ASH Pleads for Payment Innovation in Rare Diseases Such As Sickle Cell Disease
Published on: April 12, 2016
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
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.
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