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The AIDS Cure
  Campaign


   Kate Krauss,
   Executive Director
   AIDS Policy Project
   Kate@AIDSPolicyProject.org
   Tel 215-939-7852
Cure Campaign

  Cure advocacy campaign launched in
November, 2009.

  Abundant research funding but
intractable scientific obstacles? No.

  Instead, underfunded, demoralized
researchers—some considering leaving
the field.

  They called it “The C Word.”

    www.AIDSPolicyProject.org
    March 29th, 2012
But the science was going really well.




www.AIDSPolicyProject.org
March 29th, 2012
www.AIDSPolicyProject.org
March 29th, 2012
The Berlin Patient
www.AIDSPolicyProject.org
March 29th, 2012
A few of the curative
 therapies being investigated
•Vorinostat, already FDA-approved for skin cancer, activates quiescent
HIV in viral reservoirs—the last HIV in the body—so it can be detected
and perhaps killed. Clinical trials have started in Melbourne, Australia
and Chapel Hill, North Carolina.

•Researchers are trying to duplicate the Berlin patient case by altering
and re-infusing a patient’s own cells—a much safer alternative to
an outside donor. Separate studies are being done using stem cells
and also CD4 cells.

•Combination strategies are being explored to target latent virus -
similar to cancer approaches. There may be one therapy needed to
activate the virus in viral reservoirs and another to kill it.



    www.AIDSPolicyProject.org
    March 29th, 2012
The National Institutes of Health had
never tracked its spending on a cure.

We learned they were spending only
3% of their AIDS research funding on
   direct AIDS cure research, or
     about $60 million per year.


  www.AIDSPolicyProject.org
  March 29th, 2012
Sources: Vaccines and cure research: National Institutes of Health
Total U.S. Government spending: Henry J. Kaiser Family Foundation
We Are at a Crossroads


 An unprecedented opportunity to
expedite a cure for AIDS.


 More funding streams are
needed.


    We need to promote innovation.
     www.AIDSPolicyProject.org
     March 29th, 2012
What is a Cure?
A sterilizing cure: Permanent remission in
absence of requirement for therapy.

A functional cure: Control of virus rather
than elimination, without requirement for
therapy.

--The Division of AIDS, US National Institutes of Health



   www.AIDSPolicyProject.org
   March 29th, 2012
Why we need a cure

  Only 1/3 of the very sickest of 33 million
people can access AIDS treatment, which
they need every day for the rest of their
lives.


    Global funders are pulling back.


 A sustainable solution is needed for
people who are already HIV-positive.

     www.AIDSPolicyProject.org
     March 29th, 2012
Surprising Attitudes

 Some researchers we met believed a cure
was no longer critically needed because
effective treatment is available in the US.


    Some research officials thought so, too.


 People with AIDS were stunned by this
news.

     www.AIDSPolicyProject.org
     March 29th, 2012
Do we need a cure in the US?


 Some people with AIDS are satisfied with
their current treatment; many others less
so.


 Having a chronic, manageable disease =
not that popular, if you’re the one with the
disease.


    www.AIDSPolicyProject.org
    March 29th, 2012
But I thought there already was
a campaign for a cure for AIDS!




www.AIDSPolicyProject.org
March 29th, 2012
The Cure Campaign


 We organized 1st open town meetings on
cure research in 15 years, taught by
leading researchers.


 Interviewed top researchers to learn about
obstacles they faced.



    www.AIDSPolicyProject.org
    March 29th, 2012
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
Allies Joined Us
Project Inform co-sponsored town



meetings with us.


 TAG, amfAR and Project Inform co-
sponsored a researcher meeting with us in
Baltimore.


 TAG and IAS supported our trip to the
cure workshop.

    www.AIDSPolicyProject.org
    March 29th, 2012
Advocacy Issues
Lack of investment - important projects



were (and sometimes are) languishing.

 Cultural issues – attitudes toward
treatment interruptions, patient accrual,
US-centric myopia, we don’t need a cure
for AIDS!

    Red tape

     www.AIDSPolicyProject.org
     March 29th, 2012
Mini-campaign for AIDS cure
     funding at the NIH



 www.AIDSPolicyProject.org
 March 29th, 2012
Before
June 28, 2010:

  NIH initiated a cure research program in
honor of AIDS activist Martin Delaney

  NIAID and NIMH would fund one or two
grants with a total of $8.5 million per year
for five years = $42.5 million
“Wish we could put more money into it, but
the budget is really tight this year with no
sign of relief. Best regards, Tony”

  www.AIDSPolicyProject.org
  March 29th, 2012
During

  $240 million goal was discussed in Nature
Medicine.

  Grassroots letter-writing campaign:
Hundreds of personal messages by PWAs to
the head of the NIH.

  Talked about funding gap in town meetings.

