U.S. Senators Tim Scott and Cory Booker have reintroduced the Sickle Cell Disease Comprehensive Care Act, a bipartisan bill aimed at enhancing care for patients with sickle cell disease (SCD) through state Medicaid programs. The legislation proposes a health home model to offer comprehensive and coordinated care.
Sickle cell disease is an inherited blood disorder primarily affecting individuals of African descent. It leads to symptoms such as debilitating pain, stroke, acute chest syndrome, and organ damage. Those with SCD also face significantly lower life expectancy compared to the general population.
Despite advancements in treatment, many SCD patients lack adequate care. The proposed act directs CMS to create a SCD Health Home for Medicaid beneficiaries in states that submit a state plan amendment. This initiative aims to improve outpatient care access and reduce emergency room visits.
“Nearly 100,000 Americans have sickle cell disease—many of whom are left without access to consistent care,” stated Senator Scott. “I am glad to work on this bipartisan legislation to help treat this disease that affects thousands of Americans from minority communities.”
“Sickle cell disease is the most common inherited blood disorder in our country,” said Senator Booker. “Despite the prevalence and severe health consequences of the disease, Americans battling sickle cell continue to face barriers to accessing the care they need.”
Senator Scott has been active in raising awareness for sickle cell disease during his Senate tenure. The new act builds on previous efforts like the 2018 Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act introduced with Senator Booker.
The legislation has endorsements from several organizations including the Sickle Cell Disease Partnership; American Society of Hematology; and Sickle Cell Disease Association of America, Inc.
