Utilization of New York State Syringe Exchange Programs: 1992 - 2006 James M. Tesoriero, Maxine Phillips, Karyn Heavner, and Alma Candelas New York State Department of Health AIDS Institute

Background In New York State, injection drug use (IDU) plays a major role in the HIV/AIDS epidemic: Nearly 50% of cumulative AIDS cases attributable to IDU and 90% of Hepatitis C cases have a lifetime history of IDU. Although decreases in HIV drug risk behavior in response to the AIDS epidemic have been documented since the mid-1980s, many IDUs do continue to share injection equipment, at least occasionally Syringe Exchange Programs (SEPs) offer a setting in which injecting drug users can obtain sterile needles and syringes, typically in exchange for used injecting equipment.

Background Continued… Despite continued opposition, SEPs spread throughout the country quickly after the recognition of the critical role played by IDUs in the HIV epidemic. Many evaluative studies of SEPs have demonstrated the beneficial effects of these programs in lowering clients’ risk of HIV infection, but few studies have examined the utilization patterns of needle exchange participants in detail. This information is critical to an adequate understanding of how SEPs are achieving their objectives.

Background Continued… Most studies examining the issue of utilization report high dropout rates and fairly low levels of program utilization Existing studies have tended to use fairly simple, one-dimensional measures of participation and they have generally failed to control for the fact that clients enter the exchanges at different times.

Syringe Exchange Programs in New York State There are an estimated 170,000 active IDUs in NYS (125,000 in New York City). The first legal syringe exchange program was opened in New York State in the fall of 1988 by the New York City Health Department. Shortly thereafter, several unauthorized syringe exchange programs were begun in New York City by AIDS activists. When administrators from these program were subsequently arrested for failing to possess necessary waivers from the New York State Department of Health to operate the exchanges, they were found “not guilty by reason of public health necessity”.

Syringe Exchange Programs in New York State Continued… In 1992, five community based organizations were granted waivers by the New York State Department of Health to operate syringe exchange programs in New York City. These waivers required that the programs exist within a comprehensive harm reduction model, and that HIV/AIDS education or materials be provided to participants, along with direct or referral access to medical, drug treatment, and other services. There are currently 17 organizations with State Health Department waivers to operate SEPs in NYS 13 SEPs located in New York City, 1 in Rochester, 1 in Buffalo, 1 in Mount Vernon and 1 in Ithaca These 17 SEPs operate 47 sites (42 in NYC)

Purpose The following questions were addressed: ➀ What are the demographic characteristics of SEP users? ➁ What percent of clients return to the SEP at least one time after initial enrollment? ➂ What is the average number of visits in a one year period for those clients who do return to the SEP? ➃ What is the average length of time between visits to SEPs? ➄ How many syringes are distributed to, and returned by, SEP clients? ➅ What percentage of SEP participants can be considered “regular” users of exchange sites?

Methods Enrollment and transaction-level data from every SEP operating in NYS from 1992 through 2006 were analyzed. Unless otherwise indicated, analyses were standardized by using one year of data on each participant, commencing with the date of initial enrollment.

New York SEP Database: January 1, 1992- December 31, 2006 Number of Transactions Number of Participants Transactions within 12 months of enrollment: Clients enrolled between 1/1, 1992 and 12/31, 2005 487,610 113,711 Duplicate entries excluded3 9,150 5,637 (not excluded) Excluded due to bad data 351 45 Number of unduplicated entries with usable SEP data 478,109 113,666 3. Duplicate defined as having the same ID number and the same number of syringes returned and received on the same day.

Characteristics of SEP Users in NYS 1/1/1992-12/31/2006: N=113,666 Demographic (missing) # % Age at SEP Enrollment (323) Race/Ethnicity (20,856) 15-20 2,753 2.4% Hispanic 42,795 46.1% 21-30 20,219 17.8% Non-Hispanic Black 21,894 23.6% 31-40 42,956 38.9% Non-Hispanic White 26,375 28.4% 41-50 35,676 31.5% Non-Hispanic Other 1,746 1.9% 51-60 9,254 8.2% 61+ 2,485 2.2% Region (1,165) Mean (Std. Dev.) 38.7 (9.84) NYC 100,105 89.0% NYC Vicinity 2,284 2.0% Gender (42) Rest of NYS 8,534 7.6% Male 85,055 74.9% Outside NYS 1,578 1.4% Female 28,295 24.9% Transgender 274 0.2%

Number of New SEP Enrollees by Year: 1992-2005 (N=113,666)

Mean Age of SEP Users by Year of Enrollment: 1992-2005 (N=113,666)

Percentage of SEP Users Returning at Least One Time (N=113,666)

Demographic (missing) Percentage of SEP Users Returning at Least Once Within 12 Months by Client Demographics 1/1/1992-12/31/2006: N=113,666 Demographic (missing) # % Age at SEP Enrollment (323) Race/Ethnicity (20,856) 15-20 2,753 58.6% Hispanic 42,795 48.7% 21-30 20,219 51.5% Non-Hispanic Black 21,894 47.9% 31-40 42,956 47.6% Non-Hispanic White 26,375 58.0% 41-50 35,676 48.8% Non-Hispanic Other 1,746 52.2% 51-60 9,254 46.5% 61+ 2,485 50.6% Region (1,165) NYC 100,105 47.5% NYC Vicinity 2,284 Gender (42) Rest of NYS 8,534 57.2% Male 85,055 49.0% Outside NYS 1,578 63.4% Female 28,295 48.6% Transgender 274 37.2%

