I was born and raised in Poughkeepsie, New York, and I’m 56 years old. I tested positive in 1990, while living in Albany, and was diagnosed with AIDS one year later. My AIDS diagnosis came after I got esophageal thrush, which is basically a severe, systemic yeast infection that can spread throughout the entire body. It took over two years of heavy-duty antifungals and a complete dietary makeover to finally rid myself of it, without any re-occurrences.
Living With AIDS My T cell count at the time of my HIV diagnosis was about 220 to 250, where it remains 26 years later. I am a long-term survivor of AIDS — I have been living with it for 25 years — and HIV. Based upon guidelines from the Centers for Disease Control and Prevention, I probably became HIV-positive 10 to 12 years before my first positive test, which would mean I’ve really been living with HIV for 38 years.
My CD4 to CD8 ratio, which is considered a more accurate barometer of how well the immune system is functioning, has held steady at between 10 to 14 percent. My T4 cell count has dipped below 100 numerous times throughout the years.
Building Resistance I only did AZT for a short period, because I realized — after extensive research — that they were dosing it too high, and subsequently killing people.
I began single-drug therapy — one of the early protease inhibitors — the first year it became available. I had access to it from participation in a clinical trial, one of many I have fought hard to get into over the years.
But as a result of previous drug therapy, and drug cross-resistance, my resistance profile is extensive. I am now fully or partially resistant to at least 90 percent of all antiretroviral medications currently available.
In the mid-1990s, I came down with a severe case of hepatitis A, for which I was hospitalized [for] over two weeks. During that period, I was informed by my HIV doctor that if my liver enzymes did not come down, I would die, thanks to my weakened immune system. I didn’t. Then around 2008 or 2009, I was diagnosed with hepatitis C. At that time, doctors assumed that giving hep C treatment to people who were HIV-positive, with 200 or fewer T4 cells would fail. My T4 cells hovered around 200 at the time, so my gastrointestinal doctors could not decide if, or when, therapy should be started.
When I moved into the beginning stages of liver failure, my HIV doctor hospitalized me. Her nothing-less-than-heroic measures saved my life. She stopped all the HIV meds and — because my GI doctors kept waffling — we decided that I would be my HIV doctor’s first hep C patient. Once again, she saved my life.
I responded to the hep C treatment within the first month and achieved full remission within six months. After a grueling, horrible year of interferon shots and ribivarin, I am now cured of hep C.
After I finished that treatment, I was able to go on a four-drug HIV regimen. I am what they call a person who responds virologically, but has no response immunologically, which means I now have an undetectable viral load, but my immune system has never recovered. My T4 cells have never been higher than 250.
My Fight Back Even with this treatment resistance, the need to constantly switch medications, and the battle to keep my immune system healthy, I’ve always stayed busy. I joined the protest group, ACT UP, in the mid-1990s, and participated in many direct action demonstrations locally and nationally. I was a co-founder of one of the first organizations outside of New York City for people living with AIDS, in Albany. I served for many years as a member of the community constituency group overseeing all HIV and AIDS research for the federal government. My last year as part of the group, I was elected to serve on the executive committee, the only non-medical person [to do so]. This committee had final say on which HIV and AIDS trials would start anew or continue. Those two years were invaluable in terms of my educating myself about this disease.
I served for years as a member of the HIV and AIDS advisory board for Albany Medical Center, where I was eventually appointed to the hospital’s own advisory board. I was one of the first members of the New York State HIV Prevention Planning Group, setting up all of the local Ryan White HIV/AIDS Program networks throughout the state. I have served in many different roles as an HIV housing advocate nationwide.
I Couldn’t Be Prouder One of the things of which I am proudest is helping the associate dean of Albany Medical College start their own HIV/AIDS regional education program in schools. I continued to participate as an educator and speaker for at least 10 years.
*As told to Savas Abadsidis