Compassion is what can defeat pandemics
As a 24-year-old medical student in 1981, I could not have known that a global pandemic would define my identity and life’s work.
It has been 40 years since a medical publication described five previously healthy gay men with unusual infections indicating severe immune system dysfunction. By the end of that first year, 337 cases of severe immune deficiency had been described in the U.S., including 16 children, and 130 individuals already had died. The following year, the condition became known as acquired immune deficiency syndrome , shown subsequently to be caused by a novel retrovirus, the human immunodeficiency virus.
HIV/AIDS would fundamentally challenge and change society and health care in ways none of us could have imagined. Intolerance of behaviors and lifestyles considered unusual or abnormal, stigma and discrimination, and victim shaming and blaming spread as quickly as the virus itself, impeding the early response to the pandemic, multiplying the misery of the disease, and costing millions of additional lives worldwide.
Ultimately, science would prevail in the form of effective strategies for HIV/ AIDS testing, prevention and treatment of complicating infections and cancers, prevention of mother-to-child transmission and highly active antiretroviral therapy.
The perception of HIV/AIDS would change from that of an invariably fatal disease to one that is chronically manageable, like diabetes or hypertension, but not before an incredible toll was paid in the form of the lives of 36 million men, women and children, including more than 700,000 Americans.
I had been in my first faculty position as a pediatrics and infectious diseases specialist in St. Louis for no more than a couple of months when the department chair called to ask if I would help with the care of 15 hemophiliac boys with HIV/AIDS. Antiretroviral therapy was still a distant dream and a diagnosis of HIV/ AIDS was tantamount to a death sentence. I thought about saying no, but I wanted to be a good citizen of my new department and thought it was an opportunity to learn.
To my surprise, I loved working with the boys and their families. The fact that so few pediatricians or infectious disease specialists wanted to care for children with HIV/AIDS just intensified its appeal to me.
When Dr. Ralph Feigin, the chair of pediatrics at Baylor College of Medicine, called me in 1990 to ask if I would consider moving to Houston to organize the care of about 75 HIV-infected children at Texas Children’s Hospital, the decision was an easy one. I was going to be a full-time HIV/AIDS clinician and researcher.
I attended 25 funerals in 1995 alone. Then came a remarkable turnaround. Highly active antiretroviral therapy changed the face of HIV/AIDS in the U.S. forever. I was proud of the role our team played in advancing the treatment of HIV-infected children and thought that would continue to be the focus of my career.
Meeting a visiting Romanian Parliament member in Houston dramatically altered that plan. He invited me to visit his country with a delegation from Texas Children’s Hospital. I made that trip in February 1996 and was stunned by what I saw and experienced. Hundreds of HIV-infected children were being warehoused in public orphanages and hospitals, waiting to die, without access to antiretroviral treatments. I had never felt such an overwhelming sense of helplessness and hopelessness.
I flew home to Houston at the end of that two-week visit to Romania not knowing what I possibly could do to help, but I knew my conscience would not allow me to do nothing. With small grants from several foundations, our program in Romania began modestly, training nurses and doctors, enhancing good nutrition and administering antibiotics to prevent opportunistic infections. Ultimately, with a track record of success and the more substantial funding that followed, we were able to build and open a children’s HIV/AIDS care and treatment center in Constanta, Romania, in 2001. We began more than 400 children in that center on highly active antiretroviral therapy; at the time, the largest number of children on such treatment in any center worldwide. Children were living instead of dying.
Over the ensuing years, we built a network of children’s centers across sub-Saharan Africa that ultimately would provide treatment to thousands of HIVinfected children and their family members. Together with many other organizations and with generous funding from the U.S government, we had turned a corner in the fight against HIV/AIDS in Africa.
A medical career in HIV/AIDS introduced me to people and took me places I never imagined. I have witnessed almost unfathomable sadness, tragedy, resilience and perseverance. In the beginning, the global community was almost paralyzed by the magnitude of the HIV/ AIDS pandemic, but every challenge is an opportunity and the magnitude of one always correlates with the magnitude of the other.
I see many parallels between the last great pandemic and the current COVID-19 pandemic. I see it in the irrational fear the diseases sometimes have engendered, but I also see it in the courage and dedication of the scientists and health professionals. I see it in denialism around straightforward public health recommendations and necessary behavioral change, but I also see it in gradual public acceptance of a “new normal.” I see it in judgmentalism directed toward those whose behavior doesn’t measure up to some arbitrary standard, but I also see it in the compassion extended to those suffering from the disease. Pitting one group against another didn’t help in defeating HIV/AIDS, and it won’t help in the fight against COVID-19.
Tragedies of the scope and scale of HIV/AIDS and COVID-19 bring out both the best and worst of humanity. I deal with the pain of the losses by choosing to focus on the former rather than the latter. Forty years on, I carry with me every day a piece of every patient, every child, every family I have ever treated.