Abstract
Objectives. We aimed to determine whether syringe exchange programs (SEPs) currently receive or anticipate pursuing federal funding and barriers to funding applications following the recent removal of the long-standing ban on using federal funds for SEPs.
Methods. We conducted a telephone-administered cross-sectional survey of US SEPs. Descriptive statistics summarized responses; bivariate analyses examined differences in pursuing funding and experiencing barriers by program characteristics.
Results. Of the 187 SEPs (92.1%) that responded, 90.9% were legally authorized. Three received federal funds and 116 intended to pursue federal funding. Perceived federal funding barriers were common and included availability and accessibility of funds, legal requirements such as written police support, resource capacity to apply and comply with funding regulations, local political and structural organization, and concern around altering program culture. Programs without legal authorization, health department affiliation, large distribution, or comprehensive planning reported more federal funding barriers.
Conclusions. Policy implementation gaps appear to render federal support primarily symbolic. In practice, funding opportunities may not be available to all SEPs. Increased technical assistance and legal reform could improve access to federal funds, especially for SEPs with smaller capacity and tenuous local support.
Syringe exchange programs (SEPs) are effective and cost-effective interventions that prevent HIV and hepatitis infections and link drug users to important services.1 However, their number and impact in the United States have been limited by federal, state, and local laws and law enforcement practices.2 The SEPs have remained controversial since their inception, with variable financial and political support.3,4 As of March 2009, there were 184 SEPs in operation in the United States, Washington, DC, and Puerto Rico5 distributing syringes to drug users through a variety of methods including stationary sites, mobile vans, delivery services, and backpack or walked routes.
The Consolidated Appropriation Act (December 2009) modified the 2-decade-long ban on use of federal funds to support SEPs.6 Estimates from 1997 suggested that expansion rather than banning of funding for SEPs early on in the HIV epidemic would have reduced US HIV incidence by 15% to 33%, at enormous cost savings to society.7 Concerted advocacy helped lift the ban, with hopes that it would provide local governments with greater flexibility and capacity to reduce HIV transmission.8,9 The new law formalized the federal government's recognition of SEPs’ role in community-based disease prevention, allowed federal public health agencies to research and provide technical assistance to these programs, and provided a new source of SEP funding during fiscal year 2010. Currently, 79% of SEP funding comes from state and local governments with the remainder from private sources.5 In the past, limited funding has been reported as the most common problem facing SEPs.3 The ban on funding existed as a rider to the annual Labor–Health and Human Services Appropriations bills.10 If the rider is not inserted, federal funds can be used for SEPs. As a consequence, the ban's removal is not permanent, and it may be reinstated if approved by Congress.
Differences between laws on the books and laws on the streets result from a policy transformation process, in which various implementation challenges may ultimately limit the net impact of public health laws.11 For the SEP funding ban, this process involves not only the federal agencies responsible for administering grants, but also local and state agencies. Final implementation guidelines from the Department of Health and Human Services (HHS) and the Centers for Disease Control and Prevention (CDC) are being formulated. In the meantime, the policies are being implemented under the guidance of “draft implementation guidelines,” which may later be revised.
The HHS draft implementation guidelines recommending that grantees contact local program offices for information on SEP funding bans prohibit “the use of funds for SEPs in any location that local public health or law enforcement agencies deem to be inappropriate”12(p1) and require that SEPs obtain annual certifications from local public health and law enforcement (hereafter referred to as the certification requirement). Preliminary CDC implementation guidelines indicate that federal grantees must be part of a “comprehensive service program that includes, as appropriate, linkage and referral to substance abuse prevention and treatment services, mental health, and other support services,”12(p1) which may be more rigorous criteria than those traditionally used within states. Given inconsistent legal authorization,13 political opposition, professional hostility, and interference by law enforcement agencies to SEP operations in some locales,14,15 it may be difficult for some SEPs to procure certification. Beyond certification requirement challenges, other real and perceived barriers may also shape SEPs’ efforts to request funding or technical assistance for their federal fundraising efforts, further limiting the law's public health impact.
We aimed to study discrepancies between the promise of the law and its street-level impact in the initial stages of implementation. We examined (1) whether SEPs currently receive federal funding explicitly for syringe exchange and distribution activities, (2) whether SEPs anticipate pursuing federal funding, and (3) the experienced and perceived barriers to acquiring federal funds, under the preliminary HHS guidelines.
METHODS
From October 2010 to March 2011, we conducted a cross-sectional survey of all currently operating SEPs in the United States, including those in Washington, DC, and Puerto Rico.
Survey Design and Administration
We compiled the sampling frame from lists of programs known to the North American Syringe Exchange Network and the Harm Reduction Coalition. We supplemented the list by horizontal networking, whereby each program was asked to name nearby new or “underground” programs. Survey respondents were staff with knowledge of their organization's operations.