Percentage of SEP Users Returning at Least Once Within 12 Months by Year (N=113,666)

SEP Utilization in 12 Months After 1st SEP Visit: 1/1/1992-12/31/2006 Mean Standard Deviation Median Range % Returned at Least Once1 113,666 48.9% ---- Mean # Days between visits1,2 55,579 55.7 65.6 32.0 0-365 # Visits1, 2 7.6 10.8 4.0 2-302 Mean # Needles returned per visit1,2 17.7 51.9 3.0 0-2,568 Mean # Needles distributed per visit1,2 24.2 52.2 10.0 1. During the 12 month follow-up period 2. Among clients with at least 2 visits

Total Needles Distributed and Returned by SEP Participants Enrolling Between 1/1/1990-12/31/2006 (n=113,666)

Total Needles Distributed and Returned in the 24 Months After First SEP Visit: 1/1/1990-12/31/2006 # of participants % of all participants Needles returned by participants Needles distributed by participants Ratio of needles returned to needles distributed # % of all needles Those receiving 0-9 needles 30,292 26.7% 33,876 0.4% 123,532 1.1% 0.27 Those receiving 10-99 needles 62,544 55.0% 613,539 7.2% 1,686,870 14.9% 0.36 Those receiving 100-249 needles 10,668 9.4% 1,087,111 12.8% 1,648,485 14.6% 0.66 Those receiving 250-499 needles 5,011 4.4% 1,346,882 15.8% 1,765,261 15.6% 0.76 Those receiving 500-999 needles 3,313 2.9% 1,945,426 22.8% 2,287,196 20.2% 0.85 Those receiving 1,000-1,999 needles 1,238 1,517,288 17.8% 1,688,271 0.90 Those receiving 2,000-2,999 needles 335 0.3% 752,350 8.8% 806,584 7.1% 0.93 Those receiving 3,000+ needles 265 0.2% 1,223,728 14.4% 1,294,642 11.5% 0.95 Whole sample 113,666 100.0% 8,520,200 11,300,841 0.75

Needles Distributed in the 24 Months After First SEP Visit: 1/1/1990-12/31/2006 (N=113,666)

Total Needles Distributed and Returned by Year: Participants Enrolled between 1/1/92 and 12/31/05

Conclusion Over 110,000 IDUs have utilized NYS SEPs since legalization in 1992, with nearly 33 million needles distributed and 27 million returned. New SEP enrollment is trending downward, consistent with evidence that IDU is decreasing in NYS (and with increased availability of over-the-counter syringes). Average age of SEP users stable over time. Most (>50%) SEP users make 1 visit and never return. Highest utilization limited to a very small subset of IDU (<5%). SEP Utilization patterns, coupled with the limited number of SEPs operating in NYS, illustrates the importance of increasing access to sterile needles through additional venues in NYS.

Expanded Syringe Access in NYS In May 2000, the New York State Legislature created the Expanded Syringe Access demonstration Program (ESAP) Effective since January 1, 2001 ESAP permits the sale of up to ten syringes per transaction without a prescription to persons 18+ by pharmacists, health care facilities, and health care practitioners registered with the NYS Department of Health.

ESAP Continued… Providers may not advertise availability of syringes without a prescription. Providers must cooperate in a program to assure safe disposal of used syringes. Syringes provided through ESAP must be accompanied by a safety insert explaining proper use, risk of blood borne diseases, proper disposal, dangers of injection drug use, how to access drug treatment as well as information about HIV/AIDS.

ESAP Continued… As of October 2007, the are over 3,000 providers registered with ESAP across NYS, 97% of which were pharmacies. Approximately 75% of the estimated 3,950 community eligible pharmacies are participating in ESAP statewide. A simple extrapolation of 2006 sales data from a representative sample of about 500 ESAP-registered pharmacies translates into an estimated 2.4 million syringes distributed statewide annually (95% confidence interval = 2.0 - 2.8 million). Interestingly, this number is roughly comparable to the total number of syringes distributed by the 16 legal syringe exchange programs, which distributed 2.5 million syringes during 2006.

Limitations The utilization patterns studied in this project apply to participation in a single SEP. Each SEP employs its own identification system, and this study does not account for the extent to which clients cross-over from one SEP to another for services. Cross-over in needles returned between SEPs in NYC was examined in a early study, with rates of between 2% and 6% reported (Paone et al., 1995). High-volume users could be engaging in secondary needle distribution, thereby reaching more IDUs Recent study found that 22% of SEP visits in Chicago involved secondary exchanges (Huo et al., 2005).

Contact Information Research Contact: James M. Tesoriero jmt07@health.state.ny.us (518) 402-6814 Program Contact: Maxine Phillips map03@health.state.ny.us (212) 417-4661