In San Francisco, there’s a church at the top of California Street called the Grace Cathedral. In this big, soaring nave, there is a quiet little chapel in the back corner on the right. It’s a silent little haven, always lit with candles and a piece of quilt hanging. There are leather-bound books with tens of thousands of names recorded. This is the site of the first AIDS chapel in the country. And, despite what it represents — suffering and pain and discrimination — there is an incredible peace to be found here. In this place, the efforts that made this revolution possible are honored as they should be for halting this virus in its tracks. Their heroism and their pain must never be taken for granted, and their sacrifice needs to be heeded so we do not repeat a devastating history.
For me, the AIDs epidemic would change my professional course in life. Often, we wonder exactly what made us choose our particular path in our life journey. At an early age, I knew I wanted to be a doctor but really had no plan on how that would come to reality. Luckily, I made it into medical school, and during my fourth year, I met a young man named Ryan White. He was dying of AIDS encountered in a blood transfusion, and I was assigned to the infectious disease rotation. I was captivated as I watched the doctor who would become my mentor care for him. I’m not sure if that was the trigger, but after that I wanted to become a pediatric ID doctor with all my heart. That resulted in my switching into the ID rotation as a resident every chance I got and, a few years later, returning to my alma mater to set up an integrated HIV/AIDS program. I thought I would do it for six months and then move on, but that was not to be. The next decade saw full-force what science and medicine and social supports could do to change the face of an epidemic.
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Since HIV appeared on the scene, there has been an unbelievable revolution in care that has taken the diagnosis from a terminal to chronic disease in almost record time in medicine. The sheer amount of discovery through research has been unparalleled. In less than 25 years, an entirely new arsenal of understanding developed, both scientifically and culturally. In my early HIV practice, there was one medication we could use in children. We had little to no information on how it was working, everyone was dying in severe agony and writing morphine drips was my most common activity. I made house calls to those too sick to come to the clinic. Every time there was a new referral and the diagnosis was HIV, both the mom and baby were infected. It hurt my heart each time, as there was no chance for long-term survival in those early days.
But due to the brilliance of some and the courage of many, the entire face of the AIDS epidemic was turned around. Research brought us more and better drugs. The idea of the “drug cocktail” and attacking the virus from all sides allowed us to impact what was previously untreatable. New lab tests let us monitor disease progress and even “type” the virus, letting us use drug combinations that targeted each individual’s virus specifically. Our number of patients in the hospitals dying of AIDS dwindled. We were at least catching up and keeping pace with the epidemic.
With each step forward, a new challenge arose. Spread through the blood supply prompted strong debate over the testing of donor blood and privacy issues around those results. And, due to the fear and discrimination that accompanied the public reports around the disease, people hid their test results for fear of bullying or worse. A new era of private and protected health information was ushered in on the coattails of an epidemic that would forever change how we manage health care communication.
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Still, issues grew up like weeds. But as with all remarkable sagas, in the midst of suffering, heroes rose up and, in their own massively important ways, took up the sword and began to fight. Marches of thousands of people occurred across the country demanding that our nation pay attention to an epidemic the likes we had not seen in decades. People protested the many factors that were contributing to continued spread: slow drug development, lack of public information and education, and a silent government. Scientists worked feverishly across the world to understand the virus and unravel its genetics to come up with new ways to combat it. The Food and Drug Administration — with protesters literally chained to their gates — began to accelerate drug testing and approval so we could get new medications to people to give them a chance at survival. The federal government, under consistent pressure from advocates, finally took up the mantle, and some serious action was put into prevention, testing and treatment. Prevention of mother-to-baby transmission was touted across the land. The Ryan White Care Act would be ratified as landmark legislation, allowing financial support for drugs and care for the infected. It continues to be the major support for more than half of those infected. The influence of one teenager who just wanted to go to school like all other kids continues to impact the disease that took his life nearly three decades ago.
People are now living with HIV rather than dying from AIDS. In so many ways, we have come so far and I, as a provider, have been mesmerized watching the evolution and then control of the scourge. Unfortunately, eradication has not yet been achieved, and new infections continue to appear. With the opioid crisis in full bloom, new infections from IV drug use and needle sharing have increased in the past five years, resulting in a huge outbreak in the Midwest. It raises the question: Are we taking our eye off the ball, or is the game plan requiring adjustments?
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Dec. 1 is World AIDS Day. It is a time of remembrance and honor for those who gave themselves in the battle of the taming of the scourge. I will sit and remember those I have treated, and honor them for the lessons we learned to help those who would come after. Their names are emblazoned on my heart. I will know that their bravery changed the world by teaching tolerance and advocacy. I will be grateful knowing that I am the doctor I am for having been in ID during this time. I will envision the AIDS quilt, with each panel a memory of someone, and a blanket of love so large it can never be assembled in one place on earth. I will pledge to serve my fellow man with no fear or discrimination. I will close my eyes and be back in that chapel, so I can ensure I will never forget the sacrifices and dedication of all who signed on to treat suffering with compassion and hope. And because of this, I, like the rest of the world, will never be the same.
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How the AIDS Epidemic Changed One Doctor’s Life originally appeared on usnews.com
