The Women From TV Are Now My Angels as I Fight Against HIV/AIDS
August 31, 2015
I was eight years old when I decided I wanted to work on social issues when I grew up. My "aha!" moment came when my parents asked me to pack a box of my toys, and we drove to a migrant worker camp. My Dad, a rabbi, had worked with the great activist Bella Abzug, so he knew many of the people at the camp. He left me alone there for the day to play with children who had no toys, slept on dirt floors, and had little to eat, but who seemed so happy. From that day forward, my career path was clear in my mind.
Twenty years later, I was living my dream. My partner and I had built a home and were leading a full life with our careers, volunteerism, lots of friends, and a loving, supportive family. Then, I was diagnosed with HIV -- and told that I had about two to three years to live. Though it was the early '90s and I was living in Indiana, I decided to tell all my friends and family. I believed then, and still do, that the only way to fight stigma is for those of us who are positive to be open about it.
I started attending weekly support groups, but I left feeling depressed and guilty. I just whined about the side effects of AZT, while the others spoke of being fired, disowned, or losing friends. I saw how much I was blessed, and had another "aha!" moment. I realized that all of us with HIV share a common bond, even though our stories are often very different.
In the support group, we talked about the lack of political leadership on AIDS support and research. Our hero was Elizabeth Taylor, who seven years earlier had announced she was committing her life to fighting AIDS. She convinced President Reagan to make his first and only public speech on AIDS before he left office. Protesting the U.S. immigration ban on people with HIV, she held up her British passport in 1992 and said "I am an immigrant, President Bush -- would you deny me entrance if I had AIDS ?"
At the 1992 Republican and Democratic National Conventions, two women with HIV -- Mary Fisher and Elizabeth Glaser -- gave speeches, fighting ignorance and stigma by sharing their stories on a very public stage. These women made me realize I needed to do my part as well. I asked my father to preach his Yom Kippur sermon about our family's truth of HIV. Senator Frank Lautenberg was at the service that day and immediately reached out to say he would do all he could to help the cause, and me personally.
I wanted to join the movement, but I had not inherited my parents' public speaking gene. In fact, I got a C in speech class at Indiana University. But I knew I had a story to tell. So I asked friends if they thought their campuses were ready to include a personal story on HIV at their student orientations. Most said "no", but a friend, Scott Horton, called and said that Texas Christian University was ready!
I asked my friends who were on the college lecture circuit for advice, and they told me to find common ground. My response was, "How? I'm a Jewish guy with HIV from the North." Another friend, T.J. Sullivan, told me it didn't matter where I came from, or what religion I was. "They'll relate to your drinking and sex stories, and then get a punch in the stomach when you reveal your diagnosis." The truth was that I had always used condoms, except when I was drunk. Alcohol played a big role in my college life and in my HIV diagnosis.
So, on the eve of the 1992 presidential election, I nervously stepped up to a podium to tell my story in George Bush's home state. It was amazing. They laughed at my tales of drinking parties and moaned when I said I woke up and didn't know who was in my bed. And you could hear a pin drop when I disclosed my HIV status. I could see tears in their eyes as I shared how I told my parents that I only had two or three years left to live. When the speech came to an end, there was a long and thunderous standing ovation. The students lined up for over an hour to hug me, ask questions, or quietly disclose that a loved one had HIV or had passed away from AIDS.
But people left that evening somber -- too somber. So T.J. and I created a program that was funny, yet moving. We thought it would only last a few years because of my health (we even talked about collecting a T-shirt from each school to use in my eventual AIDS Quilt panel). Then along came the HIV drug "cocktail" that saved many of us who are now over 50. T.J and I spoke together for eight years at more than 1,000 campuses and student conferences.
When the program finished, I went to work with The Elizabeth Glaser Pediatric AIDS Foundation, organizing college students to do grassroots fundraising and educational programs. One important learning moment for me was when Scott Wolf and Brooke Shields signed on as co-chairs for a fundraising event. Other celebrities soon joined: Lucy Liu, Kimberly Williams, Tia & Tamera Mowry, Jaime Pressly, and "Survivor" and "Real World" cast members, to name a few. It showed me the importance of celebrity in getting media attention for a cause.
It was hard to leave EG PAF after 14 years, but I continued to get attention for health-related causes by working with the entertainment industry and pop culture. I was a Director for St. Jude Children's Hospital, Feeding America, and Malaria No More. I loved supporting these causes, but I missed working for the cause that touched me personally. Then a friend introduced me to the Trustees of Elizabeth Taylor's estate. My resume was on their desk later that day.
At the end of August, I will celebrate my two-year anniversary as the Managing Director of The Elizabeth Taylor AIDS Foundation. I feel like two of the greatest Elizabeths -- Taylor and Glaser -- hover over me like angels every day. And Mary Fisher has become a friend and an ET AF Ambassador. It's ironic that three of the women I had watched on TV and read about have become part of my life.
Even before I took this position, I said that if not for Elizabeth Taylor making people pay attention to HIV, co-founding amfAR, and doing advocacy work, many of us would not be here today. I certainly never thought I would reach age 51. Yes, all of us over 50 have a lot of aches and pains. But those of us who have been living with HIV for decades have things happening to our bodies at a faster pace. I'm not complaining, since I've had 20 bonus years added to my original prognosis.
After arriving at ETAF, I learned about our grant to ACR IA for leadership in the area of HIV and aging. ET AF Ambassador Martha Nelson had introduced the two organizations. As the study of HIV and aging is a new frontier, I wanted to learn more, so two of Ms. Taylor's grandsons, Quinn and Rhys Tivey, recently joined me to listen to 30 seniors share their stories in a focus group at ACR IA about HIV and aging. I was surprised to meet seniors in the room who were newly infected, and who were heartened to learn from the long-term survivors in the room. It was a moment of hope.
I recently traveled to Malawi to see the Elizabeth Taylor Mobile Health Clinic program in action. It was a full circle for me, as many of the homes we visited reminded me of the dirt floors in the migrant worker camps I saw as a child. And, like the kids I played with then, these children couldn't have been happier, despite living in one of the poorest villages in the world.
The Elizabeth Taylor mobile clinics are helping break down the stigma of getting tested for HIV, and helping 900,000 people receive treatment and care. The first day I arrived, I was greeted by a hundred people who were waiting to get tested. Asked to say a few words, I decided to disclose my own status as a long-term survivor of HIV. As the translator repeated what I said, I heard a gasp, and then applause. I went on to tell them that because I take my medication every day, I am still here nearly 25 years after my diagnosis. HIV meds had only recently been introduced to that area of Malawi, and access to health care prior to our mobile clinics was sparse, which meant that there were not many long-term survivors in the crowd. I was shocked at how many wanted to hug me and even take a photo with me. While my story was once a cautionary tale to young people in Texas, in Malawi it had become a symbol of hope.
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