This article was cross-posted from HIVhaven.com.
Being an AIDS treatment activist holds lots of very special memories for me. I could go on telling stories for days of demonstrations, actions, conferences and everyone and everything that made them special. I joined ACT UP New York right after the first protease inhibitors were approved. The dying in the U.S. was just beginning to slow down and people were still afraid and angry. ACT UP still named those who had died during the week at each meeting.
During the opening plenary at AIDS 2012 Phill Wilson, President and CEO of the Black AIDS Institute, delivered a highly passionate and inspiring speech to help kick off the conference. During his speech he called for all people living with HIV to reveal their status to help end HIV stigma. He did say that for some people this isn't possible because of certain issues. I worryingly see a movement in the making asking people to come out as HIV positive and this concerns me.
Take a moment and think back to when you tested positive for HIV. What was your initial reaction? What went through your head? For most of us it was sheer panic. "What now?" is usually one of the first questions that comes to mind.
If you're not HIV positive, think of a time where you were tested for HIV and sweated it out while waiting for the results. Some of us thought we'd kill ourselves rather than live with HIV/AIDS, believing our lives would be over.
I am not a victim of HIV or AIDS. I am not someone to fear or pity. I am not beneath anyone, less of a person, or unworthy because I am HIV positive. I am a person living with HIV. I am me! Not the same person I was before I was diagnosed, I am better than I was. I am more than I was. I am more now than I probably ever would have been without HIV because the virus has made me, allowed me, facilitated me, to grow and evolve in ways I never would have been able to without it. I know this. I will not allow ANYONE to pity me, stigmatize me or try to make me feel less than who I am. I do not give anyone that power over me. Because of this I say here, LOUD and CLEAR, for me as a person with HIV, personal stigma is irrelevant!
Almost everyone with HIV has felt from time to time, or been made to feel, like a "pariah." We've all heard the word. Most of us know the feeling. As if other people need to be protected from us. We've heard people say "HIV is the new leprosy" or in our defense "HIV's not leprosy you know." How about the ad with the scorpion in bed as if we were poison?
Groundbreaking results of two large pre-exposure prophylaxis (PrEP) studies may lead to a new prevention option to reduce HIV transmission. Data released on two PrEP studies showed high levels of protection against HIV infection when tenofovir (Viread) or Truvada (tenofovir and emtricitabine) were taken daily by HIV-uninfected individuals at high risk for infection.
The epidemic has changed so much since I've been involved in the AIDS crisis. When I was first diagnosed, HIV really was a death sentence. I remember my first doctor telling me that I could live as long as 10 years. I smiled and walked out of her office happy. I made it to my car before I realized that she had just told me I'd be dead before I was 38 -- if I was lucky!
Even though they don't always go great, I've always liked coming to New York Presbyterian for my pulmonary hypertension appointments. For years I was seen at the pulmonary clinic. Six month ago I graduated to the heart failure clinic.
I felt sorry for people. I felt sorry for animals. I even felt sorry for my stuffed animals when I didn't give them enough attention or got tired of playing with them. I was the kind of kid that dogs and cats 'followed home' all the time. By the time I was 8 I had already realized that there was a tremendous amount of pain in the world. Although I also saw so much beauty in life, the suffering of others was overwhelming, suffocating. It haunted me.