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HIV/AIDS Blog Central

If AIDS Is Only 30, Why Do I Feel So Very Old?

By Thomas DeLorenzo

July 17, 2011

When the newspapers were ablaze with "AIDS at 30" I felt as if I should have gone out and gotten a cake, complete with the requisite 30 candles. In spite of the statistics being tossed around, we have again missed another public health moment in these ever so loosely United States. I say loosely because the quality of healthcare is truly a state-by-state situation. Indiana is about to set back the clock by defunding Planned Parenthood and allowing women to go without the most basic of health tests. States, via their federally funded AIDS Drug Assistance Programs, also get to choose which HIV drugs they cover, and what income levels are eligible.

Currently, the State of Florida, with the third highest caseload of HIV patients, has nearly 4,000 on the waiting list for the life-saving medications. The entire country has over 8,000 individuals waiting for these drugs. The drug formulary list in Florida has been cut to only antiretroviral medications and drugs that are related specifically to opportunistic infections. Gone are the drugs that treat anything else, including the long list of side effects people with HIV often suffer. The Ryan White CARE Act, which provides the funding for the AIDS Drug Assistance Programs, was under-funded during the Bush II years, and with the economy melting down like we have not seen since my grandparents were newlyweds, we are set for a public health disaster.

But, hey, let's take away basic services from people because its considered "socialism" and buck up and take care of ourselves. After all, we are made from pioneer souls and if they could survive winter in the Rockies without a heat lamp, why are we asking for healthcare?

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I digress.

Nothing, not even cake, can take away the pain of past 30 years. Nothing can take away the fear I had living in Manhattan, simultaneously learning that what my dick was really supposed to be doing would be the precise act that could kill me. My dick, and the dicks of others, were the proverbial gun that could easily take my life.

I was one of the "fortunate" ones -- I got to watch others die first. At 28, my first ex-boyfriend was to go. Steven Foreman. Steven was a tall, dark and incredibly handsome man. When we walked into a room, my female friends would say, "Please don't tell me he is gay." I would simply respond, "Yes, and that man gets naked with me every night." I was 21 and living my life to the fullest in Manhattan, taking it all in, as if it were my last night. Who knew I was so very right?

In 1988, when I was 25, I met the love of my life. I was in London, minding my own business admiring art in London's National Gallery. This man walks by. He had the bluest eyes I had ever seen. I could have stared at them forever.

Being in a foreign place, I was bolder than usual, and turned around to watch him walk away. He, too, did the same thing. We played this little dance, he would move closer, I would move away, surrounded by the early Germanic paintings. Finally one of us spoke. Over the years, I have opted to allow him credit for this moment.

We spent the next seven years together. He would leave me on February 9, 1995, just over 16 years ago. But who's counting?

In spite of my pleading with God, in spite of my crying through the night, in spite of the support groups, he never returned. I would see someone with hair similar to his and my heart would leap out of my chest. I would be crestfallen only to find it was a stranger.

My life has gone on, somehow, in spite of these only 30 years with AIDS.

We are at a unique point in our history in these somewhat United States. We can choose to create a society that lives up to Webster's definition: A highly structured system of human organization for large-scale community living that normally furnishes protection, continuity, security and a national identity for its members. Instead, we allow people who cannot fight for themselves to do exactly that. We allow them to wallow in their pain and suffering. In spite of calling ourselves one nation under God, we behave in the most ungodly way and turn our backs.

How would I celebrate AIDS at 30 if I could? Before I blew the candles out on that proverbial cake, I would have my list of wishes. I would wish that testing was mandatory, so that all people would know exactly what their bodies were doing and could take the necessary precautions. I would also wish for increasing funding for the Ryan White CARE Act, eliminating forever any concept of waiting lists for drugs. I would also wish for de-stigmatizing the disease. In spite of this virus that lurks in my body, I am capable of many great things. Don't pre-judge me just because I get to work harder at staying on this planet than you do. If you need to, give me some credit for what I have been through.

