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ASH Pleads for Payment Innovation in Rare Diseases Such As Sickle Cell Disease

As part of the American Society of Hematology’s (ASH) multifaceted initiative to address the burden of sickle cell disease, ASH is in the process of working with stakeholders to improve access to care for individuals with sickle cell disease. Included in this effort is the April 11, 2016 letter sent to Patrick Conway, MD, the Chief Medical Officer and Principal Deputy Administrator of the Center for Medicare and Medicaid Services (CMS). Dr. Conway oversees the Center for Medicare and Medicaid Innovation (CMMI), a branch of CMS created by the Affordable Care Act in 2010. CMMI received $10 billion in funding over ten years and is charged with creating and implementing payment models that differ from traditional healthcare fee-for-service. CMMI has created more than 50 different payment and delivery models since that time, such as bundled episodes for hospitals and the Oncology Care Model.

In the letter, ASH congratulates CMMI on their many endeavors to address payment reform but expresses concern that individuals with rare diseases such as sickle cell disease may be left out of this reform. 

Many experts believe that the care of individuals with sickle cell disease 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. In its letter, ASH outlines a potential payment plan that would make an entity responsible for the costs associated with sickle cell disease and encourages CMS to take responsibility for those who have been poorly served by the existing system and largely ignored by potential reforms.

ASH will continue to work with CMMI and others to encourage the development of payment models that focus on rare disease, particularly on sickle cell disease.