AABB Urges Congressional Leaders to Pass SCD Comprehensive Care Act

November 23, 2022

AABB, as part of the Sickle Cell Disease Coalition (SCDC), urged Congressional leaders to include the Sickle Cell Disease (SCD) Comprehensive Care Act (S. 3389/H.R. 6216) in any end-of-year legislative package.

The legislation – introduced by Sens. Cory Booker (D-N.J.), Tim Scott (R-S.C.) and Reps. Michael Burgess (R-Texas) and Danny Davis (D-Ill.)  – would authorize the Centers for Medicare and Medicaid Services (CMS) to develop a demonstration program for Medicaid beneficiaries to improve access to comprehensive outpatient care for individuals with SCD. Booker, Scott, Burgess and Davis proposed the legislation following a request from coalition members last year.

In the Nov. 17 letter, coalition members emphasized that individuals with SCD have been impacted disproportionately by the COVID-19 pandemic and continue to lack access to quality, state-of-the-art outpatient and preventive care. Coalition members believe that an organized approach to primary and preventive care for individuals with SCD is needed to improve the health and quality of life for this population.

“The Medicaid demonstration program proposed in the bill would provide the essential focus needed on specialized and primary care in appropriate outpatient settings,” the coalition members stated. “With the recent publication of clinical practice guidelines in SCD and approvals of new treatments for SCD and more in the pipeline, there is no better time than now to improve the SCD community’s access to state-of-the-art care.”