Consider, for comparison, the experience of people with another life-shortening genetic illness, cystic fibrosis, a respiratory and digestive condition. Like sickle cell, it gets worse with age, requires strict daily drug regimens, and often results in hospitalization. And like sickle cell, it dramatically shortens patients’ life spans—to a median of 37 years for cystic fibrosis, compared to 40 to 45 years for sickle-cell disease.
… But here’s one key difference: Cystic fibrosis affects mostly Caucasians. And that, suspects John Strouse, a Johns Hopkins hematologist who has compared data about the two diseases, is one reason why funding for cystic fibrosis research, drug development, and patient advocacy dwarfs that for sickle-cell disease. In 2011, the most recent year for which his data is available, spending on cystic fibrosis totaled $254 million—nearly four times the $66 million that was spent on sickle cell, even though the latter affects three times as many people. [link]