Red blood cells comprise up to 40% of blood in the body, and carry the oxygen needed for human life to exist. Sickle cell disease is a genetic disorder that affects the shape of those red blood cells and how they function. Whereas normal red blood cells are round and are flexible as they travel through the tiny vessels in the body, the red blood cells present in people with sickle cell disease can be crescent or sickle shaped, which do not bend easily. This makes it harder for the cells to move around the body, which can lead to blood flow blockage and chronic pain. The cells only live about 15% as long as normal cells live, creating a shortage of oxygen in the body which can cause fatigue. The abnormality can lead to damaged organs including the lungs, infections, ulcers, strokes, hypertension, blindness, and bone and joint problems.
Millions of people around the world have sickle cell disease, which occurs when children are born to parents who both carry the gene which causes cells to mutate. According to the National Institutes of Health (NIH), 90% of people with the disease in the United States are of African ancestry, and one of every 365 Black babies are born with the disease.
Before the 1970s, federal interest in the disease was minimal at best. Alumnus Roland Boyd Scott, M.D. who was chairman of the Department of Pediatrics at Howard University for almost a quarter of a century, became increasingly concerned about the condition of children coming to the emergency room at Freedman’s Hospital with related symptoms. The lack of research on the topic led Scott to start his own at Howard, garnering funding by multiple means, including grassroots efforts such as radio appeals. In June 1948, Scott published “Incidence of Sicklemia in the Newborn Negro Infant,” in conjunction with fellow Freedman’s pediatricians Robert Crawford, M.D., also a Howard alumnus, and Melvin Jenkins, M.D. In the first known study which specified the timing of disease detection after birth, the trio studied more than 250 Black infants at Freedman’s and detailed the importance of and methodology for early detection. Their study and paper led to the routine newborn screenings which continue today. Scott wrote more than 300 scientific articles on medical topics, including those which called attention to the importance of sickle cell treatments. He also showed that the disease affected others from a variety of races, dispelling notions that it was a “Blacks only” disease.
Scott and other doctors became fierce and vocal advocates for the federal funding of research in the area. In 1971, U.S. President Richard Nixon delivered his “Special Message to the Congress Proposing a National Health Strategy,” which, among other topics, highlighted the need to address the disease and committed millions of federal dollars for research. The next year, Congress passed the National Sickle Cell Anemia Control Act, which identified the disease as a national priority and authorized tens of millions of dollars for research and treatment. NIH today acknowledges that Scott is widely considered to be a key catalyst for the passage of the law.
“It is a sad and shameful fact that the causes of this disease have been largely neglected throughout our history, said Nixon. “We cannot rewrite this record of neglect, but we can reverse it.”
Howard was one of the first federal grantees of funds appropriated as a result of the law, allowing him to launch the Center for Sickle Cell Disease, the first center in the nation solely devoted to addressing the disease. Part of Scott’s work wasn’t just medical; it was sociological. There was a stigma attached to the disease, which served as an impediment to treatment.
“Dr. Scott’s work and advocacy changed the landscape for sickle cell disease,” according to the Sickle Cell Disease Association of America.
By 1995, Ebony Magazine called Dr. Scott the “preeminent authority” on sickle cell anemia. Beyond sickle cell disease, Scott also pioneered research on growth and development among healthy African American children, which helped set national medical standards. Today, he is known as the “father of Sickle Cell Disease.”
At Scott’s 2002 funeral, Dr. Duane Bonds, then leader of the National Institutes of Health’s Sickle Cell Disease Scientific Research Group, reflected on Scott’s contributions to medical and scientific research.
“His first publication on sickle cell disease, a 1948 report on the incidence of red cell sickling in newborn infants, was not only the first of its kind, but it was prophetic of the haemoglobinopathy newborn screening programs which would be started over two decades later,” Bonds said. Bonds was one of Scott’s patients as a child before becoming a doctor herself.
Another very important doctor grew up coping with sickle cell disease. He enrolled in Howard University Medical School not only to become a doctor, but to also learn to manage his own condition through the Center for Sickle Cell Disease. He went on to become the president of Howard and then, in 2024, the interim chief executive officer of the American Cancer Society.
“Growing up in Trinidad and Tobago, I would spend weeks in the hospital every year as a result of numerous sickle cell crises,” former Howard University President Wayne A. I. Frederick (B.S. ’94, M.B.A. ’11, M.D. ’94) wrote in a 2022 letter to the Howard Community. “The pain I endured during these episodes was completely debilitating. I knew that if I were to become a physician myself, I would need a supportive team of nurses and doctors, as well as a group of peers, who understood my disease and could teach me how to manage it. That was precisely what I found at Howard’s Center for Sickle Cell Disease.”
Roland Scott earned his medical degree from Howard University in 1934 after earning a Bachelor of Science degree, also from Howard.
Article ID: 2201