What the needles said
Yale scientists couldn’t test drug users for HIV so they followed the hypodermics instead—and proved the worth of one of the nation’s first legal needle exchanges. A decade later, countless lives have been saved as a result.
On a balmy day in November 1990, a battered van that once delivered loaves of bread to Yale University dining halls set off on a voyage through New Haven’s inner-city neighborhoods. Its cargo? Clean syringes for the city’s drug users.
No one knew whether needle exchange would do what was expected of it—slow the spread of AIDS—because supporters lacked the scientific evidence to confirm what intuitively made sense, that clean needles were less likely to spread disease. What they did know was that other approaches had fallen short. They’d been handing out condoms, bleach kits for cleaning needles, and brochures with advice on preventing HIV infection. But drug users who used needles still made up 80 percent of the AIDS cases in New Haven.
A lot was riding on the program. It had taken three years of coalition and consensus building to persuade a wary state legislature to pass a bill exempting the program from laws that made needle possession a crime. Scientific data on the efficacy of clean needles were scarce and weak, and distributing clean needles was a political minefield. To succeed, the needle exchange had to win the trust of New Haven’s drug users. That’s why the outreach workers on the van were elated that day, November 13, as they reached their first stop on Congress Avenue in the Hill neighborhood. “We had people waiting for us,” remembered Dominick Maldonado, one of the city’s first AIDS outreach workers. Kaveh Khoshnood, Ph.D., assistant professor of epidemiology, then a graduate student in public health, was also on the van. “We had no idea whether people were going to come to this official program but, indeed, they came,” he recalled. “The word got out rather quickly that this program was legit, that you wouldn’t get arrested by the cops. It was reassuring to know that people trusted the program and trusted the staff.”
Before a year had passed, needle exchange proponents would have more cause for elation. A study by Yale faculty would prove that the program reduced the incidence of new HIV infections by a third. The study would be a watershed in the history not only of needle exchange, but also of public health—the first that addressed the key question of whether clean needles would prevent AIDS. Other communities across the country would follow New Haven’s example. The reaction would not be entirely positive. The coalition that came together around needle exchange—local politicians, local health officials and Yale students and faculty—would withstand pressure from federal officials who felt that distributing syringes encouraged
Last November, city officials and Health Department staff joined Yale faculty to celebrate 10 years of New Haven’s needle exchange program. Over the past decade the rate of infected needles in the city has dropped from 65 percent to below 40 percent. More than 1,000 drug users have found their way into treatment through the needle exchange program. And the drop in the number of new AIDS cases, from 121 in 1991 to 38 in the fiscal year ending July 2000, is due in large part to programs such as the needle exchange. New Haven’s needle exchange van still plies the streets of the city, offering syringes on its regular route. Nationally, the number of needle exchange programs has grown to more than 150, according to the North American Syringe Exchange Network, a support organization based in Tacoma, Wash.
The New Haven program’s beginnings go back to the mid-1980s. “Very little was being done to educate the drug users on the street about the dangers of HIV,” said Maldonado, then a drug counselor. At the urging of Alvin Novick, M.D., a Yale professor of biology, then-Mayor Biagio DiLieto created the Mayor’s Task Force on AIDS in 1986. He provided funding and a full-time coordinator. Soon the city health department hired three full-time outreach workers to work with drug users, one of whom was Maldonado. “Immediately we hit the streets,” Maldonado said. “At the time we just had the bleach, the water, the pamphlets and the condoms.” But the health workers had begun to think about needle exchange. “We were called crazy,” Maldonado said. “We were told it was political suicide, that this would never happen in Connecticut.”
The model for needle exchange came in 1984 from Amsterdam, a city known for its tolerant attitude toward drug use. When an inner-city pharmacist stopped selling syringes, the city’s Junkie Union, worried about hepatitis B infection, organized its own syringe exchange. Two years later needle exchange remained a radical idea in the United States, and only one such program was operating here. The AIDS Brigade, the nation’s first needle exchange, was a rag-tag, underground operation run by a Yale student of public health. And it was based in New Haven.
