Despite decades of medical and public-health efforts, sickle cell disease (SCD) remains a largely invisible, and vastly misunderstood, lethal genetic blood disorder whose victims are mostly comprised of African-American, urban, poor residents, whose status intersects fatefully with failed efforts to improve the overall health, educational opportunities, and quality of life for thousands of Baltimore’s and Maryland’s most vulnerable citizens. The relentless “sickle cycle”—a term that aptly describes the chronic, unpredictable nature of the excruciating and recurring medical crises that mark the progression of the disease—also describes the cycle of underachievement, joblessness, depression, and educational failure that creates undue burden on patients, their families, and the broader community.
Beyond the physical damage and devastating psycho-social trauma resulting from SCD is the sad irony that these effects are occurring at a time when medical specialists can prevent, delay, and/or mitigate the worst symptoms of this most common inherited blood disorder in the nation. Studies by medical and social scientists demonstrate that ignorance, fear, discrimination, and misunderstanding about SCD are largely to blame, and achingly widespread among the very institutions—schools, colleges, emergency medical personnel, employers, community clinics—that urban, poor, and minority populations need most to support them. “This disease is a prototype example of how social, health, and economic issues combine to create an environment where poor quality of care yields poor health outcomes and death, as well as poor outcomes in other spheres of life,” says Cynda Hylton Rushton, Ph.D., a nurse, expert on compassionate care, and bioethicist at Johns Hopkins Berman Institute of Bioethics.
This Abell Report gathers information from physicians, social scientists, patients, community organizers, and bioethicists to bring needed attention to the plight of people with SCD from public-health experts, policy makers, and opinion leaders. To a person, those interviewed for the article issued a strong call for action to stop the sickle cycle in Baltimore City and the state.