Medicare Coverage for Sickle Cell Disease

Posted May 21st, 2015 by Be The Match and filed in News
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Early in 2015, the National Marrow Donor Program® (NMDP)/Be The Match® and the American Society for Blood and Marrow Transplantation (ASBMT) submitted a formal request to the Centers for Medicare and Medicaid Services (CMS) for expansion of the current list of diseases for which Hematopoietic Cell Transplant (HCT, also known as blood and marrow transplant) is expressly noted as covered and reimbursable. Several diseases were on this request, including Sickle Cell Disease, Myelofibrosis, Lymphoma and Multiple Myeloma.

The NMDP and ASBMT submitted a coverage request for these diseases to increase access to care. Medicare does not indicate that these diseases are either covered or non-covered and this lack of clear coverage puts a patient, and the hospital treating him or her, at severe financial risk if Medicare denies the reimbursement claim after the procedure is complete.

While Medicare primarily serves people age 65 years and older, about 15% of those covered are younger adults who have a disabling illness, such as sickle cell disease. In addition, other payers and insurance plans, including state Medicaid programs, often match their coverage to Medicare.

CMS has agreed to open a National Coverage Analysis (NCA) for two of these diseases now – Sickle Cell Disease and Myelofibrosis. There is a public comment period open from now until May 30, 2015.

How you can help: Please visit the Medicare website on this topic, read the materials and follow the instructions on how to submit a comment. Comments can be simple and to the point; complexity is not required. Please note – the quality of comments is more important than sheer quantity. 

Suggested content for comments:

Identify what type of stakeholder you are: patient, caregiver, advocate, etc.

Identify if your comment is in regards to transplant for Sickle Cell Disease or Myelofibrosis, or both.

Share your story: Tell CMS about your experience with transplant and sickle cell disease. If you experienced a lack of insurance coverage, explain the barrier that created and how it may have impacted you personally.

Comments are due by May 30, 2015. These comments are extremely important to the process and are taken seriously by the Medicare coverage team. Your input will be crucial to the success of this initiative to make transplant accessible to more Medicare beneficiaries.

Please feel free to contact Alicia Silver with questions regarding the National Coverage Analysis: For other questions regarding our patient resources and services you can call 1 (888) 999-6743 or email us at

Thank you for your help!

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