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Sharing responsibility

“We had so much going for us, and all of a sudden, it just stopped,” Ambritt Myers-Lytell said, pausing and shaking her head. “It was a complete blindside.”

For over 20 years, Myers-Lytell worked for New Haven’s Syringe Exchange Program (SEP), shuttling around the city in a van that offers people who inject drugs clean syringes in exchange for old ones in an effort to curb transmission of HIV. But on Dec. 16, 2016, Myers-Lytell and her colleagues were notified that the city would be terminating the program by the end of the month.

Mayoral spokesperson Lawrence Grotheer told the New Haven Independent that the decision to end the program came in anticipation of the Connecticut Department of Health’s decision to re-evaluate funding for syringe exchange programs in the upcoming year. The shutdown also follows the trend of several cities in Connecticut—including Bridgeport and Hartford—that have transferred their city syringe exchanges to the supervision of other, non-governmental organizations. In fact, New Haven is the last municipality in Connecticut to have a syringe exchange operating out of its own health department.

Around the same time that Myers-Lytell heard she would be losing her job, the Connecticut Department of Health and New Haven Department of Health approached the Yale Community Health Care Van (CHCV) to ask if they would assume the duties and responsibilities of the city’s exchange program. “We already have a ton of people coming in for syringes anyway on our van,” said Frederick Altice, Yale School of Medicine Professor and Director of the CHCV. Besides the city’s own needle exchange, the CHCV was one of the only other organizations working with injecting drug users in a similar manner. Altice said he expects that the contract for the transfer will be finalized “any day now.”

Still, the transition has been abrupt for all parties involved. “The Health Department showed up with boxes of needles and all other kinds of things and just sort of said, ‘This is all yours,’” Altice said.

Although the CHCV can still provide the same syringe exchange services it has in the past, the program won’t have the funding to expand until the contract is settled. This means that some of the unique services offered under the city’s SEP won’t be able to continue until reinstated—as planned—by the CHCV. In taking over as the sole needle exchange program provider, though, CHCV will inherit state funding that will allow it to expand its programs and take up the mantle of many services formerly offered by the city, like the home delivery program.

“The most successful part of the city run program for the past several years was their home delivery program,” said Yale School of Public Health Professor Robert Heimer. “And that is not occurring now, which is too bad because that’s a very good way to get syringes out, especially to the surrounding areas where people are reluctant to come to an open exchange point.”

The transition also raises questions of how the services will be best delivered—and by whom. Myers-Lytell says she doesn’t think the CHCV can operate the SEP with the same kind of trust with communities as the city’s program did. “I know from being an addict that you’ve got to meet the person where they’re at,” she said. “It’s about taking care of the whole person and not just the needle aspect of the person, and that’s what we did. Yale can’t do that.”

As Myers-Lytell and her co-workers fight to get the city’s program back, Altice and Yale gear up to take over their operation. While Altice is confident they’re fit for the job, Myers-Lytell has her doubts.

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The New Haven needle exchange program was born out of an emergency. During the 1980s, HIV/AIDS arrived in New Haven, and with it, a paralyzing fear. “There was a panic and huge anxiety in that time,” said Elaine O’Keefe, Executive Director of the Center for Interdisciplinary Research on AIDS (CIRA) and former AIDS Division Director for the City of New Haven. “None of us had experienced this high concentration of people dying so young, and there was a feeling that we had no power to make change because there were no drugs to treat it.”

In 1986, then-mayor Biago DiLieto established the New Haven Mayor’s Task Force on AIDS in response to the epidemic. According to O’Keefe, most members of the task force were unaffiliated with Yale. “Al Novick was one of the exceptions,” O’Keefe said, pointing to a photograph pinned to the wall above her desk. “His picture is right there. He was a biology professor at Yale, a physician, an activist and very dedicated to the cause. He was actually the first chairman of the task force.”

Over time, it became clear to the task force that while the HIV crisis heavily impacted the gay community, injection drug use was also fueling the epidemic in New Haven. But even though injecting drug use was a major mode of transmission, possession of syringes without a prescription was illegal, which made it difficult for people who injected drugs to acquire clean needles. According to a 1997 Herald cover story, the Mayor’s Task Force on AIDS began to investigate tactics used in Europe to prevent HIV transmission. Needle exchanges seemed to be a promising option, but that would require changing the law.

“The principle opposition—you might call it actively hostile—was from the drug treatment community,” Novick, then-chairman of the task force, told the Herald in 1997. “They said [the program] would give a mixed message that was incompatible with what they were doing, because we were going to make it easier to use, and they had spent their lives trying to get them not to use.”

Meanwhile, underground syringe exchanges had begun to spring up in New Haven in order to meet the needs of those who were most acutely affected by the epidemic. “People were dying around us… My partner and I kicked into survival mode,” George Bucheli, another outreach worker with the New Haven SEP, told the New Haven Independent. “No one was taking care of us, so we had to take care of ourselves.