The survey instrument included 31 closed- and open-ended questions on programs’ legal status, association with a local or state health department, syringe distribution amounts and methods (stationary site, mobile site, secondary exchange program, delivery, or “backpack” walking distribution), and current and planned funding. Closed-ended questions were dichotomous or multiple-response optional, and permitted a “don't know” response option. Funding questions included grant-writing capacity; receipt of federal, state, or local funds for SEP activities; anticipated pursuit of federal funds; experienced or anticipated barriers to receiving federal funds for SEP activities; and awareness of and perceived barriers associated with the certification requirement. Questions were worded to first elicit unprompted articulation of federal funding barriers (if experienced). Then, the text of the certification requirement was presented to the respondent, with questions posed about awareness of the requirement, whether it would be a barrier in their community, and probes to clarify their response.
Trained research assistants (M. M., S. B., and G. V.) administered surveys by telephone. Responses were supplemented by e-mail communication as needed or when requested by the respondent. This study was approved by the institutional review board of Rhode Island Hospital.
Data Analysis
Descriptive statistics (mean, median, standard deviation, interquartile range) summarized closed-ended survey item responses. Bivariate analyses examined differences in funding responses by program characteristics, including legal status, relationship to department of health (DOH; DOH-affiliated or -managed, whether DOH-funded or not), syringe distribution method, exchange volume (defined as small, medium, large, and very large, following Guardino et al.5), urbanization of the area serviced (self-reported as rural, suburban, or urban), and US Census Regions (Northeast, Midwest, South, West). We treated “don't know” responses to the 3 funding questions as missing data. We conducted Pearson and Mantel-Haenszel χ2 tests of association in EpiInfo (CDC, Atlanta, GA) and SAS version 9.2 (SAS Institute, Cary, NC). Tests of association achieving statistical significance of P < .1 are reported.
Open-ended responses on perceived barriers to receiving federal funding were coded thematically in a 3-step process. Two research assistants (M. M. and S. B.) independently reviewed the universe of responses and derived a coding scheme to capture broad themes and subthemes (e.g., broad theme: concerns about restrictions and culture; subtheme: concerns about restrictions on how money can be spent). Codes were compared and any additional codes were introduced by a third reviewer (T. G.), with the final set of codes decided by group consensus. Finally, the research assistants independently applied the codes (i.e., absence or presence of code) to the open-text responses in Microsoft Excel, Office 2003 (Microsoft Corporation, Redland, WA). We used κ statistics to assess interrater reliability between the codings by the 2 research assistants.
RESULTS
Table 1 displays SEPs’ univariate characteristics and distribution methods. Responses were received from 187 of 203 identified programs (response rate: 92.1%) representing 35 states, Puerto Rico, and Washington, DC. Most programs (90.9%) were legally authorized to operate within their state, although 38.2% were managed by their DOH. More than 36 million syringes were distributed annually, mostly through large, legal programs serving urban areas through a stationary site. There were 40 SEPs located in the Northeast, 23 in the Midwest, 20 in the South, and 104 in the West. Program volume differed by census region (χ2 = 19.86; P = .019): Western programs had larger (32.7% large, 13.9% very large) syringe distribution. Southern programs generally had medium (38.9%) or large (44.4%) distribution. Midwestern programs had primarily small (36.4%) or large (36.4%) SEPs, and Northeastern programs had medium (25.0%) or larger (62.5% large, 5.0% very large) distribution.
TABLE 1—
Characteristics and Distribution Methods of All Known Syringe Exchange Programs: United States and Puerto Rico, October 2010–March 2011
| No., Mean ±SD, or Median (IQR) | Percentage of Programs (n = 187) | Percentage of Total Syringes Distributed (n = 36 223 727) | |
| Legally sanctioned program | 170 | 90.9 | 97.2 |
| Affiliated with or approved by DOH | 164 | 88.7 | 78.7 |
| Managed by DOH | 71 | 38.2 | 28.5 |
| Service area urbanizationa | |||
| Suburban location | 51 | 34.5 | 47.5 |
| Urban location | 116 | 78.4 | 87.9 |
| Rural location | 62 | 41.9 | 37.3 |
| Stationary distribution sites | |||
| Programs with stationary sites | 145 | 77.5 | 61.9 |
| Stationary sites/program | 1 ±1 | ||
| Mobile distribution sites | |||
| Programs with mobile sites | 75 | 40.1 | 23.7 |
| Mobile sites/program | 3 (1, 5) | ||
| Backpack or walking exchange | |||
| Programs with backpack or walking exchange | 27 | 14.4 | 3.5 |
| Walking exchange/wk | 2 (1, 4) | ||
| Program with secondary exchange program | 144 | 77.0 | … |
| Program with delivery where delivery is provided by | 70 | 37.4 | 11.6 |
| Syringe exchange program staff | 55 | 78.6 | … |
| Peer exchanges | 26 | 37.1 | … |
| Otherb | 2 | 2.9 | … |
| Maximum miles traveled for delivery | 35 (20, 45) | ||
| Deliveries made/wk | 2 (1, 5) | ||
| Syringe exchange programs by size (syringes distributed/y) | |||
| Small (< 10 000) | 43 | 23.8 | 0.4 |
| Medium (10 000–55 000) | 46 | 25.4 | 3.9 |
| Large (55 001–499 999) | 74 | 40.9 | 37.2 |
| Very large (≥ 500 000) | 18 | 9.9 | 58.5 |
| Syringe exchange programs by geographical region | |||
| Northeast | 40 | 21.4 | 18.9 |
| Midwest | 23 | 12.3 | 14.8 |
| South | 20 | 10.7 | 4.4 |
| West | 104 | 55.6 | 61.8 |
Notes. DOH = department of health; IQR = interquartile range. Cells with ellipses indicate that the percentage was not estimable.
