| Search | Refresh |
|
Clare Dempsey
@ClareDempsey6
|
Aug 15 |
|
Today marks 1000 days since #Orkambi was licensed for use in the U.K. Since then, 200 young lives have been lost to Cystic Fibrosis whilst @NHSEngland and @VertexPharma refuse to reach an agreement on pricing. Heartbreaking for all families living with this devastating disease
|
||
|
||
|
Teresa
@campaign4CFuk
|
Aug 15 |
|
A huge thank you @thismorning @EamonnHolmes @RuthieeL for covering brave Luis’s desperate plight to get @VertexPharma & @NHSEngland @theresa_may to give him a brighter future with #Orkambi #Symveki & pipeline drugs, these drugs are available in 🇮🇪
|
||
|
|
||
|
|
Teresa
@campaign4CFuk
|
Aug 15 |
|
you know @theresa_may received 1,000 letters from children pleading 4 their lives She promised a ‘Speedy Resolution ‘ 11 wks ago, it is 1000 days today since #Orkambi was licenced & young lives are dying as we speak, she has ignored their cries for help twitter.com/dixgovernment/…
|
||
|
|
||
|
dani
@daniblore
|
Aug 15 |
|
Today marks 1000 days since #Orkambi 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 #Snowdon in North Wales in protest with around 20-30 people. Stop putting a price on our lives! pic.twitter.com/dGvwez4IWG
|
||
|
||
|
ORKAMBI NOW
@NowOrkambi
|
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 #Orkambi over 3 years ago...it’s still not legalised. This page is to spread awareness of the drug! @cftrust pic.twitter.com/zamfJygvvj
|
||
|
||
|
Christina Walker
@Guatemalagirl
|
Aug 13 |
|
'Dear Mrs Hunt..If your son had cysic Fibrosis I know you understand and lower the price of Orkambi' @VertexPharma If only the World were as simple as it seems through the eyes of an 8 year old #OrkambiNow #Orkambi pic.twitter.com/3CQzgd2FIJ
|
||
|
||
|
Pamela Mathieson
@PamelaMathieson
|
Aug 15 |
|
Hi @TREKtx_PBC your collaborator @VertexPharma has done a wonderful thing bringing #Orkambi 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.
|
||
|
|
||
|
David Turner QC
@GreatStrides65
|
Aug 15 |
|
It's now 1,000 days since #Orkambi was licensed for use in the EU. Since then, ~200 potentially eligible cystic fibrosis patients have died in the UK while @NHSEngland & @VertexPharma $vrtx fiddle and blame each other. Their behaviour is a continuing disgrace
|
||
|
|
||
|
Nicola Johnson
@JohnsonMNicola
|
Aug 14 |
|
I’ve been so hopeful that our hard work will keep him well so when #Orkambi 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. @VertexPharma @NHSEngland pic.twitter.com/dT3wZvTQeO
|
||
|
||
|
Cystic Fibrosis Trust
@cftrust
|
Aug 15 |
|
Today marks 1,000 days since #Orkambi was licensed in the #UK, yet the fight for #OrkambiNow still continues. What has happened in 1,000 days since then?
Tell your health minister your story, using the Twitter handles below. pic.twitter.com/lXTCbBwPhB
|
||
|
||
|
Strawfie Challenge
@strawfie
|
Aug 14 |
|
Big media day planned tomorrow (Wed) for #Orkambi We need everyone on social media, watch #ThisMorning Listen @BBCSussex from 7.35am, #ITNLunchtimeNews, maybe #Channel5News - Keep checking social media this evening, we might have some actions for you to join in with. #OrkambiNow pic.twitter.com/cMsBRTns9T
|
||
|
||
|
ClaireW
@claireywilzz
|
Aug 15 |
|
@EamonnHolmes @RuthieeL Thank you 4 covering #Orkambi campaign today. There were many Cfers, Cf Parents/Grandparents & siblings all watching delighted that @ITV @thismorning had given us a platform 2 urge @VertexPharma @NHSEngland to get their heads together & make an urgent deal
|
||
|
|
||
|
Carl Rosekilly
@CKRosekilly30
|
6h |
|
Gaining access to #Orkambi 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.
|
||
|
|
||
|
Debbie Tierney
@_debbi8
|
5h |
|
I hope my child can do A levels, only 70% attended this last academic year. #Orkambi 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?
|
||
|
|
||
Related searches
@vertexpharma
|
|
Strawfie Challenge
@strawfie
|
Aug 15 |
|
We have collectively been beseeching This Morning to cover #Orkambi 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 #OrkambiNow again in the future?facebook.com/ThisMorning/po…
|
||
|
|
||
|
victoria
@CFandUs
|
19h |
|
1000 days since #orkambi 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 🙏🙏🙏@VertexPharma @theresa_may @NHSEngland @thismorning pic.twitter.com/3S6GwyKX6h
|
||
|
||
|
|
ClaireW
@claireywilzz
|
Aug 11 |
|
Matt Hancock please provide #Orkambi for the forgotten children under @theresa_may Government, instantly lowering the need for life saving transplants for #cysticfibrosis patients - no brainer
|
||
|
|
||
|
Light Bulb Moments
@JaneOBrien9
|
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 #Orkambi to those with #CysticFibrosis who need it.... facebook.com/janeslightbulb…
|
||
|
|
||
|
|
ClaireW
@claireywilzz
|
Aug 15 |
|
||
|
|
Pamela Mathieson
@PamelaMathieson
|
3h |
|
Day 1001: still no #Orkambi for the UK.
Over 200 lives lost while we wait.
What are you doing about it @JeaneF1MSP @NicolaSturgeon @nhsscotproc @VertexPharma????
#ScotlandneedsOrkambi #UKneedsOrkambi #OrkambiNow #CysticFibrosis #WhyAreWeWaiting #WeAreSuffocating #CFWarrior pic.twitter.com/5f7hijjIuK
|
||
|
||