After three long years of hard lobbying, the Connecticut state legislature finally accepted a bill to legalize needle exchange, which Governor William O’Neil signed into law in 1990. New Haven was given $25,000 from the state to launch a syringe exchange under the condition that they immediately demonstrate the benefits of the program.  

To do this, Heimer and Edward H. Kaplan, professor of Engineering and Public Health at Yale, pioneered a unique evaluation and assessment of the program. Instead of measuring changes in HIV incidence in New Haven or other outcomes that would require screening for the disease, Heimer and Kaplan tested the syringes themselves for the presence of HIV. Their study determined that the needle exchange reduced the chance that a person would encounter an infected needle by 33 percent.

“The most important thing that Yale did for the syringe exchange was to bring that scientific integrity to the process, and they did it so quickly,” O’Keefe said. This model of analyzing the syringes themselves to help determine the success of the program became critical to legalizing needle exchanges elsewhere in the country. Over time, the laws relaxed. It’s now legal to buy syringes over the counter without a prescription. Rates of new HIV infections decreased dramatically.

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“But no good deed goes unpunished,” Heimer said. “And one of the consequences of success is neglect.”

As with many government programs, the city’s SEP has faced the continual threat of losing funds. Every year, the program has had to fight for level financing. “I’ve worked in governmental programs for 25 years, and it’s very hard for government agencies—no matter how progressive—to be able to run government programs that require more flexibility and more resources than they typically have,” O’Keefe said. “They’re always under siege to cut programs and make decisions.”

Many hope that transferring the SEP to Yale will protect it from the threat of strained budgets, thereby preserving the progress that the city-run program has made over the past 26 years.

Myers-Lytell and her colleagues have built the program to provide much more than clean needles. The staff at the city SEP started connecting their clients to drug treatment centers, even coordinating their transportation to and from the facility.

“We did treatment,” Myers-Lytell said. “Then we started bringing clothes in and giving clothes away. Then we got hooked up with the food bank, and the food bank was giving us food every week. We were up to 25 bags when we got laid off.” Bucheli and Myers-Lytell would often home-deliver syringes if clients came from surrounding areas and didn’t have transportation to the van, or were afraid of the stigma attached to coming. Their team had so many individuals sign up for home visits that they had to make these rounds two days a week, in addition to their typical stops. They incorporated educational seminars into their daily routines, covering everything from safe sex to tips on goal-setting.

Underlying Myers-Lytell’s work is a fundamental understanding of and respect for the communities she serves. “Before you even get a van and roll into someone’s community, you need to go do outreach in that community,” Myers-Lytell said. “You need to go get the gatekeepers of the community, talk to the people let them know who you are what you want to do in the community.” Myers-Lytell worries that Yale’s CHCV sometimes lacks this same respect for the communities they want to serve.

O’Keefe also recognized the difficulty of bridging the gap between academic institutions like Yale and the communities they want to help, but she’s hopeful that productive partnerships can emerge. “When I was outside of Yale, I experienced this feeling that there really is an ivory tower. And it’s not just Yale: it’s the separation between academia and practical public health work. It’ll always be there, but the university can certainly contribute a great deal to ending the epidemic.” From O’Keefe’s perspective, the CHCV is a program that helps overcome the chasm between institutions like Yale and vulnerable populations.

“[CHCV] is a Yale connected program and it’s also a community program,” she said. “It’s been community-based for almost as long as the New Haven SEP has existed.”

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Many are hopeful that the transfer will reinvigorate the SEP. “It would send a terrible message if Yale just let the program limp along on state money and not make some commitment to returning the program to be a model-type program,” Heimer said.

The CHCV has already demonstrated a willingness to take on this commitment. Altice is working on plans to expand the SEP to five other sites within the community and is developing a home-delivery model to re-implement the work started by the city-run program. “The idea is that we just need to figure out how to revitalize the program and make it work with a very different model.”

Still, whatever benefits come from the transfer of the city’s program, there have been tremendous costs suffered along the way. Workers who have spent countless hours counseling, educating, and empathizing with their clients have suddenly lost their employment and health insurance. “I just had surgery,” Myers-Lytell said. “It’s like, what do you do, you know? I can’t look for a job because I just had surgery. Work may come, but it’s crazy.”

O’Keefe said she has the “utmost admiration” for the people like Bucheli and Myers-Lytell, who have sacrificed so much for the SEP. “It was extremely difficult work, and you have to be totally committed to it, so I think it’s really, really important that everybody who can contribute to this makes sure that this program continues.”
Ultimately, continuing the program in a way that meets the needs of its clients is what matters most, both to the city’s workers and CHCV. It’s always been about more than needle exchanges. “We got personal with the person,” Myers-Lytell said. “It wasn’t just about the needles. It started out as a needle exchange program, but when you get to know people and you get to know where they’re coming from, it’s so much more.”

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