Programs could endorse multiple responses, so percentages do not sum to 100%.
Delivery provided by physician assistants or unsanctioned staff.
Extant Funding Sources
Table 2 reports funding sources by program characteristics. Most (97.7%) SEPs receiving either or both state and local funding had a DOH affiliation. None of the unauthorized programs reported receiving state or local funding. In total, 29.9% (n = 55) received no public funding, even though 67.3% of these (37 of the 55) were DOH-affiliated.
TABLE 2—
Affirmative Responses to Funding Questions and Syringe Exchange Program Characteristics: United States and Puerto Rico, October 2010–March 2011
| Current Receipt of State Funding, No. (%) | Current Receipt of Local Funding, No. (%) | Current Receipt of State and Local Funding, No. (%) | No State or Local Funding, No. (%) | χ2 (P) | Plan to Pursue Federal Funding, No. (%)a | χ2 (P) | Anticipate Barriers to Federal Funding, No. (%)b | χ2 (P) | Anticipate That HHS Approval Requirements Will Be Problematic | χ2 (P) | |
| Overall | 85 (46.2) | 24 (13.0) | 20 (10.9) | 55 (29.9) | 116 (80.6)c | 89 (62.2)d | 41 (23.8)e | ||||
| Legally sanctioned program | 41.1 (<.001) | 17.6 (<.001) | 4.2 (.041) | 35.7 (<.001) | |||||||
| Yes | 85 (50.6) | 24 (14.3) | 20 (11.9) | 39 (23.2) | 110 (85.3) | 79 (59.9) | 28 (17.8) | ||||
| No | 0 | 0 | 0 | 16 (100) | 6 (40) | 10 (90.9) | 13 (86.7) | ||||
| Affiliated with DOHe | 35.6 (<.001) | 10.7 (.001) | 10.0 (.002) | 31.9 (<.001) | |||||||
| Yes | 84 (51.5) | 23 (14.1) | 19 (11.7) | 37 (22.7) | 105 (84.7) | 74 (58.3) | 27 (17.7) | ||||
| No | 1 (4.8) | 1 (4.8) | 1 (4.8) | 18 (85.7) | 10 (52.6) | 15 (100) | 14 (77.8) | ||||
| Managed by DOHe | 57.1 (<.001) | 6.6 (.01) | 42.0 (<.001) | 9.7 (.002) | |||||||
| Yes | 56 (78.9) | 4 (5.6) | 8 (11.2) | 3 (4.2) | 51 (91.1) | 18 (31.0) | 8 (11.6) | ||||
| No | 29 (25.7) | 20 (17.7) | 12 (10.6) | 52 (46.0) | 64 (73.6) | 71 (84.5) | 33 (32.4) | ||||
| Syringe exchange programs by size (syringes distributed/y) | 29.6 (<.001) | 3.4 (.328) | 19.4 (<.001) | 0.5 (.92) | |||||||
| Small (< 10 000) | 29 (67.4) | 4 (9.3) | 0 | 10 (23.3) | 23 (75.7) | 9 (29.0) | 9 (22.0) | ||||
| Medium (10 000–55 000) | 26 (57.8) | 4 (8.9) | 3 (6.7) | 12 (26.7) | 27 (77.1) | 22 (62.9) | 12 (26.7) | ||||
| Large (55 001–499 999) | 26 (36.1) | 11 (15.3) | 11 (15.3) | 24 (33.3) | 48 (88.9) | 43 (75.4) | 15 (23.1) | ||||
| Very large (≥ 500 000) | 4 (22.2) | 5 (27.8) | 6 (33.3) | 3 (16.7) | 12 (85.7) | 13 (72.2) | 3 (18.8) | ||||
| Census region | 20.0 (.018) | 5.9 (.117) | 16.9 (<.001) | 22.4 (<.001) | |||||||
| West | 53 (51.5) | 15 (14.6) | 11 (10.7) | 24 (23.3) | 70 (82.4) | 42 (48.8) | 14 (14.6) | ||||
| Midwest | 5 (22.7) | 4 (18.2) | 1 (4.6) | 12 (54.6) | 12 (75.0) | 14 (87.5) | 11 (50.0) | ||||
| South | 6 (30.0) | 3 (15.0) | 1 (5.0) | 10 (50.0) | 9 (60.0) | 11 (84.6) | 10 (52.6) | ||||
| Northeast | 21 (53.9) | 2 (5.1) | 7 (18.0) | 9 (23.1) | 25 (89.3) | 22 (78.6) | 6 (17.1) | ||||
| Service area urbanization | 3.2 (.783) | 0.0 (.989) | 4.9 (.088) | 0.8 (.672) | |||||||
| Rural only | 7 (38.9) | 3 (16.7) | 1 (5.6) | 7 (38.9) | 10 (71.4) | 10 (76.9) | 5 (31.2) | ||||
| Urban only | 16 (26.2) | 13 (21.3) | 9 (14.8) | 23 (37.7) | 33 (73.3) | 36 (76.6) | 15 (27.3) | ||||
| Urban, suburban, rural areas | 21 (34.4) | 8 (13.1) | 9 (14.8) | 23 (37.7) | 33 (73.3) | 40 (93.0) | 20 (35.1) | ||||
| Services | |||||||||||
| Stationary distribution | 20.2 (<.001) | 11.8 (<.001) | 2.9 (.09) | 7.5 (.006) | |||||||
