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.

I'm Kate Krauss, Director of the AIDS Policy Project, and I want to welcome you to the first Philadelphia town meeting on AIDS cure research. I want to thank ACT UP Philadelphia for co-sponsoring this with us and Dr. Jay Kostman for giving us a presentation on the science. I also want to thank my colleague Jose Demarco for his remarks.

The AIDS Policy Project has launched a campaign for a cure for AIDS. It started in Jose’s row house living room in Kensington on a freezing day a year ago. And it’s taking off. Last night I was Skyped at 3 am by an activist in Pakistan who wants to organize people with AIDS in that country to support this campaign.

We strongly support prevention, including vaccine research, and universal access to AIDS treatment. Several of us are front-line needle exchange workers and prevention policy advocates. But we need a cure.

We thought a cure was a lost cause. But all this time, the research has quietly been clicking along.

Ten years ago, an American scientist discovered a mutation that makes the person who is born with it-- immune to AIDS. It’s called the CCr5 deletion.

Three years, ago, a doctor used a bone marrow transplant, and a donor with that mutation, to cure a man with AIDS. The man who is cured, who is nicknamed the Berlin patient because he lives in Berlin, is alive and well, has no HIV in his body, and is moving to San Francisco as soon as he can get health care. His treatment was risky and it was expensive, but make no mistake--it was a breakthrough-- a “proof of concept.” As the reporter Jon Cohen put it, “you only need to see one talking dog to know that dogs can talk.”

Now there are researchers following up on the case of the Berlin Patient at Penn, the University of Southern California, Quest Clinical Research in San Francisco, and UCLA. They are removing immune system cells from patients, using genetic engineering to mimic that mutation—they’re removing the CCr5 receptors, and infusing those cells back into patients. To cure them. Will it work? We don’t know yet. As Einstein said, “If we knew what it was we were doing, it wouldn't be called research, would it?”

But it is exciting, and we have an opportunity here. And there are other interesting approaches to finding a cure that are now being investigated, and which Dr. Kostman will discuss.

Since we launched this campaign, we’ve learned that the National Institutes of Health did not track how much money it was spending on a cure. No one there seemed to know how much they were spending. After a 5 month effort that included repeated phone calls and letters, appeals to Congressional staffers, Freedom of Information Act requests, and Larry Kramer, the AIDS Policy Project got the goods: The NIH spends only 3% of its AIDS research budget on a cure. Three percent. They talk a big game. But 3% speaks for itself. Under pressure from us, the NIH has agreed to track their spending on a cure from now on.

This small amount of funding means that new ideas and young researchers get short shrift. Even major researchers have to compete against each other for small amounts of money, when they might otherwise all be funded. When we started this campaign, some of the scientists we spoke to were demoralized. I've spoken to a couple who have considered abandoning the field for these reasons--the field of finding a cure for AIDS. Since the research has gotten more attention, because of activism, because of coverage in the scientific press and in new conferences focused on a cure, I think there is more momentum and excitement. But there’s not more money, yet.

We’ve learned that most drug companies don’t invest in a cure but pump billions of dollars into treatments. That’s where the money is. As one drug company exec put it, half seriously, "It’s the perfect model: You have to take an expensive pill every day for the rest of your life or you die." It’s a lot easier to come up with another treatment than risk your investment trying to find a cure. But some companies are investing in a cure, like Gilead and Sangamo. We need more companies to step up and invest in this research and get us to the finish line.

We have learned that in the US, collaboration among AIDS researchers, which would speed the research, is discouraged by the system they work in, where they must constantly compete, and hoard data until it can be published in a prestigious medical journal. We’ve learned that major discoveries at the test tube level may never get picked up for testing in people—or it might take years. Even though those clinical trials would only involve 5 or 10 people and a few months. [AIDS vaccine trials require thousands of people and years.] Research in other diseases doesn’t work this way—they do things differently in multiple scleroris research. They do things differently in Europe. We have to do things differently in AIDS.

Maybe most importantly, and most shockingly, we have learned that many researchers are under the misapprehension that people with AIDS don’t need a cure. The treatments are so great! We’ve even spoken to decisionmakers at the NIH who believe this. But ask a group of people with AIDS, in New York or in New Delhi. I stunned a group of people with AIDS last week at a downtown Philadelphia AIDS organization when I told them that researchers don’t think we need a cure. They were silent, and then they got on the internet while I was still talking and started typing Facebook messages to researchers.

While the drugs are saving lives, AIDS remains deadly and disfiguring, even in the US. People with AIDS suffer from lethal, AIDS-related lymphoma and liver cancer; heart attacks, dementia, and other severe problems. Many of us have friends who died this year. We need a cure.

Thirty-three million people have HIV worldwide. Most do not have access to excellent treatment. They’re dying. In many communities, they don’t even have access to hospital beds with mattresses on them. Many of the people who have treatment this year have no idea where the treatment is going to come from next year, or every year for the rest of their lives. We need a cure.

Researchers need more money to finish the job of finding a cure for AIDS. They need to be reminded that the world still needs a cure for AIDS. We need to cut the red tape so that the researchers can work quickly. What we do now as a community will influence whether the cure for AIDS is available in 5 years or 30; it will dictate who survives this pandemic and who does not. The clock is ticking.

So as a community—what are we going to do? We have some ideas, and we want to hear your ideas after Dr. Kostman makes his presentation on the science.

Pick up the letter sitting on your chair. It’s a letter to Francis Collins, the head of the National Institutes of Health. He needs to be nicely reminded that we need a cure NOW. That millions of people in developing countries are dying of AIDS without treatment. That for millions of people it’s not great drugs versus a cure, it’s nothing versus a cure. We are calling for $240 million in direct AIDS cure research funding. Please write a personal note at the bottom, sign the letter, print your name and address (so they realize you are a real person), and hand it Caryn, our intern.

Spread the word: When you go home, contact friends who can sign this letter. Send them this link: 

It's all they need. [OK, during the actual speech, I gave them our web address.

This research will continue to meander along, or together, we can light a fire under it. Please make a financial contribution to the AIDS Policy Project to support this campaign for a cure. You can donate on our web site at: dSpread the word.

Finally, I want to quote Winstone Zulu, an AIDS activist in rural Zambia and the first person with HIV in Zambia to publicly come out as HIV-positive. He is a father of four who has access to AIDS medications but is barely surviving bouts of meningitis:

"Yes, yes, yes. We badly need need a cure. Why is all the important research on treatments, vaccines and microbicides? What about me who is already infected? Please send us details of how you are pushing this agenda and we can take up here as well. The world will likely to react faster if it hears the same message coming from all corners of the earth."

"Time for a cure!" - Winstone

Kate Krauss
The Friends Center
Philadelphia, Pennsylvania
November 18, 2010

1 comment:

Livia said...

Ok, very good to hear that this group is going on. But if we want to campaign for eradication, the first thing is to be evidence based and scientifically correct. Let's start by the beginning... the mutation on CCR5 was not discovered by "an" American scientist. This was Amfar's version recently, in order to collect donations. But research leading to discovery of CCR5 and then of the delta 32 deletion was a beautiful and worldwide collective work. We can say that an American scientist group (Ed Berger) discovered CXCR4, but for CCR5 it's starts with Paolo Lusso's team discovering that the ligands of CCR5 inhibited HIV replication. An European group linked CCR5 to those ligands. Many groups jumped on the boat of these discoveries and then found CCR5 and the delta 32 deletion in American and European populations and its relation to AIDS susceptibility and disease progression. And a German group treated the American patient in Berlin. Let's honor all these researchers!!!!