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Fear of Needles

From two to three o’clock on Tuesday afternoons, the New Haven syringe exchange van parks on the corner of Grand Avenue and Ferry Street in Fair Haven. It’s here that George Bucheli, HIV counselor and educator, takes dirty syringes from intravenous drug users and provides them with sterile ones in return.

“This stop’s been hopping lately,” Bucheli told me. “We’ve been getting a lot of young male clients. Young. I mean like 19, 20 years old, Latino, white. From other places, too—East Haven, Waterbury, Branford.”

Across the street from the van is a Rite Aid Pharmacy. In Connecticut, the sale and possession of syringes without a prescription has been legal since 1993. This Rite Aid won’t sell them without a prescription, Bucheli told me. It’s easy to understand why. Who but a drug user wants to buy syringes without a prescription? And why condone—indeed facilitate—drug use?

From a public health perspective, the answer to these questions is simple. When drug users have access to clean syringes, they don’t need to share. When they don’t share, they don’t transmit blood-borne diseases. In 2009, the Center for Disease Control estimated that injection drug use caused over four thousand new HIV cases. It’s the number one cause of hepatitis C transmission. All eight federally funded reports on syringe exchanges that have been published conclude that the programs do not increase drug use. In fact, if the programs are structured properly, they serve as an important point of contact between drug users and treatment. And the programs are cheap. Syringes costs about a dollar apiece. On average, the lifetime cost in medical care for a person with HIV/AIDS is between $405,000 and $648,000.

From a political perspective, things are more complicated. Ever since the concept of syringe exchanges was introduced in the late eighties, it has been a tough sell to politicians who believe the program “sends the wrong message” about drug use. In 2009, there appeared to be progress in the air when Congress lifted a twenty-one year ban on federal funding for syringe exchange programs. But this sense of progress was short-lived. In December 2011, Congress reinstated the ban.

The ban inspired a few stories in the media, but not many. It was passed just over a week before Christmas, as one of many measures in an omnibus spending bill, needed to keep the federal government funded for the rest of the fiscal year 2012. Most people were happy that the federal government would keep operating through June 2012. The new barrier to preventing HIV transmission turned few heads.

I met Bucheli on what was a quiet day for him. All his colleagues were out: one was recovering from back surgery, one’s father had died recently and one had called in sick. Because of the rain, few clients were coming to the van.

The van is not really a van at all—it’s a 1996 motor home. It contains a couch and dining booth upholstered in neutral tones. Bucheli’s clipboard is stowed in what was once the kitchen sink. Syringes and other supplies—alcohol swabs; hand sanitizer pads; cotton; cookers, or bottle-cap sized containers used to dissolve and mix drugs; and ties, for enlarging veins—occupy the kitchen drawers where some family once kept their dining utensils on a camping trip. A red sharps container sits on one side of the dining booth.

“All of the syringes that we collect get melted and get out of circulation,” said Bucheli, slapping the sharps container. “When that doesn’t happen, they end up in the garbage and they end up in the park. People are shooting up at Long Wharf, even tricking, hustling.” He clarified. “There’s a lot of dudes I know, who in order to shoot up, they have sex with men at these parks.” Bucheli used to go running in the area and would pick up the used syringes and throw them away. The New Haven Health Department reprimanded him for fear he might sue the city if he was accidently pricked.

Bucheli’s interest in the cause is the product of personal experience: he is an ex-user. His history gives him a lens through which to understand his clients’ experiences. The job involves a lot more than handing out syringes. He and his colleagues provide HIV counseling as well as testing. When clients want to quit using drugs, Bucheli can help them get into local treatment programs, for which there is often more demand than availability.
Having worked on the van since 1993, Bucheli knows all of the drug treatment programs in the area. He listed them according to their merits. South Central Rehabilitation Clinic on Cedar Street is good, but they require a photo ID, birth certificate, and social security card. Few of his clients have these documents. He often brings people to Central Dupage Hospital in Middletown; they take anyone he refers. Milestone Alcohol and Drug Treatment Center is ninety miles away in Putnam, Connecticut, but it’s one of the few places that take women who are pregnant or have children with them.

