• MPNRF | February 19, 2016

    February 19, 2016

    Medicare has (somewhat) come through for people with Myelofibrosis by agreeing to provide coverage for those who qualify and are in need of a Stem Cell Transplant. After a process to petition them which included an initial ruling that would have put patients into randomized clinical trials, they have agreed to provide coverage with the following conditions:

    • Patients must be diagnosed with myelofibrosis and have a Dynamic Prognostic Scoring System ingermediate-2 or High primary or secondary MF score
    • Patients must agree to participate in a prospective clinical study to evaluate their outcomes vs patients with the same score who are not undergoing a Stem Cell Transplant

    The caveat is that the study will take approximately one year to open up. For patients in need of a transplant now, you should have your doctor or hospital administrator speak to the local Medicare contractor on the basis of this new ruling as there may be a work around.

    Be the Match and the National Marrow Donor Program led the initiative based on their successful track record getting SCT covered for Myelodysplastic Syndromes. The MPN Research Foundation was proud to offer assistance and collect patient testimonials about this issue. A thank you should go to the patients and their friends and families who took the time to submit their comments to CMS as well as some who reached out to their local representatives and senators who in turn added their voices.

    Be the Match has a team member looking into past decisions made by Medicare with the hopes of forcing the creation of an interim study or some kind of mechanism to provide coverage while the trial gets off the ground in the next year.

    Since transplantation in myelofibrosis has been studied already and this isn’t a new intervention or drug, the purpose of the trial is to harvest data. The mechanism to collect this data is already in place in centers across the country. For each of those that a transplant center fills out, they are reimbursed for providing information back to CIBMTR Center for International Blood and Marrow Transplant Research. Centers that can get smaller studies going now would allow patients to get coverage.

    You can read Medicare’s decision memo here: