5 ms·

Here is the problem with this statement - it assumes that the drug is worth the maximum amount that they could extract from the customer (insurance companies, p

Here is the problem with this statement - it assumes that the drug is worth the maximum amount that they could extract from the customer (insurance companies, patients and governments for it). Nothing says that they couldn't sell it for less, just that they thought they could get this much for it.

ctdonath 8y ago
A thing is worth what another will pay for it.
- DoreenMichele 8y ago
  "Your money or your life?" doesn't seem like a wonderfully ethical medical question when aimed at folks who probably cannot afford it even if it is a cure, adds decades to their life and you are willing to take installment payments.
  - tptacek 8y ago
    Yeah these are fun rants and all, but as the article itself states, EU health systems are already paying for a much more expensive alternative therapy. That they are not paying for this one says less about the price than it does about the utility of the treatment.
    - DoreenMichele 8y ago
      It isn't a rant and there is nothing whatsoever "fun" about the topic for anyone who has a genetic disorder.
      - tptacek 8y ago
        Sure, I wasn't sure about the word "rant". You can substitute any other word you'd like that somehow captures "not having anything whatsoever to do with the article we're commenting on or, for that matter, the subject of that article".
- ineedasername 8y ago
  And no one was willing to pay this much for the drug, but the inexplicably decided no revenue was better than lowering the price.
  - flatline 8y ago
    How much does it cost to manufacture the drug, and in such relatively low quantities? The article did not say but it pointed to this as part of their decision.
  - tptacek 8y ago
    It's not "inexplicable". uniQure is a going concern with treatments in the pipeline for Huntingtons, hemophilia, and congestive heart failure. They have a finite amount of resources and are allocating them to projects that they're more optimistic about than this one. Glybera is of questionable efficacy and is very expensive to administer (they're on the hook for long-term monitoring for everyone they dose). It's not at all hard to see why they'd stop production.
  - obmelvin 8y ago
    Yeah, but the drug also has weak efficacy. Who cares if it is "only" 100k instead of 1M if it do what it claims?
  - NickM 8y ago
    Maybe caving in and lowering the revenue would encourage future customers for other expensive treatments to boycott high prices and hold off for price drops. Refusing to negotiate and forgoing revenue now could be the rational strategy in the long term.
  - ctdonath 8y ago
    "Pay" goes both ways. The manufacturer wasn't willing to pay for a million dollars by making this treatment.
- grecy 8y ago
  healthcare should never be one of those things.

ctdonath 8y ago

A thing is worth what another will pay for it.

DoreenMichele 8y ago
"Your money or your life?" doesn't seem like a wonderfully ethical medical question when aimed at folks who probably cannot afford it even if it is a cure, adds decades to their life and you are willing to take installment payments.
- tptacek 8y ago
  Yeah these are fun rants and all, but as the article itself states, EU health systems are already paying for a much more expensive alternative therapy. That they are not paying for this one says less about the price than it does about the utility of the treatment.
  - DoreenMichele 8y ago
    It isn't a rant and there is nothing whatsoever "fun" about the topic for anyone who has a genetic disorder.
    - tptacek 8y ago
      Sure, I wasn't sure about the word "rant". You can substitute any other word you'd like that somehow captures "not having anything whatsoever to do with the article we're commenting on or, for that matter, the subject of that article".
ineedasername 8y ago
And no one was willing to pay this much for the drug, but the inexplicably decided no revenue was better than lowering the price.
- flatline 8y ago
  How much does it cost to manufacture the drug, and in such relatively low quantities? The article did not say but it pointed to this as part of their decision.
- tptacek 8y ago
  It's not "inexplicable". uniQure is a going concern with treatments in the pipeline for Huntingtons, hemophilia, and congestive heart failure. They have a finite amount of resources and are allocating them to projects that they're more optimistic about than this one. Glybera is of questionable efficacy and is very expensive to administer (they're on the hook for long-term monitoring for everyone they dose). It's not at all hard to see why they'd stop production.
- obmelvin 8y ago
  Yeah, but the drug also has weak efficacy. Who cares if it is "only" 100k instead of 1M if it do what it claims?
- NickM 8y ago
  Maybe caving in and lowering the revenue would encourage future customers for other expensive treatments to boycott high prices and hold off for price drops. Refusing to negotiate and forgoing revenue now could be the rational strategy in the long term.
- ctdonath 8y ago
  "Pay" goes both ways. The manufacturer wasn't willing to pay for a million dollars by making this treatment.
grecy 8y ago
healthcare should never be one of those things.