The full text of this article By Aundaray Guess first appeared in POZ magazine here.
Last week I had a somber encounter with a person I have known casually for a few years. For the sake of this post I'll call him Tony. In reality his name doesn't matter as he represents so many who lives with HIV. As a HIV positive person for two decades, he is a member of the group of men and women who have been positive for a large part of their lives. In fact Tony has been positive for twenty something years. So his story speaks to the long-term survivors who are creating new chapters of dialogue. A unique audience in which the spotlight of HIV discussion often fails to illuminate.
Somehow in our conversation we started to talk about medication adherence. I was letting him know, although I wanted to take a 'holiday' (a break from my medication), I knew the risk of it. He looked at me plainly and shared he was no longer on HIV medication.
His reason was sad to hear. He reported it wasn't his choice; he recently became resistant to all available HIV medication, including his own regimen. He described how when taking his medication it would immediately leave his body either by regurgitating it or having extreme diarrhea. His doctors informed him he had no immediate options.
I knew his story as I was once resistant to my own medication and flew solo. None of the drug classes would help me. It was a scary time as it seemed I was on my own. Each month my t-cells were dropping lower and my anxiety was rising higher. What's worse, it was during the flu and cold season when it seemed everyone around me was sneezing or coughing. So it was a careful navigation of avoiding any contagious environments. Not an easy task living in New York City. it was a reminder that HIV doesn't kill but the opportunist infections one gets. So in my case, a simple bug which which before my body could fight, now had no protection.
My resistance came from not adhering to my medication. I took the pills for granted and somehow convinced myself they were only a crutch I could use when needed. So I knew my story, but I didn't want to make the same assumption about Tony. I figured there had to be some option. Alternatives such as participating in studies of upcoming HIV trial medications. This was my life-saver as I was introduced to a study which eventually was approved. A study which opened the door for new medication to help.
Sadly he let me know it didn't matter. He then said two words I sometimes said to myself but never uttered out loud.
Read the rest of the story here.