Fw: We need you to do something for the cure.

Fw: We need you to do something for the cure.

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From: “AIDS Policy Project” <kate@aidspolicyproject.org>
Sender: “AIDS Policy Project” <kate=aidspolicyproject.org@mail37.us2.mcsv.net>
Date: Tue, 9 Nov 2010 14:19:06 -0500
To: <nelsonvergel@aol.com>
ReplyTo: “AIDS Policy Project” <kate@aidspolicyproject.org>
Subject: We need you to do something for the cure.
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From Your Friends at the AIDS Policy Project:

THE FRANCIS COLLINS PROJECT

500 LETTERS CALLING FOR MORE MONEY FOR A CURE. BEFORE DECEMBER 1.

Please forward this message, but only after you’ve mailed off at least one letter.

Issue: The pace of AIDS cure research is accelerating quickly now. The case of the Berlin Patient, functionally cured in 2008, was an important proof of concept and a springboard for major follow-up research. But there is not enough money to fund the research needed to propel us to a cure appropriate for millions of people. The National Institutes of Health, the leading funder for cure research worldwide, spends only 3% of its AIDS research money on cure research. Some
researchers have even considered leaving the field (the field of finding a cure for AIDS) for lack of resources. The NIH spends about $60 million dollars per year on a cure, leaving many important projects unfunded or underfunded. Because it is parsing out relatively small amounts of money, the NIH tends to reward conservative approaches and established researchers, and not risk money on young researchers or new ideas.

The Plan: Before World AIDS Day, we want people from all over the world to write a total of at least 500 letters to Francis Collins, MD PhD, the Director of the National Institutes of Health, calling on him to increase AIDS cure research funding to $240 million per year, increasing AIDS cure research to
about 12% of the AIDS research budget. We want a mixture of handwritten letters in his mailbox and emailed letters. This is Phase I. After December 1, stay tuned for Phase II.

Why Francis Collins? Because he's in charge, he has spending discretion, and he has a broad view of research not just at NIAID but elsewhere in the NIH that may help this goal.

Background: The National Institutes of Health started tracking how much money it was spending on AIDS cure research in 2010 after a five-month campaign by the AIDS Policy Project. Again, the NIH spends only 3% percent of its AIDS research budget on research that would lead directly to a cure for AIDS. That includes research that would lead either a functional cure, in which the body controls the AIDS virus without drugs, or a sterilizing cure, in which HIV is completely eradicated from the body. For more information on the search for a cure, see our report, “AIDS Cure Research for Everyone,” which is downloadable from our website at http://www.AIDSPolicyProject.org

We want to count the letters, so we can all have the satisfaction of knowing how we’re doing. SO: When you physically mail a letter, send us a note to info@aidspolicyproject.org, and we will add your letter to the thermometer on our web site tracking the number of letters we have sent toward our goal. You can even email us the text if you want. If you email Francis Collins a letter, please BCC us and we can add it to the count.

Tip: It’s easy to do this in groups. Please consider bringing writing paper and stamps to your next meeting (class, knitting circle, political meeting, church group, craft show, bar, etc.). If you have organized a group to write letters, let us know who you are and how many letters were actually sent (not just written). We’ll keep count under your name. It only counts when they are mailed or emailed.

Prize! The person responsible for organizing the biggest number of successfully delivered letters to Francis Collins will receive a special mystery prize from the AIDS Policy Project. We promise it will be fun and worth getting: We don’t lack imagination. Can we do 500 letters? 1,000? Let’s find out.

Until the cure is more than a slogan,

The AIDS Policy Project
www.AIDSPolicyProject.org
Info@AIDSPolicyProject.org

TALKING POINTS FOR YOUR LETTER:

(#1 is strongly recommended; the rest are up to you, really. Please be polite. Humor is ok.)