Jon Stuen-Parker is a testament to the eclectic admissions policies of the School of Medicine. In his self-published autobiography, From Jail to Yale, he describes his transformation from an addict who broke into pharmacies to steal drugs, to convict, to medical student. His tenure at Yale was anything but conventional. He started in 1980, and by 1983 he and fellow medical students had begun educational outreach to drug users. In his hometown of Boston, Stuen-Parker had begun another outreach program, again trying to educate drug users about the dangers of AIDS. The spark to his activism, he said, was a guest speaker at the medical school who angered him by saying, “Don’t waste your time trying to educate the addicts. They’ll never change their behavior.”
By 1986 Stuen-Parker and some of his classmates had opened a storefront outreach center for drug users on York Street in New Haven. Later that year Stuen-Parker was asked to leave the medical school after failing Step I of the medical boards three times. He attributed his failure to dyslexia, but school officials recommended that he spend more time hitting the books and less time on his outside activities. Stuen-Parker said that before his expulsion, he refused a request from school officials to shut down his outreach center. He continued his studies toward a public health degree, which he received in 1992. He also continued his outreach until a Boston drug user’s act of generosity showed him another approach to harm reduction. At an outreach meeting the drug user handed out seven clean syringes. “They were going for $5 apiece, but he felt he wanted to give something back,” said Stuen-Parker. Soon Stuen-Parker was using his earnings as a Boston cabbie to buy syringes legally in Vermont and exchange them in Boston and New Haven shooting galleries. “You’d walk in the door and people would be sitting there with needles in their arms,” Stuen-Parker said.
Khoshnood, then a public health student interested in AIDS prevention, recalled meeting Stuen-Parker on a Friday night in 1988 at the corner of Chapel and College streets to discuss needle exchange. “I wasn’t ready to go out on the street. I just wanted information, but Jon wasn’t going to spend a lot of time explaining things to me,” Khoshnood said. Instead, Stuen-Parker took Khoshnood to a housing project on Dixwell Avenue, where Stuen-Parker handed out clean needles and collected dirty syringes in a bucket. The bucketful of needles sat in a corner of the storefront outreach center on York Street. “We weren’t that careful, now that I think back,” Khoshnood said. “We did start using thick gloves.” Much later those needles would play a role in the government-sanctioned needle exchange program.
City health officials were aware of the underground exchange, but were taking a different course. Where Stuen-Parker could be provocative—he courted arrest by handing out needles in sight of police officers—the city’s AIDS workers wanted to build support for needle exchange. To those promoting needle exchange, Stuen-Parker was a mixed blessing. “He took chances before we did,” said Maldonado. “But Jon became very possessive of needle exchange. He felt no one could do it but him.” Stuen-Parker, however, said his AIDS Brigade was always open to working with others. “We hoped our actions would create a green light for others to do needle exchange,” he said. “We wanted to get others involved.” But he felt the New Haven outreach workers weren’t doing enough, that they seldom appeared in the drug-using community.
When it came time to approach the state legislature for permission to embark on a needle exchange program, city officials kept Stuen-Parker at arm’s length. “We weren’t about to be extolling the virtues of the underground exchange,” said Elaine O’Keefe, who headed the city Health Department’s AIDS division and is now health director for the town of Stratford. “Even if we felt their work had public health merit, aligning with the radical fringe would have diminished our credibility in the state legislature and with other decision makers whose support was critical.” Tensions persisted between Stuen-Parker and the city’s AIDS workers. Two members of the AIDS Brigade, Khoshnood and Peter Fisher, left to form their own needle exchange, AIDS Community Educators, which collaborated with the city program. Stuen-Parker eventually returned to Boston, where he runs the National AIDS Brigade, which provides clean syringes and runs education programs around the country and abroad.
