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Sacrificing Science
and Sensibility
How Squeamishness Over Syringes
Is Stalling Public Health Efforts
on Long Island
 
 

A report by the Long Island Association for AIDS Care (LIAAC)
and funded by the Long Island Community Foundation

http://www.liaac.com/NeedleReport.html

"An impressive body of evidence suggests powerful effects from needle exchange programs. The number of studies showing beneficial effects on behaviors such as needle sharing greatly outnumber those showing no effects. There is no longer doubt that these programs work, yet there is a striking disjunction between what science dictates and what policy delivers. Can the opposition to needle exchange programs in the United States be justified on scientific grounds? Our answer is simple and emphatic -- NO. Studies show reduction in risk behavior as high as 80%, with estimates of a 30% or greater reduction of HIV in IDUs. The cost of such programs is relatively low. Such programs should be implemented at once."
-- National Institutes of Health Consensus Panel in 
Interventions To Prevent HIV Risk Behaviors (1997)
 

"A meticulous scientific review has now proven that needle exchange programs can reduce the transmission of HIV and save lives without losing ground in the battle against illegal drugs [however] the Administration has decided that the best course at this time is to have local communities which choose to implement their own programs to use their own dollars to fund needle exchange programs"
-- U.S. Secretary of Health and Human Services 
Donna Shalala, April 20, 1998

Dear Reader:

Over the course of the last decade, a growing number of Long Islanders have fallen prey to the rapidly expanding and converging epidemics of substance abuse and AIDS.  Though both problems have prompted unparalleled suffering in our community, strained health care delivery and adversely impacted our local economy, neither has been dealt with as a public health emergency. Instead, our deeply ingrained social notions of morality, sin and fear have fostered public policies that have only entangled and exacerbated both epidemics. The results -- nationwide, statewide and here on Long Island -- are both startling and distressing.

Without access to sterile injection equipment, thousands of drug-addicted men and women have shared contaminated needles and become infected with HIV. In turn, they've passed the virus on to their sexual and drug-sharing partners, fueling a fatal epidemic that under most circumstances, is completely preventable.

This report highlights the current status of the AIDS epidemic among injection drug users in our region and explores the public health consequences of practices and laws that limit access to sterile injection equipment. Our findings and recommendations might be considered controversial and counter-intuitive to our "war on drugs", but they merit consideration in the midst of twin epidemics that are claiming far too many lives.

We extend our gratitude to the Long Island Community Foundation, who believed in this project and helped fund this report. We also thank the many Long Islanders living with HIV who shared their experiences and insights with us in such an honest and forthright way. If this endeavor results in a better understanding of the difficulties faced by people with addictions and the specific strategies that could enhance the quality of life for all people living with, and at risk for HIV/AIDS, then we've succeeded.

Yours in the fight against AIDS,

Jeffrey L. Reynolds, MPA
Principal researcher/Author

SUMMARY OF FINDINGS

Despite having more AIDS cases than most American cities and many states, Long Island lags woefully behind other areas when it comes to confronting HIV. A deadly combination of archaic state laws, federal policies and local political sensitivities have kept sterile syringes out of the hands of injection drug users (IDUs). Because drug treatment slots are scarce and recovery from addiction is a complex process, thousands of addicted men and women have become infected with HIV and other blood-borne pathogens through the use of contaminated syringes.

It's been more than 50 years since the spread of serious diseases via improperly-used syringes was first documented, yet attempts to improve a potentially dangerous and rudimentary technology have been thwarted. It's been more than a decade since researchers documented the fact that syringe exchange programs (SEPs) reduce the spread of HIV among injection drug users and save lives, yet Long Island remains one of the few regions of the state without such a program. It's been six years since Connecticut repealed its outdated, seldom-enforced, and deleterious law barring the over-the-counter sale of syringes. New York, on the other hand, still has its version of such a law -- enacted in 1914 -- on the books.

Though politically touchy, adequately addressing the AIDS crisis means taking a second look at our well-intentioned drug control policies, not from a law enforcement perspective, but through the lens of public health. AIDS should not be the cure for addiction it has become. We've figured out how to design medications that help people with HIV live longer, healthier lives. We've figured out how to slow HIV infection rates among gay men through education. We've also figured out that, by increasing access to sterile syringes, we can cut HIV infections by 40% or more. It's time we did it.

We've spent a year reviewing the literature, talking to people with HIV/AIDS who are in recovery or still actively using drugs, gathering statistics, and listening to the experts. Here are the facts as we see them:

FACT: LONG ISLAND CONTINUES TO LEAD THE NATION IN SUBURBAN AIDS CASES

·         With 5,950 AIDS cases diagnosed through June 1998, Long Island has more AIDS cases than any other suburban area in the United States. [1]

·         A total of 85 pediatric cases have been diagnosed on Long Island. [2]

·         It's estimated that at least as many Long Islanders are infected with HIV, the virus that causes AIDS. [3]

·         Long Island has more AIDS cases than 29 individual American states. [4]

FACT: DESPITE OUR NOTIONS TO THE CONTRARY, DRUG USE IS PREVALENT ON LONG ISLAND

·         Estimates suggest that there are at least 200,000 IDUs in New York City alone and 250,000 throughout New York State. [5]

·         Another 250,000 New Yorkers use crack on a regular basis and trends towards polydrug use place these individuals at significant risk for eventual use of injectable drugs like heroin, cocaine and speed. [6]

·         Use of heroin by American high school seniors increased 100% between 1990 and 1996. In 1997, the percentage further increased to 2.1% of American seniors using heroin. [7]

·         Heroin-related admissions for Long Islanders aged 15-24 have more than doubled since 1995. [8]

·         When these numbers are placed against the fact that there are only 600 state certified treatment providers in New York operating 1,264 programs statewide, the relative unavailability of treatment becomes clear. [9]

·         Both Nassau and Suffolk's methadone programs -- considered a last-resort treatment for addicts -- are full and some have long waiting lists.

