Sunday, December 12, 2010

And so this is Christmas.

"What this group in Philadelphia has so miraculously done is reignite this issue and run with it." –Larry Kramer, playwright and AIDS activist icon

“To someone like me, this means more than you know.
–HIV-positive young man in rural Pennsylvania                                                               
Dear Friends,
Please make a donation to the AIDS Policy Project and join our campaign to push the search for a cure for AIDS. Your money will go straight to bold, effective, and original activism.

We are shaking things up. We are working with the world’s leading researchers and reminding them that the world still desperately needs a cure for AIDS. We are calling out the National Institutes of Health for spending only 3% of its AIDS dollars to actually find a cure—a fact no one knew until we got the information after a five-month campaign.

In one year, we've put the cure back on the map in the AIDS community and we’re helping to make the cure cool again in the research community. Our campaign was on the cover of POZ Magazine. Our executive director was chosen as one of the top 100 activists in the US.  Researchers are citing our influence in their own articles. This blog even won an award; it's read from San Francisco to Soweto.

Please join us to fight for a cure for AIDS. Make a tax-deductible contribution to the AIDS Policy Project:


We are calling for more funding for the science, and new models of medical research that encourage collaboration and move faster. We are helping scientists remove bureaucratic roadblocks that prevent them from pushing forward toward a cure. With your help, together, we can do it.

We are doctors and nurses, longtime AIDS activists and college students--the only organization laser-focused on a cure.

Happy holidays. It's time for a cure!

Kate Krauss, for everyone at the AIDS Policy Project

AIDS Policy Project
5120 Walton Avenue
Philadelphia, PA 19143 
tel: 215-939-7852 
(we have members all over the US)



Friday, December 3, 2010

White Paper on New Models for Accelerated Drug Discovery and Development Is Released

Kauffman Foundation: "Five leaders in the medical innovation field released a white paper today titled The New Role of Academia in Drug Discovery and Development:  New Thinking, New Competencies, New Results.  This white paper reflects key recommendations from a July 2010 town hall meeting in Kansas City hosted by Friends of Cancer Research, Kansas Bioscience Authority, The University of Kansas Cancer Center, Ewing Marion Kauffman Foundation and Council for American Medical Innovation.

"The white paper outlines how government, nonprofit organizations and academic institutions can define new models of working with the private sector to enhance drug development efforts and bring safer, more effective drugs to the market more efficiently. ...

"'This white paper outlines critical steps toward much-needed increased interagency collaboration,' said Dr. Ellen Sigal, Chair, Friends of Cancer Research. 'The proposals discussed within this document aim to accelerate the process to help get scientific breakthroughs to patients. The message is clear; without collaboration among all agencies and academic centers, the full potential of biomedical research may be stifled.'"

More info: http://www.focr.org/kansas-town-hall.html

Thursday, December 2, 2010

Speech on a cure for AIDS to the Philadelphia Town Meeting.

Local medical students listen to Dr. Kostman at our town meeting.  
Photo by Harvey Finkle.



There's lots more to say than this--I could talk about the need to actually support (and not just say one supports) new ideas, and back them up with funding. Like the idea that has, so far, cured the Berlin Patient of AIDS. Or the new idea that is curing mice in Southern California. Even if those ideas come from regular doctors, and not AIDS researchers. Or from brilliant researchers who are starved for funding simply because they live in Europe and not the US.

I could talk about the obstacle course thrown up by funders, institutional review boards, the FDA, and other bureaucracies in front of even the best researchers and the most brilliant ideas. We need the brightest scientists, not people who are smart at negotiating red tape or gaming the system because they have to. We are at a pivotal moment in the AIDS pandemic--a moment of great opportunity, if we recognize it, and act.

A cure for AIDS, whether it is developed in Bethesda or Madrid, would save 30 million lives and the US government $17 billion per year. Yet the NIH is spending only $40-$60 million on AIDS cure research. Where are the great philanthropists to support a cure? We need you. We also need President Obama, federal officials, and drug companies to step up. We saw that President Obama called for a cure for AIDS in his World AIDS Day proclamation--the first time a cure has been mentioned since at least 2005. But without the proper support, including more funding, we will lose an opportunity to save millions of lives. 

Can we be the generation that ends the AIDS pandemic?

Here's what I said to our friends in Philadelphia, many of whom are AIDS prevention activists, at our town meeting on a cure.


Monday, November 22, 2010

Winners: Who HAS doubled the budget of the NIH?

The National Institutes of Health has been flat funded since 2003, and due to high biomedical inflation, the lack of money is eating into major research opportunities for major diseases, a fact that has somehow escaped the attention of the American people.

