Addressing shortfalls in sickle cell specialized care access

First-ever recommendations for establishing dedicated adult sickle cell disease treatment centers published


Directors of the top sickle cell disease (SCD) programs in the US recently published the first set of recommendations for establishing SCD centers aimed at improving access to care for adults living with the debilitating, lifelong blood disease. The recommendations, which resulted from a study done in preparation for an American Society of Hematology (ASH) workshop in 2019, outline the essential components that must be in place to establish an adult SCD treatment center.

SCD patients in the US often lack access to comprehensive care to manage their condition, help them prevent emergency department visits, and avoid serious complications.

The recommendations, published in Blood Advances, codify the required components of establishing SCD adult care centers. These requirements include:

  • Multidisciplinary, team-based, evidence-guided care that is coordinated throughout the institution
  • The SCD center as the recognized authority for managing SCD within the institution
  • A physician lead who is considered an SCD specialist
  • One or more social workers, a patient coordinator, and dedicated nursing staff
  • The ability to offer acute and chronic pain management, transfusion, and access to specialists

The paper makes recommendations for additional important, but not required, personnel such as clinic managers, behavioral health staff and psychologists, physical and occupational therapists, and pharmacists. Altogether, the recommendations define comprehensive care for SCD as team-based, holistic, and tailored to the unique needs of individuals with this condition.

SCD is the most common inherited red blood cell disorder in the US, affecting an estimated 100,000 people. According to the Centers for Disease Control and Prevention, SCD affects one out of every 365 Black or African American births and one out of every 16,300 Hispanic American births. Individuals with SCD suffer from acute pain episodes and chronic pain, and may be affected by an array of other organ complications, which can cause disability or even death.

Since the universal adoption of newborn screening in the US in 2006, care for children living with SCD has improved. However, their access to appropriate, quality care often suffers in the transition to adulthood because of a shortage of specialized providers (adult patients are reportedly more likely to receive care in community hospitals, where SCD-specific experience is less common) and gaps in coordination among the various primary care physicians and specialists who might treat a patient with this disease. Other barriers to specialized care for adults with SCD include those related to health insurance cost and coverage, socioeconomic status, and co-existing conditions.