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Nicola Johnson
@JohnsonMNicola
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15h |
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The #Orkambi campaign is driving me crazy. I dreamt last night that I was on a bus sat next to @MattHancock. 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
@firenicefly
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Dec 7 |
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Is it really surprising @theresa_may 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 & @theresa_may, no more on #Orkambi? No?
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Christina Walker
@Guatemalagirl
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Dec 7 |
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Re-engage & submit new data so @NHSEnglandNMD offer can reflect proven clinical benefit of #OrkambiNow which is very different to July 2016 @VertexPharma #Orkambi Petition: NHS supply new lifesaving drugs for Cystic Fibrosis like 11 other EU countries petition.parliament.uk/petitions/2316…
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Elizabeth S. Eaton
@LaboratoryLiz
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9h |
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U.K. Gov responds to a #petition for @NHSEngland to cover #orkambi by backing @NICEcomms' appraisal process, says @VertexPharma 's #cysticfibrosis drugs need to be priced reasonably twitter.com/BioCentury/sta…
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French Will #OrkambiNow
@RealFrenchWill
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Dec 9 |
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See this @MattHancock ? This young woman with CF is now a Doctor, thanks to #Orkambi!! Please get your act together and get all pwCF access to #PrecisionMeds4CF #OrkambiNow
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French Will #OrkambiNow
@RealFrenchWill
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23h |
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So @vrtx take the deal now so you can start earning otherwise it may be 4-5 years without #Orkambi or #Symkevi revenues... twitter.com/GreatStrides65…
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Craig Vallance-Alexander
@craigvallance
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16h |
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@VertexPharma when will you be resubmitting to Scottish medicines consortium regarding #Orkambi - Every #CysticFibrosis sufferer lost while you fail to do so is unacceptable. This needs urgently reviewed!
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Simon J Green
@simonjongreen
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Dec 5 |
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I've had a few UK activists reach out for support in their fight for #Orkambi. 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
@PamelaMathieson
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18h |
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The #CysticFibrosis community shouldn't have to create yet another government petition to try to get access to #PrecisionMeds4CF like #Orkambi yet here we are, begging for your assistance again. Pls sign & remember to check your email for link to confirm: petition.parliament.uk/petitions/2316…
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Pamela Mathieson
@PamelaMathieson
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17h |
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Come on @VertexPharma 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. #orkambi twitter.com/jackiebmsp/sta…
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Nicola Johnson
@JohnsonMNicola
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12h |
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Really pleased for you Carl! Come on @NHSEngland @NICEcomms @MattHancock surely everyone who could benefit from #Orkambi should be given the chance of good health BEFORE LF dips to dangerous levels. Do a deal with @VertexPharma before more lives are lost. twitter.com/CKRosekilly30/…
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Gail Nestel, Canada
@Gail_F_Nestel
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Dec 4 |
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At least they have been negotiating for #Orkambi There is a class action suit underway in Canada against the Federal and Provincial Governments’ lack of willingness to negotiate. See @macleodscanada @CambridgeLLP
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Firenicefly #GTTO #Orkambi #cysticfibrosis
@firenicefly
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Dec 7 |
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@jeremycorbyn 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 #cysticfibrosis drug #Orkambi 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
@Gail_F_Nestel
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Dec 2 |
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Rare conditions like #cysticfibrosis can’t get access to a 250,000 drug like #Orkambi #cdnpoli is being sued for that. Similarly, This: theworldnews.net/ca-news/ont-ma… @fordnation won’t help The patient has a #GoFundMe page. But @MeghanMcCain @TheView is ill informed on majority access
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Carl Rosekilly
@CKRosekilly30
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14h |
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ClaireW
@claireywilzz
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Dec 9 |
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You’ve forgotten about these beautiful people and all they have to give to Britain’s future. It’s a national disgrace. #Orkambi #CFPrecisionMeds #OrkambiandCFDrugPipeline @NHSEngland @NICEcomms @cftrust @BrineMinister pic.twitter.com/lqCtV6YIth
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my CF Hero
@myCFHero
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Dec 9 |
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We also need the best medicines for what would be treatable, manageable diseases like #CysticFibrosis -without #PrecisionMeds4CF 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 #Orkambi pic.twitter.com/W4YJ6W0CZM
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Pixie and The Gypsies
@taylornotcutt
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Dec 9 |
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Check out this video I made to raise awareness for the CF community and the life changing drug #Orkambi which is not available in the UK
We want this to change! @strawfie @CF_Foundation #BreatheWithMe ❤️ youtu.be/UTiy3STzQnU #NoMoreCFangels #OrkambiNow #CF #music #song
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Joanne Osmond
@Joanneosmond
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Dec 6 |
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Symkevi | European Medicines Agency Licensed in #EU just as #Orkambi but ppl w #cysticfibrosis denied access - immoral & cruel. If #UKGov @MattHancock faced very sick #PWCF day in day out I’m sure they’d free the deadlock @fight4orkambi ema.europa.eu/en/medicines/h…
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Health and Social Care Committee
@CommonsHealth
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Dec 6 |
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The Committee has received documents from @VertexPharma @NHSEngland and @NICEcomms relating to its inquiry into the availability of #Orkambi on the NHS and is currently assessing them before considering any further action.
Read here: parliament.uk/business/commi…
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