| Yes | 71 (50.0) | 22 (15.5) | 18 (12.7) | 31 (21.8) | 97 (86.6) | 65 (58.6) | 25 (18.9) | ||||
| No | 14 (33.3) | 2 (4.8) | 2 (4.8) | 24 (57.1) | 19 (59.4) | 24 (75.0) | 16 (40) | ||||
| Mobile distribution | 2.7 (.438) | 0.0 (.828) | 3.8 (.052) | 1.0 (.307) | |||||||
| Yes | 32 (43.8) | 12 (16.4) | 10 (13.7) | 19 (26.0) | 44 (81.5) | 41 (71.9) | 19 (27.9) | ||||
| No | 53 (47.8) | 12 (10.8) | 10 (9.0) | 36 (32.4) | 72 (62.1) | 48 (55.8) | 22 (21.2) | ||||
| Backpack or walking exchange | 12.4 (.006) | 7.2 (.007) | 6.4 (.011) | 0.9 (.347) | |||||||
| Yes | 4 (16.0) | 7 (28.0) | 4 (16.0) | 10 (40.0) | 11 (57.9) | 19 (86.4) | 7(31.8) | ||||
| No | 81 (51.0) | 17 (10.7) | 16 (10.1) | 45 (28.3) | 105 (84.0) | 70 (57.9) | 34 (22.7) | ||||
| Delivery | 13.0 (.005) | 15.0 (<.001) | 14.5 (<.001) | 14.5 (<.001) | |||||||
| Yes | 21 (30.9) | 8 (11.8) | 11 (16.2) | 28 (41.2) | 30 (62.5) | 43 (82.7) | 25 (40.3) | ||||
| No | 64 (55.2) | 16 (13.8) | 9 (7.8) | 27 (23.3) | 86 (89.6) | 46 (50.6) | 16 (14.6) | ||||
| Secondary exchange | 4.7 (.194) | 0.0 (.931) | 8.6 (.003) | 6.6 (.01) | |||||||
| Yes | 70 (49.3) | 20 (14.1) | 13 (9.2) | 39 (27.5) | 92 (80.7) | 62 (55.9) | 26 (19.4) | ||||
| No | 15 (35.7) | 4 (9.5) | 7 (16.7) | 16 (38.1) | 24 (80.0) | 27 (84.4) | 15 (39.5) | ||||
Notes. DOH = department of health; HHS = US Department of Health and Human Services. The HHS approval requirement specifies that syringe exchange programs obtain annual certifications of their operations from local public health and law enforcement.
Responses received from 182 programs.
Responses received from 169 programs.
In addition, n = 38 responded “don't know” and were treated as missing data.
In addition, n = 26 responded “don't know” and were treated as missing data.
In addition, n = 15 responded “don't know” and were treated as missing data.
There were no statistically significant differences in funding source (local or state) across urbanization type. The SEPs serving exclusively rural areas, exclusively urban areas, or a combination of urban, suburban, and rural areas all reported primarily receiving either state funding (31.4%) or no public funds (37.9%). Local-only funding was notable among the SEPs serving exclusively urban areas (54.2%) and receipt of both state and local funding was reported among programs serving exclusively urban (47.4%) and a combination of urban, suburban, and rural areas (47.4%). More than half of SEPs in the Northeast (71.9%) and West (62.2%) reported receiving state funding for their exchange activities, whereas half of SEPs located in the South (50.0%) and Midwest (54.6%) reported receiving neither state nor local public funding.
Federal Funding for Syringe Exchange Programs
Three (1.6%) SEPs reported receipt of federal funds to support exchange activities, located 1 each in the West, Midwest, and Northeast. Funding was awarded through Substance Abuse and Mental Health Services Administration and CDC mechanisms and supported typical operating expenses such as syringe procurement and staffing. All of these federally funded programs also received state or local funds; federal funding helped maintain financial support during ongoing state budget cuts. No program reported using federal funding to expand services, increase hours, or add new delivery routes. One of the reported benefits to using federal funds was streamlining financial recordkeeping (e.g., not having to maintain separate accounting records for multiple funding sources). Although funding amounts were modest, programs were “proud” to have received federal funding.