Long-term treatment programs like the Carnes Weeks Center in Torrington accept clients for rehabilitation programs. “What’s cool about Carnes Weeks is that if I have someone who is just doing crack or just doing cocaine, they’ll take them,” said Bucheli. (There are no pharmaceutical treatments for cocaine addiction.) “They’ll just give them a thirty-day break, and sometimes that helps. When you haven’t done coke for a while it just clears your head, makes you less paranoid. You eat more, start thinking clearer.”

Twelve years ago, Bucheli had a relapse with crack. “By that time, I had gotten hundreds of people into treatment, and I couldn’t do anything for myself,” he recalled. A close friend realized that something was amiss, and called the New Haven Employee Assistance Program.
Bucheli brought up his substance use history without prompting. I think he wanted to teach me something. Unlike many of the clients he works with, he had a safety net: a friend who would help, easy access to a program, a job that wouldn’t fire him. Since Bucheli was talking freely about his personal life, I thought it was as good a chance as any to ask him a personal question.

“Are you HIV positive?”

“No,” he responded, but then changed his answer. “Actually, you know what, even though it’s none of your business, I am HIV positive. It’s one of the things that motivated me, because if there was an exchange program when I was getting high, I wouldn’t be positive.”

Bucheli and I discussed whether I would include his HIV status in this article. Initially, he was not comfortable with the idea. My question, intrusive and unexpected, embarrassed both of us. I tried changing the topic.

“What do you like best about this job?”

“The other day, one of the sex workers, an IV drug user, came to see us at the last stop,” said Bucheli. The woman had completed drug treatment. “She looked great, she had her hair done, she hugged us, she kissed us, she just looked so beautiful. There’s no words for it, just felt really good to see her like that, and she was so grateful. Sometimes it happens like that.”

In New Haven, the battle for a syringe exchange program began in 1987. That year, the city began funding street outreach workers to seek out intravenous drug users in the community. They distributed condoms, information on HIV/AIDS, and bleach for cleaning syringes.

At the time, New Haven was the epicenter of the HIV crisis in Connecticut. More HIV positive individuals lived here than anywhere else in the state. Today, it’s hard to imagine what that meant. HIV/AIDS is now a chronic health condition. With the antiretroviral drugs that are available, HIV-positive individuals can achieve clinically undetectable viral loads. People don’t look sick and they can live long, productive lives. In the 1980’s, an HIV diagnosis was considered a death sentence.

“There were just so many people that were impacted and dying at a very young age,” recalled Elaine O’Keefe, executive director of Yale’s Center for Interdisciplinary Research on AIDS. At the time, O’Keefe worked at the New Haven Health Department. “It was traumatic. It was actually traumatic. I know at the time we used to use a lot of military language and I disparaged that. I think back, and I can understand why. There were a lot of casualties from this epidemic and it didn’t have to happen.”

By 1987, drug use was the primary cause of HIV transmission in New Haven. Syringe possession without a prescription was illegal, and syringes were hard to come by and expensive. Addicts would go to shooting galleries, where they could rent syringes to get high. After shooting up, they would clean the syringes in a pail of water.

The Mayor’s Task Force on AIDS, established in 1986, guided the city’s response to the epidemic. The committee was largely the brainchild of Al Novick, a Yale biologist who in the mid-1980’s shifted from his work on bat sonar navigation to research the HIV/AIDS crisis. The street outreach program was the product of lobbying by the Mayor’s Task Force.

“The notion of actually going out and working with people who were actively engaged in illicit drug use and not trying necessarily to change that behavior was quite radical,” said O’Keefe. “The bleach was so fraught with emotion. People thought: this is condoning drug use.”

To those who knew the situation on the ground, providing syringes made sense. Syringe exchanges had started in Amsterdam, in 1984.  By 1987, an illegal syringe distribution program was running in New Haven, the first of its kind in the United States. Jon Stuen-Parker, a former addict and a student at Yale School of Medicine, had started an HIV/AIDS outreach group called the AIDS Brigade. With his headquarters in a storefront on York Street, Stuen-Parker distributed syringes in shooting galleries in Boston and New Haven. He bought the syringes in Vermont.

