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Letter from Sara Rafsky

TAGupdate 2012

December 10, 2012

Dear Friend of TAG –

My name is Sara Rafsky. My dad, Bob Rafsky, was a founding member of Treatment Action Group (TAG) when it formed out of ACT UP New York’s Treatment & Data (T & D) Committee in January 1992.

If you’ve seen David France’s recent acclaimed documentary, How to Survive a Plague,you will remember my father interrupting then–presidential candidate Bill Clinton and pointedly questioning him about what his AIDS platform would be, or his fiery funeral oration at the political funeral of ACT UP/New York’s Mark Fisher the night before the 1992 presidential election. But my dad was acutely aware that it would take more than speeches and politics to curb the AIDS epidemic. Along with ACT UP’s activism, he knew that tackling, let alone ending, the crisis would require massive and smart research investments for the long haul. He also knew that no one was better equipped to set the research agenda than his activist comrades, and that TAG would ensure that the right research took place.

What most impresses me about the history of AIDS activism is how a community of mostly young people facing a terrifying new disease with a universally grim prognosis chose not to act as passive victims, but rather to stand up and fight back. Even more improbably, they became self-educated experts in the science of the disease. What most impresses me about TAG and its leadership 20 year later is that, after achieving their initial goal of finding the drugs that turned AIDS into a chronic, rather than fatal, condition, they did not rest on their laurels, but chose to continue the fight for others. 

My dad did not survive long enough to witness TAG’s amazing successes over the past 20 years, but he would be incredibly proud of what they’ve done and that the movement endures. I know I am.

I’m writing today to thank you for all your past years of support for TAG’s work, and to tell you why it’s now more important than ever to keep on supporting TAG.

  • TAG developed proposals that reformed the entire AIDS research system of the U.S. National Institutes of Health (NIH) and were signed by President Clinton in 1993, creating the first national HIV research strategy linked with strong budget increases.
  • TAG developed proposals to fast-track HIV protease inhibitors, leading to their launch in 1996 as highly active combination antiretroviral therapy (HAART), which has saved more than 14 million years of life since it was introduced, reducing HIV death rates in the United States by over two-thirds.
  • Since TAG was founded, the U.S. Food and Drug Administration has approved over 32 drugs to treat HIV.
  • TAG has worked with the U.S. government, the World Health Organization (WHO), UNAIDS, and the Global Fund to Fight AIDS, Tuberculosis, and Malaria. Today, thanks to these efforts, more than 8 million people worldwide are receiving HIV treatment.
  • TAG works to accelerate research on new treatments, better prevention, and a cure and a vaccine for HIV, and to speed up cures for HIV’s two deadliest companion diseases, hepatitis C virus (HCV) infection and tuberculosis (TB).

 But TAG’s work is now needed more than ever.

  • Globally, while 8 million people are on treatment, 25 million more aren’t, and at least 7 million need treatment now.
  • The United States has failed to bring down new HIV infection rates since 1990—long before HAART—and has 50,000 new infections a year.
  • Only 25% of HIV-positive people in the United States are in care, on treatment, and with an undetectable viral load.
  • The Affordable Care Act (ACA) offers a framework for increasing U.S. HIV prevention, care, and treatment, but activism is needed to ensure that it is implemented in a way that will help, not hinder, care for HIV.
  • The current federal budget negotiations threaten drastic cuts in funding for U.S. and global HIV programs, as well as for research.
  • The U.S. government needs to create a more ambitious domestic AIDS strategy that puts the epidemic into irreversible decline using combination prevention and treatment interventions based on the best and latest science.
  • The U.S. needs to continue supporting the Global Fund and the President’s Emergency Plan for AIDS Relief (PEPFAR) and its visionary Blueprint for an AIDS-Free Generation.
  • One person has been cured of HIV infection. Now we need to discover cures that can be scaled up globally.
  • We still don’t have a vaccine to prevent HIV.

TAG is a globally respected leader in research and treatment activism. We’re in this fight to the finish. Thanks to the past two decades of research, activism, investment, and implementation, we have begun to turn the tide on the AIDS pandemic.

We need your help to ensure that we get there as fast as humanly possible.

I know my father would be very grateful for your efforts—and for TAG’s—to save lives. I certainly am. I am now of the same age as TAG’s founders when they started this fight, and want to make sure my generation and future generations continue to build on all they have accomplished. We owe it to them.

Let’s end this epidemic together. Act Up. Fight Back. Fight AIDS.

Yours in the struggle,

Sara Rafsky