Posted on February 26, 2020
Each year in the United States, hundreds of babies are born with sickle cell disease (SCD), joining the nearly 100,000 American who already live with this disease. As pediatricians, we understand the challenges parents and caregivers face when attempting to secure the best and most effective care for their children. Unfortunately, when children living with sickle cell disease become adolescents and young adults, it can become even more difficult to navigate management and treatment options as health complications including pain crises often grow more intense and frequent. The poor adherence to treatment guidelines, lack of innovation, gaps in the delivery system, and underlying discrimination also add additional hurdles that make it difficult for people living with this disease to live a normal, high quality life.