We need your help and feedback to support an application to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib (Jakavi) to patients living in Scotland
Ruxolitinib (Jakavi) as a treatment for disease related splenomegaly (enlarged spleen) or symptoms in adults with primary myelofibrosis, or myelofibrosis secondary to polycythaemia vera or essential thrombocythaemia has significantly improved the lives of patients affected by myelofibrosis and in many cases this improvement is dramatic with long lasting tangible benefits. There is now increasing evidence that Ruxolitinib therapy also prolongs survival in this difficult disease where we have previously had very limited options.
Ruxolitinib is currently available to patients in England, via the NHS, if they are enrolled on the MAJIC trial or via the Cancer Drug Fund. Scotland, N Ireland and Wales follow a different route for prescribing Ruxolitinib.
MPN Voice, with the help of Dr Mira Farquharson and Prof Claire Harrison, are co-ordinating a submission on behalf of MPN patients to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib to patients living in Scotland. If you are taking Ruxolitinib the team would like you to complete a questionnaire to gather information on the effects/changes that taking Ruxolitinib has made to you in your day to day life. We would also like your family members/carers to complete a questionnaire which will provide information for the submission on the changes they have seen since you started taking Ruxolitinib and the affect this has had on them.
Please use the links below to download the questionnaires, all completed questionnaires must be returned by 18th July 2014, you can email them to firstname.lastname@example.org or by post to the address on the top of the questionnaire. If you are unable to download or print the questionnaires we can email or post copies to you, email us at email@example.com and please include your full postal address if you require a copy to be posted to you.
We would like to thank you for your participation in this survey.
Patient questionnaire - mpdvoice.org.uk/wp-content/...
Family/carer questionnaire - mpdvoice.org.uk/wp-content/...