Me and My Pandemics
Dear Reader,
I received this reflective essay last night from Dr. Michael Saag, a preeminent scientist and physician based at the University of Alabama in Birmingham. Dr. Saag has been my personal hero, guided me through decades of medical challenge. He is my beloved cousin “Mike,” a most remarkable gift to all of us.
Enjoy with me Mike’s wisdom.
Mary
Thinking about two Pandemics on this World AIDS Day
The similarities between COVID-19 and the AIDS pandemics are striking. Each came to us unexpectedly, with tremendous disruptive force, and challenged us in ways we could not have imagined. Both pandemics threaten the survival of those who get in their path. And each tap into the most impactful human emotion: Fear.
I vicariously experienced the fear generated by HIV infection through the patients I provided care for in the 1980s. We had few therapeutic options to offer. I stared at the haunting desperation in my patient’s eyes with each passing clinic visit as they fell deeper and deeper into the clinical abyss. I vividly remember one father whose son was dying. He pulled me aside, holding out a wad of cash in his hand saying, “I am a rich man, Dr. Saag. I will pay you whatever it takes to save my son’s life.” After a moment, I said something like “thank you…finding a cure for your son is worth more to me than any amount of money you or anyone can offer. I’m sorry to say I’ve done all for him we know to do.” That father’s desperation underscored the horror of what AIDS represented at the time: a death sentence from which there was no reprieve. Every patient was on death row, watching close friends who shared the cell with them die miserable deaths, all the while waiting for their time to come.
COVID-19 is not a near-universal death sentence. But the fear of the unknown, not knowing what the next hour or minute will bring, parallels the AIDS experience. I know. Because I lived through COVID and, this time, not vicariously.
In early March (2020) the epidemic was beginning to explode, especially in key coastal states including New York. I become infected on a road trip from Manhattan to Birmingham, Alabama, with my son, Harry, who is a part-time hospitalist at NYU. We wiped down surfaces assiduously but did not wear masks during the 20 hour car ride. He developed symptoms as we pulled into our driveway at the end of the trip; I became ill the following evening. Harry cleared his infection within 4 days. I was not so fortunate.
I experienced only mild symptoms through the first several days of illness, then all hell broke loose. On the evening of day 6, I experienced chills, fever, body aches, a wicked headache, cough, shortness of breath, and “fuzzy thinking.” My oxygen saturation levels dropped to the low 90s. I was terrified of what the next hour would bring: a trip to the hospital, supplemental oxygen, and, the most dreaded fear, placement on a ventilator.
Fortunately my oxygenation never dropped below 90% that night and I felt better in the morning. I thought I had beaten the disease. But I was not so fortunate. By early evening on day 7, the same symptoms returned leading to another harrowing night. This pattern repeated itself like Groundhog’s Day for the next 7 days until the symptoms finally dissipated for good on Day 14.
The fear of not knowing what was coming next was harrowing and is something I never want to experience again. I shivered recalling my HIV patients going through the exact same feelings. We had no way to predict what would happen in the coming weeks and we had nothing to offer other than symptomatic care, and love. It was the same for me and countless other COVID-19 patients in the early days: We were sick and there was no treatment.
Enter hydoxychloroquine. On day 3 of my illness a study was “published” on line via youtube by Didier Raoult which demonstrated “a rapid and effective speeding up of their healing process, and a sharp decrease in the amount of time they remained contagious” by hydroxychloroquine. I first heard about these data on day 8 of my illness, two days into my Groundhog Day nightmare. After consulting with colleagues around the world, I decided to start hydroxychloroquine (later adding azithromycin) out of an abundance of fear. This is the same fear that drove my patients in the 1980s to seek treatments like Suramin, AL-72I, hyperthermia, and Compound Q. Any person diagnosed with a potentially fatal disorder for which there is no treatment knows this not-so-quiet desperation all too well.
And, as with AIDS, the COVID-19 pandemic became mired in politics. Soon after the “report heard round the world,” President Trump, “speaking on gut instinct,” touted the drug as a cure, generating an avalanche of enthusiasm for an untested treatment. Later well conducted trials later showed that hydroxychloroquine had no meaningful benefit and, in a twist of irony, the President himself did not insist on receiving nor did he receive this drug when he became ill with COVID-19.
The ramifications of the President’s declaration of cure still echo on social media. I published an Editorial in JAMA last month denouncing the mixing of politics and science based on the hydroxychloroquine study. As expected, I was “trolled” extensively on social media by those who support the president claiming that my positions were political in nature. And this brings up the biggest difference between now and then, between COVID and HIV: There was no social media then. There was no cesspool of unsubstantiated “facts” swirling around as truth, furthering the anguish among those who suffer. We may suffer differently than we did with AIDS, but both pandemics cause nuclear levels of suffering.
On a triumphant note, both epidemics were rescued by science. People with HIV now can live near-normal lifespans owing to the development of novel medications. Similarly, COVID patients are benefiting from the emergence of new powerful drugs, such as monoclonal antibodies and remdesivir, and an old workhorse drug, dexamethasone, all of which save lives. It took over a decade-and-a-half for effective drugs to emerge for HIV patients; the drugs for COVID have emerged in less than 10 months. And, of course, the COVID epidemic now has what the AIDS community has sought for over 3 decades: The promise of a vaccine that can realistically end the epidemic.
Lives will be saved in the COVID pandemic because of what we learned as lives were lost to HIV. The COVID treatments, and soon the much-heralded vaccines, were developed on the scientific platform built in the 1980s, 1990s and this century from the HIV research experience. And for that, I am extremely grateful on this World AIDS Day, 2020.
