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ASH President Commends Reintroduction of Sickle Cell Disease Medicaid Demonstration Program

Congress reintroduced a bill this week that increases access to comprehensive primary and preventive care for individuals living with sickle cell disease

(WASHINGTON, March 22, 2023) – Yesterday, congressional sickle cell disease (SCD) champions reintroduced the Sickle Cell Disease Comprehensive Care Act in the House and Senate (H.R. 1672 / S. 904). The legislation addresses a critical need for high quality comprehensive outpatient care for individuals living with SCD who are enrolled in Medicaid.

SCD is the most common inherited red blood cell disorder in the United States, affecting an estimated 100,000 people. According to the Centers for Disease Control and Prevention (CDC), SCD affects one out of every 365 Black or African American births and one out of every 16,300 Hispanic American births. Individuals with SCD suffer from acute pain episodes and chronic pain and may be affected by an array of other organ complications, which can cause disability or even death. 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.

The launching of a new Medicaid demonstration program by CMS would enable people with SCD to access necessary primary care from providers with specialized training on treating their condition. This bill also ensures a multi-faceted approach to care, providing reimbursement for clinical, mental and community health, and support services. Such reimbursement is critical to maintaining holistic patient-centered medicine.

The American Society of Hematology (ASH) has collaborated with members of Congress to educate policy makers on the issue of access to quality care for individuals with SCD, and to advocate for coverage of essential care services for those insured by Medicaid. ASH has a long record of advocating for the Sickle Cell Disease Comprehensive Care Act and other sickle cell priorities as part of the Society’s multi-faceted Sickle Cell Disease Initiative.

In response to the introduction of the legislation, ASH President Robert A. Brodsky, MD, of Johns Hopkins University Medical Center issued the following statement:

“A lack of access to quality, comprehensive care remains an urgent issue for individuals living with SCD, and we commend members of Congress for their unwavering commitment to legislation that addresses this problem.

This bill proposes coordinated efforts to increase access to specialized, primary, and preventive 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, Representatives Davis and Burgess, and other members of Congress to optimize care for people living with SCD.”

ASH Sickle Cell Disease Resources

The American Society of Hematology (ASH) (www.hematology.org) is the world’s largest professional society of hematologists dedicated to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. For more than 60 years, the Society has led the development of hematology as a discipline by promoting research, patient care, education, training, and advocacy in hematology. ASH’s flagship journal, Blood (www.bloodjournal.org), is the most cited peer-reviewed publication in the field, and Blood Advances (www.bloodadvances.org) is an open-access, online journal that publishes more peer-reviewed hematology research than any other academic journal worldwide.

Kira Sampson, American Society of Hematology
[email protected]; 202-499-1796