In these scary times, many of us find comfort in watching Dr. Anthony Fauci on TV. I like seeing Dr. Fauci for another reason: he rekindles memories of my mom, who died in 1990.
Dr. Fauci was my mother’s doctor. For five years in the 1980s, she was a patient at the National Institute of Allergy and Infectious Diseases (NIAID), which he directs.
Like many people today, my mom had a strange and frightening disease. At first, we thought it might be pneumonia: she had a fever, cough, and fatigue. Then her eyes became red and swollen, her nose caved in, and she lost her hearing. She had bruises on her hands. Her lungs filled with fluid and she couldn’t breathe. For more than a year, my mother shuffled from specialist to specialist, receiving one diagnosis after another. At one point, an ambitious young medical resident leafed through The Merck Manual, the classic medical reference book, and informed my mom proudly: “Your symptoms might be Wegener’s Granulomatosis. If that’s what you have, you’re a goner.”
Happily, the resident’s medical knowledge was as out-of-date as his bedside manner. My mother did have Wegener’s, but Dr. Fauci and his colleagues at the National Institutes of Health had developed an effective treatment. A disease that once killed 90% of patients within two years now had a 90% rate of remission. (Today, Wegener’s is called Granulomatosis with Polyangiitis, or GPA, because Wegener was a Nazi.)
My mom became a patient at NIAID about the same time Dr. Fauci became its head. The year was 1984 and the AIDS epidemic was raging. Wegener’s and AIDS are both diseases of the immune system, so the two sets of patients shared a floor. My mother’s first stay at NIAID lasted three months; every day, the nursing staff got the patients out of bed, and they spent many hours talking in the patient lounge. My mom listened to young gay men talk longingly about the lives they used to lead, suppressing their fears with laughter. They all died.
Outside the hospital, Dr. Fauci confronted AIDS activists’ growing anger and alarm at the sluggish federal response to the public health emergency. President Reagan was slow to grasp the magnitude of the crisis, and as the death toll mounted, many activists saw Dr. Fauci as the public face of an uncaring and inept federal bureaucracy. They protested the slow pace of HIV/AIDS research and drug trials and held mass demonstrations at the hospital’s front door. I would walk through these demonstrations when I visited my mom. Dr. Fauci ultimately listened to the protesters and worked with AIDS activists to change the way medical research is conducted.
Inside the hospital, Dr. Fauci oversaw a medical system that was, for the 1980s, uncommonly patient-centered and kind. Although he was already an acclaimed researcher and administrator, Dr. Fauci continued to see patients. His clinical rounds were a highlight of my mother’s time at NIAID. Dr. Fauci and his team talked about my mother’s condition with her, not over her, using the same straight talk we see him using now on TV.
Being a patient at the National Institutes of Health also benefited my mother in another way: she had excellent medical care she did not have to pay for. In the early years of my mother’s illness, her husband asked for a divorce. The end of a marriage is stressful in the best of circumstances. But for many middle-class women of my mother’s generation, getting divorced meant losing the health insurance they had through their husbands’ employers—and being unable to purchase new coverage because of a pre-existing condition. Luckily for me and my mom, where the insurance company saw a pre-existing condition, Dr. Fauci saw an interesting disease.
Dr. Fauci has talked about the gratification he feels when patients with fatal diseases can leave the hospital and return to their lives. My mother’s treatment at NIAID gave her five years of remission she would not otherwise have had. In those five years, she resumed her social work career. She watched me get married. She became a grandmother. And she gathered up her courage to testify at a New York State public hearing about displaced homemakers losing their health insurance—and being denied new coverage because of a pre-existing condition.
My mother died at NIAID in 1990, after being on a ventilator for two weeks. The nursing staff helped us understand when she was ready to go, and she had a death with dignity surrounded by people she loved. In that sad moment, I am not sure I remembered to thank Dr. Fauci and the hospital staff for the scientific research and government-funded medical care that extended her life for those precious years.
Let me say it now. Thank you, Dr. Fauci. Stay safe.
What a beautiful memory of a hard time
This is a wonderful story about a wonderful Doctor Who should be and probably is a model for trainees, whether they are going into research or clinical work.
Thank you for sharing your story. Dr. Fauci is a rare treasure. So inspirational and upright. What a shame that some people are baying for his blood.
I was a Wegener’s patient in the 90s and have always remembered Dr. Fauci as a hero to our small disease community. Though I never knew your mother’s name in the same way, I have no doubt that she contributed to the medical knowledge that doctors have used to save the lives of so many other Wegener’s patients in the years since the 80s. Thank you for sharing this memory!
Molly this really made me weep. Thank you for this beautiful and thoughtful essay about your mother and what decent care can look like. Much love.
Molly, thank you for sharing this story about you mom, you and Dr. Fauci.
Reading your story, it felt as if I was present and watching. During those years on the specialist merry-go-round, your mom must have felt so hopeless and disheartened. But she was brave and didn’t give up. Neither did Dr. Fauci. Thank you!
Molly, this is a beautiful and very moving essay. Thank you so much for sharing your story.
Molly, wonderful essay. Very special.
Informative and deeply touching. Thank you for sharing this personal story Molly. Your mother was courageous and very loving, as are you.
Molly, thanks for sharing this wonderful story about your mom and Dr. Fauci.
Thanks Molly! This is a lovely timely piece!
My mother may have known your mother as she was among the nurses who worked with Dr Fauci at NIH. As Dr Fauci has said about HIV/AIDS in those days (almost) everyone at NIH died, though often their deaths were significantly delayed due to treatment. Those were dark days. My mother used to come home from work in emotional turmoil as another of “her boys” died, often still estranged from families who could not accept them. Over a career at NIH, first in pediatric oncology, then with HIV/AIDS patients & others, it took a heavy toll on my mom. That Dr. Fauci is still going strong and is such an effective advocate for science/medicine that remembers the humanity of patients and sees their suffering is remarkable. He was one of my mom’s heroes then and is one of mine now.
A terribly moving account, Molly. I remember listening, appalled, to you talk in the early eighties about the injustice of your mother’s health insurance battle. A signal story then (and alas now). And here you’ve given us another for this awful moment. Most commentary on Dr. Fauci portrays him as a man of science and cold, hard fact. But as you make abundantly clear, he also stands out at administration briefings as a voice of humane feeling. Godspeed to Dr. Fauci. And to you.
Thank you, Molly, for sharing your mother’s story, which pulls together history, compassion, structural injustice, science, professionalism, expertise, and activism. It’s a beautiful essay, and a call to arms, to defend Dr. Fauci and all the things he is standing for.
I am glad for the support people have for Dr. Fauci. I am however unhappy about changing the name of Wegener’s. I know that Dr. Wegener was a communist this disease was discovered by him and should remain named after him.