While providing needles illegally provided immediate relief, it was not an option for the Mayor’s Task Force on AIDS. Nor would it improve perceptions of syringe exchanges, in an age more hostile toward drug use than today. Myths were common: addicts were on suicide missions; they shared syringes ritualistically.

To provide evidence for the utility of a syringe exchange, the Mayor’s Task Force had city outreach workers survey drug users about why they shared syringes. The results were unsurprising. Addicts were sharing needles because they feared arrest and because needles were difficult to buy on the streets. In the research, addicts also complained about drug treatment programs. The waitlists were long. There were not supportive services like childcare available during treatment. There was not enough rehabilitative training to remain drug-free after treatment.

With evidence in hand, the Mayor’s Task Force began a campaign to reform the approach to substance use and HIV at the state level. They called for AIDS education and outreach, decriminalization of possession and sale of syringes, expanded drug treatment services, and the establishment of legal needle exchange programs. They met with the police force, members of the criminal justice system, those involved in drug treatment, and other community-based organizations to educate these groups on the potential value of needle exchanges and to garner their support. Talking with the drug users was also important. “We wanted to make sure that we were not making assumptions without touching base with the people that were going to use the interventions,” said O’Keefe.

In early 1989, the Mayor’s Task Force presented a proposal for decriminalization of the sale and possession of syringes to the Connecticut State Public Health Committee. The hearing was a failure, according to O’Keefe. “Members of the legislature said, ‘We can’t do this; don’t even come back.’”

While I was on the van, a new client approached. Bucheli sat down with him at the dining room table to complete an initial intake form. As in a clinic, all client information on the Community Health Care Van is confidential.

Bucheli gave me a copy of the intake form: What is your drug of choice? How many times a day are you shooting? Where did you usually get your syringes? Have you ever been to a drug treatment program, and would you like a referral? What is your HIV status? This question is multiple choice: Positive, Negative, Don’t Know, Don’t want to disclose.

After the forms were completed, Bucheli turned to the kitchen drawers. He filled a brown lunch bag with supplies. “If you ever want to get tested, if you ever want to go to treatment, whatever you want, whenever you’re ready, let me know,” he said to the client. He gave him a pamphlet on safe injection procedures. With brown bag in hand, the man was on his way.

Bucheli turned back to me. “Basically,” he said, “that’s it.”

In March 1990, the Mayor’s Task Force on AIDS returned to the Public Health Committee for a hearing on the decriminalization of possession and sale of needles without a prescription. A year of dedicated lobbying had followed their initial rejection. Elections for the mayor of New Haven were held in 1989, and the Mayor’s Task Force campaigned to make sure that all candidates would support their policies if elected. They gained the official endorsement of public health organizations. They found state legislators who would co-sponsor a bill, William Dyson of New Haven and Joseph Grabarz of Bridgeport.

At the hearing, the results of a year of advocacy were mixed. The committee was more receptive, but significant compromise was required for the bill to move forward. In the end, the state legislature approved one demonstration syringe exchange program for one year. The program would be exempt from legal restrictions on injection drug use, but the laws would be maintained in the rest of Connecticut. The state legislature chose New Haven as the demonstration site. The bill passed successfully through the state House and Senate and was signed into law in June 1990.

“It was less than what we wanted,” said O’Keefe, “but I can tell you we were thrilled to have done that because there were very few places in the country that had even made it that far.” The successful passage of the Connecticut bill was especially remarkable because of the simultaneous closure of a syringe exchange program in New York City, largely as a result of newly elected mayor David Dinkins’ opposition to the program.

Today, victories for the syringe exchange van are still hard-won. The program is still funded by the state, and finances are strained.

The current van is a 1996 model. But to Bucheli, it’s the “new van,” having been purchased by the program last July. The previous vehicle was in bad shape, and had been for some time. A fiscal year 2010 report on Connecticut syringe exchanges notes that the New Haven program was “in dire need” of a new van. “We fought for this,” said Bucheli.

Within thirty days of purchase, the new van’s generator broke. Now, it’s too dark to continue working after 4:30 p.m. As a result, Bucheli and his colleagues have shifted the van’s schedule to complete the stops that were in the evening during the day. They’re missing out on an important time for connecting with clients. No one stops shooting up at four o’clock.

