The U.S. Congress recently passed the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018, bipartisan legislation designed to improve the lives of patients living with sickle cell disease (SCD).
The act includes provisions for the following:
- authorizing public health initiatives in SCD
- authorizing a SCD surveillance and data collection program at the Centers for Disease Control
- reauthorizing the existing SCD Treatment Demonstration Program at the Health Resources and Services Administration
"Individuals with SCD not only suffer from chronic, debilitating pain and are at risk for other serious complications, but many of them also lack access to the medical care they need," said Alexis A. Thompson, MD, MPH, 2018 president of the American Society of Hematology (ASH). "Expanding efforts to better understand the prevalence and treatment needs of people with this disease, [this act] is the first step toward understanding where gaps exist so groups like ASH, policy-makers, and health-care providers can address the need where it is greatest."
Sources: The Hill, December 11, 2018; ASH press release, December 11, 2018.