Congrats to the sickle cell community on the first sickle cell drug in 20 years! Many more are needed, and thankfully under development. Speaking at a sickle cell conference last week, I was reminded by patients themselves the problems that remain -- from patient interactions in the ED and “graduating” from children’s hospitals without a lifeline or care plan to the inappropriateness of being cared for in hospitals by providers with little or no understanding of sickle cell disease.
Our patients deserve better and are learning quickly how to fight for it….and I’m honored to be helping in any way I can.