• I just submitted my first public comment ever to the Centers for Medicare and Medicaid Services (CMS), the body that governs what is covered by Medicare and Medicaid. By the time you finish reading this I hope you’ll decide to follow suit. 

    In my position at MPN Research Foundation I have had the opportunity to interact with many myelofibrosis patients, as well as people with polycythemia vera and essential thrombocythemia. Patients face anxiety about what the future holds for them as they struggle with MF, for which there is only one cure that works for a portion of the population: a hematopoetic cell transplant.

    There is data to back this up, and also there’s stories like Ron’s. 

    Right now, there is no standing rule that Medicaid will cover the costs of a Stem Cell Transplant for people living with Myelofibrosis. Without guarantee that this is covered, patients and hospitals face severe financial risk that has already kept people from getting a SCT even though their physicians recommend it

    Medicare should be encouraged to explicitly cover transplant for myelofibrosis. Be the Match and the American Society for Blood and Marrow Transplantation (ASBMT) have lobbied CMS to open a National Coverage Analysis on coverage for Myelofibrosis. 

    This is where you come in. We are joining with Be the Match and ASBMT to encourage the public – YOU – to submit a comment to CMS about why it is important to MF patients seeking care they and their doctors decide they need. This is a chance to tell your story. Put in your own words why this is unjust. Click here* to submit your comment before the deadline – May 30th.

    *This deadline has passed.

    Background on the topic from the Medicare site

    Request letter submitted by Be the Match and ASBMT

    If you have any questions or comments get in touch at 312-683-7243 or