I'm Not Cured Yet
By Thomas DeLorenzo
December 29, 2010
On December 14, 2010, my inbox was inundated with the news of the "Berlin Cure." My friends without HIV who, thankfully, have no reason to follow HIV-related discoveries as closely as I do, were all excited about this news. They were taken aback by my lack of enthusiasm. I had many reasons to hold back my joy. Some were purely scientific; some were personal.
One personal reason was very simple. I was around during the first supposed "cure." In 1986 the media was ablaze with a "cure" for HIV. It was a drug sitting on a shelf for many years that was originally designed to treat cancer, but it was not very effective. That drug was AZT. The years of AZT monotherapy began, causing much more harm than good -- but what did we know then? We were throwing anything we could at this fire and any success, no matter how small, was still a success. AZT provided promise but did not give us the silver bullet we had hoped for.
But it was a beginning.
The "cure" trumpet sounded again in 1996 with the introduction of protease inhibitors and Highly Active Antiretroviral Therapies were born.
That was nearly 15 years ago and while the epidemic became a "chronic manageable" condition, the need for a cure is greater than ever.
However, I am not quite ready to bring out my trumpet just yet.
First, one man a cure does not make. In order to really know it's a "cure" we need to have studies. Studies are made up of many individuals, from a variety of backgrounds (ideally), and take years to prove. This was one man who accidentally hit on the "cure" when he was originally on the road to treating his leukemia. Yes, I know some of the greatest discoveries of man have been made while on the same accidental road. However, I don't think we can start screaming from the hills just yet. This is a beginning. A promising one, but only a beginning.
Jay Levy, M.D., said it best just in the title of his article in the New England Journal of Medicine on February 12, 2009. The article was called "Not an HIV Cure, but Encouraging New Directions." Levy goes on to say "the case could pave the way for innovative approaches that provide long-lasting viral control with limited toxicities for persons with HIV infection."
One of the other keys to this discovery is the location. The patient was an American living in Germany. Had he been an American living in the US, he would have not received such long-term, high-cost therapy. I am sure his insurance company would have cut him off long ago. I am definitely sure Medicare would have fought to approve the first lifesaving treatment and would have never considered the second one, the very one that created this new media frenzy.
The true discovery here is the fact that it happened in a country with much more generous medical benefits than usually found in the US. The two keys to HIV -- both the "initial discovery" and the "cure" -- did not occur in the US. The "initial discovery" took place in France and the "cure" was in Germany. Both of these countries have a National Health Program that offers both hope and treatments to those in need. Drug companies and their powerful lobbying groups don't get the same say in health policy as they do in the US. Research is actually performed for research's sake -- not for advancement of a specific drug. Research in other countries still believes in curiosity and the human condition.
What motivation do the drug companies have in "curing" us? None. They are far better off having us linger on long-term medications, teasing us with the latest pill with fewer side effects and less dosages and offering more pharmacological "solutions" for the side effects.
Writer and Futurist Alvin Toffler believed that the "new nations" would be corporations and they would rule the land. Allegiances would no longer be to people's country but instead be replaced by corporations. Huge, multi-national corporations, financial and insurance companies, and media giants set the boundaries for our lives. I can see the language being written into health insurance policies across America, specifically removing this incredibly expensive treatment from their list, without naming it or naming HIV in the process. To remove a treatment for a specific disease would violate the Americans with Disabilities Act and a variety of other Federal regulations. But with a few creative words, the spirit of the law is soundly defeated.
Another recent government action prevents me from shouting from rooftops. It is the lack of funding for the treatments we currently have. This year, nearly 5,000 Americans will go without their lifesaving HIV drugs due to lack of funding. The Obama Administration was asked for $125 million in emergency AIDS Drug Assistance Program funding -- a mere fraction of the rest of the budget -- but we only received $25 million, leaving thousands of individuals stranded.
No one marched in the streets on our behalf. No one held three-day walks raising funds and awareness for us. The cries of the disenfranchised fell on deaf ears.
People don't care about us now because the Bush Administration successfully rebranded the disease as a heterosexual African problem. The domestic agenda was pushed off the screen and the global AIDS fight was the only one worth fighting. Nowhere is this more evident than in the (Red) campaign: You became a hero for donating funds to Africa but you are a freak if you actually help your fellow man down the street with AIDS.
This was evidenced in the documentary on Showtime -- The Other City. It talked about Washington, D.C., and its HIV problem. D.C. currently has a 3 percent infection rate -- 1 percent is considered epidemic; 3 percent is beyond comprehension. It is devastation on a human scale like we haven't seen in generations. D.C. has a health problem that is frequently seen in third-world countries and, yet, it is our nation's capital.
Still, there is no public outcry.
Yes, I am hopeful that this is a new path and could provide an improved treatment for many people like myself living with HIV/AIDS. However, I do not think the road will be an easy one. I can only hope that others will realize that the need for such treatments exists in their own backyard and will stand up and do something. I also hope that the stigma about people living with HIV/AIDS that exists in 2010 will begin to diminish in 2011. A treatment can cure, can cause people to live longer, but cannot change what exists in others' minds.
Until then, I am looking for a way to become a citizen of the European Union.
Who Knew So Few T Cells Could Accomplish So Much?
Until just a few years ago, Thomas DeLorenzo never would have believed he could become an HIV/AIDS activist. Before he was "officially" diagnosed with HIV in 2001 -- with 60 T cells and a viral load of 300,000 -- DeLorenzo had been living in denial. And until 2006, he was too busy dealing with the many side effects of his own HIV meds to think about helping anyone else. Then he and his doctors finally figured out the perfect med combo -- and, finally, DeLorenzo felt that he actually had a future.
DeLorenzo lives in Los Angeles with his partner and is currently attending law school at Southwestern University School of Law. His career goals include making sure all Americans have access to adequate and affordable health care. Prior to law school, DeLorenzo worked as a publicist in the entertainment industry, representing many award-winning celebrities.
In 2006, The New York Times named him an Unsung Hero in the Fight Against HIV/AIDS for his Christmas Goody Bag Project for the residents of the San Antonio AIDS Foundation Hospice. In 2008, DeLorenzo was the San Antonio AIDS Foundation's Angel of the Year. DeLorenzo's alma mater, Hofstra University, named him Alumnus of the Month in August 2009 for his work on behalf of people living with HIV/AIDS. DeLorenzo was recently appointed to the City of West Hollywood's Disabilities Advisory Board.
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