refilling bins of cookers and cottons, making sure the various needles -- pogos and ultrafines and halves and blues or browns -- are separated out and getting ready for the next person.
The secret truth of syringe exchange, she said, is just how boring it is. Mostly it's hanging out. She always brings a book with her, just in case it's slow, she said.
Because the van is parked at such an out-of-the-way location, when people come to meet her, they drive in, park around the corner and walk over, poking their heads in to get supplies. On really cold winter days, they'll sometimes carpool.
Often, they come from as much as an hour away. On this day, they came from not quite that far. One guy was from Dormont and another came from Allentown, both on what Pittsburghers call the South Hills, the suburbs just south of the city. A third came from Carnegie, 30 minutes to the southwest.
But sometimes, they'll get people from as far away as McKeesport. Usually, they're picking up for more than just themselves, something Danforth and Bell call secondary exchange. It's not uncommon to hand out, as Danforth did on this day, a box each of 300 pogos -- the most popular needle -- to several people, or to give people a box of the 31 gauge "bee sting" needles, so named because their gauge is so small that they barely sting the skin when they go in.
"No One Dies From Opiate Overdoes If They Can Be Kept Breathing."
She was finishing organizing things when then the next guy arrived. This guy was also new. When Danforth told him about naloxone and asked if he wanted a kit, he nodded, she said.
"I revived someone from an overdose last night," the guy told her, she said. "I didn't have any Narcan. I did it through breathing."
That is, he repeatedly breathed into the mouth of his buddy, two quick breaths and one long one, until he came back. As Prevention Point's naloxone form states, "No one dies from opiate overdoes if they can be kept breathing!!!"
"Can you imagine?" Danforth said later. "That must have been exhausting. That's a lot of work, breathing for someone."
But to the guy she said, "That sounds intense. Did you call 911?"
The answer, as it usually is, was "No."
"They'll say that their friend is fine and that there was no need," Danforth said.
"Implicit in that," Bell said earlier that day, "is that they feel it's not safe. They are afraid the police will come and they'll get arrested."
Back in the van, Danforth said she told the guy what she always does: "You know what they call someone who saves someone else's life?" She paused for a theatrical second. Then she smiled wide and said, "A hero."
She laughed at her own corniness.
"It's so cheesy, but it's true," she said later. "No one calls a heroin addict a hero, but I will sometimes. Or sometimes, depending on what mood I'm in, I'll say, 'Thank you, really, for saving this person's life. There are lots of people in that person's life who would be crushed if they had died. It means so much.'"
On this day, the guy reacted to her praise the way they usually do, she said: "Aw, c'mon," she said, imitating him ducking his head and waving the comment away.
The guy agreed to take the naloxone and took the brief training, too. According to Prevention Point Pittsburgh's numbers, 239 people's lives were saved via naloxone in the last year in the city. And that's mostly, as Danforth said, "drug users saving drug users."
She's heard lots of stories like that. One time, a woman told her that she got a call from a friend: "I'm on the way over, a friend is overdosing right now. Get the naloxone ready."
"She loaded up the syringe and she headed outside with it and -- boom -- she did the shot right through the passenger window," she said. "They don't call 911. That's not happening. It's not safe."
Harm Reducation Warriors
There was another woman, one who reminded Danforth of herself -- "a gutter punk" -- who would always show up at the syringe exchange van and ask for naloxone. She was the one who administered the antidote to her friends when they overdosed. She was, in Danforth's words, a "harm reduction warrior."
She remembers seeing her at the coffee shop in her neighborhood and saying hi. And then she just stopped seeing her. She found out later that she'd overdosed.
"It broke my heart," she said. "I don't know why she was using alone. She had so many more stories in her."
But on this day in the Hill District, by 3 p.m. it had started to drizzle, turning the 85-degree day steamy, and Danforth was packing up. On most days, she'll see up to 25 people, most of them regulars. But today, her numbers were off: Danforth didn't see her regulars and only 14 people showed up. But at least half of those were picking up for friends, too, so she figured they'd served about the regular number of people, all told.
"I know, I'm bad at guessing," she said with a laugh. Still, they saw five new people, and gave out four naloxone kits. So that was good. She was glad to see the newcomers.
It's this community -- what Danforth called an "anonymous community of support" -- that she thinks the syringe exchange really provides. It's one of the few places where people can just show up, be honest about what they're doing and ask someone to look at their arm and say, "What do you think?" Sometimes Danforth will tell them that the Sunday clinic has a wound care clinic and nurses who will mark veins so you can find them more easily.
But usually, she takes her cues from them. That's what harm reduction is about. People get to make choices.
"I don't need to see them every week," she said. "I don't mind if I give them more than they're going to need for a week. If we want to get a herd-like vaccine coverage going here, we need to have as many clean needles out there as possible."