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Mapping Pathways - Community Perspectives on PrEP


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In response to recent news from the FDA regarding the use of the drug Truvada for prevention, Mapping Pathways U.S. partners AIDS United and AIDS Foundation of Chicago presented a webinar June 19 focusing on the ARV-based strategy PrEP (pre-exposure prophylaxis.) During the webinar, key findings from the Mapping Pathways online survey and stakeholder interviews were presented to help illuminate the wide-ranging perspectives of advocates, clinicians, people living with HIV, policy makers and others regarding PrEP. While the U.S. context was highlighted, comparisons/contrasts were drawn with the opinions of individuals in South Africa and India. These are the slides from that webinar.

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Mapping Pathways - Community Perspectives on PrEP

  1. 1. Mapping Pathways Community Perspectives on PrEP
  2. 2. Webinar Housekeeping • All participants are in listen-only mode • We will open the call for discussion after the presentation • Use the chat feature at any time during the webinar to submit your questions
  3. 3. What We’re Going to Cover • What Mapping Pathways Is • Definition of Terms • What Mapping Pathways Did • U.S. Perspectives of ARV- Based Strategies • U.S. Advocacy • What You Can Do
  4. 4. What is Mapping Pathways?• Multinational project, began 2011• Funding – Merck 2011 – Merck and NIH (BTG Bridge) 2012 • AIDS Foundation of Chicago, AIDS United, Desmond Tutu HIV Foundation, RAND, Baird’s CMC• Review potential social, economic, and clinical impacts of ARV-based prevention• South Africa, India, U.S.• Current partners include AIDS Foundation of Chicago, AIDS United, Desmond Tutu HIV Foundation, RAND, Baird’s CMC
  5. 5. Why Mapping Pathways?• Critical to ask questions about how, if, and where these strategies fit on the prevention maps of cities, states, and/or countries• Develop and nurture a research- driven, community-led global understanding of emerging evidence around ARV-based prevention strategies
  6. 6. Why Mapping Pathways?• Provide research and analysis communities and policymakers need to formulate coherent, evidence- based decisions for HIV/AIDS treatment and prevention strategies in the 21st century• Explore different perspectives on the evidence base and the implications for decision making
  7. 7. What Mapping Pathways Is Not• Mapping Pathways is not advocating for any specific strategy in any specific context• It is not trying to imply one strategy is “better” than the other• Nor is it trying to imply one strategy should receive more/less resources• It is not a “PrEP feasibility” study
  8. 8. What Mapping Pathways Did • 2011 – Data collection – Online survey (grassroots) – Stakeholder interviews (grasstops) – Literature review (empirical evidence base) – ExpertLens (where are the fault lines?) • 2012 – Data dissemination
  9. 9. Community and Stakeholder Engagement• Engaged diverse stakeholders and community members from each partner country – Advocates – Researchers – Elected officials – Government agency heads – Industry – People living with HIV – Service providers – Clinicians – And others!
  10. 10. Definition of ARV-Based StrategyTerms • TLC+ (not “treatment as prevention”) • PrEP (not “treatment for prevention”) • ARV-based Microbicides Everything (not “topical PrEP”) You Wanted to Know about • PEP (occupational, IDU, ARVs, *But Were sexual exposure) Afraid to Ask
  11. 11. Other Terms in Use
  12. 12. PrEP • Pre-Exposure Prophylaxis • Provision of anti-retroviral drugs to people at risk of HIV • All trials to date have been on tenofovir & Truvada • 3 trials = PrEP to reduce HIV infection risk – i-PrEX (Truvada in gay men and trans women) – Partners PrEP (Truvada and tenofovir in heterosexual couples) – TDF2 (Truvada heterosexual men & women) • 2 trials = no benefit of PrEP as prevention – FEM-PrEP (Truvada in women) – VOICE* (tenofovir arm stopped, oral Truvada arm continues in women)
  13. 13. PrEP• Follow-up research is being conducted on each of the previously mentioned trials• More research into real-world applications is needed• Demo projects in Miami and San Francisco for gay men, MSM, and transwomen• Some physicians have been prescribing PrEP for off label use, particularly since the positive outcomes of the i-PrEX trial
  14. 14. FDA Review of PrEP• May 10 FDA advisory committee recommended that the FDA approve Truvada as PrEP for high-risk individuals• Recommendation is non-binding• FDA pushed back review of Gilead’s Truvada for prevention to September 14
  15. 15. What is the FDA looking for?• Risk Evaluation and Mitigation Strategy (REMS)• Medication guide• Community education• Provider training• Implementation
  16. 16. What are we talking about today?• Online survey• Stakeholder interviews Microbicides PEP PrEP PEP PEP
  17. 17. What We Asked• How important are each of the strategies in your country?• What information do you need to make decisions?• What are your concerns?