1. I am writing to ask you to make a cure for AIDS a greater funding priority at the NIH by allocating $240 million per year to science that would lead directly to a cure. We truly applaud the NIH’s innovative AIDS cure programs, but they are underpowered because they are underfunded. We ask you to immediately increase the funding for AIDS research that would lead directly to a cure from $60 million (or about 3% of your AIDS research budget) to $240 million.

2. We need you to fund innovation, not make prudent investments. We are at a pivotal point in AIDS cure research, and the NIH is not leading the way. There is exciting research following up on the Berlin Patient case and new potential therapies such as vorinostat, the PD-1 inhibitor that is already on the market for lymphoma patients. We need you to create fertile ground for innovation so that we can achieve a cure suitable for millions of people.

3. At this writing, leading cure researchers are forced to compete with each other for funding under NIAID’s new Martin Delaney Collaborative because there isn’t enough money for more than a couple. This program, only $8 million total, should be ten times as big. In contrast, a single disease team grant from the California stem cell agency is as high as $20 million. Two such grants have already been awarded for HIV cure research in California.

4. The plain fact is that the NIH is doing AIDS research for the world. This world is unable to treat more than about 20% of people with HIV in developing countries who need medicine. The rest of them, the vast majority of 33 million people, are dying, with a lifespan after diagnosis of about two years after diagnosis. Again, we urge you to increase NIH funding for a cure.

5. Explain why you personally want a cure for AIDS. No platitudes allowed.
Francis Collins' Address:
Francis Collins, MD, PhD/Director, National Institutes of Health/9000 Rockville Pike/Bethesda,
Maryland 20892
Email: collinsf@mail.nih.gov

* Don’t forget to date the letter and include your full name and address 🙂

The AIDS Policy Project • 5120 Walton Avenue, Philadelphia, PA 19143
tel: +1 215.939.7852 • www.AIDSPolicyProject.org
11/2010

SAMPLE LETTER

November __, 2010

Francis Collins, MD, PhD
Director, National Institutes of Health
9000 Rockville Pike
Bethesda, Maryland 20892

Dear Dr. Collins:

I am writing to ask you to make a cure for AIDS a greater funding priority at the NIH. We truly applaud the NIH’s innovative AIDS cure programs, but they are underpowered because they are underfunded.

We ask you to immediately increase the funding for AIDS research that would lead directly to a cure from $60 million (or about 3% of your AIDS research budget) to $240 million.

We are at a pivotal point in AIDS cure research, and the NIH is not leading the way. Let’s assume for a moment that the reason the NIH is not taking the lead in adequately funding AIDS cure research is because, as NIAID officials have publicly claimed, the science is uninteresting—that the ideas are bad. Is the NIH taking the global lead in generating new ideas? If all the research ideas for breast cancer were terrible, would the NIH stop doing breast cancer research? Of course not. You are the National Institutes of Health, not the National Institutes of Grants. Finding ways to generate and support new ideas should be part of your mission.

In fact, many people disagree that the research is lacking. What about the mouse experiments at USC that are following up on the Berlin Patient case, or vorinostat, the PD-1 inhibitor that is already on the market for lymphoma patients?

At this writing, leading cure researchers are forced to compete with each other for funding under NIAID’s new Martin Delaney Collaborative because there isn’t enough money for them all. The program, only $8 million total, should be ten times as big. In contrast, a single grant from the California stem cell agency is $15 million.

Here are our questions: Are there stem cell transplant conditioning regimens that would make cell-based therapies safer? If a stem cell transplant costs $100,000, and a patient is spending $30,000 per year on drugs, is it too expensive? With the epidemic expanding and treatment in developing countries cut, can we afford not to properly fund the search for a cure?

The plain fact is that the NIH is doing AIDS research for the world. This world is unable to treat more than about 20% of people with HIV in developing countries who need medicine. The rest of them, the vast majority of 33 million people, are dying, with a lifespan after diagnosis of about two years. Again, we urge you to increase NIH funding for a cure.

Sincerely,

Your name and address

[Thanks. We can do this!-APP]
 

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