To make their case before the legislature, Maldonado, O’Keefe and AIDS task force coordinator Sher Horosko enlisted as much support as possible, even from the city’s drug users. The city health workers wanted to know why addicts shared needles. The answer was disarmingly simple. Needles were hard to come by, and mere possession could land a drug user in jail. “They told us, ‘We share needles because we don’t have access to them. If we had them there would be no need for sharing,’ ” Maldonado said.
The group had a tough sell even in New Haven, where the task force itself was divided on the issue. Resistance to needle exchange was strongest among clergy in the African-American communities hardest hit by drugs. “It had the appearance of giving approval to drug use,” said State Rep. Bill Dyson, a New Haven Democrat who shepherded the needle exchange bill through the state legislature. Nevertheless, advocates built a consensus. In the winter of 1989 a delegation of public health officials, outreach workers, expert witnesses and city leaders made the case for needle exchange before the state legislature’s health committee. The committee turned them down. “We were told not to come back,” O’Keefe recalled.
Over the next year the group marshaled more support. Quick to come on board was the new police chief, Nicholas Pastore. “We wanted to do our best to take dirty needles off the streets so they wouldn’t endanger children or police and firefighters,” said Pastore, now a research fellow in New Haven for the Washington-based Criminal Justice Policy Foundation. “I also believe fewer people should be coming into the criminal justice system for these kinds of reasons.”
In the summer of 1990, New Haven needle exchange advocates returned to Hartford. “There was just a larger coalition,” said Khoshnood. “We had physicians, we had public health officials, we had the police, we had policy makers. It was a critical mass.” The health committee reversed itself and the full legislature approved a needle exchange program in New Haven, with funding of $25,000. But there were strings attached. The program would have to evaluate its results within a year. The legislature wanted to know how many needles came back to the program, whether the program led to changes in drug users’ behavior, how many users entered treatment and whether the program encouraged drug use.
At the time there were scarce data on needle exchanges. A handful of programs were operating in the United States—in Washington, Colorado, Oregon, California and New York—but most evaluations came from abroad. “The research that was done in Britain and Australia was often based on self-reported behavior, often based on small sample sizes and often unpublished,” said Peter Lurie, M.D., M.P.H., a leading researcher on the public health implications of the AIDS epidemic. When the evaluation of New Haven’s needle exchange was published, Lurie was working with the Prevention Sciences Group at the University of California-San Francisco.
Novick, who chaired the city’s AIDS task force, went to his friend Edward H. Kaplan, Ph.D., then an assistant professor in the School of Management. Kaplan’s mathematical modeling approach to HIV infection had caught Novick’s eye and the two had become collaborators. City health officials, more concerned with implementing the program than analyzing it, reluctantly asked Yale to evaluate their program. “We were very against the evaluation,” Maldonado said. “We didn’t feel it was a time to do research.”
The city health workers imposed two conditions that shaped Kaplan’s study. Drug users could not be tested for HIV infection. “The fear was you would scare people away,” Kaplan said. The next condition, he recalled, went roughly like this: “You can’t have a whole bunch of Yale students climbing all over the clients with surveys the size of telephone books.” In other words, the people who would use the exchange, benefit from it and serve as the prime source of information about its effects on their behavior were off limits. And, in addition to the other restrictions, the $25,000 the state had allocated for the program was barely enough to cover costs, let alone fund a study.
For Kaplan, who had written a paper entitled “Needles That Kill,” the solution was obvious. “You want to look at this from the perspective of the needles,” he said. “It was like looking at malaria from the perspective of the mosquito.” His idea? “We can’t test people,” he said. “Is it OK if we test needles?” If needle exchange reduced the number of new HIV infections, it stood to reason that used needles would be less likely to carry traces of HIV.
