- Category: Search for a Cure
- Published on Friday, 04 October 2013 00:00
- Written by Kate Krauss
The AIDS Policy Project has declared Saturday, October 5, 2013, to be the first annual AIDS Cure Day, an opportunity to celebrate recent advances and recognize the researchers and people with HIV who have made them happen. Kate Krauss, APP Executive Director, shares her thoughts on progress made to date and what is needed to move forward.
By Kate Krauss, AIDS Policy Project
When researchers discovered, 17 years ago, that a tiny percentage of people are born immune to AIDS due to a mutation known as CCR5-delta-32, few outside the scientific community took note.
The news generally escaped the world's AIDS treatment activists. We were focused on pushing for access to protease inhibitors, the first really effective HIV drugs, which were saving the lives of thousands of dying people almost overnight. So reports of this mutation (which only seemed to occur in white people) did not reach people with AIDS in New York or Mumbai or Cape Town. It was not declared on the front page of the New York Times.
But one important person noticed.
In 2007 a German doctor, Gero Hütter, decided to find one of these naturally immune people and make him the stem cell donor for Timothy Ray Brown, who would become known as the Berlin Patient. Dr. Hütter, a hematologist, was treating the first person with AIDS he had ever met.
We at the AIDS Policy Project are declaring October 5, 2013, to be the first-ever AIDS Cure Day. We are celebrating the slimmest of victories, the handful of people who through genius or luck have been cured -- the men in Boston, the baby in Mississippi, the American in Berlin.
We are recognizing the stubborn researchers who have failed and failed again to find a cure, but have stuck with the search because it is fascinating and important. Even when the funding dried up. Even when it was uncool. Let me acknowledge some of their names: Robert Siliciano. John Zaia. Louis Picker. Jay Levy. Christine Rouzioux. Francoise Barré-Sinoussi. Jay Lalezari. Steven Deeks. And everyone else who has been trying to cure AIDS since the 1980s and 1990s.
After all these years, we are finally getting closer to a cure. There are problems to unravel and questions that uncover more questions. But there are also discoveries we only dreamed about at the beginning of the epidemic.
Some newly infected people can be nudged into permanent remission if they are treated early, before a viral reservoir is established. There may be a way to cure babies. We can cure mice with human immune systems using a method that may eventually allow us to cure people. Multiple theories are being investigated, not just one big idea. Let a thousand flowers bloom.
We are asking people to mark October 5 (or October 6, 7, 8or 22 -- it doesn’t really matter) by learning about or teaching about the research. You can ask for our imperfect (hey, it’s Year 1) educational materials ( JLIB_HTML_CLOAKING ) or make your own. Schedule a workshop to share this information with people living with HIV/AIDS or those who are just interested in science or social justice. After all, AIDS activism is science plus social justice -- and the cure for AIDS is currently being funded like an obscure skin disease and not like the great scourge of the 21st century that it is.
As of today 25 million people have died already. 34 million are still waiting -- and not to have a chronic, manageable disease.
They want a cure.
To get there, we're going to need new ideas, more money, political will, and a lot more people who know about this research and support it.
That’s where you come in.
Visit www.AIDSPolicyProject.org for more information. Like us on Facebook (www.Facebook.com/AIDSPolicyProject) and follow us on Twitter @AIDSPol.
Below is the text of an AIDS Policy Project press release marking the first AIDS Cure Day.
First-ever AIDS Cure Day: Marked by Small Teaching Workshops on AIDS Research
Philadelphia -- October 3, 2013 -- The AIDS Policy Project has declared the first annual AIDS Cure Day for Saturday, October 5, 2013.
The past few years have seen major breakthroughs in the search for a cure for AIDS, with 19 people identified as either cured or in "remission" at major medical meetings such as the July 2013 International AIDS Conference in Kuala Lumpur.
"Remission" is a term used when a treatment has allowed a patient’s immune system to keep the virus at bay without medication. The AIDS Policy Project has asked people living with AIDS and their allies to hold small, informal "teach-ins" on AIDS cure research and activism on or around Saturday, October 5; several dozen events will take place across the U.S. and in a number of developing countries (Burma, Zimbabwe, South Africa).
The goal of the event is to increase public awareness and support for the effort to find a cure for AIDS. Currently, 34 million people are living with HIV/AIDS worldwide, with only half of those who need treatment able to access it, according to the policy organization HealthGAP. Treatment is paid for by wealthy governments, but the funding for it varies according to political will.
"People with access to AIDS treatment in developing countries may not have it tomorrow. And people living with AIDS need to take an expensive pill every day for the rest of their lives or they’ll die," said AIDS Policy Project member Jose Demarco. The U.S. spends $25 billion each year on U.S. and foreign AIDS programs, according to the Kaiser Family Foundation. It currently spends $56.4 million on AIDS cure research, mostly at the National Institutes of Health. "We need treatment to keep people alive, but a cure is a sustainable way to end the AIDS epidemic," said Demarco.
Says Kate Krauss, Executive Director of the AIDS Policy Project, "We want to teach people what we know so far in the search for a cure for AIDS. We’ve made gigantic progress, but we need the resources and political will to reach this goal. It’s ironic that AIDS Cure Day will take place when the National Institutes of Health will still likely be shut down. They are the biggest funder of AIDS cure research in the world. The NIH has a red warning box on their home page explaining that they have been shut down because the government has been closed down (www.NIH.gov).
Because the science has had breakthroughs just in the past few years, private funding is also lagging behind. "The science has made great progress in just the past few years -- so many foundations aren’t yet aware of it. Philanthropists could be pivotal in actually curing AIDS." Of the $80 million spent on AIDS cure research worldwide, less than $2 million comes from philanthropic sources. "This is the moment to step up and participate if you’ve ever cared about ending the AIDS crisis," said Krauss.
AIDS Policy Project. First-ever AIDS Cure Day: Marked by Small Teaching Workshops on AIDS Research. Press release. October 3, 2013.