  Got New York Magazine to cover the need
for more AIDS cure research funding.

  Met privately with NIH officials.

    www.AIDSPolicyProject.org
    March 29th, 2012
After
NIH, July 11, 2011:

  The Martin Delaney Collaboratory
received a funding boost:


 Three research teams, five-year grants
totaling $14 million per year for up to five
years = $70 million
      Increase over five years = $27.5
million(We’re still looking for $240 million)

    www.AIDSPolicyProject.org
    March 29th, 2012
Private Foundations

  Few private foundations are currently
investing in direct cure research—may be
unaware of the opportunity.

  amfAR – Small grants, simple application
process, strong commitment to a cure.

  Small investments now can catalyze giant
leaps forward.


    www.AIDSPolicyProject.org
    March 29th, 2012
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
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 Berlin
Patient, was not one of the usual suspects.



     www.AIDSPolicyProject.org
     March 29th, 2012
Let a thousand flowers bloom.




  www.AIDSPolicyProject.org
  March 29th, 2012
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
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’s
activists or to build scientific brainstorming


    www.AIDSPolicyProject.org
    March 29th, 2012
What is needed *Science Not Included
•Funding, from more sources, with differing points of
view.
•Ways to support true innovators, like Gero Huetter.
•Translation of new research models into AIDS
research--Myelin Repair Foundation
•Continued work on administrative delays at the FDA,
NIH and Institutional Review Boards based on
misunderstandings of what is ethical for people with
AIDS.


     www.AIDSPolicyProject.org
     March 29th, 2012
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
Also, possibly, the cure for AIDS.




www.AIDSPolicyProject.org
March 29th, 2012
Would you make the cure for AIDS
       a funding priority?




   www.AIDSPolicyProject.org
   March 29th, 2012
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 Francisco
www.AIDSPolicyProject.org
March 29th, 2012
Town Meetings




Jose Demarco, a founder of the AIDS Policy Project’s cure project, speaks at a 2011 Philadelphia event.



            www.AIDSPolicyProject.org
            March 29th, 2012
Thank You

 Funders Concerned about AIDS

 International AIDS Vaccine Initiative

 Paula Cannon, PhD, University of Southern
California

 The International AIDS Society

 Treatment Action Group of New York, Project Inform,
Nelson Vergel, and amfAR

 Gero Huetter

 Edward Zold, Winstone Zulu, and Timothy Ray
Brown

 The Sparkplug Foundation

    www.AIDSPolicyProject.org
    March 29th, 2012
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.org



