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