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Fire N Ice Fly #GTTO #cysticfibrosis #CFMeds Feb 15
Replying to @VertexPharma
As lovely as the sentiment is, it doesn't change the fact that over 220 sufferers eligible for have died here in the UK due to the stalemate of negotiations. I don't blame one side, I blame both & my fear is the same will happen for pipeline meds
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Carlie: Motherhood vs Cystic Fibrosis Feb 15
I think we’ve all done really well these past few weeks with keeping CF in the media and it’s worked, now we have to hope the talks point us in the right direction. Well done team 👏🏻 etc...
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Strawfie Challenge Feb 10
Please sign the petition to help UK cystic fibrosis community access life saving precision medicines like
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John Schroeder Feb 15
It’s been an EXCELLENT week. You all are AMAZING!! I’ve seen more British magazine articles on in the past week than I’ve ever seen before!!!! AWESOME!!
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Chloe Knibbs Feb 13
Replying to @ChloeKnibbs1
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Jonathan Ashworth Feb 4
is a life-changing medicine for people with cystic fibrosis & experts calculate it could be profitably sold for £5000 but manufacturer Vertex is charging £104,000 per patient per year. Ministers should look at Vertex's monopoly so a generic version can be bought by NHS
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Carlie: Motherhood vs Cystic Fibrosis Feb 15
So you’re scrolling through your twitter feed and now you’re reading my tweet...Hi!😀👋🏻 go one step further and sign our petition👇🏻 & then you would have done your good deed for the day. Thank you, it’s really appreciated
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Strawfie Challenge Feb 11
Have you received your letter from 5-year-old Ivy and asking you to take the 60 second straw breathing challenge, to see what UK CF patients face if they can't have access to modulator drugs like ? See here:
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Oli Rayner Feb 4
.’s ‘final offer’ for is effectively £10k/person/yr. This is no more than what it pays for existing meds which merely thin mucus or damp down infection. This says to people with CF “we don’t care about your future”. It’s disgusting.
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Health and Social Care Committee Jan 24
We are holding a session on the availability and pricing of and other drugs manufactured by Vertex on the NHS and we are inviting written submissions. Read more here:
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JamesReckons Feb 3
One of the most galling things about this whole saga is how Austria, Germany, Ireland, Italy, Netherlands and Sweden all have access to but Britain has quibbled for years about the price. Why do we put a lower value on the life of a CF sufferer ?
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Jackie Baillie Dec 19
Delighted that have announced that and will be submitted to the SMC. This provides real hope for Cystic Fibrosis sufferers in Scotland. Thanks to Kelli, her mum Maggie, cross party MSPs and . It’s a truly wonderful Christmas present.
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Cystic Fibrosis Trust Jan 28
The UK wants to hear your voice on and access to CF medicines. Find out how you can take part in the Health and Social Care Select Committee’s inquiry on our website.
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Strawfie Challenge Feb 15
MP's is raising awareness about and the fight for
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zo zo Feb 5
Health minister response to Crown licensing "Vertex would have to be compensated following the removal of the patent which is something that would really stick in our throats” sounds personal, competitive an not one bit in the interest of people with CF
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Kate Learoyd Jan 12
NHS appraisal systems continually say patented drugs like and cost more than is merited by their health value or development costs. Logically government should ask to investigate whether abusive pricing is occurring in the sector.
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Jonathan Ashworth Feb 4
Children like 8 year old Luis can’t access a life changing treatment for cystic fibrosis because Vertex, the manufacturer, are charging £104,000 per patient per year. The government must act so the can get it at a fair price.
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RF Hunt ♿️ Jan 23
article about the funding of for will be in The Morning Star tomorrow.
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Emma Robertson 18h
NO Shamima Begum has never been a HUGE story of national interest. There are due processes and they will have to be followed so there is no need for debate. Where is your report on the expense of and the governments lack of action for young CF sufferers??? 🤨
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Oli Rayner Feb 4
. : the healthcare systems of 35 other countries including Ireland and Scotland have found a way to make available to the people who need it. If they can do it, why can’t you?
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