ASH Pushes for Payment Reform for Rare Diseases, Namely Sickle Cell Disease

As part of a multifaceted initiative to address the burden of sickle cell disease (SCD), the American Society of Hematology (ASH) sent a letter on April 11 to Patrick Conway, MD, the chief medical officer and principal deputy administrator of the Center for Medicare and Medicaid Services (CMS), outlining the importance of addressing payment reform at the Center for Medicare and Medicaid Innovation (CMMI) and expressing concern that the care of individuals with rare diseases, such as SCD, is being left out of this reform.

“Many experts believe that the care of individuals with SCD is in part hampered by a payment system that does not reward ongoing care of individuals with difficult chronic diseases, particularly when individuals with that disease are more likely than not to be covered by Medicaid,” according to an ASH policy write-up posted on the ASH website.

In the letter, ASH outlined a potential payment plan that would make an entity responsible for the costs associated with SCD and encouraged CMS to take responsibility for those who have been poorly served under the existing payment system.

ASH said it will continue to work with CMMI and other organizations to encourage the development of payment models that focus on rare diseases, particularly SCD.

Source: ASH Policy News, April 12, 2016.