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How to [Continue to] Survive a Plague

Tim HornHIV Project DirectorTreatment Action Group (TAG)

2013 CUE Annual Membership MeetingWashington, DCFriday, 26 July, 2013

+ACT UP Legacy

ACT UP/NY’s Treatment & Data Committee Accelerated HIV drug approval by FDA Fighting industry to bring down high drug prices Demanding innovative treatment IND, compassionate use,

and expanded access programs Access to the NIH research programs, notably the AIDS

Clinical Trials Group

+ACT UP Legacy

And yet… Death toll continued to rise

Enormity of crisis largely ignored by Regan and Bush I No national HIV/AIDS strategy No national research plan Poor understanding of NIH AIDS research program Mounting failures in clinical research programs and too little

emphasis on basic science

+Treatment Activism Comes of Age

Answers in science and research The research establishment: friend or enemy?

Knowledge is power Basic science: Separating wheat from the chaff Clinical trial design Claims vs. evidence Evidence-based policy

+Early Campaigns

Reforming NIH AIDS research program

Back to basics: revitalizing basic research

Bad drugs

Bad clinical trials

Bad surrogate markers

Bad AIDS disease management

+The HAART Years

New drug development standards Maximize efficacy, minimize adverse events Study in all populations: women and pediatrics Increasing demand for long-term follow-up data Optimized background regimens Question urgency of “me too” drugs Hold companies accountable to FDA commitments and for

marketing

Developing best practices Quality of evidence vs. expert opinion When to start treatment? What to start with?

+The HAART Years

The burgeoning issue of coinfections Viral hepatitis, tuberculosis, HPV

Bridging the Gap The need for evidence-based practice to guide WHO,

PEPFAR and Global Fund HIV programming The resurgence of HIV denialism

+The Modern Era

HIV & aging and non-AIDS-related health complications

Cure research Steady wins the race Hype vs. hope

Prevention modernization Better science, new tools

Engagement in Care: The Final Frontier Evidence-based practice vs. practice-based evidence to

improve linkage and retention

+Personal Lessons Learned

Health, treatment and research literacy matters Belief systems are tough nuts to crack Science phobia and anti-science attitudes are pervasive Education is a critical component of advocacy

Must not forget who we are We are not researchers, health care providers or public health officials We are a part of an affected community and are entrusted to

understand and fully represent its concerns and needs Advocacy decisions with major potential consequences cannot be

made in a vacuum – collaboration is vital.

Don’t underestimate the power we have. We’re much more influential than we may give ourselves credit for Power is capital and it needs to be spent wisely

+Never a Dull Moment

All trials registered.All trials reported.AllTrials.net

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www.treatmentactiongroup.org