ASH President Thanks Congress, President for Support of Legislation to Improve Sickle Cell Disease Data Collection and Care
Published on: December 11, 2018
(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
“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).
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Amanda Szabo, American Society of Hematology