·         Spokespeople for both the Nassau and Suffolk County Police Departments say that drug-related arrests were up in 1998. [10]

FACT: HIV/AIDS CASES AMONG DRUG USERS CONTINUE TO INCREASE AT AN ALARMING PACE ON LONG ISLAND WITH WOMEN AND RACIAL/ETHNIC MINORITIES BEING HIT HARDEST

·         Injection drug users made up 47% of the AIDS cases diagnosed on Long Island through June 1998 (includes men who have sex with men and inject drugs). [11]

·         An estimated 2,900 adult and infant AIDS cases on Long Island are related to injection drug use. [12]

·         Thirty-nine percent of Long Island men diagnosed to date contracted HIV through injection drug use. Another 7% were men who have sex with men and inject drugs. Of women diagnosed, 49% identified injection drug use as a risk factor. Another 36% identified unprotected heterosexual sex as their risk factor; the vast majority of their sexual partners were injection drug users. This means that up to 85% of AIDS cases among Long Island women are attributable either directly or indirectly to injection drug use -- compared to less than 46% among men. [13]

·         Injection drug use accounted for 39% of cases diagnosed among white Long Islanders through June 1998, but 58% of AIDS cases among Blacks and 47% of cases among Hispanics. [14]

FACT: THE HUMAN AND FISCAL COSTS ASSOCIATED WITH HIV/AIDS CONTINUE TO RISE

·         It's estimated that 64% of those diagnosed with AIDS -- or about 3,800 Long Islanders have died of the disease. [15] More than 1600 of these deaths are directly attributable to the sharing of contaminated needles. [16] Another 450 Long Island AIDS deaths may be attributable to unprotected sex with a drug user. [17]

·         The direct medical costs of caring for a person with HIV/AIDS are estimated at $20,000 per year. [18] If the average life span of a person with HIV has increased to 10 years, then the average lifetime costs are $200,000 in medical costs plus loss of productivity, cost of public benefits, and costs of community-based services.

FACT: THE RE-USE OF CONTAMINATED SYRINGES PLAYS A KEY ROLE IN THE SPREAD OF HIV/AIDS AND OTHER INFECTIOUS DISEASES

·         The reuse of contaminated needles and syringes has long been established as one of the most efficient ways of transmitting HIV and other diseases (eg: Hepatitis B & C) and is analogous to a mini-transfusion of the virus sent directly into the bloodstream.

·         Injection drug users are also at increased risk for endocarditis, abscesses at injection sites and other health risks.

FACT: DRUG USERS SHARE INJECTION EQUIPMENT OUT OF NECESSITY

·         Syringes don't last forever and after repeated use their plungers break down and needles become dull and clog easily. This means that personal syringes don't last very long, forcing users into an almost continual quest for new syringes.

·         Drug users most often cited difficulty obtaining a sterile syringe as the central reason for sharing a syringe or reusing another person's works. Some said they feared arrest for carrying or possessing personal syringes and therefore had to locate another syringe for each shot. Some, with access to syringes through a job or friend, said they had traded drugs for syringes. Some said they had gone to New York City or Long Island "shooting galleries" where drugs and equipment came as a "package." Women, in particular, spoke of being introduced to heroin or cocaine use by a male partner, who also supplied their syringes.

·         Drug users try to avoid sharing syringes, but will do so if necessary -- even if only to avoid the onset of drug withdrawal symptoms.

FACT: DRUG USERS ON LONG ISLAND HAVE LITTLE ACCESS TO CLEAN SYRINGES

·         While Manhattan, Brooklyn, the Bronx, Westchester, Rochester and Buffalo all have syringe exchange programs, Long Island does not.

·         New York is one of only eight states nationwide that prohibit the pharmacy-based sale or possession of syringes without a prescription. [19] This prohibition dates back to 1914 when the Boylan-Town Act became law. [20]

·         Long Island's injection drug users report serious difficulties in finding clean syringes and are reluctant to keep them in their possession for fear of arrest.

·         Some reported traveling into New York City to access syringe exchange sites, but said they did so on an irregular basis and that they if they were unable to make the trip, they would share or rent syringes locally. As "higher quality" drugs have become more widely available in Nassau and Suffolk in the past few years, drug users say they are less likely to travel to New York City.

FACT: SYRINGE AVAILABILITY REDUCES THE SPREAD OF HIV AND OTHER BLOODBORNE PATHOGENS

·         The federal Centers for Disease Control and Prevention (CDC) issued a bulletin in 1997 advising that IDUs unable to stop using drugs should "use a new, sterile syringe to prepare and inject drugs." It also advised that "persons who continue to inject drugs should obtain syringes from reliable sources of sterile syringes, such as pharmacies. " [21]

·         A landmark 1995 review of more than two dozen studies evaluating various aspects of SEPs in the U.S. and abroad concluded that it does. [22]

·         One worldwide survey found that HIV seroprevalence among injection drug users decreased 5.8% annually in major cities with syringe exchange programs, but increased by 5.9% per year in cities without -- a difference of 11%. [23]

·         Syringe exchange programs in 4 major U.S. cities reduced syringe reuse by at least 50%. [24]

·         Regular users of a Tacoma, WA syringe exchange program were more than six times less likely to contract hepatitis B or C. [25]

·         Injection drug users in New York City who used syringe exchange programs were two-thirds less likely to become infected with HIV than those who did not. [26]

·         By one estimate, between 4,400 and 10,000 HIV infections among IDUs in the United States could have been avoided between 1987 and 1995 if the federal government had implemented syringe exchange nationwide. Projected health care cost savings would have exceeded $500 million. Action taken in 1997 could have prevented an additional 11,000 HIV infections by the year 2000, saving more than $600 million. [27]

