ChicagoBoston 1 Bianca Aponte, Research Associate Emilia Dunham, Senior Research Associate Nelisa Rash, Research Associate Jackie White, Project Manager Jane Hereth, Clinical Research Coordinator Lark Mulligan, Research Associate Ebonii Warren-Watts, Research Associate

“Sexual health is a state of physical, emotional, mental and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence.” --World Health Organization,

 Transgender women have HIV prevalence rates as high as or higher than other high-risk populations in the U.S.  Meta-analysis of 29 studies  >25% laboratory-confirmed HIV seropositive  Racial/Ethnic disparities  Black/African American trans women  > 50% laboratory-confirmed HIV seroprevalence  High rates of unrecognized HIV infection (>10%), with the largest percentage among young transgender women ages 29 and younger Herbst et al., 2008; Schulden et al.,

 According to the CDC, there are no theoretically-driven, evidence-based HIV prevention interventions for transgender communities  Need for comprehensive HIV prevention programs to meet the unique needs of young trans women 4

 CDC-funded pilot study in Chicago (PI: Robert Garafalo, MD)  Community-based participatory research principles  Young trans-identified staff led the writing of intervention  Based in empowerment theory  Holistic, theoretically-driven curriculum grounded in the lived realities many young trans women face  Focuses on day-to-day issues facing young trans women that can complicate comprehensive HIV prevention efforts  “With” not “on” trans communities 5

 Enrollment and retention was possible  51 participants enrolled in 6 months  Retention and session attendance were high  84% of participants were retained over the study  The participants liked it!  More than 90% of participants: ▪ Would recommend to other young trans women ▪ Better understood the issues surrounding unsafe sex ▪ Felt better about their futures 6 Garafalo et al., 2012

 Following the intervention (3-month follow-up), participants reported reduced sexual risk  Decreased… ▪ # of times participants had receptive anal sex with casual partners ▪ #of main partners  LifeSkills was acceptable and feasible  Warrants testing in a larger efficacy trial 7

 To test whether the LifeSkills curriculum works to reduce HIV risk for young trans women ages at risk for HIV acquisition or transmission  Two U.S. cities: Boston and Chicago  Enroll 375 young trans women  5-year research grant – R01 National Institute of Mental Health – randomized controlled trial 8 Investigators: M. Mimiaga S. Reisner Investigators: R. Garafalo L. Kuhns

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 Enroll 375 young at-risk trans women ages  Randomize participants (like the flip of a coin)  Three “arms” (e.g., different types of programs):  Program 1: Standard-of-care program (N=150)  Program 2: 6-session group-based LifeSkills intervention (N=150)  Program 3: 6-session group-based general health program (N=75)  All three programs receive HIV and STI (Chlamydia and gonorrhea) testing and pre-post test risk reduction counseling  4 assessments: baseline, 4, 8, 12 months post-intervention  Primary outcome: Number of unprotected anal or vaginal sex acts in the past 4 months 10

First Visit Lasts 2 hours ($25) Consent/Assent Fill out Questionnaire STI/HIV Testing Second Visit – Randomization (flip of a coin) Lasts 20 min or 2 hours Program 1: Control Lasts 20 minutes ($10) Program 2: “LifeSkills” 6 group sessions, 2 hours each (2 sessions x 3 weeks) ($10 per session; $10 for completing 2 sessions in a row) Program 3: General Health 6 group sessions, 2 hours each (2 sessions x 3 weeks) ($10 per session; $10 for completing 2 sessions in a row) 4 Month Visit Lasts 2 hours ($50) Fill out Questionnaire STI/HIV Testing 8 Month Visit Lasts 2 hours ($50) Fill out Questionnaire 12 Month Visit Lasts 2 hours ($50) Fill out Questionnaire STI/HIV Testing Participants in Program 1 and 3 Offered LifeSkills Sessions N=150 N=150 N=75 11

12 Jane HerethAmy Johnson Lark Mulligan Ebonii Warren-Watts Robert Garofalo Lisa Kuhns

Matthew Mimiaga Bianca Aponte Nelisa Rash Sari Reisner Emilia Dunham Jackie White 13 Mick Rehrig

Who may be eligible?  Age: 16 to 24 years-old  Trans woman/ on the MTF spectrum  Sexually active  Any HIV serostatus First groups begin June 12 th ! 14 Begins March 8, 2012

 Community events  Social networks  Word-of-mouth  Referrals  Organizations and programs  Peer groups  Healthcare providers  Online and website  Street outreach 15 Begins March 8, 2012

 Volunteering/giving back to youth orgs like Broadway Youth Center and BAGLY  Community Referral Program  Existing Networks  Facebook!  Throwing events! 16

 Talk to people about the study  Network and make referrals  Study materials  Hand them out, make visible, give to colleagues, etc  Promote online  Referrals 17 Begins March 8, 2012

18 SessionTitle 1Pride 2Communication and Respect 3Skill Building around Navigating Employment, Housing and Healthcare 4Knowledge and Self- Protection 5Partner Negotiation 6Tying it all Together

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 These are programs not studies for trans women, but may have research component  Programs provide direct service and often have more flexibility, but research is often a good step toward creating programs  When LifeSkills can’t help, we refer to partner organizations 21

 Research studies can affect social change  Research studies can affect community resources and programs by showing need for more funding  They can help contribute to public awareness  They can add to scientific knowledge  They can affect law and policy But we don’t have a lot of them!

 Fact sheets for policy makers  Mass. drew state data to write their own, which were used to strengthen support for the Trans Rights Bill. (Another study showed 76% MA residents in favor of the bill.)  Topic specific generated for gov’t agencies (SAMHSA)  Allows for adding to the literature on trans health  Helps policy advocacy: commitment to data collection (HHS), trans veterans health rights, Office of Personnel Management

 Institute of Medicine (IOM): The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding  City non-discrimination bills (SF, Boston)  WPATH SOC  Healthy People 2020

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Chicago  Jane Hereth:  Lark Mulligan:  Ebonii Warren-Watts: Boston  Bianca Aponte:  Emilia Dunham:  Nelisa Rash:  Jackie White: 27

Children's Memorial Hospital 2300 Children's Plaza Chicago, IL Call or Text: (773.24LFSKL) Facebook: Fenway Health 1340 Boylston Street Boston, MA Call or Text: Facebook: 28