Top Tweets for #Precisionmeds
If our community has 2 wait until next Autumn more lives will be lost & more lung decline will happen. Another flu season is approaching @MattHancock do the right thing get an #interimdeal now. Don’t leave yr meeting with DR Leiden without our #precisionmeds we are counting on u
@CMO_England Dear @CMO_England Could you please review @NICE evaluation process on #precisionmeds for chronic illnesses? They are £££ but #Symkevi demonstrating 💪 results, NICE remains oblivious. Other meds in same bucket. Please give us #hope for our families 🙏🙏
@cftrust @CFAware
@olilewington @cftrust Sitting with my boy in a hot hospital room dreaming of a life where #precisionmeds are available for all 😩
@MattHancock @NHSX @HelenRCGP @matthewsgould @NHSCCIO @krfarrington The digital tech being used on my ward is slow, time consuming, doesn't always work & generally crap @MattHancock, a total waste of money that could be better used. Oh & how about #PrecisionMeds? Still no futher on with that are you. #cystic_fibrosis
Pls share & if u can’t get 2 Parliament Square yourselves pls lay down wherever u r & take a 10 sec selfie saying why u r taking part in #LayDown4CF we want 2 remember all who hv passed from CF especially those who’ve passed in the last 3 yrs who never got to try #precisionmeds
@MattHancock I agree #precisionmeds should be available for all but it appears CF personalised treatment isn’t Sexy enough only affect 10 k people but don’t forget the hv families, friends and colleagues who all will vote when there’s an election! #lifesavingdrugs4CF
I think @MattHancock you might want to listen to your own campaign line #LetsMoveForward it seems like you base your policies on whatever figure suits you when it comes to #cysticfibrosis It won’t get higher without access to #precisionmeds .
other MPs on this matter
@HackneyAbbott, @Debbie_abrahams, @IvanLewis_MP, @heidiallen75, @MattHancock, @DianaJohnsonMP, @johnmcdonnellMP, @RoryStewartUK, & any other MPs (tag any others)
#cystic_fibrosis can't keep waiting for available but denied meds #Orkambi #PrecisionMeds
this! I remember being told the gene thing,in fact my whole life being told a cure is just round the corner!the new drugs are not a cure,but can help a great deal in some cases&the triple especially! - hopefully a deal will get sorted asap 💜x #cf #CysticFibrosis #PrecisionMeds
Mini Kim was told around this age that the gene for #cysticfibrosis had been found & a cure would be on the way. Mini Kim still had to go through a lifetime of pain and watch as no real changes were made in those 30 odd years. We need to change this for the younger generation
@MattHancock when you do the maths yr best offer works out at same price paid for pulmozyme a management med regularly used in CF to break down muccous but #Precisionmeds are transformational they affect the root cause of CF 🤷♀️ #LifeSavingCFDrugsNow
Thank you @breckgamel! Just stumbled on this tweet! We're glad @folia_health can help with Bennett's care! #precisionmeds #cysticfibrosisawareness
I'm not exaggerating when I say that I feel more in control of Bennett's CF care and health than I ever have before. @FoliaHealth makes me so happy! It's a free daily tracking platform. #cysticfibrosis community, try it at https://t.co/D0ZXESqqMx code: TULIP18BG #quantifiedself
Hi @amateuradam Thank you for your kind support of the #CysticFibrosis community. Thurs 7/3 there is a HSC inquiry into why we have been waiting/dying 4 yrs for #precisionmeds - even Greece has them. Protest 12o'clock under Churchill statue. You are welcome to join us!
Got that #FridayFeeling. Do something #Random &sign &share petition for #UK #cysticfibrosis patients https://t.co/gFE7u37tdS. Fighting 4 #PrecisionMeds for over 3years. #OrkambiNow #SymkeviNow
Feeling angry that once again our community is having to gather in protest at not being given access 2 #PrecisionMeds cld hv been avoided if @NHSEngland & @VertexPharma had got the deal done! Leiden said he’s ready 2 jump on a plane anytime 2 meet @MattHancock ..,not true!
@TomTugendhat you’re great at doing videos! How do u fancy taking the Strawfie challenge? Breathe thru a Straw for 1 minute & get an insight how it feels when u have an infection or lung damage with CF. All with CF will feel like that eventually that’s why we need #PrecisionMeds
Ivy & @StephenMorganMP took the @strawfie together and are calling on MP’s across the UK to do the same, 650 letters have been sent and we are hoping all will get on board to help raise awareness for #CYSTICFIBROSIS and the need for #PrecisionMeds4CF
Unless you have #CF @theresa_may @MattHancock @NHSEngland @NICEcomms @sarahwollaston Fund kalydecko but leave the majority of children to suffer without #PrecisionMeds #discrimination #unethical you are as culpable as @VertexPharma
With our balanced approach to the economy the Conservatives have been able to announce the biggest cash boost in the history of the National Health Service.
Our #NHSLongTermPlan is about ensuring the NHS is always there for you and your family.
https://t.co/hqBPa5uYVL
@CMO_England Antibiotic resistance has been going on for years in the #cysticfibrosis community including my daughter. Dr Keith Brownlee at @cftrust spoke about the impact in 2016. This is why we need #orkambi & #precisionmeds NOW! https://t.co/F0b2tWLLME
#ImGrumpyBecause we need #OrkambiNow Please sign & RT! Petition: NHS supply new lifesaving drugs for #CysticFibrosis like 11 other EU countries https://t.co/nl4zAwRPwX #ThursdayThought #ThursdayMotivation #precisionmeds
@Charles_MDuke have you tweeted the petition for #precisionmeds yet? Would be great if you could! Yr 10 k followers cld really help. The need for transplants could be greatly reduced if children get these modern medicines. #OrkambandCFpipelinedrugs https://t.co/OxlleZr6wZ
@GreatStrides65 @MattHancock @BBCPanorama I’m in tears at this thoughtless tweet despite all the meds & physio CF will stop our young people achieving their goals & you hold the key that cld set them free to reach their “moon” and you do nothing. #precisionmeds are ready for them the future is here bu UK is in the past.
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