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
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.