We have some important and very welcome news to share with you about a new drug for myelofibrosis patients. After a long and complicated appraisal process, the National Institute for Clinical Excellence (NICE) has decided that fedratinib is to be made available to the NHS. The drug, to be distributed under the name Inrebic, is the first new therapy for MPN patients in over a decade and will be an important treatment option for MF patients if their existing ruxolitinib (Jakavi) treatment becomes less effective.
MPN Voice has been involved in the appraisal of fedratinib from the start – we made a detailed written submission supported by quantitative data gathered from the patient community and were superbly represented at the NICE committee meeting by Caroline Thomas and another MF patient, whose personal experience of participating in the clinical trial process was an important aspect of the NICE decision. The UK MPN community as a whole has also played an important role in the appraisal – the surveys that MPN patients have always responded to in impressive numbers have provided demonstrable proof of the impact that MF can have on patients and their families’ lives.
As we often do with Health Technology Assessments (HTAs) like this, we collaborated with our colleagues at Leukaemia Care, whose experience of the processes involved was extremely valuable.
This milestone in the evolution of MPN treatment has demonstrated the value of the patient voice in the drug appraisal process and we look forward to participating in future appraisals as more and more therapies are developed to improve our lives.