How to Survive a Plague- Tim Horn

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  • We conclude that the entire NIH budget should be doubled to $16 billion a year. The AIDS budget should rise to $1.6 billion. The rate at which AIDS basic research grants are funded should be restored to 40%. The NIH Associate Director for AIDS Research [the OAR Director] should be given authority to allocate resources and programs across institute boundaries. Pathogenesis research should be emphasized. [Abstract, AIDS Research at the NIH: A Critical Review. Gregg Gonsalves and Mark Harrington, TAG, July 1992.]
  • How to Survive a Plague- Tim Horn

    1. 1. + 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
    2. 2. + 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
    3. 3. + 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
    4. 4. + 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
    5. 5. + 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
    6. 6. + 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?
    7. 7. + 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
    8. 8. + 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
    9. 9. + 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
    10. 10. + Never a Dull Moment All trials registered. All trials reported. AllTrials.net
    11. 11. + Visit us! www.treatmentactiongroup.org

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