·         Connecticut deregulated the sale of syringes in 1992. Evaluation studies found a significant decline in street purchases of syringes; a corresponding increase in the sale of pharmacy syringes; a 39% decrease in needle-sharing; a decrease in needle stick injuries among police officers; and no significant problems with syringe disposal. [28]

FACT: SYRINGE AVAILABILITY DOES NOT ENCOURAGE OR INCREASE DRUG USE

·         The National Commission on AIDS concluded in as early as 1991 that "legal sanctions on injection equipment do not reduce drug use, but they do increase the sharing of injection equipment and hence the spread of AIDS." [29]

·         Several reports, including six sponsored by the federal government conclude that access to clean syringes does not increase drug use. [30]

·         Studies have even established syringe exchange programs as bridges to drug treatment programs. [31]

FACT: SYRINGE AVAILABILITY DOES NOT INCREASE THE PREVALENCE OF IMPROPERLY DISCARDED SYRINGES IN THE COMMUNITY

·         No study has documented an increase in improperly discarded syringes following syringe deregulation or the initiation of an exchange program. In fact, pharmacies and exchange programs typically serve as effective collection sites, thereby decreasing the likelihood of problems with disposal. [32]

FACT: THE USE OF SAFER SYRINGE TECHNOLOGIES CAN REDUCE THE SPREAD OF HIV/AIDS AND OTHER BLOOD-BORNE PATHOGENS.

·         The reuse of syringes by drug users and even by health care professionals on consumers, both intentionally and inadvertently fuels the spread of HIV, hepatitis and a variety of other diseases.

·         One of the easiest ways to prevent reuse is to make self-destructing or non-reusable syringes the standard. Former U.S. Surgeon General C. Everett Koop called for the development of such syringes in 1991. [33] 

·         Though the technology exists, it is not widely used. Only about 10 percent of the 6 billion syringes used annually in the United States have safety features. [34]

Chapter 1
THE NUMBERS

The numbers speak for themselves. Still, as startling as the statistics are, they don't adequately convey the devastation caused by the twin diseases of HIV and substance use -- epidemics that owe their inextricable link at least in part, to the use of contaminated syringes. The numbers, pie charts and bar graphs presented in these pages are included -- along with the stories in the next chapter -- in an attempt to convey an accurate picture of where the epidemic's been and where it's going unless we do something to stop it.

With a cumulative total of 125,519 cases diagnosed through June 1998, New York State remains the nation's AIDS epicenter and accounts for almost one in five of the cases in the U.S. [35]

If New York is the national epicenter of the AIDS plague, it's also the epicenter of drug use. Estimates suggest that there are at least 200,000 IDUs in New York City alone and another 50,000 in the rest of the state -- including on Long Island. [36] Another 250,000 New Yorkers use crack on a regular basis and trends towards polydrug use place these individuals at significant risk for eventual use of injectable drugs like heroin, cocaine and speed. [37] When these numbers are placed against the fact that there are only 600 state certified treatment providers in New York operating 1,264 programs statewide, the relative unavailability of treatment becomes clear. [38]

DRUG USE ON LONG ISLAND

Though a variety of drugs can be injected, heroin is the drug used most often by regular injectors. Nationwide, the use of heroin seems to be on an upswing. Use of the drug by American high school seniors, for example, increased 100% between 1990 and 1996. In 1997, the percentage further increased to 2.1% of American seniors using heroin. [39]

Here on Long Island, heroin-related hospital admissions for Long Islanders ages 15-24 have more than doubled since 1995. [40] The heroin overdose death of a popular Oyster Bay high school football player reported in October 1998, sparked renewed concern about a drug once thought to be a thing of the past.

Both Nassau and Suffolk's methadone programs -- considered a last-resort treatment for addicts -- are full and some have long waiting lists.

Dominick Scalise, who runs Suffolk County's five methadone clinics, recently told Newsday, "Our clinics are busting at the seams." [41] He also said that in the past two years, the number of young adults being treated in the program had quadrupled, from about 25 to 100. [42]

Aside from heroin, spokespeople for both the Nassau and Suffolk County Police Departments say that drug-related arrests for other injectables -- like crack and powdered cocaine -- increased significantly in 1998. [43]

AIDS ON LONG ISLAND

Most Long Islanders are shocked to learn that together, Nassau and Suffolk Counties have more AIDS cases than any other suburb in the nation and more cases than 29 individual American states. [44] According to NYS Department of Health figures, 5,950 Long Islanders had been diagnosed with full-blown AIDS through June 1998, of which 2,142 are assumed to be alive. [45] Since clinical advances have forestalled the development of AIDS-defining conditions in many individuals, this number must be viewed the proverbial "tip of a much larger iceberg." At least as many Long Islanders are believed to be infected with HIV, the virus that causes AIDS. [46]

A drop in AIDS cases should not be construed as reduction in HIV seroprevalence and a long term look at AIDS cases indicates that the epidemic continues to spiral out of control here on Long Island. From 1990 to 1996, an average of 557 AIDS cases were diagnosed each year on Long Island. [47] By comparison, the average number of annual cases from 1981 to 1990 was 176. [48]

According to the NYS Department of Health, injection drug users made up 41.3% of the cumulative adult AIDS cases diagnosed on Long Island through June 1998. [49] This means that more than 2400 Long Island men and women have contracted AIDS directly through the injection of heroin, cocaine, methamphetamine and other illicit drugs. Another 307 cases (5.2%) occurred among men who have sex with men and inject drugs. [50]

A total of 581 AIDS cases have been diagnosed among Long Islanders who identified "heterosexual contact" as their primary risk factor. [51] It's believed that unprotected sex with an injection drug user accounts for the majority of these cases.

So, the cumulative number of adult AIDS cases related directly to injection drug use on Long Island? Between 2400 and 2700 cases. The number of cases that may be indirectly related to injection drug use? 581. The estimated total number of Long Island adult AIDS cases directly and indirectly attributable to injection drug use? 2,840.

