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Thread: 600 years’ supply of cystic fibrosis drug destroyed in price row

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  1. #1
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    600 years’ supply of cystic fibrosis drug destroyed in price row

    Nearly 8,000 packs of Orkambi, the breakthrough medicine for cystic fibrosis, have been destroyed by the manufacturer while it has been in a stand-off with the NHS over the high price it wants to charge for the drug.
    The US company Vertex has distributed 80,000 packs of Orkambi around Europe from its base in the UK since the drug was licensed in 2015. Other European countries with smaller numbers of people affected by the genetic disease have agreed to a high price, sometimes in order to give access to patients before negotiating downwards.
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    https://www.theguardian.com/society/2019/mar/27/600-years-supply-of-cystic-fibrosis-drug-destroyed-in-price-row


  2. #2
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    Wow, that's pretty f'ed up. I wanna like Vertex b/c they're creating ground-breaking meds for us, but their business practices sure make it hard to be a fan. How can they hold strong that their drug is worth so many millions when they're willing to destroy it and gain nothing.
    Eric 36 with CF

  3. #3
    Vertex received millions of dollars from the CF Foundation for years to fund their research. Now, they charge the CF community outrageous prices for the drug.

  4. #4
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    This is so heart wrenching, so disturbing.
    Vertex walked away from “negotiations" (I hate that this term is even used when talking about people's lives) in July knowing that they had thousands of packs of Orkambi about to expire.The amount of drug that they destroyed could have treated all those in England eligible for Orkambi for about 3 months.Why not be completely transparent about this back in the summer and give access to these desperate people while working diligently to come up with a plan.
    What an unethical, villainous company.
    Last edited by twin2; 03-31-2019 at 06:51 PM.

  5. #5
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    Research = Hope Research Costs Money Hope is Not Free

    I think we are forgetting one thing - without Vertex and surfing (hypertonic saline discovery), there have only been minimal advancements in treatments in CF since the DF508 gene was discovered back in 1989! 30-year anniversary and we're still not cured.

    Also, what you may not know is that the CFF.org who helped fund Vertex received over $3 BILLION in cash from a royalty that Vertex paid to the CFF -- and then they sold -- in 2014. See NY Times article: https://www.nytimes.com/2014/11/19/b...-and-cash.html

    This is $3 billion they would have never had if Vertex were to give their drug out to governments for cut rate prices -- to governments who want the innovation -- but refuse to provide the incentives necessary to achieve it. This is $3 billion to fund even more amazing CF research - wooooooooooooooooohoooooooooo!!

    Incentives ($) for biopharmaceutical developers must be high, otherwise no one in their right mind would spend 10-15 years developing and millions of man hours to create something with a less than 2% chance of success*, with an average cost of development = $2 billion (with a B).

    Why should the United States citizens pay for 90-95%% of the cost of worldwide biopharma innovation? And all other governments get off scott-free? The answer is, they shouldn't. If you want incredible advancements, you need incredible incentives.

    (*the average probability for an oral medication to make it from Preclinical Dev to launch is <2%)

  6. #6
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    Quote Originally Posted by CFCure View Post
    I think we are forgetting one thing - without Vertex and surfing (hypertonic saline discovery), there have only been minimal advancements in treatments in CF since the DF508 gene was discovered back in 1989! 30-year anniversary and we're still not cured.

    Also, what you may not know is that the CFF.org who helped fund Vertex received over $3 BILLION in cash from a royalty that Vertex paid to the CFF -- and then they sold -- in 2014. See NY Times article: https://www.nytimes.com/2014/11/19/b...-and-cash.html

    This is $3 billion they would have never had if Vertex were to give their drug out to governments for cut rate prices -- to governments who want the innovation -- but refuse to provide the incentives necessary to achieve it. This is $3 billion to fund even more amazing CF research - wooooooooooooooooohoooooooooo!!

    Incentives ($) for biopharmaceutical developers must be high, otherwise no one in their right mind would spend 10-15 years developing and millions of man hours to create something with a less than 2% chance of success*, with an average cost of development = $2 billion (with a B).

    Why should the United States citizens pay for 90-95%% of the cost of worldwide biopharma innovation? And all other governments get off scott-free? The answer is, they shouldn't. If you want incredible advancements, you need incredible incentives.

    (*the average probability for an oral medication to make it from Preclinical Dev to launch is <2%)
    Yeah frankly, I'm tired of footing the bill for other countries. We do the research and spend billions and billions of dollars on it, and then Canada and the UK come in with their stupid national healthcare that gives back NOTHING to the world and expects a lower price... Without the US, these countries have nothing. Good on Vertex for holding their ground, though it would be nice if they could donate the medicine instead but its likely government rules prevent that from happening.

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