It was news that I had long dreaded, and it devastated me — Carlton Haywood Jr, the first African American graduate of a doctoral program in bioethics and a faculty member at Johns Hopkins had died, after a long battle with sickle cell disease. His death occurred on December 31, 2021, at Johns Hopkins Hospital and he was only forty-five years old. Carlton was my former mentee who had become a colleague, a friend, and ultimately my teacher and mentor. Throughout the years, I watched with pride as he grew from a fledgling graduate student into an accomplished researcher, educator, and champion for health equity, especially for those living with sickle cell disease. I also watched with worry as I saw him suffer from the complications of his disease. He once told me that pain was his constant companion. When he was in the midst of a sickle cell crisis, he said that it felt like a “rainstorm of daggers.” Carlton was brilliant, passionate, brave, tenacious – and one of the kindest, generous, empathetic, and selfless people I have ever met.
Carlton first became interested in bioethics when he was an undergraduate at the University of Virginia. He quickly came to see the field as inextricably linked to health equity. Indeed, his first publication, “Call for Parity: Improving the Health Status of Minority Americans,” appeared in a 1999 newsletter of the University’s Center for Biomedical Ethics. After graduating, he worked as an intern at the Johns Hopkins Berman Institute of Bioethics. In 2003, he obtained a Master of Arts degree in bioethics from Virginia, having completed a thesis that analyzed the role of racial categories in biomedical research. That same year, he enrolled in the doctoral program in Health Policy and Management, concentrating in bioethics and health policy, at The Johns Hopkins Bloomberg School of Public Health. With his doctoral studies, he embarked on an eighteen-year academic affiliation with Hopkins. At the time of his death, he was on medical leave from faculty positions in the Berman Institute, the Division of Hematology at the Johns Hopkins School of Medicine, and at the Welch Center for Prevention, Epidemiology, and Clinical Research.
I too arrived at Hopkins in 2003. Almost immediately members of the bioethics faculty insisted in highly complimentary, and almost reverential tones that I meet Carlton. I remember thinking, “Who is this brother, who already as a graduate student had such a stellar reputation?” One day, this tall, lanky young Black man with an easy smile showed up at my office. I would soon learn that Carlton was wise and knowledgeable beyond his year. During my time at Hopkins, Carlton frequently visited me for many wide-ranging conversations — memories that I now cherish. We discussed the dearth of African Americans in bioethics and the field’s lack of attention to racism. We debated bioethical issues. While not always in agreement with me, Carlton’s gentle nature extended to his critiques of my positions, listening intently and offering a pensive pause, punctuated with, “interesting.” He confided in me about his burdens of being the first Black graduate student in the doctoral program and his fears about an upcoming test. (“I was a religion major at Virginia – now I have to sweat biostats!”) He schooled me on his experiences as a person living with sickle cell disease. He talked about how much he loved his family and how blessed he was to have their support. He revealed that he had a weakness for Kool-Aid (“not red”) and lemonade (pink) both with lots of sugar. Over the years, some of the details of our conversations have faded, but what remains vivid in my memory is shared, riotous laughter. Carlton had a great sense of humor and loved to laugh.
When I became the Director of the Tuskegee University National Center for Bioethics in Research and Health Care, I hired Carlton as a consultant. Although he was still a graduate student, I had come to see him as a junior colleague whose knowledge, advice, and insights I valued. He assisted me with the organization of the conference, “Creating a Black Agenda in Bioethics,” held at Tuskegee in July 2005. He also wrote two concept papers on race and bioethics in which he passionately urged that bioethics address issues of racism and injustice to ensure that African American perspectives and experiences not be relegated to the margins. Almost twenty years ago, in one of these papers, he boldly stated, “Good bioethics in the U.S. should be a bioethics of race,” which he defined as a “conscious and systematic ethical reflection upon the role of race as an instrument of oppression in society. The goal of this effort should be the alleviation of racial injustice and oppression as they pertain to health.” Several months before his death, at a time when he was feeling better and optimistic about returning to research, we discussed collaborating on a revision of this paper. Carlton told me that the revision would be entitled, “A Bioethics of Racism” – a renewed effort to compel the field of bioethics toward confronting racism. Unfortunately, our collaboration would never transpire.
Carlton made an indelible mark on health equity and bioethics, primarily for his research and activism on sickle cell disease and demonstrated that rigorous research and vigorous activism are not necessarily antithetical. He wrote peer-reviewed publications, received grants, and gave academic presentations, but he also worked with organizations such the Sickle Cell Disease Foundation of America, made presentations to community organizations, and testified before Congress. He was especially proud to have been named in 2014 to the Ebony Magazine Power 100 List for his contributions to the Black community. Despite all his bold and pioneering accomplishments, Carlton remained humble. He once wrote, “ I always chuckle when I hear anecdotes about me and/or my work…It still boggles my mind at times to think that people out there are actually listening to/reading ME??!!”
What I will remember most about Carlton was his thoughtful, caring, generous friendship that evoked the familiarity and warmth of a familial bond. As his health declined, text messages substituted for in-person visits and telephone calls. If my messages to him went unanswered, I knew that he was probably hospitalized. Still, he always managed to send Thanksgiving and birthday greetings. In his text messages, he praised his mother’s efforts to help him, celebrated the birth of a new niece, or acknowledged the accomplishments of a junior colleague. But behind the cheery façade of these texts, I could tell that he wished to protect me from knowing the full extent of his suffering. When he told me that he needed a liver transplant, he began his message to me with, “So…I’ve been trying to determine the right time to tell you this.”
In the past two years, issues of race and racism have garnered greater attention from bioethicists, propelled by greater societal reckoning with systemic injustice. However, this has not always been the case. Carlton sometimes felt discouraged from analyzing these topics, but he persisted. In one of our last exchanges, we discussed the more welcoming atmosphere for a mission that was so dear to him. He wrote, “I’ve been thinking to myself, ‘Oh…NOW you see the connection…’ lol.” Yes, Carlton and thank you for helping to show us the way. We will continue the work, my friend.
Dr. Haywood’s obituary can be found here: https://www.bosticktompkinsinc.com/obituary/DrCarlton-HaywoodJr
Vanessa Northington Gamble, MD, PhD is a University Professor of Medicine and Medical Humanities at The George Washington University.