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ASH-Supported Sickle Cell Disease Legislation Introduced in U.S. Congress

January 31, 2022

February 2022

In December 2021, U.S. Representatives Danny Davis (D-IL-7) and Michael Burgess, MD (R-TX-26) introduced a bill (H.R. 6216, Sickle Cell Disease Comprehensive Care Act) to improve access to comprehensive, high-quality outpatient care for individuals living with sickle cell disease (SCD) who are enrolled in Medicaid.

A Centers for Medicare and Medicaid Services (CMS) report found that approximately 50% of individuals living with SCD in the United States are covered by Medicaid. Currently, many individuals living with SCD face barriers to appropriate, quality care such as a shortage of specialized providers, a lack of coordination among health care providers, and challenges relating to health insurance cost and coverage.

In recognition of these barriers to care, the new bill directs CMS to create a Medicaid demonstration program to improve access to comprehensive, high-quality outpatient care for individuals living with SCD, including clinical, mental health, and support services. The bill seeks to bolster access to primary and preventive services in participating states by providing reimbursement for care coordinators, community health workers, and other non-traditional service providers, with the goal of developing individual patient-centered care plans.

In selecting states for participation in the dem­onstration program, priority will be given to those states that also participate in the CDC SCD Data Collection program or precursor programs, as well as states with a high prevalence of individuals living with SCD. If passed, the legislation would establish full federal reimbursement for services and care coordination provided under the demonstration program.

For several years, the American Society of Hematology (ASH) has worked with members of Congress to educate them about the issue of lack of quality care for individuals living with SCD, as well as to advocate for Medicaid payment models such as the one introduced in the new bill. ASH has also engaged with a number of other SCD partner groups about the bill, and in September 2021 led a group of 40 SCD stakeholder groups in sending a letter to Representatives Davis and Burgess and Senators Cory Booker (D-NJ) and Tim Scott (R-SC) to encourage them to introduce it.

“We applaud Representatives Davis and Burgess for acknowledging and addressing the problem of lack of comprehensive care for individuals living with SCD,” said 2021 ASH President Martin S. Tallman, MD, of Memorial Sloan Kettering Cancer Center. “ASH will continue to work with SCD champions in the Senate and we are hopeful that a companion bill will soon be introduced. We encourage other members of Congress to join them in this important legislation.”

He continued, “ASH has long recognized and worked to address the urgent need for change in the state of care for individuals with SCD through the multi-faceted Sickle Cell Disease Initiative. We are pleased to see that our ongoing advocacy efforts have helped bring this issue to the forefront for policymakers, and we commend our Congressional champions for working in a bicameral and bipartisan manner to better the lives of people with SCD.”

The introduction of the new bill, which would provide an organized approach to primary and preventive care for individuals with SCD, is a crucial first step toward improving outcomes for the SCD community.

Learn more about this milestone and other ASH advocacy efforts at hematology.org/advocacy.

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