ISSUE
Sickle cell disease (SCD) is the most common inherited blood disorder in the United States, affecting an estimated 100,000 people. However, remarkably little is known about the population impacted by SCD. Until recently, there has never been a population-based, longitudinal study of individuals with SCD so that health outcomes can be studied for those living with the disease.
WHY IT MATTERS
- People with the most severe form of SCD have a 20-30 year shorter life expectancy than people without the disease. Major complications of SCD include anemia, debilitating pain, infection, stroke, and organ damage.
- Poor health outcomes may be the result of limited or no access to comprehensive care, especially during adult years, and limited treatment options.
SOLUTION AND IMPACT
Extending and Improving Lives
Through a partnership with CDC’s Division of Blood Disorders, Tracking California and the Georgia Health Policy Center, the CDC Foundation is supporting the Sickle Cell Data Collection (SCDC) program, the first-of-its-kind data collection system for people with SCD. The project is receiving funding support from Pfizer Inc., Sanofi, Global Blood Therapeutics and Doris Duke Charitable Foundation. In 2018, the CDC Foundation entered into a cooperative agreement with CDC to support data analysis and dissemination on the Georgia SCD population.
More Funding is Needed to Support Expansion of the Program to Additional States
The SCDC program aims to inform the development of a model for uniform, comprehensive care for SCD. Importantly, the program helps inform policy and healthcare standards that may improve and extend the lives of people with SCD. Partner support enables the CDC Foundation to continue the infrastructure of the program, including data collection, analysis and dissemination. In 2019, CDC announced recipients of a new grant to begin training additional states on how to conduct comprehensive data collection and analysis for SCD. The seven additional states – Alabama, Indiana, Michigan, Minnesota, North Carolina, Tennessee and Virginia – will receive online training in capacity-building to conduct longitudinal data collection and surveillance for SCD (no data will be collected under this grant). Through its federal cooperative agreement, the CDC Foundation will provide critical project coordination support to help onboard the new states as they learn how to undertake data collection and analysis activities.
Better Data, Better Health Outcomes
SCDC data is essential to equip states, health care provider networks and pharmaceutical and insurance companies with the information needed to help establish cost-effective treatment and healthcare practices.
The California SCDC team uses data to understand how, when, and where people with SCD seek care in emergency departments in their state. How frequently a patient uses the emergency department may point to gaps in the healthcare system, such as access to healthcare facilities and SCD healthcare expertise or insurance coverage.
The Georgia SCDC team is working with hospitals and health departments to identify areas in which people with SCD receive little to no specialist care. The team is working with partners to provide training for care providers in these counties so they can better help and treat those people in their towns and communities living with SCD. In addition, the Georgia SCD team has developed briefs using data from SCDC Georgia to inform decision-makers about critical gaps in diagnosis, treatment and access to care for Georgia patients with SCD that might be filled through policy changes, improved health care practices and education. View the latest Sickle Cell Data Collection Program Brief: Access to Care For Children.
Learn more about the impact of SCDC:
SCOPE OF THE PROBLEM
An estimated 100,000 Americans have SCD
People with the most severe form of SCD have a 20-30 year shorter life expectancy than people without SCD.
$1.1 billion dollars is the estimated annual cost for care and treatment for SCD—the majority of which is endured by public insurance programs like Medicaid and Medicare.