I would also wish for an understanding that the Berlin patient is just that -- a patient in Berlin that got VERY lucky. That because of this pioneer spirit, creating the lack of healthcare in these sort of United States, it would never happen here. It happened in a nation that puts humans before dollars for a reason.

And, I would wish with all my heart that I could have David back again.

But apparently these are just wishes that will go completely unfulfilled. In spite of last year's National HIV/AIDS Strategy, without the necessary funding, it's not worth the paper it's written on.

Early in the epidemic, in 1986, the Los Angeles Times declared that it would take someone close to the President getting AIDS to make this a priority. I would wish disease on no one, but I am afraid to admit we need another Rock Hudson, or Arthur Ashe or Ryan White, or Aileen Getty, or, well, you get my point.

So I beg of you, these loosely United States, please let us all have access to adequate and reasonably priced healthcare. Please let us do what is necessary to eradicate this virus, once and for all. And, above all, please give us the funding to achieve these goals.

I would rather have all of these things than being left, once again, allowing history to let us eat just cake.

Thomas DeLorenzo
DeLorenzo.TheBody@gmail.com
Twitter.com/TDeLorenzo
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See Also
20 Years of Magic: How One Man's HIV Disclosure Inspired Others
More on the 30th Anniversary of AIDS

Reader Comments:

Comment by: Ion R. (San Jose, CA) Fri., Aug. 12, 2011 at 11:15 pm EDT
I am 30. I have been HIV positive for 5 years now. There are days were I feel so old and lived it all. I come to realize that I am still young and the horizon may lead a very pleasant life. I do hope that our progression to find a cure is still proactive and a dedicated search. We started from taking a bunch of colored pills just like Dr. Mario, the video game. Then the one a day pill come along and we felt like taking vitamins. I hope one day and I wouldn't have to worry about it all by taking none and feel more care free and always embracing the knowledge of the unknown. I am turning 31 soon and I am not planning to eat just cake. Even though, the virus discovery and I were born a couple days a part. Furthermore, I am planning to make the best meal with french appetizers along with wine and chocolate desert. After all, I want a piece of cake of life or have the entire cake. Enjoy.
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Comment by: Jose (Miami, FL ) Thu., Aug. 11, 2011 at 8:44 pm EDT
I was diagnosed in 2007 with full blown AIDS after I developed PCP and ,luckily, I had insurance, was working at the time. I was also lucky to be alive in the time of Anti-virals or else I would not be here. Having this disease has had me have experiences that no one would understand unless you walk in our shoes. First off, the stigma is very well and alive out there. THERE IS bias treatment withing the medical community. Some of these "medical professionals" have treated me like a leper or some dirty whore ( I am a gay man.) I was shocked. The US healthcare system is a mess, everything is run by the insurance "corporations" not doctors but you are at their mercy for anti-virals - without insurance - can cost several THOUSAND dollars A MONTH. Having this disease is a pain, you have to go to lab work every three months, doctor appointments then some of the meds cause heart disease - I have high bad cholesterol levels due to the meds when I never had this problem before. You have body fat changes due to meds and fatigue. So, yes, the "one pill is all you need" mentality is out there BUT they obviously have not lived day to day with the disease.
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Comment by: thomas delorenzo (los angeles, ca) Thu., Aug. 11, 2011 at 11:42 pm EDT
you are so very right -- no one gets it unless they walk in our shoes. thank you for writing.
Comment by: Katende (Kampala, Uganda) Fri., Aug. 12, 2011 at 10:14 am EDT
Lucky you Jose; you had an insurance which is your right health services but think of us Ugandans where treatment depends on the availability of drugs. Even if we are in the times of anti-viral assessing them is one of the challenges we face. I can't even estimate how die without getting them, even those who had that opportunity of getting started can go some months without getting a refill. Having HIV here is painful, but more painful to our sons and daughter die without any support not because meds cannot afford but our mother countries cannot afford the price
Please Western countries don't give up, we know you also have your own problems but count us among them


