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How to [Continue to]
Survive a Plague
Tim Horn
HIV Project Director
Treatment Action Group (TAG)
2013 CUE Annual Membership Meeting
Washington, DC
Friday, 26 July, 2013

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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

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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

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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

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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

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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?

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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

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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

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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

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Never a Dull Moment
All trials registered.
All trials reported.
AllTrials.net

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Visit us!
www.treatmentactiongroup.org