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2014 “Towards an HIV Cure” symposium Melbourne . Cure Research and the Community David Evans, Project Inform. What’s been done so far. Fred Verdault’s study Gay and bisexual men in the Netherlands Definition of the cure very important: Eliminate future health problems
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2014 “Towards an HIV Cure” symposiumMelbourne Cure Research and the Community David Evans, Project Inform
What’s been done so far • Fred Verdault’s study • Gay and bisexual men in the Netherlands • Definition of the cure very important: • Eliminate future health problems • Eliminate risk of reinfection • Eliminate risk of transmission • Going off of ART less important • Study with Nelson Vergel and Michael Arnold • Altruism a significant motivator, but… • Altruism highest among those seeking a personal benefit from the research
Community Involvement • ACTG • ANRS • MDC Collaboratories
Limitations • Populations studied • Survey designs • How much do you have to educate in order to conduct a meaningful survey?
Ongoing studies • University of North Carolina study on the ethical dimensions of cure research in Guangzhou and South Africa • ANRS study in France studying psychological and social dimensions of cure research • British study looking at the desirability and willingness to participate in cure research
What does a cure even mean? • Mississippi Baby • Canadian Children • Boston Patients • Visconti Cohort
What does a cure even mean? • How will trials be designed? • What will be the goals of cure research and how will that mesh with the desires of PLWHIV? • What will we call it? Will or should we even use the “C ” word?
Equity in cure research • Will it only be for those who start treatment extremely early or those with cancer? • If we do pediatric research how will we work out the ethics in low income countries? • What should we do about interventions that are likely to be very costly and untransferable to low income countries?
Barriers to participation • Time and timing • No benefit over standard ART • Biological samples • Stigma • Treatment Interruptions/Time off therapy • Time intensity • Risks
What are inducements to participation? • Altruism • Hope for more information about one’s own health (e.g. return of research results) • Hope for benefit • Financial • Treatment Interruption • Reduced infectiousness/vulnerability