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Having a chronic, manageable disease is not that great, if you’re the one with the disease.
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Page 1: Jose's BAI slides

Having a chronic, manageable disease isnot that great, if you’re the one

with the disease.

Page 2: Jose's BAI slides

Worldwide, only about 20% of the very sickest of the 33 million with HIV/AIDS can access treatment

Every day we still lose the joy of friendship and family, the gifts of so many, to AIDS

Global Funding Pulling Back

Long medication access Waiting Lists in the US

And ...

Page 3: Jose's BAI slides

What we expected when we started ...What we expected when we started ...

Abundant Resources!

Intractableresearchobstacles

Page 4: Jose's BAI slides

What We FoundWhat We Found

Few Resources

Great Research !!!

Page 5: Jose's BAI slides

Proof of concept: One man was already cured, in 2007.

His therapy cost $200,000, or about 1/3 of the lifetime cost of a treatment for a person with AIDS in the United States.

Already, his cure is leading to research that would duplicate the cure, but be much safer, by using a patient’s own immune cells.

Already, researchers—including companies in lower-income countries like India and Brazil and China-- are investigating ways to do the same thing cheaper.

Page 6: Jose's BAI slides

We need to bring AFRICAN researchers into the search for a cure.

We don’t want to find a cure for the US and then have to repeat the research all over again on a different subtype of the HIV virus, for Africa.

Page 7: Jose's BAI slides

The ObstaclesThe Obstacles

Page 8: Jose's BAI slides

We Persuaded the NIH to track funding for cure research.THEY DIDN’T WANT TO DO IT.

The AIDS Policy Project was the only group to ever ask how much the NIH was spending to CURE AIDS.

so is that a big enough slice for you?

We learned that the NIH was spending only 3 % of its aids research budget to find a cure.

Page 9: Jose's BAI slides

WE DEMANDED MORE.

We were the only group to demand more money for a cure:

$240 million per year in NIH funding.

Page 10: Jose's BAI slides

SOME EXCITING CANDIDATES FOR A CURE:

Vorinostat

Activates LATENT HIV in “viral reservoirs”. Already approved by the FDA for a type of skin cancer.

Yep, that's it.

Page 11: Jose's BAI slides

PD-1 Inhibitors

Also activates latent virus so it can be killed.

Immune Based Strategies

Alfa Interferon, for example.

Page 12: Jose's BAI slides

We wish we could put more money into it, but the budget is really tight this year with no sign of relief.

Best regards, Tony

Certain entrenched attitudes must be overcomes

Page 13: Jose's BAI slides

What do we want?What do we want?

A Scalable CureA Scalable Cure

$ 240 Million in new money from the NIH

More funding streams (private foundations; philanthropists)

Support for new ideas – More People like Gero Huetter

Better collaboration among researchers

Innovation in the way research is managed

Page 14: Jose's BAI slides

WE CAMPAIGNED FOR MORE MONEY. A LOT MORE MONEY.

Grassroots letter writing campaign to NIH

Private, Come To Jesus meetings with NIH officials

THE FIRST-EVER Town Meetings ABOUT CURE RESEARCH

Press Conferences

WE PUBLISHED THE FIRST, PLAIN ENGLISH REPORT ON STATE OF THE CURE, read by Nobel Prize Winners and NIH Officials

Somewhat Embarrassing FOR THE NIH in-Depth Magazine Articles

Page 15: Jose's BAI slides

Ha! We got a $27.5 Million Increase in New AIDS Cure

Funding over 5 Years

(It’s not enough.)

Page 16: Jose's BAI slides

Frederick Douglass said, “Power concedes nothing without a demand. It never did and never will.”

Page 17: Jose's BAI slides
Page 18: Jose's BAI slides

What Would You Do to Cure HIV?May 25, 2011by David Evans

AIDS: Emphasis of research, funding shifts to cureMonday, July 18, 2011By Erin Allday

The Man Who Had HIV And Now Does NotMay 29, 2011By Tina Rosenberg

Page 19: Jose's BAI slides

Allies

Page 20: Jose's BAI slides

TIMOTHY RAY BROWN

Page 21: Jose's BAI slides

Petition to President Obama

Page 22: Jose's BAI slides

What Needs to Get Done?What Needs to Get Done?

More ResearcherCollaboration

Lots of pots of money—everything shouldn’t be decided at the NIH

Page 23: Jose's BAI slides

What Can You Do?What Can You Do?

Volunteer

Donate

Page 24: Jose's BAI slides

Jose [email protected]

Or [email protected]

Sign up For More Info on our web site at: http://aidspolicyproject.nationbuilder.com /