more funds to flow into research for improved quality of life, cure ….
On December 11, 2018, the US Congress passed the bi-partisan Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018. This legislation authorizes 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.
The Act also re-authorizes 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 has signed the Act into Law.
Reactions From ASH, SCDAA
In a statement , Alexis A. Thompson, MD, MPH, President, American Society of Hematologists (ASH), said –
‘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 remains committed to working with lawmakers and collaborating with CDC and HRSA in our quest to conquer sickle cell disease.’
Beverley Francis-Gibson President/CEO, Sickle Cell Disease Association of America (SCDAA ) Inc. stated –
‘It is amazing what can happen when our collective voices sound together to effect positive change,’ said ‘We are grateful for this legislative victory and to all of the individuals living with SCD and their families for their strength and for their efforts to be heard. The Treatment Act of 2018 marks another step forward in our collective efforts to better understand the prevalence and outcomes of SCD through research and to address the complex needs of the sickle cell community.’
Senator Tim Scott (R-SC), introduced the bill on February 28, 2018. Co-sponsors included Senators Doug Jones (D-AL), Bill Cassidy (R-LA), Debbie Stabenow (D-MI), and Elizabeth Warren (D-MA).