“We have to fight, sometimes the money doesn’t come from the state that fast, either. We’re still waiting on some of the money we got awarded. When that comes, we can get that [the generator] fixed,” said Bucheli.

Nevertheless, the new van is an improvement. For one thing, it’s larger. The old van was too small to draw blood for STD testing, though all of the van’s staff is trained to do so. Bucheli hopes they can start STD testing in the near future.

A lot of the new van’s superiority has to do with what is painted on its side. The old van said “Harm Reduction.”  While harm reduction is not inherently linked to HIV/AIDS, Bucheli believes it helped the van gain its name on the street, the AIDS van. Because of the label, a lot of drug users were reluctant to use its services.
On this van, the words “Outreach Unit” have replaced “Harm Reduction.” Bucheli attributes the new name to a lot of new clients, almost one hundred in the last quarter alone.

The paint on the van’s side has changed, but some drug users still don’t want to be associated with the AIDS van. Some still access the van’s services through friends who pick up needles for them, a process that is termed “secondary distribution.”

“A lot of the time, clients think secondary distribution is a bad thing,” said Bucheli. “I have to reassure them that what you’re doing is a good thing. It’s a great thing.”

When the demonstration program was approved in 1990, it was given a year and $25,000 to make its point.

Approval for the program stipulated that within a year, data be produced on its effects. Given that the $25,000 was barely enough for program costs, the New Haven Health Department was fortunate that Yale was willing to fund the evaluation pro bono. To do the research, Al Novick, chair of the Mayor’s Task Force, recruited Ed Kaplan, a mathematical modeler at the Yale School of Management.

The design of the evaluation was inherently challenging. If it were too intrusive, drug users would not come to the van. For this reason, testing clients for HIV was not an option. Extensive collection of qualitative data—asking the clients about their drug use behaviors—was both intrusive and limiting in terms of the conclusions that could be drawn from it.

Kaplan came up with a solution. Rather than basing his modeling on client data, he would base it on syringes data. If he could test the returned needles for HIV, client involvement in the evaluation could be minimized. Robert Heimer at the Yale School of Medicine was enlisted for the actual needle analysis. To test the needles, Heimer used the polymerase chain reaction, a technique that is now an essential part of biomedical research, but at the time was still emerging.

Each syringe would be given an identification number, and each client would choose a pseudonym to identify him or herself. The program’s workers would record who was given which syringe and when. They would take the same data for returned syringes. In the lab, Heimer would determine which returned needles were HIV positive. Kaplan, in his analysis, would compare the percentage of the program’s needles that were infected to the percentage of needles collected on the street and in shooting galleries that were infected.

Meanwhile, the program design was assembled. Many of the original street outreach workers served as the van’s staff. Yale donated a van that was once used for dining hall deliveries. It was the same color as blue police vans, so it was re-painted a cheerful peachy orange, and adorned with murals by local high school students.

On November 13, 1990, the syringe exchange van set out on its maiden voyage. That day, the program enrolled twenty clients, collecting over fifty needles. Three clients requested drug treatment. Within the program’s first year, over nine hundred clients enrolled and over one hundred were referred to drug treatment programs.

Kaplan and Heimer released preliminary results of their research in July 1991. Fifty percent of the needles returned to the program were HIV positive. In comparison, 68 percent of street needles were positive, as were 92 percent of needles from shooting galleries. According to Kaplan’s modeling, the program decreased the HIV infection rate among clients by 33 percent.

Kaplan and Heimer’s results made national headlines. At the time, data on syringe exchanges was limited. The researchers’ approach was compelling for its objectivity and unobtrusiveness. “People still recognize how extraordinary it is, looking at the needles rather than the people,” said O’Keefe. “It was all that I had hoped for; it was enough to keep the program going.”

The same week that Kaplan and Heimer released their results, the National Commission on AIDS issued a report. Entitled “The Twin Epidemics of Substance Use and HIV,” the report criticized the federal government for its insufficient response to the drug user-driven HIV epidemic. Among its recommendations, the report called for expanding drug treatment services, legalizing the possession of syringes, and developing programs for preventing HIV transmission related to drug use. Three years before, the Mayor’s Task Force had begun campaigning for these same changes. It had taken a few years of advocacy, but in New Haven in July 1990, progress appeared possible.

