Presidential Message on National Sickle Cell Disease Awareness Month

Office of the Press Secretary FOR IMMEDIATE RELEASE September 1, 2019 Presidential Message on National Sickle Cell Disease Awareness Month National Sickle Cell Disease Awareness Month is a time to acknowledge the challenges faced by Americans with sickle cell disease (SCD) and to reaffirm our commitment to increasing the quality, affordability, and accessibility of different treatment options. SCD is an inherited red blood cell disorder that is most prevalent among those who have ancestors from sub-Saharan Africa and certain regions of South and Central America.  In the United States, SCD occurs in 1 out of every 365 African-American births and 1 out of every 16,300 Hispanic-American births.  Beginning in early childhood, people with SCD experience a lifetime of crippling pain, challenging disabilities, and often premature death.  The Centers for Disease Control and Prevention estimates medical expenses of children with SCD average between $11,000 and $14,000, with nearly 40 percent of these patients requiring at least one hospital stay. While American research and innovation have led to medical advances that provide a wide array of treatments for improving the prognosis of children living with SCD, many can be used only for a specific subset of patients.  Far too many patients who could benefit from treatments such as stem cell or bone marrow transplants are not identified until they have already experienced a debilitating medical episode that causes irreversible organ damage.  The National Institutes of Health is working to address this through research to identify children who are more likely to suffer from severe SCD through genetic modifiers.  We want to know which children are at risk and treat them before they experience permanent organ deterioration.  My Administration is also exploring new payment models to make these treatments and potential cures more affordable.  We are also excited to be working with several organizations in developing education and training programs that equip healthcare providers with skills and training to better identify and treat this disease. We will always stand strong with those battling this condition and remain committed to improving the quality of life of those living with SCD.