The federal Centers for Disease Control and Prevention reports that 85 pediatric AIDS cases have been diagnosed to date on Long Island. [52] Statewide numbers indicate that almost 50% of children with AIDS acquired HIV from their moms who were injection drug users, the rest from moms who contracted HIV through unprotected sex, usually with an injection drug user. [53] The vast majority of pediatric AIDS cases on Long Island (and elsewhere for that matter) are directly or indirectly tied to injection drug use.

Injection drug use has quickly become the fastest growing source of all newly-diagnosed cases in Nassau and Suffolk. In 1996, for example (the last year for which complete data is available), injection drug users accounted for 54.9% of the AIDS cases diagnosed during that 12 month period, while heterosexual contact accounted for 18.2% of cases, and men who have sex with men (MSM) accounted for 27%. [54] By comparison, in 1990, injection drug users accounted for 47.1% of cases diagnosed that year, men who have sex with men (MSM) 41.5%, and heterosexual contacts, 11.4%. [55]

Most experts attribute the reduction in HIV-seroprevalance among gay men nationwide to successful prevention education efforts that include risk reduction training and condom distribution. Without such a comprehensive approach targeted towards injection drug users, cases among them and their sexual partners will continue to increase at an alarming pace.

To date, the estimated grand total of adult and infant AIDS cases on Long Island related to injection drug use is 2,900. The current death toll related to injection drug use is 1,205 male IDUs, 403 female IDUs, 188 men who had sex with men and used injection drugs, and 266 women who acquired HIV through unprotected sex, probably with an IDU. What the future holds remains to be seen.

GENDER DIFFERENCES

Women account for 23% of Long Island's AIDS cases -- a number that's significantly higher than the 21.7% seen statewide or the 15.3% seen nationally. [57]

Amplifying national and statewide trends, injection drug use has been a particularly powerful factor in driving the AIDS epidemic among women on Long Island. Consider this: 39% of Long Island men diagnosed to date contracted HIV through injection drug use. Another 7% were men who have sex with men (MSM) and inject drugs.

Of women diagnosed, 49% identified injection drug use as their primary risk factor. Another 36% identified unprotected heterosexual sex as their risk factor; the vast majority of their sexual partners were injection drug users.

This means that up to 85% of AIDS cases among Long Island women are attributable either directly or indirectly to injection drug use -- compared to less than 46% among men. [58]

RACIAL DISPARITIES

White Long Islanders accounted for 52.7% of the AIDS cases diagnosed on Long Island through June 1998, while blacks accounted for 36.2% of cases, Hispanics for 10.4%, Asian and Pacific Islanders for .36% and Native Americans for .09%. [59] These numbers are particularly startling considering that blacks and Hispanics each make up less than 10% of Long Island's population.

The numbers, however, become more shocking given current trends that multiply the disparities. In terms of AIDS cases diagnosed during 1996, 44% were white; 42.2% were black; 12.8% were Hispanic; 1% were Asian and Pacific Islanders; and none were Native Americans.

If AIDS has had a disparate impact on Long Island's communities of color, so has injection drug use as pathway for HIV infection. Injection drug use, for example, accounted for 39% of cases diagnosed among white Long Islanders through June 1998, but 58% of AIDS cases among blacks and 47% of cases among Hispanics. [60] Injection drug use is driving AIDS epidemic among racial and ethnic minorities on Long Island.

GEOGRAPHY

Nassau and Suffolk are fairly evenly split when it comes to AIDS cases on Long Island, with slightly more in Suffolk County (49.1% vs. 50.9%). In Nassau, the majority of cases are among residents in the Town of Hempstead, with the remaining cases distributed almost evenly between the Towns of North Hempstead and Oyster Bay. In Suffolk, the Town of Brookhaven had the largest number of cases, followed by the Towns of Islip, Babylon and Huntington.

CONCLUSIONS

It's easy to say that injection drug use is driving the epidemic and in one sense, it is. After all, people whose judgement and judgement is impaired by drugs may place themselves at risk for HIV more frequently than those who are not. Still, it's not injection drug use per se, that exponentially multiplies one's risk of infection, it's the use of contaminated needles or other drug paraphernalia that does so. The reuse of contaminated needles has long been established as one of the most efficient ways of transmitting the virus and is analogous to a mini-transfusion of HIV sent directly into the bloodstream. [61]

Chapter 2
THE VOICES

In an effort to get more information about drug use patterns and better understand syringe practices, LIAAC staff conducted several semi-structured face-to-face and telephone interviews with people with HIV/AIDS who have a history of injection drug use. An additional two-hour focus group comprised of eight former drug users was held at LIAAC's offices in Huntington.

Written consent was secured from all interviewees, notes were taken by investigators during all interviews, and the focus group session was audiotaped. Interviewees answered a series of questions about their drug use (drugs of choice, frequency of use, etc.), their initiation into injecting, their means of obtaining syringes, their willingness or reluctance to share syringes, and their feelings about syringe availability. All were reluctant to have their full names included in this report; in those instances, first names or pseudonyms were used to protect their anonymity.

As previously noted, injection drug per se, does not place someone at risk for HIV. Instead, it is the contamination of injection equipment with blood containing traces of HIV and the reuse of that equipment that exposes someone to the disease. "Injection equipment," includes the parts of the syringe -- the needle, hub, barrel and the plunger -- as well as the "cooker" that is used to heat and dissolve the drug, the cotton that is used to strain out impurities as the drug is withdrawn from the cooker into the syringe and the water that is commonly used to rinse the syringe before reuse.

