SUMMARY The End of AIDS? President Obama and former Secretary of State Hillary Clinton have proclaimed the End of AIDS in response to advances in HIV science. The Rhetoric of the “End of AIDS” has programmaDc and policy implicaDons. Changes in HIV prevenDon: • TesDng • EffecDve treatment • Undetectable viral load • EffecDve interrupDon of perinatal transmission, Post-‐ Exposure Prophylaxis (PEP) and Pre-‐Exposure Prophylaxis (PrEP)
Ethics of Black and Latino Gay Men’s Participation in HIV Pre-Exposure Prophylaxis (PrEP) in New York City Andrew R. Spieldenner, Ph.D.
Hofstra University, Department of Rhetoric
INTRODUCTION PrEP is an ongoing demonstration project and trial in various sites, as well as being an FDA-approved medical intervention (Macklin & Cowan, 2012; Philpott, 2012)
Public PercepDon
AIM 1) The study will elicit information on conditions to participate in a PrEP trial AIM 2) The study will explore conditions about network referrals to PrEP. This is rooted in autonomy (understanding of informed consent about PrEP trials) and justice (access to PrEP as an individual and a network)
Minor Themes
Inappropriate disclosure to family and friends
Major Theme
Altruism in taking part in HIV clinical research
Ethical consideration of PrEP research includes a focus on ongoing community involvement, collaborative clinical and research relationships with participating populations, and concern over recruitment (Cohen et al., 2013; Dutta, 2013; Philpott, 2012). For example, what would lead you to identify a friend or former sex partner to PrEP? Or, how would you feel if someone you knew referred you to PrEP?
This study will explore Black and Latino gay men’s willingness to PrEP research in New York City.
Major Theme
Worry about how others view PrEP usage (promiscuity)
Black and Latino gay men are disproportionately impacted by HIV (CDC, 2006). Often, Black and Latino gay, bisexual and other men who have sex with men are identified in HIV interventions as “hard to reach” and many interventions in New York use social networking strategies as recruitment (Schneider et al., 2013; Vega et al., 2012)
ASSESSMENT QUESTIONS
ANTICIPATED THEMES
Knowledge about PrEP
METHOD
Methodology– QualitaDve focus groups as a culturally appropriate approach. Intake and exit survey. Par=cipants – Eligible if a) at least 18 yrs and not over 50 years old; b) self idenDfy as Black or Hispanic/LaDno; c) male; d) gay or bisexual; and e) work, socialize or receive healthcare services in NYC. Data Collec=on – 6-‐8 segmented groups, conducted at a community agency. Data Analysis – Nvivo & SPSS, grounded theory of coding, Kappa staDsDc of .80.
Minor Themes Belief that PrEP is lifelong Don’t know what the pill looks like
POTENTIAL POLICY & PROGRAM RECOMMENDATIONS
• • • • •
Ways to involve Black and LaDno gay men in ethical ways Ways to improve informed consent for research and demonstraDon projects Address access to care issues post-‐trial Improve educaDon at the community sebngs about combinaDon (behavioral and biomedical) HIV prevenDon packages Increased understanding of potenDal sDgma about “PrEP whores” at individual, familial and social levels
COMMUNITY DISSEMINATION PLAN
Community Advisory Board • Leaders in the field and community Town Hall TranslaDon of Findings • 1-‐sheet will be developed on concerns and findings based on the study • Disseminated via the community partner • Findings will be presented at Hofstra University Office of MulDcultural Student Affairs and at the community partner ACKNOWLEDGEMENTS This is a pilot study under a NaDonal InsDtute on Drug
Abuse grant (#R25 DA031608-‐01, Principal InvesDgator: Celia Fisher, PhD).