Booker, Scott, Davis, Burgess Reintroduce Legislation Addressing Sickle Cell Disease

WASHINGTON, D.C. – Today, U.S. Senators Cory Booker (D-N.J.) and Tim Scott (R-S.C.), along with U.S. Representatives Danny Davis (D-IL) and Michael Burgess (R-TX), reintroduced the bipartisan, bicameral Sickle Cell Disease Comprehensive Care Act, legislation that 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).

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

While there have been some advancements in the treatment of SCD, many with the disease are not receiving the level of care needed to adequately manage SCD. A Medicaid demonstration program, such as the one outlined in the legislation, 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 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.

“Despite the prevalence of sickle cell disease, individuals impacted by the blood disorder lack access to the comprehensive care needed to help manage their conditions,” said Senator Booker. “Sickle cell disease primarily affects those of African ancestry, and it results in severe health consequences and significantly lower life expectancy. I am proud to join my colleagues in introducing this bill that would improve access to quality care for SCD patients and provide vital investment in SCD treatment.”

“Despite being the most commonly inherited blood disorder in the US – affecting one in every 365 Black Americans – research and treatment for sickle cell disease remains disproportionately limited,” said Senator Scott. “We must ensure our medical community can better care for – and one day, cure – individuals with this painful disease.”

“Dr. Michael C. Burgess (TX-26) and I in the U.S. House of Representatives have worked collaboratively on multiple, successful legislative efforts over many years to improve the lives of people with sickle cell disease.  The introduction of the Medicaid SCD Demonstration legislation is another example of our commitment to those with this condition and their unique perspectives on suffering and commitment to life,” said Representative Davis.

“During my residency at Parkland Hospital, I cared for patients with sickle cell disease and witnessed the devastating effect it can have. The Sickle Cell Disease Comprehensive Care Act provides an important step ensuring access to services for those affected by this disease,” said Representative Burgess, M.D. “I am grateful for Senator Cory Booker, Senator Tim Scott and Congressman Danny Davis’ leadership on this important legislation. My desire is that this will put us closer to discovering a cure.”

“The Sickle Cell Disease Partnership is pleased to support The Sickle Cell Disease Comprehensive Care Act introduced by Senators Cory Booker and Tim Scott,” said Brett Giroir, M.D., Senior Advisor to the Sickle Cell Disease Partnership. “The Partnership is a public policy and advocacy alliance of more than a dozen organizations who represent Sickle Cell warriors, their community and national patient organizations, as well as the health care providers, health plans, and pharmaceutical manufacturers, and others who provide care and treatment for them. The Comprehensive Care Act is timely, targeted, and needed legislation designed to improve access to care for the thousands of Americans who have this rare, genetic blood disorder – about half of whom receive their health coverage and care through Medicaid. We look forward to working with Congress on a bipartisan basis to advancing this legislation this year.”

“A lack of access to quality, comprehensive care remains an urgent issue for individuals living with SCD, and we commend Senators Booker and Scott for their unwavering commitment to legislation that addresses this problem,” said Robert A. Brodsky, MD, President of American Society of Hematology. “This bill proposes coordinated efforts to increase access to specialized, primary and preventative care for people with SCD insured by Medicaid. Such efforts enable individuals to better manage their condition and avoid serious pain complications, ultimately enhancing hematologists’ abilities to improve outcomes for the SCD community. ASH looks forward to continuing to support Senators Booker and Scott and other members of Congress to optimize care for people living with sickle cell disease.”

“The Sickle Cell Disease Association of America, Inc. supports the reintroduction of the Sickle Cell Disease Comprehensive Care Act,” said Regina Hartfield, President and CEO of Sickle Cell Disease Association of America, Inc. “This legislation addresses many gaps in care for sickle cell disease by increasing resources and coordination of high-quality care. SCDDA believes passing this legislation will lead to higher quality care and a higher quality of life for many sickle cell warriors covered by Medicaid.”

“Sick Cells is proud to support the introduction of the bipartisan Sickle Cell Disease Comprehensive Care Act,” said Ashley Valentine, Co-Founder & President of Sick Cells. “Through the Medicaid demonstration project outlined in this bill, medical providers will receive education rooted in the community’s needs leading to more compassionate and trustworthy care for individuals living with sickle cell disease. This legislation will work towards improving Medicaid and its auxiliary services and will increase access to high-quality care for the SCD community.”

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.

The legislation is endorsed by: Sickle Cell Disease Partnership; American Society of Hematology; Sickle Cell Disease Association of America, Inc; Sick Cells.

The full text of the legislation can be viewed here.