access to care in the U.S.
The Current State
Today, individuals with sickle cell disease are living longer, but the system of care needs to change to ensure a better quality of life.
As more people with SCD are living into adulthood, disease management needs to shift from acute care of complications to a chronic care model that focuses on prevention of crises, and intervention and relief for common complications. A coordinated health care delivery system for adults with SCD is a first step to improve health outcomes.
75% of adults with sickle cell disease fail to get the recommended treatment for their pain.
Health care costs an adult with sickle cell disease more than $30,000 per year on average.
The most promising drug for treatment, hydroxyurea, is not regularly prescribed.
- Stabilize funding streams and sustainability of programs domestically.
- Seek payment reform to support comprehensive management of pain and other long-term complications.
- Support development and expansion of effective state strategies ("carve-outs") to enhance public insurance coverage and reimbursement.
Why it matters