Here's how it works: Once the drug is prepared, withdrawn into the syringe and ready for injection, the user inserts a needle through the skin and into a vein. The user then withdraws the plunger of the syringe and looks for the presence of blood in its barrel. This is called "registering." If blood appears, the needle has indeed penetrated a vein and the drug is injected. The user then typically pulls back the plunger of the syringe, filling it with blood and re-injects several times in order to ensure that all traces of the drug have been discharged from the syringe. This is called "booting" -- a process that leaves sometimes invisible traces of blood in the components of the syringe or equipment. And it is the subsequent use of this equipment by another person that exposes them to another person's potentially-contaminated blood.

IN THE BEGINNING

All participants in the focus group were in recovery from drug use, though for varying lengths of time and some with periodic and/or recent relapses. Those interviewed individually were either in recovery and unable to attend the focus group or were actively using drugs and/or alcohol.

Everyone interviewed for this report stated that they started using drugs in high school or when they were in their early 20's. Alcohol, marijuana, uppers and downers were most often cited as the initial drugs of choice and all went on to use heroin and/or cocaine on a regular basis. One woman, Arlene S., confessed, "I started as a weekend junky, but then it became a full-time obsession."

INITIATION TO INJECTING

Many of those interviewed said they injected drugs because it was the easiest, cheapist and fastest way to get high and to relieve withdrawal symptoms. Most said they never saw themselves progressing to injections and respondents provided mixed assessments in recalling their perceptions about shooting drugs. Those who were acquainted with IDUs minimized the move to injections, while others with less exposure to needles saw it as a bigger step.

One Nassau County woman spoke of making the transition from snorting cocaine, to skin-popping (inserting it under the skin), to full injections into a vein. Another respondent said he rationalized injections as a preferred means of drug delivery since, "shooting was close to a doctor's way of administering drugs."

Half of the women interviewed said that a male partner -- boyfriend or spouse -- introduced them to injecting, and in some cases supplied the equipment and administered the shot. One Suffolk County woman said her boyfriend introduced her to heroin, and prepared and performed the injections for her, until she got tired of waiting her turn, got her own set of works (from him) and began administering her own injections. Another female respondent said she had used cocaine for six years, always depending on her boyfriend, a cocaine dealer, to do the injections. A male respondent recalled that a college buddy had introduced him to injecting cocaine and was the one who performed the injections for his first few years of use.

ACCESS TO SYRINGES

Several of those interviewed said they fashioned their own syringes out of eyedroppers, would buy them on the street for $1.00-$2.00, or rent them in a shooting gallery for about $1.00. Others would get syringes from friends who were diabetic or who worked in medical settings. One woman said she had worked in a doctor's office and pocketed needles after they were used on patients. Another worked in a veterinarian's office and got her syringes from there. One man said he would look in the dumpsters behind medical offices and in the household garbage cans of neighbors he knew to be diabetic.

Respondents were unanimous in their assertion that syringes were always available. Sterile syringes, though, were another thing. A Nassau County woman recalled, "I knew people who would buy a new needle, use it, clean it, and reseal the package to sell as new."

One respondent interviewed individually, said he had visited a New York City syringe exchange program a few times when he traveled there to get drugs. He now obtains his drugs locally in Nassau County and says, "Once you start getting that urge, you're not going to take a train ride for an hour to get a rig [syringe]. If it was around the corner maybe."

SYRINGE HABITS

Virtually all respondents spoke of their efforts to sterilize their own syringes, but were more concerned about hepatitis than HIV. Some were at their height of their drug use during the 1970's and early 1980's before HIV was well known, but others who had injected drugs in the era of AIDS variably said they were unaware of the dangers, never believed they would actually be infected or believed infection was inevitable. One woman told us, "Even though you saw it on TV, it was not going to happen to us. They always showed very sick people and we didn't look like that." At the other end of the spectrum, another man said, "I figured it was only a matter of time before I got infected with something that would kill me faster than heroin."

Respondents said they used water, rubbing alcohol, beer, and peroxide to try to clean their syringes. One had used bleach occasionally, but another asked only semi-rhetorically, "Who carries bleach?" Still another expressed a legitimate fear of inadvertently injecting traces of bleach left in the syringe.

A few study participants thought thorough cleaning was unnecessary. As one woman said, "I thought I was safe by rinsing with water; if I did not see blood, I thought I was okay."

Virtually all of those interviewed said they had used someone else's syringe or allow someone to use theirs. As one woman said, "It's the nature of addiction, when you get sick [from withdrawal symptoms], you do whatever it takes." Another woman said she would lend syringes to those without. "If a friend didn't have works or if they were sick and needed a hit, we would help each other out when we wanted to."

Most respondents said they preferred not to share syringes and only did so when a clean one was unavailable.

Most striking were participants' stories about the need to continue shooting on a regular basis in order to alleviate gut-wrenching physical withdrawal symptoms and being forced to use dirty needles that eventually infected them with HIV.

"You do what you have to," was a familiar refrain among drug users, both past and present.

Chapter 3
REDUCING THE HARM

It's a basic premise of public health that efforts to reduce the spread of disease should center on efforts to eliminate the means of transmission. Malaria, for example, has been combated through pesticide programs that eliminate the mosquitoes that spread the disease. In addressing the twin epidemics of substance use and HIV, however, the means of transmission is often viewed as the addiction and not the contaminated needles or unsafe sex that often accompany chemical dependency. As such, drug treatment with a goal of abstinence has been relied upon as the primary, and on most occasions, the sole approach to reducing HIV-seroprevalence rates among this population.

Though complete recovery from drug use and abstinence are important goals, thousands of drug users are becoming infected and dying before ever accessing treatment. To rely on painfully inadequate and unavailable drug treatment slots as the only strategy for HIV prevention is to write off three quarters of the drug-using population that couldn't get help even if they wanted it.

Recovery from drug use is a long and complicated process that includes several stages, all of which pose formidable challenges. [62] Substance use is typically a coping mechanism for other dynamics and the acceptance of treatment, presuming it's available, is a big step that not all are ready to take. Addicted women, in particular, often have no one else to care for their children while they get help and news reports about crack-addicted moms losing their babies or being prosecuted for child abuse or neglect have scared many into secretive isolation.

