WeNeedOrkambi

@OrkambiAus

Sick Australians are dying whilst a med sits unused on a shelf - after 2.5 years & 3 rejections 1300 young Australians with Cystic Fibrosis need Orkambi now!

Australia
facebook.com/WeNeedOrkambi
Joined July 2015
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  1. Retweeted
    17 Aug 2018

    "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.

    Cystic Fibrosis Fight
    The Project | 6.30 Sunday to Friday on TEN
    7 replies 33 retweets 85 likes
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  2. Retweeted
    17 Aug 2018

    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.

    30 replies 17 retweets 77 likes
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  3. Retweeted
    17 Aug 2018

    Australia has finally said yes to Orkambi and I am crying. thank you and Aus govt for finally coming to an agreement! – at Kids Playground - Womens & Childrens Hospital

    8 retweets 25 likes
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  4. Retweeted
    17 Aug 2018

    Pleased to hear have achieved access to there. is now one of 12 countries alongside the and 10 in that now have access while the still waits for .

    3 replies 68 retweets 95 likes
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  5. 17 Aug 2018

    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! !

    3 replies 12 retweets 33 likes
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  6. 16 Aug 2018

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

    12 retweets 17 likes
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  7. Retweeted
    16 Aug 2018

    Thinking of my Australian friends as they wait on 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

    4 replies 16 retweets 32 likes
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  8. 15 Aug 2018

    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. we can't hold our breath forever.

    That's at least 24 weeks of , 10 new , and 1/4 function decline. A father of new born twins leaves behind his family & 200 other lives have been lost since. Time is ticking, and we are still waiting for 💊
    1 reply 10 retweets 20 likes
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  9. Retweeted
    14 Aug 2018

    I hope common sense and good judgement prevail on Friday Greg Hunt MP & Vertex Pharmaceuticals, and you finally allow access to the lifesaving medication to those with who need it....

    8 retweets 7 likes
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  10. Retweeted
    14 Aug 2018
    Replying to and

    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.

    11 retweets 10 likes
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  11. Retweeted
    14 Aug 2018

    Let’s hope Connor’s future looks brighter next week! For him and 1300 others.

    0:19
    Mother of cystic fibrosis sufferer would consider moving overseas if a drug that could help her son is rejected for inclusion in the PBS for the 4th time. At a cost of $250,000 a year the drug Orkambi is out of reach for most
    10 retweets 17 likes
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  12. Retweeted
    14 Aug 2018

    = What would You Do if this was ?? HELP these People Tell EVERY = They NEED NOW

    3 retweets 3 likes
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  13. Retweeted
    12 Aug 2018

    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?”...

    5 retweets 5 likes
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  14. Retweeted
    14 Aug 2018

    We wait to hear the outcome of PBAC process on Friday. It’s not OK to bargain with our lives.

    2 replies 15 retweets 16 likes
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  15. Retweeted
    14 Aug 2018

    We don’t just need Orkambi our lives depend on faster access to breakthrough medications.

    1 reply 25 retweets 20 likes
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  16. Retweeted
    10 Aug 2018

    Let’s hope we will be celebrating next Friday.

    3 replies 10 retweets 12 likes
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  17. Retweeted
    22 Jul 2018

    Also, we in Australia are waiting for and the Government's drug panel to decide whether a breakthrough drug, , 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

    2 retweets 2 likes
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  18. Retweeted
    21 Jul 2018

    1 reply 6 retweets 7 likes
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  19. Retweeted
    15 Jul 2018

    Hey, , the ball is in your court. Please remove “...the main reason for the delay in listing this medicine.”

    2 replies 4 retweets 5 likes
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  20. Retweeted
    5 Jul 2018

    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 ; a drug which patients believe would be "life changing"!

    2 replies 29 retweets 28 likes
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