I remember the last time you called me. It was 1999 or 2000. Your T-cell count had fallen to a dangerously low level and your doctor had again suggested that you take medication that could possibly keep you from developing full-blown AIDS. Several promising options had been tested and proven to be effective at controlling the replication and spread of the virus once it was inside an HIV+ person. You were aware one of several Highly Active Antiretroviral Treatment (HAART) regimens, combinations of medications commonly referred to as “drug cocktails,” could slow or stop HIV from overwhelming your immune system, but you were also concerned that since you’d lived so long without taking medications that the sudden about-face might do more harm than good. Was one right for you?
We met. You asked about my experience with HIV medications. I shared my medical history with various treatments, such as AZT, an early protease inhibitor Norvir, and several combination therapies my doctor had prescribed since 1996. While AZT had proved worthless, at best, the others had increased my T-cell count and nearly stopped “my viral load” to a clinically undetectable level. I could only suggest the same process I’d used: be your own best advocate, research all the available medical and alternative treatments, and make well-informed treatment decisions. We both knew that no one could say if a HAART that worked for me or another person living with AIDS (PLA) would work for you, or for how long. You left our meeting undecided, but later I learned that you’d started a HAART; that it seemed to have shocked your system and inadvertently accelerated your demise.
Did you ask, “What I miss?” Lemme tell ya.
First and foremost, because the last thing we discussed was HIV/AIDS, I’m sorry that the HAART you tried was fatal. However, it may console you to know that some NYC gay men who were infected with HIV in the early to mid-1980s continue to thrive today. Some are rare “non- or slow-progressors” whose ability to cope with HIV invasion and/or seeming immunity provides hope: If medical science can isolate the cause of their survival, they could find a cure or, at least, an inoculation. Most of us long-term survivors benefit from treatments that didn’t exist when you died in early 2001.
The current state-of-the-art anti-HIV medical treatment is a once daily, fixed-dose, multiple-drug, single pill HAART! One pill containing 24-hour doses of four anti-HIV medications effectively stops HIV replication, thereby extending the lives of people living with AIDS (PLAs) for years. In addition, the single-pill formulation means PLAs don’t have to leave home with a backpack full of anti-HIV meds. My doctors prescribed a single pill HAART in 2014 after a decade of taking multiple pills at different intervals throughout each day. My viral load was already clinically undetectable, which means no disease progression, and the single-pill kept the viral presence in my blood so low that labs couldn’t find it. I had expected the convenient one-pill HAART to keep my viral load down. I also got an immediate and unexpected benefit. Taking the four-drugs-in-one pill once daily in the morning reduced my PLA depression and fear, and gave me hope. I rarely curse my medicine cabinet anymore because the single-pill relief continues to this day. I wish you could have experienced this feeling. I miss you and hate the fact that modern medicine didn’t advance quickly enough in the right directions to extend your life.
I’m sure you’ll want to know what children and “the children” are doing these days because that would make you a more effective teacher and community organizer. Here’s an example. The other night I binge-watched a season of a new release on Netflix. That sentence meant nothing during your lifetime when the only seasons you could watch in one sitting were reruns on tape or DVD. Today people take the existence of Internet broadcasters like Netflix for granted. People expect constant access at home and on the go, and subscribe for access to Internet entertainment and sports. A viewer can watch all the episodes of a new season in a single day. That’s “binge-watching.” It’s only one example of the high tech activity made possible by several digital advances, such as, smartphones – 5-ounce hand-held computerized communication devices, high-speed Internet service, wireless private networks, and high-speed mobile phone connectivity. Internet service is now available to Wi-Fi devices on every continent at every socio-economic level.
These developments have accelerated the dissemination of non-conventional points of view across the world and have had a direct impact on Other Countries, Black Gay Expression. Our NYC creative collaborative established by and for Black gay men in 1987 to tell our stories celebrated 30 years in 2017, but our membership has dwindled steadily due to AIDS deaths, member relocation and a wide-spread changing sense of urgency for Black gay men to gather and support each other. We failed to attract significant numbers of younger Black same gender loving writers to our group and could no longer afford the rent at The Center. However, several of us wanted to continue meeting, to critique, to use our shared interest in creative expression from our many Black LGBTQI+ points of view and to sustain each other. Thanks to widespread cheap or free video-conferencing portals, Other Countries moved its workshop to the World Wide Web in January 2014.
I wish you were here. It would be great to see your headshot on my laptop screen beside the others on our Other Countries Virtual Workshop. I’d like to read your new work, hear your critiques and share some shade and more laughs with you. Moreover, I want your voice back in the struggle for equality for People of Color and LGBTQI+ Rights in the U.S.A., and the world.
With Love, Respect and Acceptance,
© Robert E. Penn 2019