Improving the lives of people with sickle cell disease

ISSUE

Sickle cell disease (SCD) is the most common inherited blood disorder in the United States, affecting an estimated 90,000 to 100,000 Americans.  However, remarkably little is known about the population impacted by SCD as a whole.  Until now, there has never been a longitudinal study of individuals with SCD so that health outcomes can be improved for those suffering from the disease.

WHY IT MATTERS

  • People with the most severe form of sickle cell disease 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

Sickle CellThrough a partnership with CDC’s Division of Blood Disorders, the California Rare Disease Surveillance Program and the Georgia Health Policy Center, the CDC Foundation is supporting the Sickle Cell Data Collection program, a data collection system for Americans with sickle cell disease. The project is receiving funding support from Pfizer Inc., Biogen and Global Blood Therapeutics and is currently focused on California and Georgia.

More Funding is Needed to Expand the Program to Additional States

Importantly, the program helps inform policy and healthcare standards that improve and extend the lives of people with SCD. As more resources become available, plans call for expanding the program to include additional states, with the capacity to collect information on every person diagnosed with SCD in the United States.

Better Data, Better Health Outcomes

This data is essential to equip states, health care provider networks and pharmaceutical and insurance companies with the information needed to establish cost-effective treatment and healthcare practices that improve and extend the lives of people with SCD.

  • As just one example, data from this program helped determine that more than 50 percent of the adults living with SCD in California live in LA County, an area in need of more healthcare services and providers who are able and willing to treat patients with SCD.
  • This information helped inform the Los Angeles County Department of Public Health’s decision to open a clinic focused on SCD at the MLK Outpatient Center in September 2016.

View a fact sheet on this topic: Download a print-ready PDF

PARTNER PERSPECTIVE

Understanding the clinical history of individuals living with sickle cell disease continues to be of great importance. This partnership is enabling critical support for the collection and study of information leading to advances in sickle cell disease treatment.

Dr. Coleen Boyle, Director
CDC National Center on Birth Defects
and Developmental Disabilities


SCOPE OF THE PROBLEM

90,000-100,000 Americans have SCD

People with the most severe form of SCD have a 20-30 year shorter life expectancy than people without SCD.

$2 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.


HOW YOU CAN HELP

Support the Sickle Cell Disease Initiative
CDC and the CDC Foundation are seeking partners who want to improve the lives of Americans with sickle cell disease by partnering in one or more of four critical focus areas: the Sickle Cell Data Collection program, health education and promotion, laboratory capacity and public health awareness.

Learn More
Contact Advancement at the CDC Foundation
advancement@cdcfoundation.org or 404.653.0790.

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