Back in 1982, Mark Milano had suffered for over a year with inexplicable weight loss and other illnesses that landed him in Chicago emergency rooms on multiple occasions. At the time, the medical establishment was only just beginning to gain an understanding of AIDS. When a doctor finally told him he probably had this serious new illness, Milano swiftly made a commitment to himself that he would beat the disease. He has carried that tenacity into his career at GMHC and to his activism to fight for people with HIV. In this question and answer, Milano shared his journey as a long-term survivor of AIDS and how he has helped others live more fully through education and empowerment.
How did you get involved with AIDS activism?
Before my diagnosis, I was a film editor living in Chicago. After I nearly died in 1985, I decided that I would change my life. So I bought a one-way ticket to New York City and moved into the YMCA. I learned how to take care of myself, fight back, and advocate for people with HIV by joining groups like Body Positive and ACT UP. I even volunteered at GMHC.
What brought you to GMHC and what do you do here?
I joined ACRIA (a program of GMHC) in 2001 and currently serve as the lead trainer. ACRIA focuses on serving the needs of older adults with HIV. I use my knowledge about HIV to translate complex medical information into understandable information that I offer in workshops for different audiences. I also provide tools for people living with HIV to manage their own illnesses. Our goal is for people with HIV to become partners with their healthcare and service providers, not just passive consumers.
Why is education empowering for people living with HIV?
We see better outcomes for people who make decisions with their doctors – if they know why they should take HIV meds instead of just being told they have to, they do better. Unfortunately, many healthcare providers don’t have an hour to educate their patients, and often are not the best teachers. At GMHC, we are experts in providing education for people with HIV, as well as the social workers, case workers, and counselors who support them.
Where do you see GMHC going?
Throughout GMHC’s history, we have evolved our services to meet the epidemic where it is. We are focused today on the shifting demographics of HIV. More than half of people living with HIV are over age 50. I just turned 65, and the issues you face at 65 with HIV are different than the issues you face at 25. We’ll see the continued evolution of our services to meet the growing needs of older adults. This includes doing workshops on aging with HIV and creating social gatherings for older people with HIV. For example, last year during the COVID pandemic, we held a webinar for a national audience of close to 1,000 people that featured a presentation by Dr. Tony Fauci about the threat of COVID for people with HIV. During the pandemic, we quickly transitioned our educational programs online and are now reaching larger audiences – not only in New York City but worldwide.
What is the most gratifying aspect of your job?
There’s nothing better for me than leading workshops that help people better manage or cope with living with HIV. I love when someone comes up to me after a workshop and says, “I finally get this!” Back in 1982, there was nothing available for newly diagnosed people. GMHC has been committed since its founding to helping people with HIV figure out how to live well – and we do it better than anyone else. I had a second near-death experience in 2007, when I was battling cancer, and I felt that I have spent my “extra” time here on earth well and done something meaningful. The entire staff at GMHC are working to save and improve the quality of lives of people living with HIV. Those goals have also always been at the core of my own activism.