Affecting an estimated 100,000 Americans, Sickle Cell Disease (SCD) is the most common inherited blood disorder in the U.S. About 1 of every 500 Black babies and 1 out of every 36,000 Hispanic babies are born with SCD, which causes a wide range of symptoms, including mild to severe pain, anemia, organ damage, stroke and other serious complications. People with the most severe form of SCD have a 20-30 year shorter life expectancy than people without SCD. But without knowing who is affected, where they are, and what kind of care is available and accessible to them, it’s difficult to provide support and promote better health outcomes.
In 2015, the Sickle Cell Data Collection (SCDC) project was launched by the CDC Foundation with financial support from the private sector in partnership with CDC’s Division of Blood Disorders. Scientists gather health information from multiple sources in California and Georgia to determine how many people live with the disease in these two states, and to study long-term trends in diagnosis, treatment and healthcare access. The project recently expanded to 16 states.
This surveillance data can help us better understand some of the barriers to health care experienced by people with SCD by:
• teaching healthcare providers about how people with SCD interact with the healthcare system;
• providing researchers with accurate information to improve healthcare access for people with SCD; and
• educating policymakers and healthcare administrators about opportunities for improving healthcare services for people with SCD.