Before Bucheli began working on the van, he was an advocate. In the late eighties and early nineties, Bucheli was a member of AIDS Coalition to Unleash Power, or ACT UP. At the time, ACT UP participants were nationally famous for their public demonstrations to change AIDS-related policy.

In 1993, Bucheli and fellow ACT UP members in New Haven were disrupting a meeting of the Mayor’s Task Force. They were protesting the fact that drug users were only able to receive ten syringes at a time from the program. As they were dragged out and arrested, one of ACT UP’s police liaisons noticed the health department was looking for an outreach worker for the program. “He said, ‘This would be a great job for you,’ ” Bucheli recalled. Three months later, Bucheli was hired.

When Clinton was elected, the New Haven chapter of ACT UP disbanded. They thought the fight had been won. For syringe exchanges, the early 1990’s did produce some successes. In Connecticut, the state legislature established five additional syringe exchange programs and legalized the sale and possession of syringes without a prescription. The early success of the New Haven syringe exchange program influenced the development of programs nationally, including in Massachusetts and California. In New York, the New Haven results were instrumental in Mayor Dinkins’ decision to revive a syringe exchange program two years after shutting it down.

Clinton, however, disappointed advocates of syringe exchange programs. While he recognized that the programs helped slow the spread of HIV, he refused to lift the ban on federal funding for syringe exchanges that had been in place since 1988. In 2002, Clinton said that he had made a mistake in not supporting syringe exchanges during his presidency. The Bush Administration did not express support for syringe exchange programs.

The New Haven program also did not live up to initial expectations. Funding was perpetually an issue. Staff numbers declined. Hours were cut. The vehicle suffered from mechanical problems.

Frederick Altice, professor at Yale School of Medicine who has been involved in research on HIV/AIDS and substance use in New Haven for over two decades, noticed a gradual decline in the city’s syringe exchange program beginning in 1993. “Then, from about 1998 to 2000, I think you saw a major decline. I think from 2003, they’ve really struggled continuously.”

Bucheli hopes that the program can find new sources of money other than state funding.  The program has recently received a new supervisor, Brooke Logan, and she’s supposed to be good at grant writing. “The thing that’s bad with that is that they’re putting that federal ban back in place,” said Bucheli. “Now it’s over. Unbelievable. Stupid. We’re all going to die.”

It’s clear that Bucheli is upset when barriers stop him from distributing syringes. The program operates as a one-for-one exchange. Clients can only receive as many syringes as they bring back. Clients might come without syringes, or without as many as they need, because they are distributing clean syringes to friends who don’t return them. And they don’t want to be in possession of syringes after using them, for fear of police harassment.

The idea behind a one-for-one exchange is that it prevents people from accidentally getting pricked by needles discarded on the streets or in parks. Kaveh Khoshnood SPH ’89 GRD ’95, a professor of epidemiology and public health at the Yale School of Medicine, explained to me that this concern is only so legitimate. The risk of someone getting infected by an accidental needle stick is not zero, but it’s incredibly low.

In Windham, Connecticut, a syringe exchange program was shut down in 1997 because a child was accidentally stuck while playing in her backyard. “Politicians who don’t like syringe exchanges made a huge deal out of the fact that discarded syringes were here and there,” Khoshnood said. “And somehow they pushed this story. They didn’t understand syringe exchange or didn’t want to.”

In 1993, Altice started a mobile healthcareddprogram—the Community Health Care Van. Its history is closely linked to that of the syringe exchange van.

When the syringe exchange program was started, its initiators knew that the drug users it served needed more than clean needles. Altice began the Community Health Care Van to meet those needs, initially providing HIV testing and counseling, social services, and basic primary care. He waited three years after the syringe exchange was established to enact the plan. “Needle exchange was so polarized as an issue for the communities. At the outset, there was a concern of not doing anything more than syringe exchange just to prove it worked,” said Altice. “We did not want to destabilize the process by adding on too many different things.”