The notion that progression from active drug use to abstinence takes place in a linear way ignores the fact that addiction is almost invariably a chronic and relapsing condition. [63] Users often continue or relapse into injection drug use while in treatment. The path to abstinence is rarely direct and people often revert to familiar coping mechanisms when faced with difficult events, such as an HIV-related diagnosis or sudden homelessness. [64]

It's also important to note that methadone maintenance, by far the most readily available treatment modality, primarily treats heroin addiction and 80 percent of heroin users also inject cocaine. [65]

Drug treatment with a goal of abstinence is a worthwhile quest and should not be abandoned. But that shouldn't mean that those unable or unwilling to complete a drug treatment program and/or maintain abstinence should be abandoned by an all-or-nothing approach either.

Recognizing the costly and tragic consequences of skyrocketing HIV infection rates among IDUs, the inadequacy of existing treatment facilities and the reality of some continuing drug use regardless of treatment availability, the concept of "harm reduction" has begun to gain increased acceptance among health and addiction professionals. This philosophy represents an expansion of an exclusively abstinence-oriented service model to include the objective of helping drug users manage their drug use and health without necessarily requiring or expecting abstinence. [66] Long recognized as a successful strategy in other countries, harm reduction is a developmental process that seeks to decrease personal risk along a continuum, with the ultimate goal of risk elimination. [67]

In the context of HIV, harm reduction usually entails giving IDUs the information and means to reduce the risk of infection to themselves and their partners. This might mean getting someone to use drugs less often, alter their method of drug delivery (snorting vs. injecting), change the setting in which they use drugs (avoiding shooting galleries) or buying diapers for their kids before they buy drugs. The focus is on incremental steps that enhance safety and health, and that hopefully will pave the way for bigger changes.

In New York and most other places, harm reduction for injection drug users includes the provision of sterile injection equipment; instructions on sanitary precautions to take when injecting drugs; information the importance of not sharing needles; the provision of condoms, dental dams, and bleach kits with instructions on their proper usage; and regular offers of medical services and drug treatment. [68] Harm reduction also includes minimizing some of the other risks associated with injection drug use -- hepatitis B and C, endocarditis, abscesses, collapsed veins, malnutrition, overdoses, and tuberculosis.

If the concept of harm reduction or the practice of giving addicts clean syringes seems controversial or counter intuitive to our efforts to combat drug abuse, consider this: Even the Centers for Disease Control and Prevention (CDC) -- our nation's top public health agency -- issued a bulletin in 1997 advising that IDUs unable to stop using drugs should "use a new, sterile syringe to prepare and inject drugs." It also advised that "persons who continue to inject drugs should obtain syringes from reliable sources of sterile syringes, such as pharmacies." [69]

In the next two chapters, we review the steps that have been taken to date to increase syringe availability. Unfortunately, none of these efforts have taken place on Long Island.

Chapter 4
SYRINGE EXCHANGE PROGRAMS

Though generally discussed in the context of HIV prevention, the first syringe exchange programs (SEPs) were started by AIDS activists in Amsterdam in 1984 in response to a growing threat of Hepatitis B among IDUs. [70] By 1986, the concept had spread and programs also started in the United Kingdom and Sweden. [71] As HIV has continued its relentless international assault on IDUs during the last decade, SEPs have started in Canada, New Zealand, Australia, Thailand, Nepal and most developed countries.

In stark contrast to the rapid spread of HIV among American drug users, it wasn't until 1988 that the first American SEP was started in Tacoma, Washington by Dave Purchase, a local drug counselor and activist. [72] Within a year, both underground and government-operated programs appeared in San Francisco, New York, Portland, Seattle and several other major U.S. cities. [73] By the end of 1997, more than 100 SEPs were operating in more than 65 cities and thanks to a ban on federal funding for needle exchange, all are funded through state or private monies. [74]

Though needle exchange programs operate in a number of different settings -- from folding tables on the street, to mobile outreach vans, roving outreach teams, storefronts, and clinics -- they all function basically in the same way. Injection drug users exchange dirty, used syringes for clean, sterile ones, and receive instructions about safer injection practices, safer sex and treatment options. Bleach kits, condoms, dental dams and information sheets about HIV/AIDS are distributed freely. Studies have found that syringe exchange programs frequently act as bridges or conduits to drug treatment programs. [75]

In most programs, including the Lower East Side Needle Exchange Program (LESNEP), new participants receive a counseling session at intake and the exchange rate is one-for-one plus an extra five syringes upon request. In jurisdictions such as New York, where possession of syringes is a crime, participants are assigned a unique code number and an identification card is issued. No restrictions are placed on numbers of visits or exchanges and programs such as LESNEP storefront have only three rules: no violence, no using drugs and no dealing.

LESNEP is a key component of the New York State Department of Health AIDS Institute's Comprehensive Harm Reduction Syringe Exchange Initiative that currently provides oversight and funding for 12 syringe exchange programs operating at 34 sites in New York City, Westchester, Buffalo and Rochester. [76] Using a patchwork of funding that comes from New York State, the Centers for Disease Control and Prevention, and Title II of the Ryan White CARE Act, the Initiative will serve an estimated 30,000-40,000 IDUs this year alone -- about 14% of the state's IDU population of 250,000. [77] Existing programs are operating at maximum capacity and additional applications filed by AIDS groups in Syracuse and Brooklyn cannot be supported with state funds because of insufficient resources. [78]

New York's SEPs operate under emergency regulations filed in May 1992 and made permanent in October 1993, which provide that programs may obtain, possess and distribute hypodermic needles and syringes without a prescription when approved by the Health Commissioner for the purposes of preventing the transmission of HIV. [79] Though the process is a lengthy one, program activity has been brisk with SEPs distributing more than 4.2 million syringes and collecting more than 3.6 million since inception. [80]

The number of sterile syringes distributed or collected on Long Island? Zero.

