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

WASHINGTON, D.C. - U.S. Senators Cory Booker (D-NJ) and Tim Scott (R-SC), along with U.S. Representatives Danny Davis (D-IL) and Michael Burgess (R-TX), have updated the bipartisan, bicameral Sickle Cell Disease Comprehensive Care Act. The legislation would allow State Medicaid programs to provide comprehensive and coordinated care to patients with sickle cell disease (SCD) through a health home model.

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. The Sickle Cell Disease Comprehensive Care Act directs CMS to establish a SCD Health Home to improve access to comprehensive, high-quality, outpatient care, which will be available to Medicaid beneficiaries with SCD in states that submit a state plan amendment (SPA). Further, this program shows 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 updated bill that would improve access to quality care for SCD patients and provide vital investment in SCD treatment."

"Nearly 100,000 Americans have sickle cell disease-many of whom are left without access to consistent care," said Senator Scott. "I am glad to work on this bipartisan legislation to help treat this disease that affects thousands of Americans from minority communities. Creating access to high-quality comprehensive care to avoid costly emergency room visits continues to be a top priority of mine for folks facing diseases like SCD."

"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."

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.

To read the full text of the bill, click here.

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