Kyra and Kami never got a simple test that could have protected them. Their story exemplifies the failure to care for people with the disease, most of whom are Black.

Kyra, left, and Kami Crawford, of San Antonio, are both living with sickle cell, a common complication of which is stroke. Dr. Francis Collins, director of the National Institutes of Health, said the lack of attention paid to sickle cell historically “is one more reflection of the fact that we do not have equity in our country.” The burden falls on parents to navigate the nation’s complicated, fragmented health care system. Read the Full Article.