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The New York Times
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The New York Times
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Where the conversation begins. Follow for breaking news, special reports, RTs of our journalists and more. Visit http://nyti.ms/2FVHq9v  to share news tips.

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    The New York Times‏Verified account @nytimes Jun 24

    Orkambi, a new drug to treat cystic fibrosis, costs $272,000 a year, but has been shown to only modestly help patientshttps://nyti.ms/2tr7Qbn 

    2:15 PM - 24 Jun 2018
    • 83 Retweets
    • 166 Likes
    • Ahmet John Schroeder Andrew Boell Nathan Myers Breed Byrne เอด Patients For Affordable Drugs Marissa H CF Fighter
    21 replies 83 retweets 166 likes
      1. Strawfie Challenge‏ @strawfie Jun 26
        Replying to @nytimes

        Chantelle is back at work and enjoying some quality of life after starting on #Orkambihttps://www.bbc.co.uk/news/av/uk-politics-43459077/chantelle-millward-on-orkambi-drug-for-cystic-fibrosis-patients …

        0 replies 8 retweets 7 likes
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      1. Strawfie Challenge‏ @strawfie Jun 26
        Replying to @nytimes

        Orkambi transformed Hannah's life. I've spoken to her and @chanmillward & Amalie's mum. This is what #Orkambi can do for some with CF. Everyone who is eligible should have the chance to try this drug & Vertex should drop their prices to make that possible:http://www.bournemouthecho.co.uk/news/16089613.Poole_student_with_cystic_fibrosis_battles_to_get_others_the_drug_which_transformed_her_life/ …

        0 replies 7 retweets 5 likes
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      1. New conversation
      2. doodlemom  🐾‏ @kathic1016 Jun 24
        Replying to @nytimes

        They have since patented a twofold Drug which works with the Orkambi, Symdeko. It’s showing wonderful results. It took the ingredients in Orkambi and paired with others. If you have the disease you’d pay anything.

        1 reply 2 retweets 3 likes
      3. 1 more reply
      1. Strawfie Challenge‏ @strawfie Jun 26
        Replying to @nytimes

        A modest improvement? Saved her life according to her mother. The Facebook post of this video reached 374,000 viewshttps://www.youtube.com/watch?v=GtatLl1z1i0 …

        0 replies 1 retweet 3 likes
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      1. Justin‏ @justinlivinlife Jun 26
        Replying to @nytimes

        Think this article should have pointed out Symdeko a lot more. It has a much better result/ price point associated with it. Besides it also covers more mutations than Orkambi

        0 replies 0 retweets 4 likes
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      1. ELC‏ @Metsgal86 Jun 26
        Replying to @nytimes

        Except modest can be life-changing for people with CF; every bit of lung function matters...

        0 replies 0 retweets 4 likes
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      1. New conversation
      2. Johnson J‏ @DuhartKimberlie Jun 24
        Replying to @nytimes

        Finally, they are questioning treatments that have little effect and cost are astronomical. That's a good thing.

        1 reply 0 retweets 0 likes
      3. Mariah Hanley‏ @MariahHanley Jun 25
        Replying to @DuhartKimberlie @nytimes

        This drug was a jumping off point for a drug that’s been shown to have truly amazing effects, and when you live every day with something like #cysticfibrosis even moderate effects are life changing.

        1 reply 0 retweets 3 likes
      4. Johnson J‏ @DuhartKimberlie Jun 25
        Replying to @MariahHanley @nytimes

        What does that mean? Does the drug work or not? Jumping off point for a drug that has amazing effects? Where's the drug with the amazing effects? I don't need mumbo jumbo about drugs if it works great if it doesn't why are we spending a fortune for it?

        3 replies 0 retweets 0 likes
      5. Sarah Marlow‏ @_smarlow Jun 25
        Replying to @DuhartKimberlie @MariahHanley @nytimes

        It does work! As with most medications, people respond differently. But this class of medication is the first to treat the cause of CF, not just the symptoms, so it has done a lot as a jumping off point, too.

        0 replies 0 retweets 1 like
      6. End of conversation
      1. New conversation
      2. Kathleen Sholinsky‏ @KSholinsky Jun 24
        Replying to @nytimes

        Big Pharma = rapacious bastards.

        1 reply 0 retweets 3 likes
      3. 1 more reply
      1. New conversation
      2. M.A.G.C.‏ @MAGC707 Jun 24
        Replying to @Tagreen1958 @nytimes

        Uh, aren’t you on the wrong thread?

        0 replies 0 retweets 2 likes
      3. End of conversation
      1. M.A.G.C.‏ @MAGC707 Jun 24
        Replying to @nytimes

        This kind of drug pricing should be prohibited. Yes, pharmas spend lots of $$ in R&D, but they get beaucoup tax breaks & subsidies. Additionally, they have no incentive to develop cures. If they did, they’d put themselves out of business, which is why they seldom do that

        0 replies 0 retweets 1 like
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      1. Miss Nasty of the Rebel Alliance  🗽‏ @missnastywoman Jun 24
        Replying to @nytimes

        Big Pharma trying to bleed the sick dry again.

        0 replies 0 retweets 0 likes
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