By mid-1992, the effectiveness of the syringe exchange program was well established. Without any outside funding, Altice assembled the Community Health Care Van. The vehicle was donated to him.  Altice was the doctor on board. Yale-New Haven Hospital sent a social worker, and the New Haven Health Department sent an HIV counselor. In the first year, the van went out once a week, following the syringe exchange van to each stop. Clients could go get their syringes and then walk over to the Community Health Care Van for assistance with medical issues.

While the Community Health Care Van worked directly with the syringe exchange van, Altice never intended to be the same kind of state-funded initiative. “At the time, the health department was just not in a position to do anything more than it was doing,” Altice explained. His use of private funding was “the only way it would have happened.”

The van’s history has been one of growth. By collecting data on the van’s services, Altice was able to gain grants to expand its programs. The van was on the streets five days a week by 1996. Today, it offers an expanded range of services, including drug and HIV treatment, tuberculosis testing, vaccinations, and mental health services. The program owns a beautiful, forty-foot mobile clinic, complete with examination and intake rooms.

When the syringe exchange van has struggled, the Community Health Care Van has stepped in to fill the void. Until the early 2000’s, the two vans still went to all of the same stops, but variability in the syringe exchange van’s schedule due to funding issues made this challenging. The Community Health Care Van started to work independently.

“Their hours were cut, their van was broken down, they just weren’t out on the streets,” Altice said of the syringe exchange program at that time. “We would have a lot of drug users who would come in for health services, who were essentially saying, ‘We don’t know what to do. We would like clean syringes.’ ”
In Connecticut, only licensed providers could legally perform syringe exchange. The Community Health Care Van did not qualify as a licensed provider, but Altice figured out another way to make sure users were getting clean needles. He discovered clinicians could legally prescribe needles for HIV prevention, and so the van started doing this in 2002.

I asked Altice what might be done so that Obama repeals the ban in his proposed budget for the fiscal year 2013.

“You mean why has 20 years of evidence, continued advocacy, and support not done its job?” he replied. “At some point, it’s just politics.”

In the United States today, there are 221 syringe exchange programs in thirty-three states and the District of Columbia. It is not known how many have received federal funding since the original ban was repealed in 2009.

“When Obama allowed federal funds to be used for syringe exchange, he didn’t actually allocate any new funds,” explained Khoshnood. “In a sense, I don’t think much happened between when he announced it and when the Republican Congress just reinstated the ban.”

As a student at Yale School of Public Health in the late eighties, Khoshnood was involved in the underground syringe exchange in New Haven. He participated in the initial evaluation of the demonstration program, and has researched HIV/AIDS ever since.

“In some ways, it’s kind of back to square one. It’s unbelievable that in 2012 we have to go right back to what we were doing in the late eighties and early nineties—remind government officials that this saves lives, does not increase drug use, saves money—and it’s a little surreal,” said Khoshnood.

Scientific research is one way to appreciate the value of syringe exchange programs; a second is the people they affect.

To Bucheli, every syringe makes a difference. His ideal syringe exchange would be one that is open twenty-four hours a day. He wishes there was a hotline program, where drug users could call for syringes and a program staff member would go meet them with the requested supplies.

“Sometimes I think I enable,” he said. “But then I figure I’m giving them a clean needle, so it’s a thin line. It’s hard to stop getting high once you start. It was very hard for me to stop, took years.”

The Community Health Care Van and the syringe exchange van still do share a stop, on the corner of Chatham and Ferry in Fair Haven. It’s a high drug use and prostitution area, so it’s a good location.

I went there with Bucheli from Grand and Ferry. The Community Health Care Van was parked on the other corner, looking dry, warm, and inviting in the cold weather. If a client comes on with health problems at this location, Bucheli walks them over to the other van. We walk over too, to say hello.

Bucheli left Chatham and Ferry to pick up some donations. He also was dropping me off back at Yale—I wasn’t going to find a cab willing to pick me up at Chatham and Ferry, he said.

“I appreciate you coming and asking questions,” Bucheli said. He brought up his HIV status. “You can put it in there if you want. I think if other people know, it’s not such a bad thing, ’cause it kind of felt good telling you. Maybe that should be in the article. Makes sense.”

Ten minutes later, he dropped me off on York and Chapel, an intersection very different from the one from which we had arrived. I watched the van pull away, loaded with its cargo of clean syringes to distribute.

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