Only a few decades ago, a child with sickle cell disease (SCD)External Link had a life expectancy of 14 years. Today, those with SCD can live into adulthood. With early identification and multi-disciplinary, coordinated treatment many patients with SCD can effectively manage their disease.

However, many patients do not have access to coordinated care and rely on emergency room visits to manage pain, where they may encounter confusion about the disease and delayed treatment for pain, leading to longer hospitalizations and distress. Furthermore, because in the past many patients with SCD died at an early age, caring for the disease has focused in the pediatric arena, with adult care lagging behind. This makes assistance with the transition from pediatric care to adult care crucial.

Multi-sector collaboration as well as increasing education about the disease, ensuring that screening recommendations are met and managing SCD with proven treatment protocols are all needed to improve care across the lifespan for individuals with SCD.

WHAT IS SICKLE CELL DISEASE?

Sickle cell disease (SCD) is an inherited red blood cell disorder that affects around 100,000 people in the United States, largely individuals of African ancestry, but increasingly in Latino and other populations as well. Individuals with SCD experience painful episodes when their red blood cells morph into a crescent (“sickle”) shape and get stuck in small blood vessels. This blockage inhibits blood flow, which deprives tissues of oxygen and causes severe pain and tissue damage. SCD is characterized by chronic anemia, unpredictable episodes of pain and end-organ damage, and early mortality.