12 Jun ASH President Applauds Legislation to Improve Sickle Cell Disease Data Collection and Care
Published on: February 28, 2018
(WASHINGTON, February 28, 2018) — Today, Senators Tim Scott (R-SC) and Cory Booker (D-NJ) introduced the Sickle Cell Disease 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.
Similar legislation, sponsored by Representatives Danny Davis (D-IL) and Michael Burgess (R-TX), passed the House of Representatives earlier this week.
ASH President Alexis A. Thompson, MD, MPH, of the Ann and Robert H. Lurie Children’s Hospital of Chicago, issued the following statement:
“While we know that many people living with sickle cell disease are unable to access quality care, policymakers and health care providers lack the data on just how widespread this need is, and where it is greatest. By expanding efforts to better understand the prevalence and treatment needs of people with this disease, and increasing access to quality care, the legislation introduced today by Senators Scott and Booker has the potential to dramatically improve the quality of life of the 100,000 Americans with sickle cell disease. ASH is committed to working with lawmakers to ensure passage of this vital legislation 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 more than 50 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. In 2016, ASH launched Blood Advances (www.bloodadvances.org), an online, peer-reviewed open-access journal.
Stephen Fitzmaurice, American Society of Hematology