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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