1. Barriers And Facilitators To HIV Vaccine Trial Participation Among New York City Latinos Bahaa Daoud M.D. Candidate, c/o 2015 George Washington University School of Medicine

2. Introduction Lack of Latino representation in biomedical research may limit generalizability Need to dispel misconceptions & build trust in the Latino community Focus on: – Safety & adverse effects (e.g. VISP) – Trust/mistrust of research institutions – Possible skepticism towards Western medicine

3. Objectives Understand factors that influence participation Help develop more culturally specific recruitment strategies to ensure engagement and participation Enhance generalizability of future studies

4. Methods Advertising around CUMC and online Telephone prescreening – Latino/Latina, HIV-negative, 18-50 years old Six sessions: – 41 question questionnaire at the beginning – Focus group assessing barriers and facilitators – Conducted in both English and Spanish

5. People with HIV/AIDS by UHF Neighborhood, 2007 % of Population in 2007

6. Methods Advertising around CUMC and online Telephone prescreening – Latino/Latina, HIV-negative, 18-50 years old Six sessions: – 41 question questionnaire at the beginning – Focus group assessing barriers and facilitators – Conducted in both English and Spanish

7. Demographics 50 participants from all 5 NYC boroughs 84% male 78% spoke mostly Spanish as a child

8. Barriers & Facilitators VIEWS ON VACCINES IN GENERAL – Most focus group participants thought that vaccines are beneficial to health – They prevent you from getting sick in the first place. They are important. – Participant

9. Barriers & Facilitators PRE-PARTICIPATION – 94% agree a potential vaccine will be thoroughly tested before use on humans – 60% are afraid of needles & cannot handle blood – 28% agree that a vaccine will harm them – 28% agree that a vaccine trial would take up too much of their time

10. Barriers & Facilitators DURING & AFTER PARTICIPATION – 90% agree there will be problems obtaining health insurance – 64% agree that the vaccine would work – 30% agree that their partner wouldnt have sex with them – 26% agree they would be at higher risk for other diseases – Major problem with social stigma Society will single me out if I were vaccinated for HIV. - Participant I will somehow get HIV and I will be shunned by my community – Participant

11. Barriers & Facilitators COMMUNITY CONTRIBUTION & ALTRUISM – 98% agree they would be helping educate others – 88% agree they would be helping their community – 86% agree they would be recognized for altruism – 71% agree that others would follow their lead

12. Barriers & Facilitators TRUST/MISTRUST OF INSTITUTIONS – 80% trust large academic institutions (e.g. Columbia) – 92% agree academic institutions care about pt safety vs – 50% agree private companies care about patient safety – 63% agree private companies only care about profits Academic institutions have ethical guidelines & follow strict protocols while private companies do not. – Participant

13. Barriers & Facilitators HEALTH & HOME REMEDIES – 42% only use Western medications – 25% agree they dont need a vaccine for HIV protection – 24% would rather use a home remedy for HIV prevention – 20% agree they poses no risk factors for contracting HIV My use of home remedies is influenced by my culture – not my religion. – Participant

14. Willingness To Participate Association between specific barriers/facilitators and willingness to: – To participate in a study starting tomorrow – To be put on a waitlist for an upcoming study – To speak to a counselor today

15. Specific Barriers & Willingness To Participate

16. Specific Facilitators & Willingness to Participate

17. Conclusions Use of home remedies was associated with a significant decrease in willingness to join a prospective study Public recognition for altruism decreased willingness to talk to a counselor – Possibly due to societal stigma – must be eradicated Through better education Increased community awareness – Anonymity is of extreme importance Better to approach through academic institutions rather than private companies

18. Acknowledgments HVTN & RAMP Scholars Program Dr. Beryl Koblin Member, Lab Head Infectious Disease Prevention New York Blood Center Dr. Magdalena Sobieszczyk Assistant Professor of Clinical Medicine Division of Infectious Diseases Columbia University Medical Center

19. Acknowledgments www.hafnyc.orgwww.queenspridehouse.org

20. Acknowledgements Jorge Benitez – Recruitment Coordinator, CUMC Marianella Zorrilla – Regulatory Affairs Coordinator, CUMC Jay Loeffel – Administrator, NYBC Tasha Vasquez – Coordinator, NYBC Debbie Lucy – Director of Clinical Studies, NYBC Evelyn Rivera – Retention Specialist, NYBC Kimberly Morales – Recruitment Specialist, NYBC