The history of sickle cell disease in the 20th century and its link to race is the focus of a Nov. 16, 2010 talk at a national symposium by NJIT Associate Professor Stephen Pemberton, PhD, an expert on the history of diseases. Pemberton will speak and join a panel discussion at the National Institutes of Health (NIH), Bethesda, 100th anniversary symposium commemorating the discovery of sickle cell disease by Chicago physician James B. Herrick. The event will be webcast. For more information, see http://www.nhlbi.nih.gov/meetings/James-Herrick-Sicklecell/index.htm
“Herrick’s discovery of sickle cell disease was a pivotal moment in medical history,” Pemberton said. “It stands as a crucial innovation in Western medicine as well as hematology, one that symbolized the power of microscopic analysis and the laboratory to give evidence to a distinctive form of anemia that physicians had previously failed to see among their African-American patients.”
Pemberton, a historian, wrote The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis and Sickle Cell Disease (Johns Hopkins University Press, 2006). The book received the science award that same year from the Association of American Publishers. Next year, Johns Hopkins University Press will publish his forthcoming book: The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress.
Pemberton will participate in the symposium’s opening panel discussion on historical and cultural perspectives. John Ruffin, director of the National Center on Minority Health and Health Disparities, will moderate. Pemberton’s talk, "Sickle Cell Anemia and the Vexed Crossroads of Race and Disease in America,” will examine health disparities of African Americans over the last century. “African Americans have been at a disadvantage in our healthcare system,” he said. “What historians have done is use sickle cell as a lens into the disparities in the treatment of the disease.”
Physicians and others believe today that the sickle cell trait is prevalent among people of African descent because the trait developed over time as protection against malaria. The trait is not the disease; it’s related to a specific gene. Individuals who inherit it from both parents have a 25 percent chance of developing the disease, a hereditary disorder leading to anemia and treatable by blood transfusions. Affected red blood cells are sickle-shaped, hence the name, and don’t carry oxygen efficiently so that patients experience painful crises as their tissues are starved.
Highlights from Pemberton’s talk include:
- As the disease rose to prominence from 1950-1980, it came to embody the pervasive pain and suffering of the African-American community. Many politicians marked investments in research and treatment of sickle cell as a sign of sensitivity to issues of race and cultural difference in America, even where they sought to reduce overall investments in medicine and public health.
- Despite the attention, the ways that the history of sickle cell disease has been told in the last century have (until recently) largely neglected the patient’s changing experience of their illness. Ironically, despite the growing social visibility of the disease in the U.S. over the last century, people with the disease remain a poorly understood, if not neglected, population.