"HIV Cure" 101 Workshop Current Community Questions and Concerns about “HIV Cure” Bill Whittaker National Association of People with HIV Australia

My take on community questions and concerns about “HIV Cure” research: How we sustain support and participation in HIV Cure Research. Researchers and Community partnerships. Global commitments to Cure. Hype and Hyperbole – media and us. Impact on current Treatment and Prevention efforts. Priority for Cure vs “Other” HIV research. Cost Effectiveness and Equity of Access. Cure research funding – pharmaceutical industry. Ethical Issues and Cure Research. Priorities for Global Response & Focus of Cure Research. “HIV Cure” – Community Questions and Concerns Today’s Talk

A long history of community participation in HIV research. Still high levels of altruism and interest in HIV research. “HIV Cure” – Community Questions and Concerns Participation in HIV Cure Research - Altruism

“HIV Cure” – Community Questions and Concerns Participation in HIV Cure Research - Altruism Survey of 2100 HIV positive people in 2011/12. Over half reported that the possibility of benefiting others would motivate them to join a trial even if there were some potential risks for them. A separate question asked about willingness to participate in studies that might advance the science but offer little prospect of individual benefit for them; 45 percent responded that they would be either willing or very willing. [Evans and Vogel TAGline Fall 2013]

Value and respect this resource of people. Ongoing support for and participation in HIV research depends on keeping the community informed. Successful research benefits from dialogue with community and involvement of advocates in planning and strategizing Cure research. “HIV Cure” – Community Questions and Concerns Participation in HIV Research - Altruism

“HIV Cure” – Community Questions and Concerns Partnering with the Community in HIV Research D.A.R.E.

“HIV Cure” – Community Questions and Concerns International Commitments – Global Cure Leadership 2011 United Nations Political Declaration on HIV Countries committed to accelerating investment in cure research. Countries committed to ensuring the highest ethical standards (DM). ?? How will countries meet these commitments & monitoring. What is the leadership and framework needed to support cure research into the future: Governments International IAS and others

Sensationalist Cure reporting, commentary, hype…… “HIV Cure” – Community Questions and Concerns Hype and Hyperbole – Media and Us. It’s not just the media! Potential to undermine prevention and current treatment programs – community awareness.

Some may hold off treating now because of cure availability. Cure may impact on prevention – biomedical and proven prevention programs. Messaging is complex today – a challenge: Rapid testing Test and Treat Treatment as Prevention PrEP Community and broader communication – sophisticated approach. “HIV Cure” – Community Questions and Concerns Impact on current Treatment and Prevention efforts

Could scientific effort, funding and focus be concentrated too narrowly? Will this be at the expense of other important research? Unlikely - cure research is not some “niche activity”. We must communicate exactly what we mean by a cure – possibilities and limitations. “HIV Cure” – Community Questions and Concerns Priority for Cure vs “Other” HIV research

“HIV Cure” – Community Questions and Concerns Cost Effectiveness and Equity of Access

Cost effectiveness – must be a critical issue for governments, regulatory agencies, pharmaceutical industry, the community and health systems. Regulatory authorities may well approve treatments which provide a cure, but the cost could make this out of reach for many. They may also approve treatments which will only work in specific populations. To end the epidemic – the “cure” is going to need to be cost-effective. “HIV Cure” – Community Questions and Concerns Cost Effectiveness and Equity of Access

“HIV Cure” – Community Questions and Concerns Cure research funding – pharmaceutical industry

“HIV Cure” – Community Questions and Concerns Ethical Issues and Cure Research Ethical issues - high priority for community. Most PWHIV doing well – low threshold for toxicities from new “cure” interventions. Ensure participants make fully informed and voluntary decisions. Developing and developed settings – differences in ethic review arrangements, regulatory authorities and support levels for research participants. What is crucial is the stuff that goes on leading up to signing the informed consent – and ongoing. Good informed consent is optimized when there is broader community awareness fostered by researchers, pharma, regulatory authorities.

“HIV Cure” – Community Questions and Concerns Priorities for Global Response & Focus of Cure Research We have the means to achieve virtual elimination of HIV and AIDS now. Achieving universal access to ART - highest priority. Cure research should focus not only on controlling or eradicating HIV – but also restoring the damage already done by HIV. Addressing the chronic immune activation and inflammation that persists with HIV, even with successful ART. A false dichotomy. In the exciting pursuit of ending AIDS and finding a cure – may a thousand research flowers bloom.

“HIV Cure” – Community Questions and Concerns