From AIDS to COVID-19: Advice from a Long-Time AIDS Survivor About Surviving the Latest Killer Pandemic
from blu sunne: Notes from a Pop-Up Life in the Arts, a blog by Lester Strong
In this blu sunne blog entry, I’m doing something new: in words not my own, presenting a powerful commentary by someone who experienced the ravages of living with AIDS in his own body through the early years of that pandemic, and thanks to the effective medicines introduced in the mid-1990s managed to survive into the current COVID-19 years. He has some important advice to offer, and he offers it in eloquent prose.
I know Brian Heike through gay square dancing. As he notes below, he lived in southern New Jersey at the time of his diagnosis with AIDS. These days he’s located in the panhandle of Florida, still square dances, is involved with his long-term partner Doug Landreth, and is very much involved with the world around him both as a political activist and gay activist.
From a Brian Heike Facebook post dated July 8, 2020 (used with permission):
Going through some old file folders, I ran across some old bloodwork labs from 1995. The past jumped off the page at me and stirred up memories of a time when my life was on the line, back when those results every three months (or less) filled me with dread. One particular report stood out. My t-cells. This report had my second-lowest t-cell count. 80. A couple of years earlier when I was battling cryptosporidium (an intestinal parasite found in drinking water) and my life was hanging by a thread, I was down to 60 helper t-cells. When I was diagnosed with cryptosporidium, my doctor told me that with my low t-cell count I would never recover from the parasitic infection. My weight was down to 130 pounds. I looked like a stiff breeze would blow me away. I asked him what the treatment was for people with more robust immune systems, and I asked how much that treatment cost. He told me that the treatment was a round of Humatin and Flagyl, which would run around $250. I told him that I’d spend that much in a gamble for my life. Miraculously, the regimen worked, and the crypto did not kill me.
My t-cells remained under 150 for somewhere between three and five years. I was diagnosed with AIDS. I went on disability, declared bankruptcy (those papers were also in these files), turned in my leased Subaru, and prepared myself for death. I would not go without a fight, however. I went to support groups. I volunteered for the AIDS Coalition of Southern New Jersey, a local AIDS service organization. I got on the board of the South Jersey Council on AIDS. I became a Commissioner with the Philadelphia EMA HIV Commission. I attended AIDSWatch and CARE Days on Capitol Hill in Washington, DC, lobbying (educating) senators and congressmen (and women) about the disease and fighting for continued Ryan White funding for pharmaceuticals and programs to help people living with AIDS. I lost many friends. Many of them were far braver than I. Many of them were far more effective fighting for the needs of people with AIDS. For some reason I survived. I am one of the lucky ones who made it into the age of protease inhibitors and the cocktail of drugs that finally beat that virus into submission. Newer drugs are keeping me healthy and alive now.
I think of my experiences over the last 34 years of being HIV+, and then I think about the situation the world finds itself in now with the coronavirus. There is a difference. Back in the 1980s and early1990s, AIDS was a death sentence and there were no survivors. It was universally fatal. Covid-19 is not. HIV is only spread by body fluids and requires intimate sexual contact to become infectious (or blood transfusions or sharing needles). Covid-19 spreads far more easily and can kill far more quickly. The fatality rate is low, but over time those numbers add up. There were over 130,000 deaths in this country from Covid-19 in the first four and a half months of the pandemic. And after a few weeks where cases seemed to be dropping, the virus today is exploding again.
I refuse to allow this virus to take me down after having fought so hard to survive AIDS. Of course, there is only so much I can do to prevent myself from becoming infected. I also have my partner Doug’s life to consider. Can you imagine what a blessing it would have been had a face mask been all that was needed to prevent the spread of AIDS? We would have JUMPED at that. Easy peasy. So WHY are people balking at doing something so simple and easy that can save lives? Our president and his administration are playing a dangerous game with people’s lives. They have minimized the impact of the pandemic and fought the idea of face masks for far too long. We went from Trump saying it would end after five to fifteen cases to seeing over four million Americans infected at this point in time. Numbers in the southern US, coast to coast, are skyrocketing.
So, I beg people to take precautions and to wear masks. Keep the recommended six feet away from other people. Don’t be complacent. You don’t want to sicken and die, and you don’t want friends or relatives to succumb to this disease. BE SURVIVORS. Take this advice from a survivor of another plague that killed millions.
Lester Strong is Special Projects Editor for A&U, with a twenty-year history of writing about HIV/AIDS among many other topics and issues.These short articles, mostly related to the disease, are reprinted from his blog blu sunne: Notes from a Pop-Up Life in the Arts. For more of his writing on a variety of topics, visit his blog at blusunne.com.