"HIV Cure" 101 Workshop

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

2. “HIV Cure” – Community Questions and Concerns Today’s Talk • 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.

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

4. “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 2011-2012. TAGline Fall 2013]

5. “HIV Cure” – Community Questions and Concerns Participation in HIV Research - Altruism • 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.

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

7. “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

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

9. “HIV Cure” – Community Questions and Concerns Impact on current Treatment and Prevention efforts • 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.

10. “HIV Cure” – Community Questions and Concerns Priority for Cure vs “Other” HIV research • 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.

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

12. “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.

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

14. “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.

15. “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.

16. “HIV Cure” – Community Questions and Concerns