Most SEPs (80.6%) intended to seek federal funding in the future. Sites intending to pursue federal funding were more likely to have legal authorization, to be DOH-affiliated or -managed, and to have stationary SEP services, but were less likely to offer walking or delivery services. Although not statistically significant, results suggest a potential association between census region and intention to pursue federal funding, with Southern and Midwestern programs less likely to report this intent (P = .12). Programs with state funding and no local funding were more likely to report an intent to seek federal funds (94.1%), compared with programs with local (73.7%), state and local (80%), or no public funding (62.2%; χ2 = 18.0; P < .001). There was no relationship between planned pursuit of federal funding and SEP volume, urbanization, or region.
Interrater agreement of the open-text responses was excellent (κ > 0.7516). There were 181 text codes from 100 programs, which grouped into several common themes (Box 1).
Themes and Paraphrased Sample Responses to Open-Text Questions About Barriers to Obtaining Federal Funding for Syringe Exchange Program Activities: United States and Puerto Rico, October 2010–March 2011
| Themes | Responses |
| Funding availability | There is no money set aside for syringe exchange programs; increased competition for a limited pot of funds; federal funds would lead to decreased local funds |
| Legal authorization and law enforcement concerns | Program is not approved; program runs “under the radar”; no formal agreement in place; verbal approval may not be readily secured in writing; have sites in many jurisdictions but do not have local contact or approval in each; support from leadership but lack local support; legal documentation requirement is too strict |
| Guidance documentation and perceived eligibility | No concrete information on eligibility; seeking guidance document; think their program is too small to be considered for federal funding; not enough minority client representation; clients do not have enough comorbidities to be funded; program lacks consistent structure, too “peer-run,” and “not bureaucratic enough” |
| Resource and collaboration challenges | Intimidated by the process of grant writing; no infrastructure for submitting applications; no infrastructure for implementing funding requirements (e.g., monitoring and reporting); time that would be required for the application and reporting is not worth it |
| Uncertainty around coordinating with state or local government for applying or implementing funds (e.g., Will federal monies allotted to the state “trickle down” to local programs? What about programs that lack legal approval?) | |
| Local politics (e.g., health department and police support but mayor opposes expansion of syringe exchange program) | |
| Restrictions and culture | Do not want federal money if it imposes restrictions on operation; would not change how they are currently doing business to pursue federal funding; anonymous program and would like to keep it that way; low-threshold program; might jeopardize the “style” of the program |
The most frequently mentioned concern was the availability and accessibility of funds (33 of 181 codes, 32% of responding SEPs). Programs perceived that no earmarked federal funds for SEPs and no increase in the total amount available would impede their ability to receive federal funds. Some programs felt that the increased competition for limited federal funds would make them inaccessible. Others articulated negative incentives to seek federal funds, including a crowd-out effect whereby local funds would be reduced if additional federal funds were received. Several programs perceived that the stigma of drug use might influence policymakers’ decisions to fund SEP activities with scarce federal dollars.
Another frequently mentioned concern was the legal requirements to apply, particularly the formal, written support from law enforcement or the program's legal status more generally (28 of 181 codes, 22% of SEPs). Some SEPs reported the certification requirement as a barrier because the program operated without any legal authorization. However, this concern was often voiced by SEPs operating multiple sites in several jurisdictions where they experienced varying degrees of local contact and political or legal support. In cases where federal funding guidelines necessitate written approval in jurisdictions where SEPs are illegal, or if funds could only be used for SEP activities in a subset of their jurisdictions (for multisite programs), this requirement posed a serious logistical concern. Even among organizations with informal local approval, securing written approval to fulfill the certification requirement was deemed arduous and politically unlikely. In several instances, years of outreach to police had garnered informal, local support for the SEP, including reduced harassment of SEP participants. However, participants felt that it would be challenging to secure written approval from the local law enforcement signatories, especially elected officials, who would not want to be perceived as “soft on crime.”
Limited guidance materials (20 of 181 codes; 20% of SEPs) was noted as a barrier to securing federal funding. Without this clarifying information, several programs perceived that they were ineligible or noncompetitive (16 of 181 codes; 16% of SEPs) because of their small size, participant demographics (such as too few minority clients), participants’ health characteristics (such as low HIV prevalence), or decentralized organizational structure (such as “too peer-run,” “not bureaucratic enough”).
Resource limitations were concerns both for submitting applications (15 of 181 codes; 15% of SEPs) and for implementing new monitoring and reporting as requirements of funding (12 of 181 codes; 12% of SEPs). Several programs lacked the technical resources and experience of grant writing and grant implementation; others did not have a means to track participant service use or oversee institutional finances but were open to such infrastructure improvements. A minority (4 of 181 codes; 4% of SEPs) expressed that their perceived administrative and bureaucratic challenges, combined with a limited pool of available federal resources, were not worth the potential benefit.
