A nice essay by Dr. Barron H. Lerner in the New York Times looks at a long-time survivor of sickle cell anemia, and the ways that treatment options have developed. Now nearly 60, Gladys Jacobs has lived with the disease for 44 years:
On top of all this, Gladys suffered disrespect. Too many physicians and nurses assumed she was faking symptoms to get pain medication. "The impression," she said, "is that we are all addicts."
Doctors' fear of promoting drug addiction led them to underprescribe drugs to sickle cell patients for example, insisting on checking blood tests before giving pain medications. Gladys never really cared about the test results. "I know how I feel," she said.
Race, as Mr. [Keith] Wailoo shows in his book, was central to the conundrum of treating sickle cell patients, a vast majority of whom are African-American. As one hematologist conceded, delaying the administration of pain medications has a "racial undertone."
It is a standard example in introductory genetics courses, but rarely do students get to see the world behind the textbooks. The article mentions that Jacobs may have survived longer than typical because she also carries the beta thalassemia variant, which tends to reduce the severity of her sickle cell.