Iavi ppt

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Paradoxically contains a typo about IAVI's NIH funding. Must correct.

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Iavi ppt

  1. 1. The AIDS Cure Campaign Kate Krauss, Executive Director AIDS Policy Project Kate@AIDSPolicyProject.org Tel 215-939-7852
  2. 2. Cure Campaign Cure advocacy campaign launched inNovember, 2009. Abundant research funding butintractable scientific obstacles? No. Instead, underfunded, demoralizedresearchers—some considering leavingthe field. They called it “The C Word.” www.AIDSPolicyProject.org March 29th, 2012
  3. 3. But the science was going really well.www.AIDSPolicyProject.orgMarch 29th, 2012
  4. 4. www.AIDSPolicyProject.orgMarch 29th, 2012
  5. 5. The Berlin Patientwww.AIDSPolicyProject.orgMarch 29th, 2012
  6. 6. A few of the curative therapies being investigated•Vorinostat, already FDA-approved for skin cancer, activates quiescentHIV in viral reservoirs—the last HIV in the body—so it can be detectedand perhaps killed. Clinical trials have started in Melbourne, Australiaand Chapel Hill, North Carolina.•Researchers are trying to duplicate the Berlin patient case by alteringand re-infusing a patient’s own cells—a much safer alternative toan outside donor. Separate studies are being done using stem cellsand also CD4 cells.•Combination strategies are being explored to target latent virus -similar to cancer approaches. There may be one therapy needed toactivate the virus in viral reservoirs and another to kill it. www.AIDSPolicyProject.org March 29th, 2012
  7. 7. The National Institutes of Health hadnever tracked its spending on a cure.We learned they were spending only3% of their AIDS research funding on direct AIDS cure research, or about $60 million per year. www.AIDSPolicyProject.org March 29th, 2012
  8. 8. Sources: Vaccines and cure research: National Institutes of HealthTotal U.S. Government spending: Henry J. Kaiser Family Foundation
  9. 9. We Are at a Crossroads An unprecedented opportunity toexpedite a cure for AIDS. More funding streams areneeded. We need to promote innovation. www.AIDSPolicyProject.org March 29th, 2012
  10. 10. What is a Cure?A sterilizing cure: Permanent remission inabsence of requirement for therapy.A functional cure: Control of virus ratherthan elimination, without requirement fortherapy.--The Division of AIDS, US National Institutes of Health www.AIDSPolicyProject.org March 29th, 2012
  11. 11. Why we need a cure Only 1/3 of the very sickest of 33 millionpeople can access AIDS treatment, whichthey need every day for the rest of theirlives. Global funders are pulling back. A sustainable solution is needed forpeople who are already HIV-positive. www.AIDSPolicyProject.org March 29th, 2012
  12. 12. Surprising Attitudes Some researchers we met believed a curewas no longer critically needed becauseeffective treatment is available in the US. Some research officials thought so, too. People with AIDS were stunned by thisnews. www.AIDSPolicyProject.org March 29th, 2012
  13. 13. Do we need a cure in the US? Some people with AIDS are satisfied withtheir current treatment; many others lessso. Having a chronic, manageable disease =not that popular, if you’re the one with thedisease. www.AIDSPolicyProject.org March 29th, 2012
  14. 14. But I thought there already wasa campaign for a cure for AIDS!www.AIDSPolicyProject.orgMarch 29th, 2012
  15. 15. The Cure Campaign We organized 1st open town meetings oncure research in 15 years, taught byleading researchers. Interviewed top researchers to learn aboutobstacles they faced. www.AIDSPolicyProject.org March 29th, 2012
  16. 16. AIDS Cure Research for Everyone  Wrote the first plain-English AIDS cure report, “AIDS Cure Research for Everyone: How it’s going and who’s going to pay for it.”  Report was covered by CNN.com, put on the jumbotrons at a small cure workshop run by Nobel Laureate Françoise Barré-Sinoussi, and made required reading there. www.AIDSPolicyProject.org March 29th, 2012
  17. 17. Allies Joined UsProject Inform co-sponsored townmeetings with us. TAG, amfAR and Project Inform co-sponsored a researcher meeting with us inBaltimore. TAG and IAS supported our trip to thecure workshop. www.AIDSPolicyProject.org March 29th, 2012
  18. 18. Advocacy IssuesLack of investment - important projectswere (and sometimes are) languishing. Cultural issues – attitudes towardtreatment interruptions, patient accrual,US-centric myopia, we don’t need a curefor AIDS! Red tape www.AIDSPolicyProject.org March 29th, 2012
  19. 19. Mini-campaign for AIDS cure funding at the NIH www.AIDSPolicyProject.org March 29th, 2012