Existing guidance documents suggest that local, county, or state entities may apply for federal funds for SEP activities; however, this arrangement was a source of concern for some programs (13 of 181 codes; 13% of SEPs). Several SEPs felt that the current nature of their relationships with these entities might impede applying for or using federal funds. “On the ground” challenges included local politics, unsupportive local leadership, and local funding arrangements (such as the DOH not receiving HIV-prevention funds, or the SEP not located in an HIV-prevention target area; 9 of 181 codes; 8% of SEPs).
A final common concern was that potential requirements related to using federal funds could impede SEP operations (17 of 181 codes; 17% of SEPs) or alter program culture (14 of 181 codes; 13% of SEPs). Respondents worried that restrictions may be placed on how funds could be used, or that funds would require SEPs to provide comprehensive services (such as HIV testing and counseling, vaccinations, case management) in addition to syringe exchange. SEP culture, articulated as an open, informal, nonjudgmental, and welcoming environment, was valued, as was the ability to remain anonymous or “low-threshold.” Funding requirements that challenged SEPs’ institutional identity were clear, nonnegotiable barriers.
Associations of Anticipated Barriers to Federal Funding
More than half (62.2%; n = 89) of SEPs anticipated barriers to obtaining federal funding (Table 2). Programs anticipating barriers were more likely to operate mobile, walking, or delivery SEP services, and less likely to have stationary sites. Programs that were not legally authorized, that lacked DOH affiliation, or that were not managed by a DOH were more likely to perceive barriers to federal funding. Anticipated funding barriers were noted more frequently among small-volume SEPs and SEPs serving combined urban, suburban, and rural areas. Western SEPs were less likely to perceive barriers to federal funding than SEPs in all other census regions combined (48.8% vs 82.5%; χ2 = 16.9; P < .001). Perceived barriers to federal funding were more frequently mentioned among programs that received no public funding (90.2%) and those with either local only (72.2%) or both local and state funding sources (86.7%; χ2 = 36.0; P < .001).
Programs that perceived the HHS local requirement to be a barrier to seeking federal funding (n = 41; 23.8%) were more likely to be unauthorized (86.7% vs 17.8%; χ2 = 35.7; P = <.001), not DOH-affiliated (77.8% vs 17.7%; χ2 = 31.9; P = <.001), or DOH-managed (32.4% vs 11.6%; χ2 = 9.7; P = .002) programs. The SEPs that perceived the HHS requirement to be a barrier were less likely to have a stationary site and more likely to offer delivery services. These SEPs were also more likely to be operating in the Midwest and South. The current funding source was strongly associated (P < .001) with perceiving the HHS local requirement as a barrier: 44.9% of programs with no public funding expressed concerns over meeting this requirement, compared with 14.5%, 13.0%, and 20.0% of state-, local-, and state- and local-funded SEPs, respectively.
DISCUSSION
Support for increased access to clean syringes and availability of federal funding for these prevention activities are part of the National HIV/AIDS Strategy.17,18 We found that approximately 200 SEPs distribute life-saving HIV-prevention materials to injection drug users residing across the country through various distribution methods. These programs differ by geography (urbanization and census region), legal authorization, and health department affiliation. They rely heavily upon state and local public funding, and report ongoing funding concerns, as has been consistently reported.5 The recently lifted ban on federal funding for SEPs is a pivotal moment in federal policy toward injection drug use and an opportunity for programs to obtain the much-needed additional funds.
Survey results suggest that lifting this ban had—and may continue to have—little impact on programs’ daily operations or actual financial support immediately after the law change. Although a majority of SEPs anticipate that they will pursue federal funding, more than half anticipate experiencing barriers. For the 3 respondent programs that reported receiving federal funding and the other 8 programs or jurisdictions known to have obtained federal funding for SEP activities since the time of the study (Natalie Cramer, National Association of State and Territorial AIDS Directors, oral communication, April 201119), federal monies primarily supplement limited state and local funding. Of the 8 programs not detected by our survey as funded programs, 3 were funded after the close of data collection (i.e., false negatives in our study), 2 were jurisdictions where we experienced nonresponses for the survey, and 3 were newly created programs. None of the newly created, federally funded programs had been previously identified as SEP programs by the North American Syringe Exchange Network or the Harm Reduction Coalition. Importantly, none of the funding recipient programs had expanded services with federal funds. Programs that “received” funding did so because they requested to use a portion of the existing awards in the jurisdiction for this purpose. Until additional federal funds are available or earmarked for SEP activities, federal support appears more symbolic than functional, reflecting a policy transformation process observed with a range of other public health laws.11
Results indicate that existing receipt of public funds and a DOH affiliation may reduce real or perceived barriers to obtaining federal funding and were characteristics of the 3 funded programs. However, almost a third of surveyed programs do not have these characteristics. Even legally authorized and publicly funded programs expressed concerns about seeking and complying with federal funds for SEP activities.
