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Picture this 2 children hv #cysticfibrosis same age everything same except they hv different genes. Child 1 gets precision medication to target his disease Child 2 is denied precision medication that’s #Discrimination isn’t it? #equalrights #orkambinow NHS England Sir Jeremy Hunt MP

Hugely disappointing that a drug which could potentially reduce treatment burden, and allow CF patients to live a more normal life is still not available on the #NHS ; a drug which patients believe would be "life changing"! #OrkambiNow

trybooking.com/WXOZ #weneedorkambi #melbournemusicmusic #singersongwriter

Also, we in Australia are waiting for Vertex Pharmaceuticals and the Government's drug panel to decide whether a breakthrough drug, #Orkambi, is listed on our amazing public health care system. It's weeks away from a public decision, so please tell Vertex to LOWER THE PRICE #WeNeedOrkambi

Ellie-May knows that Orkambi could change her life. 🌹🌹 But only if the PBAC agrees on Friday to subsidise it on the PBS. 🤞 “It will be a lot of pain gone. Why are you making it so expensive for us when it could actually save people’s lives?”... geelongindy.com.au/indy/10-08-201…

We don’t just need Orkambi our lives depend on faster access to breakthrough medications. @GregHuntMP Catherine King MP Vertex Pharmaceuticals Australian Dept of Health, Disability and Ageing #WeNeedOrkambi #WeNeedThePipeline #FallingThroughTheCracks

We wait to hear the outcome of PBAC process on Friday. It’s not OK to bargain with our lives. #FallingThroughTheCracks #wereheretoo #weneedorkambi Rebekha Sharkie MP Derryn Hinch Sharon Claydon

#QUESTION = What would You Do if this was #YOU ?? HELP these People #NOW Aleta Gibbs REGINA SORENSEN 👩‍🦯 Sonia Marshall WeNeedOrkambi Tell EVERY #POLITICIAN = They NEED #ORKAMB NOW

RouleResponse Aleta Gibbs Akarnious WeNeedOrkambi Taryn Barrett Team Jessie kate_hillard Sonia Marshall REGINA SORENSEN 👩‍🦯 Matty D (blue tick) cf/Aware Strawfie Challenge Sandee Facy 🎙🎸🎵🎶🤠 @GregHuntMP Malcolm Turnbull Bill Shorten Tanya Plibersek Bernardi Pauline Hanson 🇦🇺 Malcolm Roberts 🇦🇺 Calling it a new drug probably lets the people delaying its approval off the hook. Orkambi has been in the pipeline for around 3 years. As an Aussie taxpayer that makes me angry. Particularly when I see the waste govt displays almost daily.

Whilst we have a smaller CF population, the weeks of iv antibiotics, the new meds, the cf diabetes, the lung function decline & the lives being lost are the same in Australia. @GregHuntMP Vertex Pharmaceuticals we can't hold our breath forever. #WeNeedOrkambi #WeNeedThePipeline

Thinking of my Australian friends as they wait on #PBAC decision on Orkambi hopefully 4th time they do the right thing. God knows I wouldn’t be here if not for Orkambi, 5 years on I’m transformed. Everyone deserves this chance Sonia Marshall Cystic Fibrosis Aust WeNeedOrkambi REGINA SORENSEN 👩‍🦯

130 young people have died during the Kalydeco & Orkambi negotiations. @GregHuntMP Malcolm Turnbull we can't hold our breath forever - our lives depend on fast access to Orkambi & the pipeline of meds #WeNeedOrkambi #WeNeedThePipeline

I strongly welcome the positive recommendation of Orkambi by the independent medical experts of the Pharmaceutical Benefits Advisory Committee (PBAC). Unlike Labor, who delayed and deferred the listings of seven vital drugs, we are funding all drugs recommended by PBAC.

Orkambi got a yes from the PBAC! To add to the good news we’ve also heard that Orkambi for 2-5s, Kalydeco for 1-2s & Symdeko for 12+ have been submitted to the TGA! This means they could go to the PBAC early next year! #Amazing #3YearWaitOver #PipelineComing #ThankyouPBAC!

Pleased to hear Cystic Fibrosis Aust have achieved access to #Orkambi there. #Australia is now one of 12 countries alongside the #US and 10 in #Europe that now have access while the #UK still waits for #OrkambiNow.

"I’m so excited - I’m gonna have a normal life! I’m going to live past 37!” Evie and Sonia explain what today’s big win for Aussies with cystic fibrosis means to them. #TheProjectTV