Things I Thought I’d Never See

red the day aids was discovered

June 5th of 2014 was the first ever National HIV/AIDS Long Term Survivors Day.  While many organizations around the world took part, the day itself was organized by the San Francisco based Let’s Kick Ass, the largest and most vocal group of Long Term HIV/AIDS survivors.  They regularly provide events and panels to create a community that empower those of us who survived the worst of AIDS and are still kicking.  (The organization likes to suggest a more purposeful kick, so yes pun was intended).  The organization of this commemorative day was moving and powerful for me, as it was for many others around the country and world, especially since many of us have felt our stories became irrelevant to those around us once effective treatments became a reality. 

I grew up in a home, and a town, where I was regularly told that AIDS was God’s punishment for what I was.  And at age 20, I just a kid and tested positive.  I was told I had two years to live.  I did my best to live a full and carefree-life in that time, yet in spite of that, part of me has always been resigned to the idea I would not live to see many things.  Yet the past decade re-enforced the undeniable fact that I am still here, and there is much left for me to see.  The list of things I thought I’d never see is long:  Reliable medications, ones that I can trust for more than a decade to keep me alive and healthily with a few manageable side effects.  A black president.  Legal Gay Marriage.  The ability for people on proper medications to avoid transmitting or receiving the HIV Virus.  A National HIV/AIDS Long Term Survivors Day. A straight, HIV+ Hemophiliac named Vaughn Ripley, who is also a 25+ year HIV and AIDS survivor and one of few hemophiliacs of his generation to survive AIDS and Hepatitis C who, right now, is finalist to be the next Men Health’s “superstar” in a national reader vote.   

All of that collective has not only blown my mind, but it has reawakened a long dormant passion to fight for a real end to AIDS.  But what really awoke that beast was a day about eighteen months ago, when I heard U2’s Bono on a talk show discussing the (RED) Campaign and for the first time I heard the words “An AIDS Free Generation can be born in 2015.”  I listened to his talk and then did some research, I learned it was already medically and logistically possible to ensure that in 2015 no babies are born with AIDS.  My first reaction was skepticism; my first thought was this idea is, for much of our world is more racially, politically and fiscally motivated than the leaders of the movement hope.  My first thought was these powerful people would stand in the way, and it would never happen.  But the more I learned about the ease of new treatments and the power of choice in prevention, I became aware that not only could the Generation of 2015 be born AIDS-Free, but they could live their entire lives that way. There are a number of Medication Prophylaxis Options available in the world, but only one, PrEP, is available in the US.  These medications are the pill equivalent of an exposure based vaccination.  We have similar voices that insist HIV is a hoax.  But despite the growing controversy over vaccines, we know they work.  As this chart of the life of Polio in the US shows: 


The more I learned about this movement, and watched, for the first time in the lives of all of the long term survivors that celebrated on June 5th, a US President (yes, the Black one) actively joined the fight (with (RED) and nearly the rest of the planet) not just with words but with a plan, to achieve the 2015 goal.  He created The U.S. President's Emergency Plan for AIDS Relief (PEPFAR) to work with International organizations to achieve the reality that only politics and profit margins are preventing.  For the first time, we have the most powerful man in the world calling to end AIDS.  And our gay political rhetoric is sexualizing and judging the very tools that have made him become the most active voice for HIV/AIDS cause ever had in the Whitehouse.  His focus is global, we continue too insist that HIV and AIDS be gay, and as a result, in our community prophylaxis gets the same Puritanical responses that our sexual habits receive.  We all know that debate backwards and forwards.  But in that debate, it seems to me, that the only people who still think of AIDS as a “Gay Disease” are right wing Christians and gay people in the US.  The rest of the world sees AIDS as a global, racial and poverty issue.  And the gays that initially led the good fight now fight among ourselves instead of toward the good of all. 

 All of these things, and many more like them, which are happening at a profound rate (faster than I can process), make me more than ready to join the SF group in kicking ass. Not for me, not for the jaded or fearful men who suggest my call for PrEP is about my selfish desire for sexual freedoms.  It’s because I have learned to believe again.  The reality is kids, worldwide, born after 2015 will never have to be a long-term survivor.  That possibility alone is the most compelling I never thought I’d never live to see.  Those unborn may never have to survive HIV/AIDS at all.  They can live a life as free of it as I have of Polio, Whooping Chough, and countless other diseases I did not ever fear because of preventative treatment.  But for that to happen it takes those of us who know what living with HIV and AIDS is, to make that possibility our legacy. I for one, am ready to kick some ass again, and to do what I can to make this possible reality an actual one.  I believe that if enough of the men and women who finally had a rest after the worst of the war, and have celebrated a day to commemorate their personal struggles, will now also look past themselves and forward toward those that come behind us, the possibility of ending AIDS can became a reality.  We really are that close, its just that no one believes it, or if they do, they aren’t sure what they can do.  Like Global Warming.  But this one is much easier to solve.  All it takes education alone and the desire to kick some ass to get that education to the kids that need it.  But it takes more than me, all of you who have ever lived with, lost a loved one, or have been otherwise effected with HIV, need to kick some ass too.  We need to do it loudly and now.  Not for me, not for you, but for the kids about to be born free of that which oppresses many of us daily.   

Leslie SmithComment