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Original Studies

#Testathome: Implementing 2 Phases of a HIV Self-Testing Program Through Community-Based Organization Partnerships in New York City

Hubbard, Stephanie J. MPH, MA; Ma, Maria MPH; Wahnich, Amanda MPH; Clarke, Alyson MPH; Myers, Julie E. MD, MPH∗,†; Saleh, Lena D. PhD

Author Information
Sexually Transmitted Diseases: May 2020 - Volume 47 - Issue 5S - p S48-S52
doi: 10.1097/OLQ.0000000000001151
  • Free

Access to HIV testing in New York City (NYC) has increased since 2008,1 but disparities in testing rates still exist among impacted communities.2 Individuals may face many barriers to HIV testing due to lack of access to medical care, being un/underinsured, and reluctance to seek testing in clinical settings due to medical distrust.3–6 Structural inequities and systems of oppression are embedded in healthcare settings, including through provider-enacted discrimination toward patients,7–9 thereby affecting an individual's comfort in using and accessing health services due to fear of discrimination.7,10–12 HIV self-tests (HIVSTs) present an opportunity to address these barriers and increase HIV status awareness, but HIV-affected communities (ie, priority populations), experience difficulties accessing HIVSTs, including lack of awareness and cost.13

To date, many of the efforts to increase access to HIVSTs in the United States have focused primarily on gay, bisexual and other men who have sex with men (MSM),14,15 including an HIVST giveaway implemented by the NYC Health Department that leverages online recruitment and home delivery of HIVSTs.16 Although this giveaway mechanism has been successful at reaching some priority populations (eg, MSM), it excludes those with limited online access or unstable housing. In response, the NYC Health Department launched the Community Home Test Giveaway (CHTG), a partnership with select community-based organizations (CBO) to pilot distribution of free HIVSTs among priority populations disproportionally impacted by HIV17 in NYC. Here we describe the program model, including feasibility of partnering with CBOs, as well as program reach and key outcomes.

METHODS

CBO Partners

The NYC CBO partners were recruited through a formal application process. A call for applicants was disseminated through multiple NYC Health Department listservs. For consideration, organizations had to: (1) demonstrate experience working with 1 or more of the program's priority populations; and (2) not have an existing HIV testing program. Interviews were conducted with applicant organizations to assess capacity and relevant experience in reaching priority populations. Priority populations include those most impacted by HIV in NYC: MSM, including black and/or Latino MSM; cisgender women, especially those who identify as black and/or Latina and live in high-poverty neighborhoods; transgender and gender nonconforming (TGNC) individuals; and individuals who are unstably housed, experience transactional sex and/or intimate partner violence, share needles, or have partners living with HIV. The NYC Health Department recognizes that persons may have multiple, intersecting identities and, therefore, these categories of priority populations are not mutually exclusive and based on both epidemiological data and community input.

Selected CBO partners had diverse missions, experiences, and capacities, and focused on specific populations, such as TGNC individuals, justice-involved individuals and families, and persons residing in shelters, resulting in a total of 12 partners during the second phase.

The NYC Health Department conducted conference calls, in-person site visits, and biannual all-partner meetings as part of a continuous quality improvement process.

Program Models

Phase 1

The CHTG launched phase 1 in March 2017 with 10 CBO partners as a 6-step process (Fig. 1). During outreach activities and onsite programming, CBO partners promoted the CHTG in-person to potential participants (1) and distributed recruitment cards containing the URL to an online eligibility questionnaire to those interested (2). Participants navigated to and completed the eligibility questionnaire (3). Eligible participants lived in NYC, had an HIV-negative or unknown HIV status and self-identified as a member of 1 or more priority populations. Eligible participants received a “discount code” by e-mail (4) and were instructed to order their free HIVST through the manufacturer's website (5) to receive the HIVST via mail; those identifying as unstably housed or lacking mail receipt access could elect to pick up an HIVST at a participating CBO. Finally, eligible participants were emailed a follow-up survey, with a $25 e-gift card incentive for completion, 4 to 6 weeks after completing the eligibility questionnaire to assess their experience (6).

