Scott, Booker Reintroduce Legislation Addressing Sickle Cell Disease

WASHINGTON — U.S. Senators Tim Scott (R-S.C.), member of the Senate Finance Committee, and Cory Booker (D-N.J.) reintroduced the bipartisan 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. 

“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.”

“Sickle cell disease is the most common inherited blood disorder in our country, and is a disease that primarily affects those of African ancestry,” said Senator Booker. “Despite the prevalence and the severe health consequences of the disease, Americans battling sickle cell continue to face barriers to accessing the care they need. I urge my colleagues in the Senate to support this bipartisan legislation to increase access to comprehensive, high-quality care and invest in quality treatments for patients fighting SCD.”

Throughout his time in the Senate, Senator Scott 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 Booker 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.

The full text of the bill can be found here.

###