Senators Booker and Scott Introduce Comprehensive Legislation Addressing Sickle Cell Disease

WASHINGTON, D.C. – U.S. Senators Cory Booker (D-NJ) and Tim Scott (R-SC) introduced the Sickle Cell Disease Comprehensive Care Act. This legislation would direct the Centers for Medicare and Medicaid Services (CMS) to create a Medicaid demonstration program to improve access to comprehensive, high-quality, outpatient care – including clinical and support services – for individuals with sickle cell disease (SCD). Congressman Danny K. Davis (D-IL 07) and Congressman Michael C. Burgess (R-TX 26) introduced the Sickle Cell Disease Comprehensive Care Act in the House last week.

Sickle cell disease is an inherited blood disorder that disproportionately impacts people of African descent. Among the most notable symptoms of SCD is severe, debilitating pain, but people with SCD also experience complications like stroke, acute chest syndrome, and organ damage. Sadly, individuals with SCD have a significantly lower life expectancy than the overall population.

While some advancements in the field have been made recently, many with SCD are not receiving the level of care needed to adequately manage the disease.  A Medicaid demonstration program, such as the one outlined in the Sickle Cell Disease Comprehensive Care Act, could significantly improve the quality of care SCD patients receive. Additionally, any improvements made as a result of this demonstration program would have the potential to meaningfully improve care for all SCD patients as approximately half of SCD patients in the U.S. are enrolled in Medicaid according to CMS data. Further, this demonstration program shows a lot of promise in saving money, as it aims to reduce patients’ reliance on costly emergency room care.

“People with sickle cell disease have for too long suffered from an underinvestment in federal funding and attention,” said Senator Booker. “The Sickle Cell Disease Comprehensive Care Act would improve access to high-quality, comprehensive care for SCD patients and would be the greatest investment in SCD patients and care since our Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act that passed into law in 2018. I am proud to introduce this legislation with Senator Scott.”

“Sickle cell disease is the most common inherited blood disorder in the U.S., affecting one in every 365 Black Americans,” said Senator Scott. “Yet despite the prevalence of SCD, research and treatments remain far too limited. I’m proud to support today’s legislation that will help our medical community better treat individuals with this painful disease.”

“Sickle Cell Disease Association of America welcomes the Sickle Cell Disease Comprehensive Care Act and hopes that this will improve access to quality medical care for more individuals with sickle cell disease,” said Lewis Hsu, MD, PhD Chief Medical Officer, Sickle Cell Disease Association of America.

“We applaud Senators Booker and Scott for acknowledging and addressing the problem of lack of comprehensive care for individuals living with SCD,” said American Society of Hematology President Martin S. Tallman, MD. “As hematologists, we know that individuals living with SCD lack access to comprehensive care to manage their condition to avoid serious complications. Unfortunately, this means that these individuals – who are already burdened by a devastating disease – do not receive care that is holistic and tailored to their unique needs. The introduction of the new bill, which would provide an organized approach to primary and preventative care for individuals with SCD, is a crucial first step toward improving outcomes for the SCD community. We look forward to continuing to work closely with Senators Booker and Scott and other members of Congress to ensure that all people living with sickle cell disease get the care they need.”

“Representing African-American physicians across the nation, the National Medical Association (NMA) continues to advocate for and find solutions to eliminate health disparities faced by individuals with Sickle Cell Disease.  We proudly support the Sickle Cell Comprehensive Care Act, which authorizes the Centers for Medicare and Medicaid Services to create a program for Medicaid beneficiaries living with Sickle Cell Disease, particularly young adults and pregnant persons. This innovative policy improves access to comprehensive outpatient care, specialists and resources in an effort to combat this disease and address critical gaps in care. The NMA understands that passage of this legislation is a crucial step in improving health outcomes and quality of life for this underserved population, as we strive to achieve equitable health care for all,” said Rachel Villanueva, MD FACOG, National President of National Medical Association.

Throughout his time in the Senate, Booker has raised awareness for sickle cell disease and advocated for equitable funding, increased attention, and better access to treatments and care for people with SCD. The Sickle Cell Disease Comprehensive Care Act builds upon this work, including his bipartisan Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act that he introduced with Senator Scott and which passed and was signed into law in 2018. Additionally, earlier this week, Senators Booker and Scott’s resolution designating September as Sickle Cell Disease (SCD) Awareness Month unanimously passed in the Senate.

The full text of the legislation can be viewed here.

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