F1
Figure 1:
CHTG phase 1 and phase 2 program flows. CHTG indicates Community Home Test Giveaway.

Phase 2

Through extensive continuous quality improvement efforts with CBO partners, it was identified that the required online components of phase 1 (steps 3–6) posed significant barriers to scale-up. This suggested substantial revisions to the program model, resulting in the design and deployment of phase 2 in September 2018, including expanded membership to 12 CBO partners. Phase 2 consists of 4 steps (Fig. 1). As described previously, CBO partners promoted the CHTG to potential participants (1). Interested participants were asked to complete a voluntary, paper-based demographic form (2). Independent of form completion or responses, participants could select to receive an HIVST or one-time use access card (Fig. 2) redeemable for a free HIVST at a participating retail pharmacy chain (3). Participants were asked to optionally provide an email address to receive a follow-up survey with a $25 e-gift card incentive for completion, 6 to 8 weeks after the initial interaction with CBO staff (4).

F2
Figure 2:
CHTG phase 2 access card holder.

Data Collection

During phase 1, participant data were collected through the online eligibility questionnaire and follow-up survey utilizing a secure online platform. In phase 2, a self-administered, paper-based demographic form was used in place of the eligibility questionnaire, and an adapted version of the phase 1 online follow-up survey was deployed. Throughout phases 1 and 2, CBOs reported monthly quantitative data and program update narratives.

Measures and Evaluation Analysis

Program reach to priority populations was assessed through descriptive frequencies of the following items from the eligibility questionnaire and demographic form: participant demographics, sexual health characteristics, and HIV testing history. Using descriptive frequencies, the follow-up survey was used to assess demographic and sexual health characteristics, prior awareness of HIV self-testing, participant experience in the CHTG, potential barriers to accessing the HIVST, experience using the HIVST and attitudes toward the HIVST. Monthly reports from and site visits with CBOs were used to measure key program outcomes, including: distribution of recruitment cards, access cards or HIVSTs; neighborhood and method of reach; and strengths, challenges and lessons learned.

RESULTS

Phase 1

From March 2017 to January 2019, CBO partners (n = 10) distributed approximately 22,000 recruitment cards in-person (range, 1–4500 across CBOs). Of participants who received a recruitment card, 0.5% (120 of 22,000) completed the eligibility questionnaire; 83% (100 of 120) were eligible; and 75% (75 of 100) of those eligible used the “discount code” to receive a free HIVST, including 23% (17 of 75) through pick up from a participating CBO and 77% (58 of 75) by mail. Of eligible participants (n = 100), 91% were black or Latino/a; 49% were black and/or Latina cisgender women; 9% identified as TGNC persons; 23% were MSM (among whom 91% (21 of 23) were black and/or Latino MSM); 27% were persons who exchanged sex; 29% were unstably housed; and 80% were living in high-poverty neighborhoods (Table 1). Over one third (35 of 100) reported having never tested for HIV before their participation in the CHTG.

T1
TABLE 1:
Program and Participant Demographic Data From Phase 1 and Phase 2 *

Among eligible participants, 42% (42 of 100) completed the follow-up survey. Among these respondents, 71% (29 of 41) reported using the HIVST and zero reported a reactive test result. The majority of respondents reported positive attitudes toward the HIVST: 84% liked the HIVST because it did not require a visit to a medical clinic or testing site; 68% liked that they were able to test in private, and 52% liked that they did not have to wait long for their test result and were able to test on their own schedule. Among those who reported using the HIVST, 60% reported testing sooner than they would have without involvement in the CHTG. All respondents who chose to pick up the HIVST from a CBO partner reported a positive CBO experience.