Comment by: Shawn (Washington DC) Mon., Aug. 8, 2011 at 3:56 pm EDT
Thomas, you have said what so many are afraid to say. I am glad and sad at the same time that someone actually shares my pain. I a a African American women living in the nations capitol and will be 38 years old this September and I feel like I am 50 I tell you no lie. I have been living with the virus for almost my whole adult life, and It is a 24hour job, on top of having to raise a daughter alone, on top of having to constantly stay up on the government trying to take you health benefits at every turn, on trying to remain productive, being a senior in college trying to complete this BS degree, on top of working part time with other women who suffer from some of the same trauma issues as myself. From watching other sisters like my self with the virus just give up and lay down and die because of the stigma associated with this disease I could go on and on.I agree with you totally it has not been as great as some might think when you have young adults saying things like if I get it I will just take my medicine and be ok. Not realizing that so much more comes with this disease than just taking some pills everyday. but if you have not walked the walk then you really can say. So having said that thanks again for talking about what really matters and you are not the only one who feels old believe me LOL Keep pressing my brother.
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Comment by: thomas delorenzo (los angeles, ca) Thu., Aug. 11, 2011 at 11:44 pm EDT
thank you -- and you keep moving forward with all of your dreams and ambitions as well. we need to continue to have our lives in spite of all this -- and to teach others exactly what we go through.


Comment by: John-Manuel Andriote (Norwich, CT) Thu., Aug. 4, 2011 at 11:47 pm EDT
Thomas...Thank you for saying what you say here. I'm glad to see another gay men actually speak up and claim the pain and devastation he has/we/I have experienced in these 30 years of AIDS. I "came out" as a gay man 30 years ago this summer, just as AIDS was first reported. The epidemic has cast a dark cloud over my entire life as a gay man. It's outrageously lonely carrying the painful memories of men I've loved and lost, and of one man in particular who was also "the love of my life." Those who are not HIV+ have also suffered, no question about it. But they still can't grasp (how could anyone who hasn't been there) what it's like to know the murderer of your loved ones is lurking within your own body, waiting for the opportunity to surge back and overwhelm and kill you, too. Carrying the weight of all of this for so many years, decades, has prematurely aged those of us who aren't trapped in denial or totally anesthetizing our pain. I try, hard, to accentuate the positive (no pun intended) and to focus on the wisdom I have gained from my experience. But wisdom doesn't prevent the tears from springing out of nowhere when a remembered moment--usually a happy one--springs to mind and I realize, once again, how alone I feel at age 52 without the men who knew me as a young man, with whom I wanted to grow old.
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Comment by: thomas delorenzo (los angeles, ca) Sat., Aug. 6, 2011 at 6:55 pm EDT
that was very well said. i sometimes wonder if the past really happened if those people it happened with are not around.

thanks for reading, and thanks for the beautiful words.


Comment by: Luca (Milan, Italy) Thu., Jul. 21, 2011 at 10:40 pm EDT
Waiting lists for drugs? That's really scary. Given the financial issues we are facing in the EU, I really hope nothing like that comes to us too - my "gooddealing" with HIV relies on knowing that meds and tests are and always will be guaranteed and free to me, as to anyone living in my country (or just happening to be here: you don't need to be a citizen in order to even to people entering the country illegally). I just discovered that HIV+ foreign people were not allowed in the US until some months ago - we have so many things we can learn from the US, hope no politicians here think the health system (and related laws) is one of them.
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Comment by: thomas delorenzo (los angeles, ca) Sat., Aug. 6, 2011 at 6:56 pm EDT
and they can only enter the country -- this cannot stay in the country. still some restrictions but not as many.

we can all learn from each other -- and i certainly hope we can learn understanding from your country -- cause we certainly dont have much of it here.


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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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