MPN Voice needs your feedback to support an application to the Scottish Medicines Consortium (SMC)

[Mazcd]

We URGENTLY need your help and feedback to support an application to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib (Jakavi) to PV patients living in Scotland.

But we want to hear from you if you have PV regardless of where you live or whether you have had Ruxolitinib (Jakavi). This decision will initially only affect patients in Scotland but it’s important for patients who live elsewhere, e.g. Ruxolitinib (Jakavi) is not approved by NICE in England for PV.

Ruxolitinib (Jakavi) is a treatment for PV patients who have failed or are intolerant of first line therapy with Hydroxycarbamide (Hydrea or Hydroxyurea). The drug is effective in treating PV and in clinical trials has improved patients’ quality of life.

Ruxolitinib (Jakavi) is not currently available to PV patients except via a clinical trial, there was a scheme to make it available for free from Novartis but this has stopped.

MPN Voice, with the help of Prof Claire Harrison, is co-ordinating a submission on behalf of MPN patients to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib (Jakavi) to patients living in Scotland. The decision affects patients outside of Scotland so we are asking ALL PV patients, regardless of whether or not they have received Ruxolitinib (Jakavi) or whether or not they live in Scotland, to complete a questionnaire about symptoms etc, which will provide information for the submission. Please do not complete the questionnaire if you have ET or MF.

There is also a questionnaire for family members and carers to complete, as we would like to know their views as well, more than one person in your family can complete the questionnaire, but only if you have PV, they cannot complete it if you have ET or MF.

You do not have to live in the UK to complete the questionnaires. All replies are anonymous.

The deadline for completing the questionnaires is: WEDNESDAY 28th AUGUST 2019

Click on each link to access the questionnaire

Patient questionnaire

surveymonkey.co.uk/r/7R838MH

Family members and carers

surveymonkey.co.uk/r/7PLFL9P

We would like to thank you for your participation.

[piggie50]

All done Maz, let’s hope if it’s agreed in Scotland the rest of the UK will follow. x

[Munster5]

Done 👍

[Yvette49]

Hi Maz it won’t let me type ?

Yvette X

[Mazcd Partner MPNVoice in reply to Yvette49]

Hi Yvette, what are you using i.e. iPad, phone, laptop, PC? Maz

[Yvette49 in reply to Mazcd]

Ah yeh, an iPad!!! I will have a go on our computer 👍

[Mazcd Partner MPNVoice in reply to Yvette49]

You can use an iPad but you might need to tap twice on each of the answer boxes so that your keypad is displayed, if that is the problem you are having.

[Yvette49 in reply to Mazcd]

Ok thanks will try that...or I will be on my computer 😊 X

[Kdavie12]

Hello Maz, initially I was diagnosed with ET which morphed into PV,

can I still fill in the questionnaire and if yes, from the beginning of the

disease? Thank you

[Mazcd Partner MPNVoice in reply to Kdavie12]

Hi Kdavie, yes you can still fill in the questionnaire as you have PV and just say how long you have had your PV. Maz

[Kdavie12]

Thank you so much! Done 😊

[carlyjo]

Completed 👍

[S031251]

All done Maz. I had not heard that Novartis has stopped this free drug - when was this? My heart missed a beat when I read that!!

[Mazcd Partner MPNVoice in reply to S031251]

It is only stopped for patients who will start new. For patients who are currently taking it it will continue to be free.

[S031251 in reply to Mazcd]

Thanks so much Maz for the reassurance

[Jacqx17]

Hi Maz I’ve only just seen this from a friend on Facebook!

I’ve completed it but just wondering if you or I (not sure how to do it tho) should bump this post to see if other PV’ers have missed it and want to fill it in?

Seeing as deadline is today

Best wishes

Jacqui 😊

[Mazcd Partner MPNVoice]

Hi Jacqui, thanks for completing the survey and sorry I didn't reply to this message yesterday, thank you for the offer to push it to other people, we have had an amazing response to the survey so have lots of good feedback to support our application. Kind regards Maz