Phase 2

From September 2018 to August 2019, 403 participants received an HIVST kit in-person (57%, 229 of 403) or 1-time use access card (43%, 174 of 403) from CBO partners (range, 2–139 across CBOs). Of the 174 who received the access card, 13% (23 of 174) redeemed it at a participating pharmacy; totaling 252 HIVSTs obtained by participants either by pharmacy redemption (23) or from CBOs in-person (229). Of participants who received an HIVST or access card (n = 403), 41% were cisgender women (of whom 91% were black and/or Latina); 16% identified as TGNC persons (of whom 83% were black and/or Latinx); and 7% identified as MSM (of whom 77% were black and/or Latino); 8% were persons who exchanged sex; and 6% experienced intimate partner violence (Table 1). Among those who responded about the recency of their last HIV test (91%), 20% had not tested for over a year and 12% had never tested before their participation in the CHTG.

Among participants who opted to receive the follow-up survey (n = 184), 14% (26 of 184) completed it. Top reasons for participating in the CHTG included wanting to try the HIVST (38%), getting tested (35%), and trusting and being encouraged by CBO staff to get tested (35%). Of those who reported using the HIVST (46%), nearly all liked and preferred the HIVST to testing in a clinic (92%). Top reasons reported for liking the HIVST included: the ability to test in private (67%), no waiting for results (58%), easy to use (50%), and no requirement of discussion with a counselor or clinician (42%). The majority (58%) of those who took the HIVST reported testing sooner than they would have otherwise. No reactive test results were reported.

DISCUSSION

Through 2 unique phases of implementation, this innovative NYC Health Department-CBO partnership successfully distributed HIVSTs to priority populations throughout NYC. The CBOs were able to reach and offer HIVSTs to populations broader than those easily recruited online at rates comparable to other non–web-based strategies.18–20 That a high proportion of CBO partners were successful in distributing HIVSTs to priority populations supports the feasibility of implementing the program with diverse organizations that differ in populations served, settings, and scopes. However, it is important to note that CBO characteristics, such as infrastructure, staffing capacities, and annual operating budgets, were identified through CBO partner discussions as key factors in the variation of number of recruitment cards, HIVST kits, and HIVST access cards distributed, explaining the wide range across CBOs. Follow-up survey data from both phases of the CHTG suggest positive attitudes toward and high acceptability of HIVSTs as a testing method among priority populations, similar to other study findings,18,21–23 thereby supporting HIV status awareness and access to HIV testing overall through the distribution of HIVSTs. As such, the authors recommend continuing to identify and scale-up innovative strategies to distribute HIVSTs to populations most impacted by HIV, especially as we get closer to ending the epidemic and those most impacted become harder to reach.

Despite distributing a large volume of recruitment cards in phase 1, limited Internet and computer access among priority populations served as barriers to accessing required online components, a finding in other online health programs24 that can be attributed to the digital divide within the United States.25,26 Elimination of the online eligibility questionnaire in phase 2 allowed for in-person HIVST distribution, leading to a 336% increase in HIVSTs received by participants in almost half the time (75 HIVSTs across 23 months in phase 1 versus 252 across 12 months in phase 2). As redemption rates of the 1-time use access card were low (similar to other study findings23), the NYC Health Department continues to work with CBO partners to identify and address redemption-related barriers. An additional limitation to note is though follow-up survey rates are comparable to other studies for phase 1 (42%), phase 2 rates are quite low (14%) due in large part to email address errors and their voluntary provision.

A key benefit of this partnership model was the ability to continue reaching priority populations despite eliminating the eligibility component in phase 2 (Table 1). However, phase 1 and phase 2 data cannot be compared due significant differences in program model and implementation, an important limitation to note. Partnering with CBOs and leveraging established community connections is a vital, effective way to reach priority populations and increase equity in the delivery of HIV prevention and care services.27,28 The NYC Health Department-CBO partnership has been integral to interpreting the successes and challenges of the program models, identifying barriers to implementation (especially identifying Internet access as a key issue), and ensuring that quality improvement and model revision needs are addressed. Building a model that is based on implementation of program activities into existing services where priority populations are already reached allows for greater integration and ability to leverage existing community relationships, ultimately supporting access to HIV self-testing.

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