ASH President Thanks Congress, President for Support of Legislation to Improve Sickle Cell Disease Data Collection and Care
(WASHINGTON, December 11, 2018) — Today, Congress passed the bi-partisan Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018. This legislation will authorize a program within the Centers for Disease Control and Prevention (CDC) that will allow states, academic institutions, and non-profit organizations to apply for grants to gather information on the prevalence of sickle cell disease (SCD) and the health outcomes, complications, and treatment that people with SCD experience. This bill also reauthorizes SCD treatment grants awarded by the Health Resources and Services Administration (HRSA), which will help to improve access to care and quality of care for individuals with SCD. President Donald Trump is expected to sign the bill into law.
2018 ASH President Alexis A. Thompson, MD, MPH, of the Ann and Robert H. Lurie Children’s Hospital of Chicago, issued the following statement:
“Individuals with sickle cell disease 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. By expanding efforts to better understand the prevalence and treatment needs of people with this disease, the bi-partisan Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 is the first step toward understanding where gaps exist so groups like ASH, policymakers, and health care providers can address the need where it is greatest.
ASH thanks Senators Tim Scott (R-SC) and Cory Booker (D-NJ) and Representatives Danny Davis (D-IL) and Michael Burgess (R-TX) for their leadership in passing this legislation. The Society also thanks President Trump for indicating his commitment to improving the quality and continuity of care of individuals with SCD from infancy through adulthood.
ASH remains committed to working with lawmakers and collaborating with CDC and HRSA in our quest to conquer sickle cell disease.”
Sickle cell disease (SCD) is an inherited, lifelong chronic disorder affecting nearly 100,000 Americans, primarily of African, Mediterranean, and Middle Eastern descent. SCD is characterized by rigid, sickle-shaped red blood cells that stick to blood vessels, blocking blood flow. To-date, there are only two FDA-approved therapies for SCD, and curative options remain limited. Chronic and acute pain, brain injury, organ damage, stroke, and death are all devastating complications associated with SCD.
The American Society of Hematology (ASH) (www.hematology.org) is the world’s largest professional society of hematologists dedicated to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. For 60 years, the Society has led the development of hematology as a discipline by promoting research, patient care, education, training, and advocacy in hematology. ASH publishes Blood (www.bloodjournal.org), the most cited peer-reviewed publication in the field, which is available weekly in print and online, as well as the newly launched, online, peer-reviewed open-access journal, Blood Advances (www.bloodadvances.org).
Amanda Szabo, American Society of Hematology