  18. 18. Online survey• Grassroots• May – November 2011; India, South Africa, United States• 1,069 respondents, nearly 70% urban• Majority were from U.S.• Main professions/identities – Advocates/activists – ASO workers – NGOs with AIDS services – Doctors/clinicians – People living with HIV
  19. 19. Online survey Majority respondents U.S., no significant differences across countries
  20. 20. U.S. Online Survey Respondents• 510 respondents• Gender – 61% male – 37% female• Sexuality – 37% heterosexual – 48% gay• Age – 25% 18-35 years old – 23% 36-45 years old – 31% 46-55 years old• Location – 72% urban – 9% rural
  21. 21. U.S. Online Survey Results—Interest & Involvement• The majority of people had thought about and discussed these strategies, and were willing to give time/resources to help make people more aware of them• 83% spent time thinking about ARV-based prevention strategies• 84% have been involved in formal and casual discussions with colleagues and advocates about ARV-based prevention strategies• 83% expressed willingness to help build awareness of ARV-based prevention strategies
  22. 22. U.S. Online Survey Results—PrEP
  23. 23. U.S. Online Survey Results—Advocacy• Most respondents felt that the following information would be useful in their advocacy efforts – Cost of strategies – Challenges of implementing strategies – Indirect outcomes of implementing strategies, such as strengthening of health care systems or identifying new HIV infections – Perspectives of community leaders, government officials, and experts
  24. 24. U.S. Online Survey Results—Concerns• Majority of concerns: – Drug resistance – Side effects – Costs – Risk disinhibition – Re-directing resources – Real-world applicability• Other concerns: – Profit motives of pharmaceutical industry – Politics – Stigma
  25. 25. U.S. Online Survey Results—Concerns “I find it hard to “We dont have all understand why the data on the people will take an impact of the “Corporate profit expensive, less medications in the over the health effective pill than use long run” benefits of the condoms” millions” “Simply put, insurance “I am deeply concerned companies are not going that the political to fund these prevention opposition will succeed in strategies because of its keeping these options out sexual nature” of peoples hands”
  26. 26. U.S. Online Survey Results—Information Wanted• Cost of strategies, funding• Comparisons with other strategies and cost-effectiveness comparisons• Implementation information including – Lessons learned from other implementations – Geographical information – Political situation• Opinions on the strategies from decision makers, impacted communities, and healthcare workers
  27. 27. U.S. Online Survey Results—Information Wanted “Recommendations “What policy makers on which approach and government would be more useful officials think and (PEP or PREP) in a vote on these issues” particular country” “I would like to see data on the efficacy of the “As the research various methods and continues to also on side effects and evolve, how the other possible negative opinions change outcomes of utilizing over time” each method”
  28. 28. Stakeholder Interviews• To complement online survey, conducted 43 semi-structured interviews with selected “grasstops”• India=9• South Africa=13• U.S.=21* (19 individuals) – * Two group discussions (6 individuals per) in U.S. – each group counted as 1 individual for coding purposes
  29. 29. Stakeholder Interviews• All had ability to exert some degree of influence on policy, but disciplines varied considerably – Clinical – Advocacy – Research – Academia – Political – Administrative• Many wore multiple hats - not easy to classify
  30. 30. Stakeholder Interviews • Assess views of policy implications of new ARV prevention science – What are your existing perceptions about ARV-based prevention strategies? – What are your perceptions about the evidence base for these strategies? – What evidence would be useful?
  31. 31. Stakeholders and PrEP Figure 8. Likely Programmatic and Policy Impacts of PrEP“Cost effectiveness is important. Realistically there are way too many couples to put all negative partners on treatment. We need to reach thepeople who are so vulnerable they can’t negotiate condom usage regularly. We need to know if they could take medication regularly enough to be effective. It’s a great tool, but how to use it as sparingly as possible and how many resources should we devote to it.”
