We are very pleased to announce that following a full submission made to the SMC (Scottish Medicines Consortium), a decision has been made to accept Ruxolitinib (Jakavi) for use by NHS Scotland for patients with PV (polycythaemia vera) who are intolerant to, or cannot be treated with Hydroxycarbamide.
The SMC full Detailed Advice Document regarding this decision can be read here on the SMC website.
scottishmedicines.org.uk/me...
This is very exciting news for PV patients living in Scotland, who cannot be treated with Hydroxycarbamide or where it has not worked.
What does the SMC’s decision mean for PV patients?
If your healthcare professional thinks that Ruxolitinib for use as described above is the right medicine for you, you should be able to have your treatment on the NHS in Scotland. For further information see: Medicines in Scotland: What’s the right treatment for me? healthcareimprovementscotla... or speak to your consultant haematologist or haematology nurse specialist.
How was this decision made?
MPN Voice asked for your help and feedback in August to support an application to the SMC regarding the prescribing of Ruxolitinib (Jakavi) to patients living in Scotland, as it was only available to PV patients via a clinical trial. We also asked for feedback from family members and carers.
MPN Voice, with the help of Prof Claire Harrison, Guy’s Hospital, co-ordinated a submission on behalf of Scottish MPN patients to the SMC. The feedback and comments we had from both surveys formed part of the submission document, and proved invaluable in demonstrating to the SMC the debilitating symptoms that affect PV patients, and the impact it has on quality of life and that Ruxolitinib is superior to the best available therapy in controlling these symptoms, and therefore improving PV patients’ lives.
Following the submission, a Patient and Clinical Engagement (PACE) meeting was held with the SMC to discuss the submission in greater detail, a representative from MPN Voice, with Prof Harrison, took part in this meeting, and were able to give more examples from the survey feedback to the board.
Submissions and representation at the PACE meeting were also made by Leukaemia Care and Bloodwise. We would like to thank both organizations for their input and collaboration in this very important milestone for PV patients.
And we would like to thank all of you who took the time to answer the questions in the two surveys, because without your help our submission would not have been so strong, so well done to all of you, and thank you.
Combined ruxolitinib and pegasys therapy for MF and PV gives great results. Danish phase 2 study Jan 2020 ( ruxopeg) 
Are patients with PV entitled for Free Prescriptions?