Open-ended questions about federal funding barriers suggested that there may be legal, programmatic, implementation, political, and cultural challenges to seeking and complying with requirements of federal funding. Lifting the federal funding ban will not improve funding prospects for SEP operations for programs without local health department connections, local support, and highly structured operations. Bivariate associations indicated that programs located in the South and Midwest may be at a greater disadvantage for applying for federal funds, as these regions have proportionately fewer publicly funded SEPs, more legally unsanctioned programs, and reported concerns about legal documentation requirements for funding receipt. Syringe access remains critical in the South and Midwest because injection drug use persists there20,21 and may increase if drug price or supply change the route of administration among the growing population of nonmedical prescription opioid users.22
Our findings on anticipated barriers suggest several potential policy responses. Clear guidelines from federal agencies regarding how federal funds can be used to support SEP activities could dispel confusion around eligibility criteria and funding use requirements. Technical assistance could help programs interested in seeking federal funds, particularly for programs with smaller volume, without legal authorization, and without a DOH affiliation. Targeted outreach should be prioritized to SEPs operating in the Midwest and South to support the development of infrastructure and collaborations that will increase their competitiveness. More generally, legal reform is needed in several states to authorize SEP activities and permit the extension of state and local funding to SEPs that do not currently receive public funding.
Although state or local sources have provided a majority of funding for SEP operations to date, the future commitment of these funds is uncertain. Private sources of funding may see increased applications from programs previously funded by public monies, as budgets tighten at the state and local levels. Higher competition for limited private funds may result in less support for the legally tenuous programs and programs unaffiliated with governmental entities.
With no new federal funding allotted for SEPs, national policymakers must make tough decisions about which programs to fund. In addition, state AIDS directors and substance abuse prevention and treatment officials with limited budgets will need to decide whether to include SEPs among their state- and locally operated, federally funded programs. It is unclear whether public funding will support SEPs for HIV prevention and substance abuse treatment entry on a large scale, despite their strong scientific base. In a fundamental way, the survey findings indicate a clear need for dedicated federal funding for SEPs that does not require difficult-to-implement law enforcement or location restrictions and minimizes program reporting requirements.
Study Strengths and Limitations
This study benefits from several strengths. The survey had a high response rate (92.1%), a sample universe that was more extensive than other ongoing SEP surveys,5 and a mixture of closed- and open-ended questions, which allowed respondents to provide more detailed information. The high κ score for the open-text coding indicated good reliability. Conducting the survey during the specific time span under review provided a unique opportunity to collect data on barriers as the implementation process unfolded.
This study has some potential limitations that suggest avenues of future research. Although respondents were given the opportunity to elaborate on various questions, the survey instrument was not designed to develop a deeper understanding of how the law is being interpreted and implemented at the local level. The survey was also not intended to be a comprehensive assessment of the effect of the law's changes. Future studies might clarify how local law enforcement and public health agencies (who participate in the certification process) plan to respond to the law, how and where SEPs obtain information about funding opportunities, the nature and quality of collaboration between SEPs and health departments regarding funding issues, what factors have influenced implementation (such as state and local politics and bureaucratic structures), and what obstacles local, state, and federal officials have experienced in implementing the law. Though beyond the scope of the current study, more in-depth studies could also explore how programs obtained federal funding, cases where funding applications were rejected, and lessons that could be learned from their experience.
In addition, because this was a cross-sectional survey, it is not possible to assess changes over time. Longitudinal data could illuminate which funding barriers remain, and whether there is a path-dependent effect in which certain programs continue to experience disproportionate barriers to federal funding. Furthermore, it is possible that our findings underestimate the number of programs receiving federal funding, as programs contacted earlier in our telephone survey may have subsequently received new awards or had carry-forward funds approved, or, for some DOH-funded programs, may not have been aware that they had already received federal funds. The study was conducted soon after the law was passed, which may not have provided sufficient time for dissemination. However, our findings concur with those of external sources (Natalie Cramer, National Association of State and Territorial AIDS Directors, oral communication, April 201119), that few jurisdictions (11 total as of August 2011) have received federal funding for SEP activities.
Because reinstatement of the rider to the appropriations bill remains a possibility in future years, it was critical to capture early experiences and perceived barriers, to inform future implementation. Although allowing more time to pass until conducting the study would have allowed us to capture more information on how implementation is occurring, conducting our survey at a later date may have missed the opportunity to gather these data if the ban were reinstated.
Also, regression modeling could test the impact of broader factors such as state political culture and ideology, state syringe laws, local HIV epidemiology, and state funding for substance abuse treatment.
Conclusions
Since the American Journal of Public Health’s acceptance of this article for publication, the SEP funding ban has been reinstated; however, there is concerted advocacy to lift it again. If and when the SEP funding ban is removed, our data suggest ways that this legislative action can be done to maximize public health benefit, including absence of difficult-to-implement law enforcement requirements or location restrictions, increased dissemination of guidelines, technical assistance to sites, and dedicated federal funding for SEPs.
Acknowledgments
Funding for this work was provided by a Developmental Research Grant to the first author from the Lifespan/Tufts/Brown Center for AIDS Research. The funding source had no role in the design or conduct of the study, including data collection, analysis, interpretation, writing, or decision to publish.
Preliminary findings on this survey were previously presented to the National Harm Reduction Conference, Austin, TX, in November 2010.
