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Clare Dempsey Aug 15
Today marks 1000 days since was licensed for use in the U.K. Since then, 200 young lives have been lost to Cystic Fibrosis whilst and refuse to reach an agreement on pricing. Heartbreaking for all families living with this devastating disease
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Teresa Aug 15
A huge thank you for covering brave Luis’s desperate plight to get & to give him a brighter future with & pipeline drugs, these drugs are available in 🇮🇪
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Teresa Aug 15
you know received 1,000 letters from children pleading 4 their lives She promised a ‘Speedy Resolution ‘ 11 wks ago, it is 1000 days today since was licenced & young lives are dying as we speak, she has ignored their cries for help
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dani Aug 15
Today marks 1000 days since was approved for use in the EU yet it is STILL not available on the NHS because it is “too expensive” so this Sunday I will be hosting a walk up in North Wales in protest with around 20-30 people. Stop putting a price on our lives!
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ORKAMBI NOW 22h
Hello everyone, welcome to my twitter page! Quick intro, I’m 16 and have cystic fibrosis. My lung function is around 75% at the moment and I was told I could have over 3 years ago...it’s still not legalised. This page is to spread awareness of the drug!
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Christina Walker Aug 13
'Dear Mrs Hunt..If your son had cysic Fibrosis I know you understand and lower the price of Orkambi' If only the World were as simple as it seems through the eyes of an 8 year old
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Pamela Mathieson Aug 15
Hi your collaborator has done a wonderful thing bringing to market. It has now been licenced for 1000 days in the EU yet in that time >200 people w/ CF have died in the UK because Vertex have done a despicable thing by putting profit over lives.
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David Turner QC Aug 15
It's now 1,000 days since was licensed for use in the EU. Since then, ~200 potentially eligible cystic fibrosis patients have died in the UK while & fiddle and blame each other. Their behaviour is a continuing disgrace
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Nicola Johnson Aug 14
I’ve been so hopeful that our hard work will keep him well so when comes it will stabilise him where he is now. But with each day, each of the last 1000 days, that positive outlook is being scratched away piece by piece.
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Cystic Fibrosis Trust Aug 15
Today marks 1,000 days since was licensed in the , yet the fight for still continues. What has happened in 1,000 days since then? Tell your health minister your story, using the Twitter handles below.
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Strawfie Challenge Aug 14
Big media day planned tomorrow (Wed) for We need everyone on social media, watch Listen from 7.35am, , maybe - Keep checking social media this evening, we might have some actions for you to join in with.
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ClaireW Aug 15
Thank you 4 covering campaign today. There were many Cfers, Cf Parents/Grandparents & siblings all watching delighted that had given us a platform 2 urge to get their heads together & make an urgent deal
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Carl Rosekilly 6h
Replying to @CKRosekilly30
Gaining access to would be the starting point of access to these other precision medicines. It would be the start of an amazing journey. In the meantime we all have to sit there as the pharmaceutical train whizzes by & we struggle from day to day.
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Debbie Tierney 5h
Replying to @GavinBarwell
I hope my child can do A levels, only 70% attended this last academic year. cuts hospital stays by 61%. Decline by at least 42%. Would you want your child to have it, if you were me? Would you be banging on the PMs door?
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@vertexpharma
Strawfie Challenge Aug 15
We have collectively been beseeching This Morning to cover campaign on their programme for years. We need as many share of this Facebook post as possible so they will know people are interested and maybe cover again in the future?
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victoria 19h
1000 days since was licensed for use in EU & during that time my sons lung functions have declined, has a feeding tube and has a nasty bug called NTM help him have a future 🙏🙏🙏
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ClaireW Aug 11
Matt Hancock please provide for the forgotten children under Government, instantly lowering the need for life saving transplants for patients - no brainer
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Light Bulb Moments Aug 14
I hope common sense and good judgement prevail on Friday Greg Hunt MP & Vertex Pharmaceuticals, and you finally allow access to the lifesaving medication to those with who need it....
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ClaireW Aug 15
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Pamela Mathieson 3h
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