There was only one problem. Kaplan didn’t know whether laboratory science was up to the task. He sought help from Edwin C. Cadman, M.D., then chair of the Department of Internal Medicine at the medical school. Cadman, in turn, went to an epidemiologist who was struggling with his postdoctoral work and looking for a new project. Cadman, now dean of the John A. Burns School of Medicine at the University of Hawaii at Manoa, offered to find a lab and money in his budget for the needle exchange evaluation. The postdoc mulled over the proposal for about an hour. “We decided,” said Robert Heimer, Ph.D., now associate professor of epidemiology, “that using the very newly emerging polymerase chain reaction technology would be a feasible and scientifically exciting way to try to do this. Nobody had tried to look at HIV in white blood cells sitting for who knows how long in the barrel of a needle.” To see if it could be done, Heimer turned to the bucket of needles that had been gathering dust in a corner of the AIDS Brigade’s storefront.
Working with the needle exchange team, Kaplan and Heimer devised an elaborate system to track the needles. They bought European-made syringes that would stand apart from domestic ones. Each needle had an ID number. Drug users signed up for the program anonymously and were given an identity of their choosing, often a pseudonym that showed some humor, such as “Bugs Bunny” or “Dan Quayle.” Khoshnood, who knew many drug users from his years with the underground exchange, conducted a brief interview with each client to gather demographic data. Users received one clean syringe for each dirty syringe they returned to the van. Logbooks recorded who took a needle and who returned it, when and where the needle left the van and when and where it was returned. Incoming needles went to Heimer’s lab for testing. Once a week, data from the lab went to Kaplan’s office. “The level of infection went down as the number of needles in circulation went up,” Kaplan said. He found another correlation. The longer a needle was in circulation, the more likely it was to come back HIV positive. “The most compelling data were the testing data, which demonstrated that the percentage of infected needles had decreased,” said Heimer. “Ed, with his mathematical modeling, had concluded that there was a one-third reduction in new infections.”
About 700 of the city’s estimated 2,000 injection drug users participated in the needle exchange. Kaplan used a statistical sampling design, then applied “circulation theory” to gauge the impact of clean needles. Preliminary results found that 44 of 48 needles—92 percent—from a shooting gallery tested positive for HIV. A test of 160 needles from the street found 67.5 percent to contain HIV. As the program continued, a sampling of 581 street needles found that only half tested positive. Six months after the exchange began, 26 percent of needles returned to the program showed traces of HIV. New infections, Kaplan reported, had dropped by a third. Without needle exchange, he projected, 64 drug users out of a thousand would become infected with HIV. Once syringes became available through needle exchange, HIV would infect only 43 in a thousand.
In July 1991, Heimer and Kaplan announced their results. “When the report came out and hit the front page of The New York Times, that was a huge deal,” said Lurie, now deputy director of Public Citizen’s Health Research Group in Washington, D.C. “That put needle exchange research and the programs themselves on a vastly more secure footing. It added a measure of credibility to the programs and provided a scientific basis that had not been there before. It provided a number that people could use, and still do use, as an estimate of the effectiveness of needle exchange—the well-known one-third reduction.” Other communities approached New Haven for help in starting their own needle exchanges. “We could have been on the road every other week,” said O’Keefe, the former AIDS division director. “There was a heavy demand placed on the New Haven program to go out and speak to other communities and groups that were trying to get needle exchanges in place.” The Yale study led David Dinkins, mayor of New York City at the time, to reverse his opposition to needle exchange. Kaplan and then-Mayor John Daniels of New Haven, a former opponent of needle exchange, sang its praises on national television programs.
But attacks quickly followed. Bob Martinez, the nation’s drug czar in the early 1990s, weighed in against the Yale study and its authors. He called the study flawed and said that there was no evidence the needle exchange slowed the spread of AIDS. Charles Rangel, a Democratic congressman from New York City and a critic of needle exchanges, asked the General Accounting Office to review Heimer and Kaplan’s research. The Centers for Disease Control and Prevention (CDC) commissioned a report on needle exchange from scientists at the University of California. Their report, with Lurie among the authors, included a chapter on the New Haven evaluation project. Both reviews confirmed the study’s conclusions. The CDC report went further, saying the Yale study understated the value of needle exchange. Kaplan’s modeling approach won him the prestigious Franz Edelman Award from the Institute of Management Sciences. But the attacks continued.
