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Spilling My Guts at the ACT UP NYC Long-Term Survivors Forum

ACT UP has always intimidated me. In the 1980’s, while working at LA Shanti to provide emotional support to those dying of AIDS, I doubted my activist cred while watching the dramatic, inspiring actions of ACT UP. Everyone has a role to play, of course, but I so admired the courage and laser-focused anger of ACT UP, as evidenced in the Oscar-nominated documentary How to Survive a Plague.

ACT UP NYCSo it was with excitement, yes, but also a great deal of trepidation that I accepted an invitation to speak at ACT UP NYC’s first town hall forum on AIDS long term survivors last November. I certainly qualified, having tested in 1985. But what could I possibly offer a room filled with activists who had literally defined the word empowerment and had stomped their way across New York City during the most ravaging days of AIDS and beyond?

The forum was held at the NYC LGBT Community Center, in the very room where Larry Kramer had founded ACT UP decades earlier. I bought an ACT UP button at a side table, with tears in my eyes. The sense of history was palpable.

Any doubts about the relevance of addressing long term survivors were answered by a packed room. The program included presentations by Graham Harriman, Director of the HIV/AIDS Bureau, Mark Brennan-Ing of the ACRIA Center on HIV & Aging, and popular local gay therapist Scott A. Kramer.

When it came my time to speak, to offer my personal perspective on a lifetime with HIV, I abandoned my note cards and the story came pouring out of me. My voice quivered the entire time. I cried and told my secrets and my shame and my grief in ways I have never revealed on my blog.

Ed Barron Mark ACT UP NYCThe room responded with warmth and acceptance. Afterwards, iconic ACT UP members whose names I recognized greeted me and thanked me (like Ed Barron, at left). It was one of the most nerve-wracking and proudest days of my life.

OUT FM featured my remarks recently on their weekly radio show on WBAI/NY, and it is through their courtesy that I am able to share this recording of my presentation. It includes a little adult language here and there (sorry, Mom!).

Our most effective tool as people living with HIV, and as long term survivors in particular, is simply telling our story. There is such power in the personal.

My deepest gratitude goes to ACT UP NYC for everything, both then and now. Thanks for listening, and please be well.





  1. Nicole Seguin April 15, 2015 at 5:21 pm

    Beautiful thank you for sharing your journey

  2. Nancy Lanzillotti April 15, 2015 at 7:01 pm

    You are my brother and my hero. I think I can’t be any prouder of you than I already am and you do something like this. Wow, I am so lucky to have you in my life and so are so many others that you touch. Way to go little brother!
    Love, Nancy (SIS)

  3. Sean Strub April 15, 2015 at 7:19 pm

    Mark, you made me cry again.

  4. Robert allen April 15, 2015 at 10:09 pm

    You my dear are a strong person. Listening to your speech did more for me than you could possibly know. Thank you. All these years I felt like the one and only overly emotional creature. Often speechless. This was a beautiful burst of fresh air.

  5. Anne King April 16, 2015 at 9:49 am

    I so admire your courage in facing that audience and being able to share your story with complete candor and honesty……….and with some adult language as well! Loving you as always.

  6. richard April 16, 2015 at 1:35 pm

    Thank you, Mark. Emil would be so proud of you. And I am very, very proud to be your brother.

  7. Caroline April 17, 2015 at 9:02 pm

    Powerful, beautiful words. Thank you for sharing your story. Much respect.

  8. Jon Jay Read May 21, 2015 at 2:42 pm

    You were indeed great, Mark. The whole night was inspiring. Stay well.

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