  20. 20. BeforeJune 28, 2010: NIH initiated a cure research program inhonor of AIDS activist Martin Delaney NIAID and NIMH would fund one or twogrants with a total of $8.5 million per yearfor five years = $42.5 million“Wish we could put more money into it, butthe budget is really tight this year with nosign of relief. Best regards, Tony” www.AIDSPolicyProject.org March 29th, 2012
  21. 21. During $240 million goal was discussed in NatureMedicine. Grassroots letter-writing campaign:Hundreds of personal messages by PWAs tothe head of the NIH. Talked about funding gap in town meetings. Got New York Magazine to cover the needfor more AIDS cure research funding. Met privately with NIH officials. www.AIDSPolicyProject.org March 29th, 2012
  22. 22. AfterNIH, July 11, 2011: The Martin Delaney Collaboratoryreceived a funding boost: Three research teams, five-year grantstotaling $14 million per year for up to fiveyears = $70 million Increase over five years = $27.5million(We’re still looking for $240 million) www.AIDSPolicyProject.org March 29th, 2012
  23. 23. Private Foundations Few private foundations are currentlyinvesting in direct cure research—may beunaware of the opportunity. amfAR – Small grants, simple applicationprocess, strong commitment to a cure. Small investments now can catalyze giantleaps forward. www.AIDSPolicyProject.org March 29th, 2012
  24. 24. How can you invest in the science?  Fund a cross-disciplinary project: An immunologist + a virologist.  International collaboration.  A $60,000 fellowship for a young, innovative scientist to work on whatever cure project he or she chooses.  Fund a fellow in an established lab.  An expensive piece of equipment with a plaque on it. www.AIDSPolicyProject.org March 29th, 2012
  25. 25. Other ways to invest in the cure An X Prize for a Cure for AIDS. More is more when it comes to prizes. Gero Huetter, who cured the BerlinPatient, was not one of the usual suspects. www.AIDSPolicyProject.org March 29th, 2012
  26. 26. Let a thousand flowers bloom. www.AIDSPolicyProject.org March 29th, 2012
  27. 27. Our Excellent Allies The International AIDS Society Major campaign by Nobel Laureate Françoise Barré-Sinoussi Treatment Action Group of New York Baltimore meeting, list amfAR – Decades of research funding Philadelphia FIGHT – Co-sponsor Project Inform – New primer on the cure Black AIDS Institute – New events AIDS Project Los Angeles – Co-sponsor www.AIDSPolicyProject.org March 29th, 2012
  28. 28. Investing in Advocacy Support an exciting, pivotal report Social media campaign Town meetings Support a paid AIDS cure advocate Two-day think tanks Tech solutions to get info to world’sactivists or to build scientific brainstorming www.AIDSPolicyProject.org March 29th, 2012
  29. 29. What is needed *Science Not Included•Funding, from more sources, with differing points ofview.•Ways to support true innovators, like Gero Huetter.•Translation of new research models into AIDSresearch--Myelin Repair Foundation•Continued work on administrative delays at the FDA,NIH and Institutional Review Boards based onmisunderstandings of what is ethical for people withAIDS. www.AIDSPolicyProject.org March 29th, 2012
  30. 30. Results of Philanthropic Investment Cure research without delays.Innovative scientific ideas and researchmanagement. Less red tape. A mobilized base of support for the cure. www.AIDSPolicyProject.org March 29th, 2012
  31. 31. Also, possibly, the cure for AIDS.www.AIDSPolicyProject.orgMarch 29th, 2012
  32. 32. Would you make the cure for AIDS a funding priority? www.AIDSPolicyProject.org March 29th, 2012
  33. 33. Gero Huetter,MD, physician who cured the first person with AIDS and researcher Steve Deeks, MD at a meeting organized by the AIDS Policy Project at the Zuni Café, San Franciscowww.AIDSPolicyProject.orgMarch 29th, 2012
  34. 34. Town MeetingsJose Demarco, a founder of the AIDS Policy Project’s cure project, speaks at a 2011 Philadelphia event. www.AIDSPolicyProject.org March 29th, 2012
  35. 35. Thank You Funders Concerned about AIDS International AIDS Vaccine Initiative Paula Cannon, PhD, University of SouthernCalifornia The International AIDS Society Treatment Action Group of New York, Project Inform,Nelson Vergel, and amfAR Gero Huetter Edward Zold, Winstone Zulu, and Timothy RayBrown The Sparkplug Foundation www.AIDSPolicyProject.org March 29th, 2012
  36. 36. AIDS Policy Project Kate Krauss, Executive Director www.AIDSPolicyProject.org Kate@AIDSPolicyProject.org Tel (215)-939-7852 Download a copy of our report, AIDS Cure Research for Everyone, at www.AIDSPolicyProject.orgwww.AIDSPolicyProject.orgMarch 29th, 2012
  37. 37. Activism for Sciencewww.AIDSPolicyProject.orgMarch 29th, 2012

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