MPNRF’s advocacy

Our work doesn’t end with funding research. These are some of the ways we have helped with policy changes related to MPN


  • Signed on to letter requesting updates to the oversight framework for diagnostic tests, which would provide better consistency between labs in how patients are tested. January 2017
  • Assisted Be The Match / American Society for Blood and Marrow Transplantation in their efforts to extend Medicare coverage to stem cell transplants for people with Myelofibrosis. Click here to read CMS’ decision memo. January 2016
  • Supported the petition to lower the cost of drugs. August 2015
  • Sent patient volunteers of MPNRF participated in the OVAC Lobby Day June 2015
  • As member of OVAC (One Voice Against Cancer), we support increasing federal funding for cancer resarch.
  • Successfully requested inclusion of MPN’s in SEER data and more accurate ICD.9 codes to promote more accurate counts of the number of MPN patients nationally.
  • Succesfully convinced insurance company Cigna to cover Pegasys for MPN patients while continuing to pursue other insurers
  • Co-funded a Yale epidemiology study determining the total numbers of Polycythemia Vera and Essential Thrombocythemia patients in America.
  • Ongoing investigation of reimbursement issues faced by MPN patients including the initiation of inclusion of MPN non-FDA treatments in Compendia used by insurance companies when deciding reimbursement issues.

Take the steps you need to help change your prognosis.