FIRST GENERATION QUESTIONS

So, does syringe exchange work? That is, does it lower HIV-infection rates among IDUs without increasing drug use? A landmark 1995 review of more than two dozen studies evaluating various aspects of SEPs in the U.S. and abroad concluded that it does. [81]

Since then, a worldwide survey published in 1997, found that HIV seroprevalence among injection drug users decreased 5.8% annually in major cities with syringe exchange programs, but increased by 5.9% per year in cities without -- a difference of 11%. [82] There are few HIV prevention interventions that can demonstrate their efficacy this assuredly.

Another study published in 1998 found that syringe exchange programs in 4 major U.S. cities -- San Francisco, Chicago, Baltimore and New Haven -- reduced syringe reuse by at least 50%, thereby reducing potential HIV exposures by as much. [83]

A 1996 study conducted closer to home -- in New York City -- found that injection drug users there who used syringe exchange programs were two-thirds less likely to become infected with HIV than those who did not. [84]

In addition to HIV, injection drug users are susceptible to a number of other bloodborne pathogens, including hepatitis B and C. Because these viruses, like HIV can be transmitted through contaminated syringes -- exchange programs have proven successful in fighting them as well.

Regular users of a Tacoma, Washington syringe exchange program, for example, were more than six times less likely to contract hepatitis B or C than IDUs not enrolled in the SEP. [85]

On the question of whether syringe exchange fuels drug use, the answer is simple: it doesn't. No study has ever found an increase in injection drug use among existing users associated with these programs, nor among new users in the general community in which they are located. In fact, several reports, including six sponsored by the federal government conclude that access to clean syringes does not increase drug use. [86]

Such data isn't particularly new, however. As early as 1989, the American Public Health Association issued a recommendation in support of SEPs, concluding that, "There is no evidence that such programs entice individuals to initiate drug use." [87]

As other communities and the public health field as a whole move onto some of the second generation questions about SEPs -- like how they should be run, what types and how many syringes users should be given, etc -- Long Island seems reluctant to even begin discussing the first generation questions. It's the answers to these questions (as outlined in the data above) that make the development of Long Island-based SEPs a moral and economic imperative.

WHAT'S IN IT FOR US?

The data on syringe exchange is incontrovertible. Increased availability of hypodermics hasn't lured thousands into the lurid world of drug abuse as originally feared, nor has it prompted chronic addicts to increase drug consumption. In fact, it's done just the opposite.

A decline in HIV-seroprevalance rates fostered by syringe exchange programs translates into a decline in premature deaths and costly medical expenditures. The median annual budget of SEPs in the U.S. is $169,000 annually - a paltry sum given that the direct medical costs of caring for a person with HIV/AIDS are estimated at $20,000 per year. [88] If the average life span of a person with HIV has increased to 10 years, then the average lifetime costs are $200,000 plus loss of productivity, cost of public benefits, and costs of community-based services.

By one estimate, between 4,400 and 10,000 HIV infections among IDUs in the United States could have been avoided between 1987 and 1995 if the federal government had implemented syringe exchange nationwide. Projected health care cost savings would have exceeded $500 million. Action taken in 1997 could have prevented an additional 11,000 HIV infections by the year 2000, saving more than $600 million. [89]

COMMUNITY SUPPORT

Virtually every credible medical body has endorsed syringe exchange as an HIV prevention tool. Among them are: the American Academy of Pediatrics, American Academy of Psychiatrists in Alcoholism and Addictions, American Medical Association, American Pharmaceutical Association, American Psychiatric Association, American Public Health Association, American Society of Addiction Medicine, Association of State and Territorial Health Officials, Centers for Disease Control and Prevention, National Academy of Sciences, National Association of Social Workers, two separate National Commissions on AIDS, National Black Nurses Association, National Association of State Alcohol and Drug Abuse Directors, National Nurses Association, National Institutes of Health Consensus Panel, the U.S. Conference of Mayors, and the World Health Organization.

Civil rights organizations such as the National Association for the Advancement of Colored People (NAACP), the National Urban Coalition, and the National Urban League support the development of SEPs, as do leading legal groups such as the American Bar Association.

Somewhat surprisingly, syringe exchange also wins significant support from those in the general population. A Kaiser Family Foundation survey conducted in 1996, for example, found that 66% of all Americans are in favor of providing clean syringes to IDUs. For Catholics, the number jumped to 67%; for non-Evangelicals, it jumped to 69%. Sixty-two percent of Evangelical respondents said they supported syringe exchange. [90]

LIMITATIONS

Needle exchange programs, however, are not without their limitations. Programs in New York and across the nation are stretched to capacity and reaching only a small percentage of active drug users. Chances for expansion are slim given the federal ban on funding for SEPs and the fiscal crises facing most states and private funding sources. But even a massive expansion of current efforts probably couldn't sufficiently reach all users all the time, especially those in suburban areas like Long Island where anonymity is treasured, site selection is likely to be controversial and political dynamics have precluded program development.

WHAT ABOUT BLEACH?

During the late 1980's and early 1990's, enhancing access to sterile injection equipment centered on the distribution of bleach kits to addicts, along with instructions about safer injection practices.

The kits, which are often used in conjunction with other risk reduction methods today, contain a cooker for melting the drug, a bottle of sterile water, bottle of bleach, alcohol pads, cotton for straining impurities when drawing the drug from the cooker into the syringe and instructions on how to adequately clean potentially infectious residue from the barrel of needles and syringes. While the proper sterilization of needles is an important component of harm reduction, it's a fairly time-consuming, complicated process that requires a clear head and regular access to bleach, water, cotton and cookers. The potential for dangerous errors (like accidentally injecting bleach) can be high and guidelines issued by the Public Health Service in 1993 indicate that the disinfection of used injection equipment is not as safe as using a sterile syringe for each injection. [91]

Chapter 5
SYRINGE DEREGULATION

The fastest and most efficient way to make sterile syringes readily available to a larger number of injection drug users regardless of where they live is to allow their sale, distribution and possession without a prescription. After all, every community has a pharmacy; most now have one nearby that is open 24 hours a day, seven days a week.

In most states, it is possible to walk into a pharmacy and purchase a syringe. Not in New York, though. See, New York is one of only eight states nationwide that prohibit the pharmacy-based sale or possession of syringes without a prescription. [92] Other states with such a prohibition include: California, Delaware, Illinois, Massachusetts, New Hampshire, New Jersey, and Rhode Island. [93] Ironically, but perhaps not completely coincidentally, New York and California have the highest AIDS caseloads in the country, while these 8 states together account for 45% of the nation's cases. [94]

Ten states restrict the sale of syringes. [95] In Michigan, Ohio, Texas, Washington, and Virginia for example, the purchaser must have a 'legitimate medical need.' In Nevada, syringes may be sold without a prescription for medical, veterinary, industrial and hobby purposes as long as the seller is satisfied that the device will be used lawfully. Virginia bars sales to individuals under the age of 16, while Florida and Maine prohibit sales to those under the age of 18. Oregon requires parental consent for minors under 18.

Some states -- like Florida and Michigan -- have no state law requiring prescriptions, but do have some local ordinances with such requirements. [96] Most states have some kind of law restricting what's referred to as "drug paraphernalia" -- a term which usually includes syringes. New York's law, though, remains among the nation's toughest and given our AIDS caseloads, is one of the most destructive.

1914 AND BEYOND?

New York State's syringe prescription law dates back to 1914 when the Boylan-Town Act became law. [97] The national milieu at the time was one in which doctors were prescribing a number of opiate-based medications containing morphine, cocaine and heroin. The public began to worry that doctors were promoting drug use and state legislatures scrambled to pass laws that would restrict the writing and filling of prescriptions. [98]

In short, the Boylan-Town Act of 1914 sought to reduce drug addiction by restricting access to narcotic drugs and the instruments necessary to administer them through five avenues: preventing pharmacists from dispensing narcotics or syringes to persons without valid medical prescriptions, prohibit physicians from writing scripts without examining the patient, limited physician and pharmacists' discretion in refilling narcotic prescriptions, mandated recordkeeping of retail transactions for 5 years; and authorized revocation of professional licenses for violations. [99]

The section of the New York State Penal Law that corresponds to the charge of Criminally Possessing a Hypodermic Instrument is PL 220.45, which is a Class A misdemeanor. [100] Sounds tough, right? Well, it may sound that way, but truth be told, arrests for violating the law on Long Island are few.

The Suffolk County Police Department made 60 arrests in 1997 under the law, and 45 arrests from January 1, 1998 to August 31, 1998. [101] The numbers in Nassau County were even lower with 37 arrests between January 1997 and June 1998. [102] Both departments record only the highest charge in an arrest, so there may have been other violations of the law that never made it into the statistics because an individual was charged with multiple crimes.

The state Department of Health has granted some waivers for SEPs, but this archaic, little-used law has made the possession of syringes a crime and purchase impossible. This has directly enhanced the likelihood of needle sharing by fostering syringe scarcity and dissuading injectors from carrying needles with them, making it more likely that sterile equipment will not be at hand when needed.

SCIENCE AND THE SENATE

Those without access to SEPs are without access to clean syringes. That's why legislation has been introduced in the NYS Legislature to deregulate syringes and allow the pharmacy-based sale of up to ten syringes at a time to adults. [103] The bill went nowhere in the GOP-controlled state Senate for several years, but got a boost last year when two senators from Long Island -- Kemp Hannon (R-Garden City), who chairs the Senate Health Committee and James Lack (R-Hauppauge) who chairs the Senate Judiciary Committee -- weighed in as key sponsors of the measure.

Naysayers of the proposal have been far and few between, however, some concerns about increased drug usage, needle stick injuries, a "new" black market for syringes and streets flooded with discarded syringes have emerged. Fortunately, we don't have to wonder what would happen if New York enacted a syringe deregulation bill.

That's because Connecticut passed an almost identical measure and repealed its syringe prescription law in 1992. Here's what the evaluation studies found: [104]

• Street purchases of syringes declined from 74% prior to deregulation to 28% after.
• A corresponding increase in the sale of pharmacy syringes from 19% to 78%.
• A 39% decrease in needle-sharing.
• A decrease in needlestick injuries among police officers with no increase in the general population.  
• A willingness on the part of 83% of pharmacy owners to participate.  
• No significant problems with disposal.

The pair of studies concluded, "Our data suggest that when legal restrictions on both the purchase and possession of syringes are removed, IDUs will change their syringe-purchasing practices and their syringe-sharing behaviors in ways that can reduce HIV transmission." [105]

A 1991 Maryland study which looked at HIV infection rates among IDUs who were diabetic and had consistent access to sterile needles came up with a similar conclusion. [106] HIV-seroprevalance for this group was 9.8 percent compared to 24.3 percent for non-diabetic IDUs with similar patterns of drug and sexual practices -- a disparity the authors attributed to "ready access to sterile injection equipment."

Based on these successes, Maine (10/93) and Minnesota (1/98) changed their laws to allow over-the-counter sale of up to 10 syringes. A recent study of pharmacy practices in Maine found that 95% of pharmacists were willing to sell a syringe without a prescription, but only 47% would sell syringes to a customer they believed to be an IDU. Forty percent said they were not willing to sell to IDUs, and 13% did not know or would not answer. [107]

These results highlight the fact that changing the law is only first task, and that working with pharmacists is absolutely critical. In Louisiana, though, an innovative needle coupon program has for