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?
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.