The message "Silence Equals Death" of the '80s and '90s that we desperately and defiantly displayed on our t-shirts and banners or whatever else we could paste or splash it on, was the cry of Persons With AIDS and their friends. We screamed: "Stop the dying. We demand a medical response for this disease that is killing us!"
Today, many of us who now take the medication for granted are alive because of our pioneers' wave after wave of protests to educate and challenge the doctors and the pharmaceutical companies. The demonstrations led by ACT-UP were dramatic and not always pretty, but they worked. Society responded and money poured into scientific research and the results were the astounding breakthroughs in research on HIV and the immune system, followed by treatment medication. I cherish and honor the memories of those heroes and heroines who fought, over the years, for their lives -- and for the many who died while waiting for science to advance.
What an amazing legacy! Their militancy not only saved our lives, but has enriched and empowered our community and culture.
Here is the connection with today: There is significant scientific evidence that a cure for HIV is attainable in the near future. A Cal Tech scientist recently estimated within 10 years or even sooner. A cure has already been achieved with the "Berlin patient." Right now, there is scientific progress towards duplicating the "Berlin cure" without the grave risks required of the Berlin patient. There are other amazing scientific projects, some of the best right here in the LA area, at USC, City of Hope, UCLA and Cal Tech and at the AIDS Research Alliance.
I want to reintroduce the slogan of the past, "Silence = Death." I do not raise it in a flippant way, but it in way that I hope respects its origins. I am saying the present refusal to adequately fund for HIV cure research is killing us. And that once again, silence equals death.
Too many of us are sick and suffering from HIV induced complications such as heart attacks, cancer, osteoporosis, high cholesterol, cognitive dysfunction (for which there are no effective pills!) and we are dying a lot sooner than we should. For many long-term survivors, treatment options are running out or have run out.
Dr. Michael Gottlieb, who authored the first report to the CDC identifying AIDS as a new disease stated recently on the 30th anniversary of AIDS, "I think the Berlin patient is an important proof of principle ... that you can, in fact, eradicate HIV in someone who already is infected. ... Now scientists in a number of institutions are working on safer ways to achieve the same result. I'm very excited about the potential for finding a safe way to eradicate HIV."
Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Disease (part of the National Institute of Health), referring to finding a cure for HIV, stated in a recent interview with Associated Press, "I want to pull out all the stops to go for it." However, there still hasn't been an adequate increase in the funding for cure research.
Today we know a cure is possible. The leading scientists are telling us that. With these facts, to remain silent about proceeding full throttle with funding for a cure means we will continue to die unnecessarily. I know I will die too soon and before that I'll probably be hobbled by an HIV complication solely because of criminal neglect -- the refusal to adequately fund for cure.
Why is hardly anyone speaking up and demanding more money for cure research? If those leaders and institutions who profess to act on our behalf and even say they exist for our best health interests continue to fail to address the problem, we need to tell them to get their heads out of the sand and shout, "Silence = Death!"
Fortunately, there is one national group that is focused solely on trumpeting the call for a cure: AIDS Policy Project (aidspolicyproject.org and Facebook.com/AIDSPolicyProject). It is a group of AIDS activists, scientists, doctors and people like you and me, and has a wide range of supporters, including researchers, physicians, as well as playwright and ACT-UP founder Larry Kramer.
At this moment, they are our only hope to get the message out and achieve radical change. Some of APP's present projects:
Their Web site also has a simply written "Fact Sheet on AIDS Cure Research." And join APP! There is no charge. You can also get more info by contacting:
AIDS Policy Project
5120 Walton Avenue
Philadelphia, Pennsylvania 19143
While I consider APP the only hope at the present, I believe we need to recognize and deal with the following huge obstacles to overcome and bolster APP's campaign for a cure:
Problem number 1: Scientists lack adequate funding to perform the research! The NIH gives 97% of its money allocated to HIV research for treatment research and only 3% for cure research. While treatment research is still important, it makes more sense to allocate a larger percentage to cure research, now that the possibility of a cure is much closer than realized. In addition to saving millions of lives, the national debt could be reduced by $50 billion -- a good chunk of the country's budget crises.
Problem number 2: To my best knowledge, only four pharmaceutical companies in the US are investing in cure research. I suggest that the drug companies lack the incentive to find a cure when their corporate revenue will continue to boom by maintaining us on the treatment treadmill. However, the company that invests in the science and discovers the cure will become the premier pharmaceutical company of the world, make a lot of money for their shareholders and attract brilliant scientists.
Problem number 3: Us. We are uninformed. I hope this article will help us all become better informed and participate in whatever way you can in advocacy for a cure.
Problem number 4: HIV/AIDS-focused organizations and others that have strong programs and clinics servicing the HIV/AIDS community in the LA area. There seems to be no leadership or vision in the LA area advocating for a cure. Our community leaders seem to be in a trance; their main -- if not only -- world view is treatment meds. Simply by their stating that NIH should allocate more than a measly 3% of all its HIV research funds to cure research would be a good start. These great institutions of social services should be advocating and coordinating advocacy for a cure, such as holding town hall meetings on the latest developments on a cure. APP knows scientists and doctors here who, in a heartbeat, would respond, participate, and educate. The HIV/AIDS organizations should be organizing people and the community to meet with our congressional representatives. What about a town hall meeting to organize the grass roots, like ACT-UP did, this time around for a cure? Are they really representing us effectively and humanely if these well-intentioned organizations still lack the vision to advocate for a cure at a time when not only the lives of people with HIV/AIDS, but the science itself, cries out for it?
For further info/discussion, please contact me at: firstname.lastname@example.org.
Gerald Gerash, early Gay Liberation activist, is in the process of forming Committee for A CURE. Contact Gerald at GerashLaw@aol.com for more information.