Statement by Secretary Sebelius on National Sickle Cell Disease Awareness Month

Washington, DC–(ENEWSPF)—September 22, 2011.  Every September, we recognize National Sickle Cell Disease Awareness month to increase public knowledge about Sickle Cell disease (SCD).   SCD is the most common inherited blood disorder; an estimated 72,000 Americans live with SCD, and approximately two million Americans, including one in 12 African Americans, carry the Sickle Cell Trait.

Although there is not yet a widely available cure, we have made major progress in increasing the life expectancy of people with sickle cell disease.  The U.S. Department of Health and Human Services (HHS) is continuing to identify ways to improve the quality of care for all patients with SCD. Earlier this year, HHS launched the Sickle Cell Disease Initiative, which brings together multiple HHS agencies – including the National Institutes of Health, Health Resources and Services Administration, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services, Food and Drug Administration, and Agency for Healthcare Research and Quality –across HHS to find better ways to educate the public about SCD, enhance research to find better treatments, and train more clinicians using evidence-based guidelines that promote quality, comprehensive care.  While continuing HHS’ focus on the needs of children with SCD, HHS is increasing its attention on children with SCD transitioning to adult care and adults with SCD.

As part of this effort, today the Agency for Healthcare Research and Quality is awarding an $865,365 grant, over a three year period, to Dr. Paula Tanabe at Duke University to conduct research that will help improve the quality of care provided by emergency departments (EDs) for adults with SCD.  A recent study indicates that approximately 25 percent of adults with SCD visit the ED more than six times a year, and many of these patients have potentially life threatening complications.

Continued progress in helping people with SCD will require strong collaboration, including government agencies, industry, health care providers, biomedical researchers, community leaders, and individuals and families affected by SCD.  This September, and throughout the year, I hope we will reaffirm collectively our commitment to addressing the needs of people and families with SCD.

More information on the Sickle Cell Disease Initiative can be found at

More information on Sickle Cell Disease can be found at