  32. 32. Stakeholders and PrEP Figure 8. Likely Programmatic and Policy Impacts of PrEP
  33. 33. Stakeholders and PrEP Likely Programmatic and Policy Impacts in Detail
  34. 34. Stakeholders and PrEP Does the evidence support changing guidelines?
  35. 35. Stakeholders and PrEP It will be hard for an individual to accept that he or she is “high-risk” and should take this treatment. [INDIA] I am skeptical about how to use the PrEP results… the guidelines could be modified to include abused women, sex workers, couples wanting to conceive, MSM who self ID as high risk, but how do you put that in … at the discretion of the clinician? [RSA] Cost effectiveness is important. Realistically there are way too many couples to put all negative partners on treatment. We need to reach the people who are so vulnerable they can’t negotiate condom usage regularly. [UNITED STATES]
  36. 36. A U.S. Pharmacist’s Perspective on PrEP “Not knowing which customers are HIV+ and HIV- leaves the pharmacist unable to provide the proper consultation for the patient. If they are getting Truvada do they need a protease inhibitor? It would be useful if there were different names for Truvada when it was used as prevention—Truvada 1 and Truvada 2, for example.”
  37. 37. So, what does all of this mean?Many stakeholders believe that scientific results provingthe efficacy of vaginal microbicides, PrEP, and TLC+ arenot yet sufficient to successfully implement thesestrategies in the United States. Funders and policymakers must understand and address stakeholdersupport as well as stakeholder resistance whendeciding whether or not to implement any ARV-basedprevention strategy in the U.S., India, or South Africa.
  38. 38. So, what does all of this mean?• Evidence is more than P-values and confidence intervals• Community members and stakeholders’ experiences, perspectives, and collective wisdom are part of the evidence base, just as is the science is and must be equally valued
  39. 39. What YOU Can Do• Integrate these perspectives into community conversations about ARV-based prevention• Seek out perspectives in your community• Use the MP tools and outcomes to identify YOUR community’s thoughts, concerns, etc.• Educate your community – Mapping Pathways factsheets – Host MP community education session with AIDS United’s Organizing Team – Become a MP Media Advocate
  40. 40. What YOU Can Do• Stay connected to Mapping Pathways – –• U.S. Conference on AIDS in Las Vegas this fall• Stay tuned for monograph and articles!
  41. 41. Mapping Pathways at AIDS 2012• July 22 11:15am – 1:15pm Satellite: Session Room 9 – “From Revolution to Reality: How Will New Science Impact the U.S. National HIV/AIDS Strategy?”• July 23 12:30pm – 2:30pm Poster Presentations• "Mapping Pathways: Developing the evidence base for biomedical prevention strategies“ (MOPE591)• "Synthesizing the empirical evidence for ARV-based prevention strategies to map pathways to sound HIV prevention planning” (M0PE590)• July 24 6:30pm – 8:30pm Satellite: Mini Room 2 – “Microbicides: The Road Ahead”• July 25 10:30am – 12:00pm MSM NWZ, Global Village – “Is it Celebration Time? What needs to happen for gay men/MSM to make the most of ARV-based prevention (PrEP, rectal microbicides and treatment as prevention) around the world.”
  42. 42. U.S. Advocacy—Challenges, Opportunities, Activities• FDA sNDA• “Tea bag” science• Cost• Access• Implementation• Community stigma• National PrEP working group led by AVAC –• Demo projects• Policy papers
  43. 43. Addressing Stigma with Real Voices and Experiences Instead of denigrating people on PrEP as willful, filthy whores, what if we respected them as people who were willing to venture into uncharted territory for their own health and the good of the world?
  44. 44. Addressing Stigma with Real Voices and Experiences PrEP didn’t make me stop using condoms. Instead PrEP provided me with protection that I would use consistently, rather than protection that I was already rejecting.What has angered me the most, is watchingand listening to doctors, politicians, andexperts decide what my choices and risksshould be. For most of them, it is their job.But for me.... it is my life.
  45. 45. Discussion• What conversations are taking place in your community about PrEP?• What information would be useful to help your community, city, state, etc. determine how and if to move forward with PrEP?• Do you think the findings of the survey and stakeholder interviews reflect the perspectives of your community?
  46. 46. Resources• AVAC• MTN• HPTN• IRMA• Aidsmap• PrEP Watch• My PrEP Experience• AIDS United• AIDS Foundation of Chicago
  47. 47. Thank You!• Caressa Cameron –• Jim Pickett –• Jessica Terlikowski –