Iavi ppt

The AIDS Cure Campaign

Kate Krauss, Executive DirectorAIDS Policy [email protected] 215-939-7852

Cure CampaignCure 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

http://www.AIDSPolicyProject.org/

But the science was going really well.




The Berlin Patient


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.



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.



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.



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



Why we need a cureOnly 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.



Surprising AttitudesSome 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.



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.




But I thought there already was a campaign for a cure for AIDS!


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.



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.



Allies Joined UsProject 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.



Advocacy IssuesLack 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



Mini-campaign for AIDS cure funding at the NIH



BeforeJune 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”



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.



AfterNIH, 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)



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.



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.


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.


Let a thousand flowers bloom.


Our Excellent AlliesThe International AIDS Society

Major campaign by Nobel Laureate Françoise Barré-Sinoussi

Treatment Action Group of New YorkBaltimore meeting, list

amfAR – Decades of research fundingPhiladelphia FIGHT – Co-sponsorProject Inform – New primer on the cureBlack AIDS Institute – New eventsAIDS Project Los Angeles – Co-sponsor


Investing in Advocacy

Support an exciting, pivotal reportSocial media campaignTown meetingsSupport a paid AIDS cure advocateTwo-day think tanksTech solutions to get info to world’s activists or to build scientific brainstorming


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.


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.


Also, possibly, the cure for AIDS.


Would you make the cure for AIDS a funding priority?



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


Town Meetings

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

Thank YouFunders Concerned about AIDSInternational AIDS Vaccine InitiativePaula Cannon, PhD, University of Southern CaliforniaThe International AIDS SocietyTreatment Action Group of New York, Project Inform, Nelson Vergel, and amfARGero HuetterEdward Zold, Winstone Zulu, and Timothy Ray BrownThe Sparkplug Foundation


AIDS Policy Project

Kate Krauss, Executive Directorwww.AIDSPolicyProject.org

[email protected] (215)-939-7852

Download a copy of our report, AIDS Cure Research for Everyone, at

www.AIDSPolicyProject.org



Activism for Science

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