“I don’t think we were quite prepared for the politics of it all,” said Kaplan. “The program generated data that suggested it did work. That led to Rob [Heimer] and myself being painted as activists and advocates.” Kaplan offered to discuss his findings with officials at the Office of National Drug Policy, but received no reply.
“When we began the work, people opposed to needle exchange said there is no evidence it works,” Heimer said. “After our report they had to modify that statement to say there is no good scientific evidence. After the various panels of inquiry had concluded that our work was scientifically valid and independently verified, they were left saying that needle exchange sends the wrong message. The debate had been taken out of the realm of science and placed entirely in the realm of politics and morality.”
The years that followed saw a few victories for needle exchange. The state of Connecticut implemented five other programs and legalized over-the-counter sales of syringes. Other communities, most notably New York City, followed New Haven’s example. As of last year 158 needle exchanges were operating in 36 states, the District of Columbia and Puerto Rico, the North American Syringe Exchange Network reports. In 1998, however, President Bill Clinton disappointed advocates by refusing to allow federal funding of needle exchanges. And threats to the availability of clean needles remain. Bridgeport police argued that the 1992 state law legalizing over-the-counter sale of needles covered only drug users participating in needle exchange programs. A federal judge found otherwise and in January 2001 enjoined the police from arresting people for possession of syringes.
The New Haven needle exchange program has left a legacy of lessons for other communities as well. The long period of consensus building and the support of Daniels, the city’s first African-American mayor, and police chief Pastore were crucial to the program’s success. And there were by-products. The van offered more than needles. About one in seven of the original 700 program participants entered drug treatment, according to city officials. And there was no evidence that the needle exchange encouraged drug use. The van’s client base, which included people of all social classes from 26 communities in Connecticut, remained stable.
Kaplan and Heimer’s methodology remains a landmark in evaluating needle exchanges. “In terms of proving the efficacy of needle exchange, I don’t think it gets much better than this,” said Lurie. “The Yale research was, for its time and in some ways still, the most sophisticated attempt to evaluate needle exchange, not only because the methods were sophisticated, but also because it tried to answer the central question around needle exchange—whether the programs really reduced the incidence of HIV.”
“This was as good a documentation of effectiveness as had ever been seen,” said Michael H. Merson, M.D., dean of public health at the medical school, recalling the excitement generated by the New Haven study. In 1991, when Kaplan and Heimer announced their results, Merson was working on international AIDS programs at the World Health Organization.
Despite their effectiveness, Merson sees little willingness in this country to embrace needle exchange programs as part of federal harm reduction measures. Although the Clinton administration declined to fund them, federal officials endorsed needle exchanges as an effective prevention measure. Merson expects little support from the Bush administration. “It’s evident, at least for the foreseeable future, that there isn’t going to be any change in federal policy that would allow federal funds to be used for needle exchange programs,” Merson said. “What is unfortunate is that there are effective prevention interventions against HIV, such as needle exchange programs or distributing condoms in schools, which are judged morally rather than from the public health perspective. That is why this epidemic continues to be a major problem in this country.”
Although the New Haven program is active, the city’s original needle exchange van is long gone. Painted with bright murals by a Yale librarian and city high school students to cover its police-blue hue, the first van has been replaced several times. The new van runs a regular route five days a week through the city’s neighborhoods and even makes house calls. From July to September of 2000, 518 drug users availed themselves of the van. The number of people using the van may have declined since passage of the 1992 state law that allows pharmacists to sell syringes without prescriptions. The van still leads drug users to treatment programs and since 1997 it has operated with the Community Health Care Van, staffed by a physician assistant and outreach workers. “It is clear that needle exchange does have an impact,” said Matthew F. Lopes, M.P.H. ’77, director of the city Health Department’s AIDS division. “Connecticut has been forward thinking in allowing it to exist for 10 years.”
Kaplan was even more emphatic when he spoke at the ceremony marking the program’s 10th anniversary last fall. “In simple terms,” he said, “the program has saved lives.”