During the late 1960s Doris Jacobs was screened for sickle-cell anemia, one of several sickle-cell diseases (SCD) that primarily affect African Americans, and diagnosed with having the sickle-cell trait. The 1970s was an era when advances in medical screening technologies and political activism among African Americans merged to define sickle-cell anemia as a major epidemic among African Americans, and one that had been neglected by the health care system arguably because it was a “black disease.” Indeed, sickle-cell anemia was first diagnosed in 1910, but awareness of it among health authorities or black people was uncommon. It is now known to be one of a related group of SCDs that are genetically transmitted, incurable, and, until recent decades, thought to lead to early death. The red blood cells of people with sickle-cell anemia take the shape of a sickle and become sticky, which restricts the flow of blood through the vessels. In some cases this leads to death, but the more common outcomes are relentless pain (or “pain crises”), bacterial infections, organ damage, and strokes. SCDs are now known to be the most common genetic blood disorders in the world and, in the US, affect as many as 98,000 people, mostly African Americans. About 1 in every 350 African Americans is born with the disease every year (Ciribassi and Patil, 2016).

The US SCD experience provides an interesting lens for looking at the politics of medicine and the repercussions of those politics, and how racial and class inequalities influence responses to illness symptoms and diagnoses. The SCD crisis represented another chapter in a long history of experiences that have distanced African Americans from the medical system and caused many to distrust physicians. The public and medical response to SCD, which by the late 1960s was being called a neglected epidemic among African Americans, highlighted the intersection between medicine and politics. The National Sickle Cell Anemia Control Act of 1972, passed during an era of social protest against racial segregation and injustice, described the disease as a “deadly and tragic burden” and provided the basis for a national program to screen for and treat sickle cell anemia.