Top Tweets for #geneDiscrimination
Struggling to breathe..... Fighting to be heard.
The fight for access to #cysticfibrosis medicines on @NHSEngland
Watch- @BBCOne Inside Out, Monday 23rd September, BBC One South/East & West 7:30pm #LifeSavingDrugs4Cf #InsideOut
💛@PeterTodd_ @GreatStrides65 @NickMedhurst @cftrust With Elexacaftor on the horizon, does it make a class action for #geneDiscrimination possible due to its effectiveness compared with #OrkambiNow #Kalydeco funded already by @NHSEngland ? Hoping so?? https://t.co/gD0pEIfLrz
@IanAustinMP @VertexPharma @MattHancock 💛Thanks Ian
We are up against a bias government who don’t seem to understand the importance of funding #OrkambiNow #LifeSavingDrugs4CF
We must keep fighting for #Elexacaftor too soon to licenced & better than funded #kayldeco How is that fair?
#geneDiscrimination @ChrisMRiches
@IanAustinMP @VertexPharma @MattHancock 💛Thanks Ian
We are up against a bias government who don’t seem to understand the importance of funding #OrkambiNow #LifeSavingDrugs4CF
We must keep fighting for #Elexacaftor too soon to licenced & better than funded #kayldeco How is that fair?
#geneDiscrimination @ChrisMRiches
Sitting in a hot hospital room feeling very angry right now that my son doesn’t have access to precision medicines for his gene type yet others with CF do hv access to the one that suits their gene same illness different outcomes coz there’s 2 many who need 😡#genediscrimination
@nhsCFwarriormum @DrRanj @_MissMoo_ @thismorning @VertexPharma @ChrisMRiches @DrRaviJ @cftrust @lbeswickcft @emmagadie2009 @CatherineSheah2 @EamonnHolmes It’s genetic discrimination that my son can’t get a #lifesavingmedicine4CF and yet others who have CF but different gene can get their med just because there are fewer people who need that med! #genediscrimination
@Alidilly @NHSEngland -#genediscrimination any lawyers out there that can help us
#medicalLaw #medicalnegligence #classAction #inequalityINhealth #CysticFibrosis #legalAid 🤷♀️🙏🏻
@MattHancock It shouldn’t be like this. Should it.
Graphic shows lives lost who were eligible for Orkambi there hv been more lost who were eligible for rest of #pipelinedeal we need to #stoptheclock 400 hv their drug #kalydeko & are living their lives well because the @NHSEngland has paid for it feels like #genediscrimination
#invisibleILLNESS #INEQUALITY IN HEALTH for CysticFibrosis gene mutations #Kalydeco #symkevi #GeneDiscrimination @CommonsHealth inquiry on March 7th @AmberRuddHR educate yourself as the perverbial is going to hit the fan #OrkambiNow
Really @AmberRuddHR l’m curious. Did you know that if your mate @MattHancock did a deal with @VertexPharma for #OrkambiandCFDrugPipeline then up to 9,000 uk #CysticFibrosis patients would benefit, half of them immediately! #OrkambiNow not all disabilities are visible 💪🏻
Can't listen to this song without thinking of all our beautiful #CfWarriors 💛 #WhatAboutUs #BRITS2019 #OrkambiNow #CysticFibrosis
@Daily_Express @ChrisMRiches @g_maynard @ExpressGilo @thecarolemalone thanks for helping me give my daughter the best 18th birthday present, the gift of a longer life Plesse, @MattHancock Are you going to deny her that #DailyExpressCRUSADE4CF #invisibleILLNESS #genediscrimination
@MattHancock Please give ALL people with #CysticFibrosis Equal opportunities in life! #genediscrimination #orkambiNow
@CF_vs_Everest is inspiration 2 us all, but @MattHancock don’t all with CF deserve to reach for the skies? My son has a more common gene type so he’s denied meds that cld see him live a better life. 400 need Kalydeko NHS pay & 4000 need Orkambi NHS don’t 🤷♀️#genediscrimination
#genediscrimination in our nhs is totally wrong and needs to stop NOW. ThankYou @ChrisMRiches @Daily_Express for highlighting this national scandal for people with CysticFibrosis Totally unacceptable in 21st century Britain #DailyExpressCRUSADE4CF @NickMedhurst @GreatStrides65
@CF_vs_Everest is inspiration 2 us all, but @MattHancock don’t all with CF deserve to reach for the skies? My son has a more common gene type so he’s denied meds that cld see him live a better life. 400 need Kalydeko NHS pay & 4000 need Orkambi NHS don’t 🤷♀️#genediscrimination
@CF_vs_Everest is inspiration 2 us all, but @MattHancock don’t all with CF deserve to reach for the skies? My son has a more common gene type so he’s denied meds that cld see him live a better life. 400 need Kalydeko NHS pay & 4000 need Orkambi NHS don’t 🤷♀️#genediscrimination
@MattHancock @NICEcomms @NHSEngland Take 2 children with CF, child A is able to access meds that treat root cause of the disease. Child B is denied the chance, same disease different gene types 🤷♀️ 400 young people in UK Hv Kalydeko 4000 need #Orkambi that’s #genediscrimination
Take 2 children with CF, child A is able to access meds that treat root cause of the disease. Child B is denied the chance, same disease different gene types 🤷♀️ 400 young people in UK Hv Kalydeko 4000 need #Orkambi that’s #genediscrimination pls sign & RT https://t.co/DAh9Wh8lBy
@CommonsHealth @TheKingsFund @NuffieldTrust @HealthFdn @nhsconfed @NHSProviders @NAPC_NHS @LGAWellbeing @NHSCCPress Don’t forget to make sure #Rarediseases like #CysticFibrosis are included in #nhslongtermplan It appears not to be #PrecisionMeds4CF #precisionmedecine is an investment in our future For smaller patient grp’s,like CF this still must be provided #healthequality #genediscrimination
3/11 We are denied access to this #PrecisionMedicine in England Wales & NI. Scotland recently secured an interim deal with Vertex
Even more unpalatable is the fact that a similar Vertex drug #Kalydeco, is paid by @nhs for a rarer CF gene type So we also have #GeneDiscrimination
@DHSCgovuk @nicolablackwood @nicolablackwood Nothing in #NHSlongtermplan about provision of #PrecisionMeds4CF in #CysticFibrosis We hope you will help sort this out for our dying kids as it’s unfair that @NHSEngland pay for #kalydeco just because it’s a tiny proportion of CF population #genediscrimination
within a disease - #GeneDiscrimination Wonderful Matt Nice one, not. Seriously, this situation is totally intolerable Pls sort this out Ppl are dying everyday I see the posts and tweets of yet another CF angel
#noMoreCFangels
#OrkambiNow
#symkeviNow
@strawfie @BrineMP
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