Love him or not, former Representative Newt (short for Newton) Gingrich helped double the size of the National Institutes of Health when he was Speaker of the House of Representatives. We at the AIDS Policy Project always like to identify who actually did what. 

Sunday, November 14, 2010

The clock is ticking.

On Friday, I was in downtown Philadelphia with my colleague Jose Demarco talking to the staff and clients of a local AIDS organization; we have a town meeting this Thursday.  I was explaining the case of the Berlin Patient and the follow up research taking place. People were fascinated, and a small crowd gathered around me. 

One man said, "My partner has that, (the CCR5 deletion that helped cure the Berlin Patient), and we're always trying to enroll in cure studies, but no one seems to be interested." I said that we are going to be collecting a list of people who want to participate in cure research. 

Then I pointed out that many researchers don't realize that people with AIDS still need a cure, since there are effective treatments. The group fell silent. They were stunned--They could not believe that researchers didn't know that they desperately want a cure.  Then there was a flurry of conversation and people wanted to know how they can send a message to researchers that people with AIDS need a cure.

We talked about what it's like to have HIV, even if you have access to AIDS meds. You could have an AIDS-related heart attack, or get lethal liver cancer or AIDS-related lymphoma that your body can't fight off. I have lost friends this way. A lot of people seem to be developing cognitive problems, including dementia. You can get facial wasting, or wasting through your whole body, or a hump on the back of your neck that tells the world you have AIDS. People seem to slide ominously from youth to old age.

Picture these people in the hundreds of thousands.

But the US is only a sliver of the global AIDS epidemic:  We are home to about 1/33 of the people with HIV in the world.  Of the roughly six million people who urgently need AIDS drugs right now, only 20%-30% have access to medication. The others are dying. And we may be at a high water mark for access to AIDS treatment--wealthy countries are cutting funding for AIDS treatment for people in developing countries. Getting treatment will be a struggle for them for the next 50 years, if they are successful. But without treatment now, they won't live to see a cure.

When you think about AIDS cure research, remember this: The clock is ticking. For people with AIDS in the US. And for the millions and millions of people in developing countries who are dying just like it's 1989. We need a cure.

Wednesday, November 10, 2010

Town Meeting on a Cure for AIDS: Philadelphia (November 18)

Please forward widely:

The AIDS Policy Project is sponsoring an AIDS CURE town meeting in Philadelphia on Thursday, November 18th, 2010. There is major research taking place that is pushing us closer to a cure. The stakes are huge for the 33 million people with AIDS, most in developing countries, most with no access to AIDS drugs. We will talk about the science and the global health implications of cutting-edge AIDS cure research.

Jay Kostman, MD, HIV physician and researcher, will examine the science, and activists will discuss a new campaign.

November 18, 7 pm, 1501 Cherry Street, Philadelphia, PA
RSVP:  info@AIDSPolicyProject.org

Snacks will be provided.

Monday, November 1, 2010

Los Angeles Town Meeting on AIDS Cure Research

TOWN MEETING ON NEW PROGRESS TOWARD A CURE FOR AIDS
November 3, 7:00 pm

Plummer Park Community Center, 7377 Santa Monica Blvd, West Hollywood, Rooms 5 & 6

The AIDS Policy Project is holding a public town meeting to discuss some exciting new AIDS cure research, as well as a new grassroots, activist campaign for a cure AIDS.

The meeting will feature a talk by two scientists, Paula Cannon, PhD, from the University of Southern California; and Dr. John A. Zaia, from City of Hope Medical Center in Duarte, CA. Both are studying ways to change the immune cells of people with HIV to make them resist HIV infection; the HIV-resistant cells would then replace infected cells. This work follows up on the 2008 case of the Berlin Patient, who was cured of AIDS through a bone marrow transplant using a donor who was born immune to HIV. The event is being co-sponsored by AIDS Project Los Angeles and CIRM, California’s state stem cell agency. The AIDS Policy Project's cure campaign is the subject of the cover story of this month's issue of POZ Magazine (www.POZ.com).

Says Kate Krauss, Executive Director of the AIDS Policy Project, “Most people don’t realize that a patient was cured of AIDS in 2008. California is leading the way in both funding and actually doing the critical research that follows up on that case and might lead to a cure for millions of people. Thirty-three million people have AIDS right now, and most can't get treatment. It’s important for the community to stand up and say, ‘we need a cure.'”

The town meeting is open to the public and anyone with an interest is encouraged to attend. While not required by organizers, RSVP emails from attendees to info@aidspolicyproject.org or call 215-939-7852. For more information about the cure campaign, see www.AIDSPolicyProject.org   Please spread the word.