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ASH Supports CMMI’s Cell & Gene Therapy Access Model for Sickle Cell Disease

(WASHINGTON, January 31, 2024) – The Centers for Medicare & Medicaid Innovation Center (CMMI) published the Cell & Gene Therapy (CGT) Access Model for Sickle Cell Disease, which aims to improve access to gene therapies treatments for people with Medicaid living with sickle cell disease (SCD). 

This model comes after the U.S. Food and Drug Administration's (FDA) recent approval of Casgevy and Lyfgenia, gene editing therapies for SCD – the first approvals of a new class of drugs.  

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, SCD affects one out of every 365 Black or African American births and one out of every 16,300 Hispanic American births.

ASH President Dr. Mohandas Narla, of New York Blood Center Enterprises, issued the following statement:

“ASH commends CMMI for taking this monumental step to promote access to novel gene therapies for individuals living with SCD.

We recently celebrated the approval of the first gene therapies for SCD, a significant step forward for the SCD community. However, we also voiced concerns regarding the high cost of these treatments and are glad to see CMS trying to address this issue with the development of this model.

While supporting the model, ASH continues to stress the importance of comprehensive care to fully optimize health outcomes for the SCD community. The Society commends CMMI for incorporating coverage of fertility preservation services, travel expenses, case management, and behavioral health services into the model’s framework, and continues to advocate for increased access to all available treatments and interventions for those living with this blood condition."


The American Society of Hematology (ASH) (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 (bloodjournal.org) is the most cited peer-reviewed publication in the field, and Blood Advances (bloodadvances.org) is an open-access, online journal that publishes more peer-reviewed hematology research than any other academic journal worldwide. Two new journals will be joining the Blood Journals portfolio in 2024, Blood Neoplasia (bloodneoplasia.org) and Blood Vessels, Thrombosis & Hemostasis (bloodvth.org).  


Kira Sampson, American Society of Hematology 

[email protected] 202-499-1796