| Search | Refresh |
|
Fire N Ice Fly #GTTO #cysticfibrosis #CFMeds
@firenicefly
|
Feb 15 |
|
As lovely as the sentiment is, it doesn't change the fact that over 220 #cystic_fibrosis sufferers eligible for #Orkambi 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
|
||
|
||
|
Carlie: Motherhood vs Cystic Fibrosis
@MotherhoodvsCF
|
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 👏🏻 @strawfie @fight4orkambi @Guatemalagirl etc... #cysticFibrosis #orkambi
|
||
|
|
||
|
Strawfie Challenge
@strawfie
|
Feb 10 |
|
Please sign the petition to help UK cystic fibrosis community access life saving precision medicines like #Orkambi petition.parliament.uk/petitions/2316… #bbc5live @bbc5live #MondayMotivation #MondayMorning #News #UK #UKNews #OrkambiNow #cysticfibrosis
|
||
|
|
||
|
John Schroeder
@cffschroeder
|
Feb 15 |
|
It’s been an EXCELLENT week. You all are AMAZING!! I’ve seen more British magazine articles on #Orkambi in the past week than I’ve ever seen before!!!! AWESOME!! #OrkambandCFpipelinedrugs twitter.com/motherhoodvscf…
|
||
|
|
||
|
Chloe Knibbs
@ChloeKnibbs1
|
Feb 13 |
|
|
||
|
||
|
Jonathan Ashworth
@JonAshworth
|
Feb 4 |
|
#Orkambi 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
|
||
|
|
||
|
|
Carlie: Motherhood vs Cystic Fibrosis
@MotherhoodvsCF
|
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 #cysticFibrosis petition👇🏻 & then you would have done your good deed for the day. Thank you, it’s really appreciated #orkambi #LetThemBreathe #justbreathe #cf twitter.com/nhscfwarriormu…
|
||
|
|
||
|
|
Strawfie Challenge
@strawfie
|
Feb 11 |
|
Have you received your letter from 5-year-old Ivy and @StephenMorganMP 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 #Orkambi? See here: twitter.com/fight4orkambi/…
|
||
|
|
||
|
Oli Rayner
@oli_rayner
|
Feb 4 |
|
.@NHSEngland’s ‘final offer’ for #Orkambi 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.
|
||
|
|
||
|
Health and Social Care Committee
@CommonsHealth
|
Jan 24 |
|
We are holding a session on the availability and pricing of #Orkambi and other drugs manufactured by Vertex on the NHS and we are inviting written submissions.
Read more here: parliament.uk/business/commi… pic.twitter.com/zVPd04PFas
|
||
|
||
|
JamesReckons
@JamesReckons
|
Feb 3 |
|
One of the most galling things about this whole #Vertex saga is how Austria, Germany, Ireland, Italy, Netherlands and Sweden all have access to #Orkambi but Britain has quibbled for years about the price. Why do we put a lower value on the life of a CF sufferer @MattHancock?
|
||
|
|
||
|
Jackie Baillie
@jackiebmsp
|
Dec 19 |
|
Delighted that @VertexPharma have announced that #Orkambi and #Symkevi 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 @JeaneF1MSP. It’s a truly wonderful Christmas present.
|
||
|
|
||
|
Cystic Fibrosis Trust
@cftrust
|
Jan 28 |
|
The UK #Parliament wants to hear your voice on #Orkambi 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. cysticfibrosis.org.uk/news/parliamen…
|
||
|
|
||
|
|
Strawfie Challenge
@strawfie
|
Feb 15 |
|
MP's #StrawfieChallenge is raising awareness about #cysticfibrosis and the fight for #OrkambiNow #Orkambi facebook.com/strawfiechalle…
|
||
|
|
||
|
zo zo
@_MissMoo_
|
Feb 5 |
|
Health minister response to Crown licensing #Orkambi "Vertex would have to be compensated following the removal of the patent which is something that would really stick in our throats”@BrineMinister sounds personal, competitive an not one bit in the interest of people with CF
|
||
|
|
||
|
Kate Learoyd
@PKUFamily
|
Jan 12 |
|
|
||
|
|
Jonathan Ashworth
@JonAshworth
|
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 #NHS can get it at a fair price. #LetThemBreathe #Orkambi pic.twitter.com/4ShNCKjc9C
|
||
|
||
|
RF Hunt ♿️
@RFHunt1
|
Jan 23 |
|
article about the funding of #Orkambi for #CysticFibrosis will be in The Morning Star tomorrow.
|
||
|
|
||
|
Emma Robertson
@little_emmabird
|
18h |
|
@emmatimes2 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 #orkambi and the governments lack of action for young CF sufferers??? 🤨
|
||
|
|
||
|
|
Oli Rayner
@oli_rayner
|
Feb 4 |
|
. @MattHancock: the healthcare systems of 35 other countries including Ireland and Scotland have found a way to make #Orkambi available to the people who need it. If they can do it, why can’t you?
|
||
|
|
||