Scottish orphan drugs fund launched.

[ETphonehome]

bbc.co.uk/news/uk-scotland-...

[JediReject]

Cheers Buddy. The new drug Ruxolitnitib could now be accessible as it is in the UK via Cancer Drug Fund. NHS funding is currently being considered by NICE but it doesn't look promising due to the high annual cost of around 40-42K. For anyone interested info' can be found under Myelofibrosis on the nice.org.uk site.

Cheerz

[JediReject]

Hi folks - I meant in England not the UK , silly me. Also for those interested, on the homepage of the nice website there is a section headed 'Consultations'.

Click on 'see all our consultations' and a list will be displayed.

Scroll down to 'Myelofibrosis - splenomegaly symptoms - ruxolitinib appraisal consultation'

Theres loads of info' some technical stuff and some submissions from invitees answering a range of questions about the drug.

[beetle]

This Scottish fund is apparently going to apply to drugs that have been given the thumbs down by the Scottish Drugs Consortium. However, in the case of Ruxolitinib, SMC have not even considered it yet and it is not even on the list for consideration in the nex 2/3 months. The whole situation is very frustrating when in my postion where HU is starting to be less than effective and I have had an initial consultation for BMT and a worldwide search for a possible match has revealed only four potential donors - and they are only initial matches and may still prove to be less than the 10/10 required. My sister is my last hope as she hasn't been tested yet. I now just need to asscess Jakafi SOMEHOW!!!

[JediReject]

Thanx for that update beetle i'm sorry it won't be available to you in the short term. I would reckon a shot at the drug would be preferable to the BMT with the risk it carries. But in the meantime let's hope your sister comes up trumps. I can fully appreciate your position and frustration. .keep yer chin up . . .

[light in reply to JediReject]

I am praying for you whatever outcome is going to be perfect.

[nicki2]

i think it will be hard to get drugs if scotland get independence i think it will be a postcode lottery does anybody else think the same as a there was a woman who had to sell her house and move to england to enable to get the proper drugs which is a shame that people have to do that to afford proper treatment