www.AIDSPolicyProject.org
March 29th, 2012
Activism for Science




www.AIDSPolicyProject.org
March 29th, 2012

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Iavi ppt

  • 1. The AIDS Cure Campaign Kate Krauss, Executive Director AIDS Policy Project Kate@AIDSPolicyProject.org Tel 215-939-7852
  • 2. Cure Campaign  Cure advocacy campaign launched in November, 2009.  Abundant research funding but intractable scientific obstacles? No.  Instead, underfunded, demoralized researchers—some considering leaving the field.  They called it “The C Word.” www.AIDSPolicyProject.org March 29th, 2012
  • 3. But the science was going really well. www.AIDSPolicyProject.org March 29th, 2012
  • 6. A few of the curative therapies being investigated •Vorinostat, already FDA-approved for skin cancer, activates quiescent HIV in viral reservoirs—the last HIV in the body—so it can be detected and perhaps killed. Clinical trials have started in Melbourne, Australia and Chapel Hill, North Carolina. •Researchers are trying to duplicate the Berlin patient case by altering and re-infusing a patient’s own cells—a much safer alternative to an outside donor. Separate studies are being done using stem cells and also CD4 cells. •Combination strategies are being explored to target latent virus - similar to cancer approaches. There may be one therapy needed to activate the virus in viral reservoirs and another to kill it. www.AIDSPolicyProject.org March 29th, 2012
  • 7. The National Institutes of Health had never tracked its spending on a cure. We learned they were spending only 3% of their AIDS research funding on direct AIDS cure research, or about $60 million per year. www.AIDSPolicyProject.org March 29th, 2012
  • 8. Sources: Vaccines and cure research: National Institutes of Health Total U.S. Government spending: Henry J. Kaiser Family Foundation
  • 9. We Are at a Crossroads  An unprecedented opportunity to expedite a cure for AIDS.  More funding streams are needed.  We need to promote innovation. www.AIDSPolicyProject.org March 29th, 2012
  • 10. What is a Cure? A sterilizing cure: Permanent remission in absence of requirement for therapy. A functional cure: Control of virus rather than elimination, without requirement for therapy. --The Division of AIDS, US National Institutes of Health www.AIDSPolicyProject.org March 29th, 2012
  • 11. Why we need a cure  Only 1/3 of the very sickest of 33 million people can access AIDS treatment, which they need every day for the rest of their lives.  Global funders are pulling back.  A sustainable solution is needed for people who are already HIV-positive. www.AIDSPolicyProject.org March 29th, 2012
  • 12. Surprising Attitudes  Some researchers we met believed a cure was no longer critically needed because effective treatment is available in the US.  Some research officials thought so, too.  People with AIDS were stunned by this news. www.AIDSPolicyProject.org March 29th, 2012
  • 13. Do we need a cure in the US?  Some people with AIDS are satisfied with their current treatment; many others less so.  Having a chronic, manageable disease = not that popular, if you’re the one with the disease. www.AIDSPolicyProject.org March 29th, 2012
  • 14. But I thought there already was a campaign for a cure for AIDS! www.AIDSPolicyProject.org March 29th, 2012
  • 15. The Cure Campaign  We organized 1st open town meetings on cure research in 15 years, taught by leading researchers.  Interviewed top researchers to learn about obstacles they faced. www.AIDSPolicyProject.org March 29th, 2012
  • 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. Allies Joined Us Project Inform co-sponsored town  meetings with us.  TAG, amfAR and Project Inform co- sponsored a researcher meeting with us in Baltimore.  TAG and IAS supported our trip to the cure workshop. www.AIDSPolicyProject.org March 29th, 2012
  • 18. Advocacy Issues Lack of investment - important projects  were (and sometimes are) languishing.  Cultural issues – attitudes toward treatment interruptions, patient accrual, US-centric myopia, we don’t need a cure for AIDS!  Red tape www.AIDSPolicyProject.org March 29th, 2012
  • 19. Mini-campaign for AIDS cure funding at the NIH www.AIDSPolicyProject.org March 29th, 2012
  • 20. Before June 28, 2010:  NIH initiated a cure research program in honor of AIDS activist Martin Delaney  NIAID and NIMH would fund one or two grants with a total of $8.5 million per year for five years = $42.5 million “Wish we could put more money into it, but the budget is really tight this year with no sign of relief. Best regards, Tony” www.AIDSPolicyProject.org March 29th, 2012
  • 21. During  $240 million goal was discussed in Nature Medicine.  Grassroots letter-writing campaign: Hundreds of personal messages by PWAs to the head of the NIH.  Talked about funding gap in town meetings.  Got New York Magazine to cover the need for more AIDS cure research funding.  Met privately with NIH officials. www.AIDSPolicyProject.org March 29th, 2012
  • 22. After NIH, July 11, 2011:  The Martin Delaney Collaboratory received a funding boost:  Three research teams, five-year grants totaling $14 million per year for up to five years = $70 million Increase over five years = $27.5 million(We’re still looking for $240 million) www.AIDSPolicyProject.org March 29th, 2012
  • 23. Private Foundations  Few private foundations are currently investing in direct cure research—may be unaware of the opportunity.  amfAR – Small grants, simple application process, strong commitment to a cure.  Small investments now can catalyze giant leaps forward. www.AIDSPolicyProject.org March 29th, 2012
  • 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. 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 Berlin Patient, was not one of the usual suspects. www.AIDSPolicyProject.org March 29th, 2012
  • 26. Let a thousand flowers bloom. www.AIDSPolicyProject.org March 29th, 2012
  • 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. 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’s activists or to build scientific brainstorming www.AIDSPolicyProject.org March 29th, 2012
  • 29. What is needed *Science Not Included •Funding, from more sources, with differing points of view. •Ways to support true innovators, like Gero Huetter. •Translation of new research models into AIDS research--Myelin Repair Foundation •Continued work on administrative delays at the FDA, NIH and Institutional Review Boards based on misunderstandings of what is ethical for people with AIDS. www.AIDSPolicyProject.org March 29th, 2012
  • 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. Also, possibly, the cure for AIDS. www.AIDSPolicyProject.org March 29th, 2012
  • 32. Would you make the cure for AIDS a funding priority? www.AIDSPolicyProject.org March 29th, 2012
  • 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 Francisco www.AIDSPolicyProject.org March 29th, 2012
  • 34. Town Meetings Jose Demarco, a founder of the AIDS Policy Project’s cure project, speaks at a 2011 Philadelphia event. www.AIDSPolicyProject.org March 29th, 2012
  • 35. Thank You  Funders Concerned about AIDS  International AIDS Vaccine Initiative  Paula Cannon, PhD, University of Southern California  The International AIDS Society  Treatment Action Group of New York, Project Inform, Nelson Vergel, and amfAR  Gero Huetter  Edward Zold, Winstone Zulu, and Timothy Ray Brown  The Sparkplug Foundation www.AIDSPolicyProject.org March 29th, 2012
  • 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.org www.AIDSPolicyProject.org March 29th, 2012