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Nicola Johnson 15h
The campaign is driving me crazy. I dreamt last night that I was on a bus sat next to . I was talking to him, but he didn’t hear me. It was as if I was in a soundproof bowl. When I got up, he said “you won’t have to leave the UK.” Then I woke up! 🤪
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Firenicefly #GTTO #Orkambi #cysticfibrosis Dec 7
Is it really surprising has backed out again? A fair head to head on equal footing puts her at a huge disadvantage because she will be forced to actually answer questions she can't answer with either lying or looking evil. Oh & , no more on ? No?
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Christina Walker Dec 7
Re-engage & submit new data so offer can reflect proven clinical benefit of which is very different to July 2016 Petition: NHS supply new lifesaving drugs for Cystic Fibrosis like 11 other EU countries
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Elizabeth S. Eaton 9h
U.K. Gov responds to a for to cover by backing ' appraisal process, says 's drugs need to be priced reasonably
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French Will #OrkambiNow Dec 9
See this ? This young woman with CF is now a Doctor, thanks to !! Please get your act together and get all pwCF access to
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French Will #OrkambiNow 23h
So take the deal now so you can start earning otherwise it may be 4-5 years without or revenues...
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Craig Vallance-Alexander 16h
when will you be resubmitting to Scottish medicines consortium regarding - Every sufferer lost while you fail to do so is unacceptable. This needs urgently reviewed!
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Simon J Green Dec 5
I've had a few UK activists reach out for support in their fight for . I've given everything within my power to offer! Fight hard, brother and sisters, and give it to Vertex hard and fast! ✊✊🏿✊🏻🌹
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Pamela Mathieson 18h
The community shouldn't have to create yet another government petition to try to get access to like yet here we are, begging for your assistance again. Pls sign & remember to check your email for link to confirm:
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Pamela Mathieson 17h
Come on let’s get this moving again. Securing an arrangement with NHS in one part of the country could help proceedings in the rest of the UK so of benefit to you & the hundreds of people anxiously waiting for the games to end. Time to get the deal done.
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Nicola Johnson 12h
Really pleased for you Carl! Come on surely everyone who could benefit from should be given the chance of good health BEFORE LF dips to dangerous levels. Do a deal with before more lives are lost.
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Gail Nestel, Canada Dec 4
At least they have been negotiating for There is a class action suit underway in Canada against the Federal and Provincial Governments’ lack of willingness to negotiate. See
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Firenicefly #GTTO #Orkambi #cysticfibrosis Dec 7
I completely agree, but I would say no one should go hungry or without a place to live at any time of the year. Also how is now 3 years on & the drug still not being funded, many lives have been lost in 3 years that may have still been here
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Gail Nestel, Canada Dec 2
Rare conditions like can’t get access to a 250,000 drug like is being sued for that. Similarly, This: won’t help The patient has a page. But is ill informed on majority access
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Carl Rosekilly 14h
Had my last clinic appointment of the year today. LF has completely stabilised. Weight is up again. 91 lkg. Only 2kg off my heaviest ever weight. I’ve only had 1 lot of IVs and a handful of orals this year. Thank you I’d have struggled without you.
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ClaireW Dec 9
You’ve forgotten about these beautiful people and all they have to give to Britain’s future. It’s a national disgrace.
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my CF Hero Dec 9
Replying to @MattHancock
We also need the best medicines for what would be treatable, manageable diseases like -without is like using fax machines only! Please don’t spend all the money on tech. Our children’s lives DEPEND on medicines that treat the route cause
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Pixie and The Gypsies Dec 9
Check out this video I made to raise awareness for the CF community and the life changing drug which is not available in the UK We want this to change! ❤️
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Joanne Osmond Dec 6
Symkevi | European Medicines Agency Licensed in just as but ppl w denied access - immoral & cruel. If ⁩ faced very sick day in day out I’m sure they’d free the deadlock ⁦
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Health and Social Care Committee Dec 6
The Committee has received documents from and relating to its inquiry into the availability of on the NHS and is currently assessing them before considering any further action. Read here:
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