We gratefully acknowledge the assistance of Natalie Cramer, David Thompson, and Alex Kral for advising on findings and earlier drafts of this article. We thank Graciela Vega for her assistance with data collection in Puerto Rico. We are indebted to the Harm Reduction Coalition and to the syringe exchange programs that participated in this study.
Human Participant Protection
This study was approved by the institutional review board of Rhode Island Hospital.
References
- 1.Heimer R, Kaplan EH, Khoshnood K, Jariwala B, Cadman EC. Needle exchange decreases the prevalence of HIV-1 proviral DNA in returned syringes in New Haven, Connecticut. Am J Med. 1993;95(2):214–220 [DOI] [PubMed] [Google Scholar]
- 2.Vlahov D, Des Jarlais DC, Goosby Eet al. Needle exchange programs for the prevention of human immunodeficiency virus infection: epidemiology and policy. Am J Epidemiol. 2001;154(12, Suppl):S70–S77 [DOI] [PubMed] [Google Scholar]
- 3.Des Jarlais DC, McKnight C, Goldblatt C, Purchase D. Doing harm reduction better: syringe exchange in the United States. Addiction. 2009;104(9):1441–1446 [DOI] [PubMed] [Google Scholar]
- 4.Bluthenthal RN. Syringe exchange as a social movement: a case study of harm reduction in Oakland, California. Subst Use Misuse. 1998;33(5):1147–1171 [DOI] [PubMed] [Google Scholar]
- 5.Guardino V, Des Jarlais D, Arasteh Ket al. Syringe exchange programs—United States, 2008 MMWR Morb Mortal Wkly Rep. 2010;59(45):1488–1491 [PubMed] [Google Scholar]
- 6. Consolidated Appropriations Act, Pub L 111-117, Title V, Section 505. (2010)
- 7.Lurie P, Drucker E. An opportunity lost: HIV infections associated with lack of a national needle-exchange programme in the USA. Lancet. 1997;349(9052):604–608 [DOI] [PubMed] [Google Scholar]
- 8.Barrett C. amfAR applauds lifting of ban on federal funding for syringe exchange: calls for increased investments in health research and AIDS services. amfAR News Archive. Washington DC: American Foundation for AIDS Research; 2009.
- 9.Zezima K. Bill would limit needle exchanges. New York Times. November 8, 2009; Money & Policy sect [Google Scholar]
- 10. Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act. S. 1599. 112th Cong (2011–2012)
- 11.Burris S, Wagenaar AC, Swanson J, Ibrahim JK, Wood J, Mello MM. Making the case for laws that improve health: a framework for public health law research. Millbank Quarterly. 2010;88(2):169–210 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Centers for Disease Control and Prevention Department of Health and Human Services implementation guidance for syringe services programs. Available at: http://www.cdc.gov/hiv/resources/guidelines/syringe.htm. Accessed May 15, 2010
- 13.Burris S. The Project on Harm Reduction in the Health Care System. Philadelphia, PA: Temple University of the Commonwealth System of Higher Education, Beasley School of Law; 2008. Available at: http://www.temple.edu/lawschool/aidspolicy. Accessed May 15, 2010 [Google Scholar]
- 14.Beletsky L, Grau LE, White E, Bowman S, Heimer R. The roles of law, client race and program visibility in shaping police interference with the operation of US syringe exchange programs. Addiction. 2011;106(2):357–365 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Beletsky L, Macalino G, Burris S. Attitudes of police officers towards syringe access, occupational needle-sticks, and drug use: a qualitative study of one city police department in the United States. Int J Drug Policy. 2005;16:267–274 [Google Scholar]
- 16.Fleiss JL. Statistical Methods for Rates and Proportions. 2nd ed New York, NY: John Wiley; 1981 [Google Scholar]
- 17.National HIV/AIDS strategy for the United States Washington, DC: The White House Office of National AIDS Policy; 2010 [Google Scholar]
- 18.National HIV/AIDS strategy: federal implementation plan. Washington, DC: The White House Office of National AIDS Policy; 2010 [Google Scholar]
- 19. Thompson DC, Kingwood N. First federal support for community based needle exchange programs: A Panel Presentation by SAMHSA Grantees. Oral presentation at: CDC National HIV Prevention Conference; August 15, 2011; Atlanta, GA.
- 20.Friedman SR, Tempalski B, Cooper Het al. Estimating numbers of injecting drug users in metropolitan areas for structural analyses of community vulnerability and for assessing relative degrees of service provision for injecting drug users. J Urban Health. 2004;81(3):377–400 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Roberts ET, Friedman SR, Brady JE, Pouget ER, Tempalski B, Galea S. Environmental conditions, political economy, and rates of injection drug use in large US metropolitan areas 1992–2002. Drug Alcohol Depend. 2010;106(2–3):142–153 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22.The NSDUH Report: Nonmedical Use of Pain Relievers in Substate Regions: 2004 to 2006. Rockville, MD: Substance Abuse and Mental Health Services Administration, Office of Applied Statistics; 2008: 19 [Google Scholar]