• 5 years ago
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    pharmaceutical companies shouldn't be allowed to do this https://newsinteractives.cbc.ca/longform/glybera
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    • rockshard PhD
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      rockshard PhD
      Editing … In a way it was worth it just to help cure that one person. Those two kids technically owe their existence to that drug.
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    • Husky Wing
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      Husky Wing
      Editing … 31 people got treated. The creation of the drug was definitely worth it. But once the drug companies got their paws on it, I'm pretty sure the article said not a single person got it. And because no one could afford it, now it's not even available for sale. A company owns it and they're not letting anyone have it. Really, that company is killing people.
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    • Sandvich
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      Sandvich
      Editing … "Pricing shouldn't be a political decision. It should be a rational decision based on merits and values" TRANSLATION: https://www.youtube.com/watch?v=eirWmvB5YgQ
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    • Sandvich
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      Sandvich
      Editing … Deleted by himself
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    • Sandvich
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      Sandvich
      Editing … Actually the fact that he follows that quote by QQing about investor money tells you just about everything you need to know about his "merits and values."
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    • Aramonde
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      Aramonde
      Editing … I can both sides here. These Pharma companies are inbusiness to make money so if it costs to much to produce it then they won't sell it. I'm sure if someone wants to pay to maintain a factory just for this one drug for uniQure then im sure they'd lower the price down. Does it suck? Hell yeah it does but i doubt any other Pharma company would continue making it without the same price as uniQure did.
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    • Aramonde
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      Aramonde
      Editing … What's your solution Husky?
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    • Husky Wing
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      Husky Wing
      Editing … There is absolutely no fucking way it costs *that* much to make. Like you said, pharma companies want money, and they will fuck over anyone they can to get it unless they're unable to. It's why drugs made in the US cost more locally than they do in Canada. It's why some people want us to re-buy US-made drugs from Canada, saving endless assloads of money.
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    • Husky Wing
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      Husky Wing
      Editing … Here, the solution, easy, simple: inflating pharma prices to scalp those in need should be illegal.
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    • Nodley
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      Nodley
      Editing … But then you're taking away somebody's rights to sell something for what the market will pay. You're forcing them to sell it at a lesser price decided by the people in power. Can you see where I'm going with this?
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    • Husky Wing
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      Husky Wing
      Editing … It's forcing evil people not to do evil, and it places the masses in power. And it's not what the market will pay, it's what the elite will pay. It's also not regulating a person, it's regulating an economy.
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    • Nodley
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      Nodley
      Editing … They're not evil and they're not doing evil. They have rights just as everybody else, and they're not breaking the law.
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    • Husky Wing
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      Husky Wing
      Editing … It's evil as fuck to gouge people, knowing that if they don't pay up they can die. What the fuck do you think's evil? And it SHOULD be illegal, because if you want to take part in a society with other people, you have to cede certain autonomies that harm or >kill< other people, like speeding, selling heroin, or scalping when your customers are the needy. Man how fucking morally bankrupt are you
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    • Nodley
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      Nodley
      Editing … You guys make me laugh. You whine about your rights all the time, your right to privacy being one we've discussed here. But you will take away a businesses right to free trade in an instant. You can't have everything your own way, it's not all about you, everyone else has rights too, all businesses have the right to trade equally or it'd all collapse. I'm assuming this company own the drug. It's THEIR property to do with it what they please. You CANNOT make it fucking illegal.
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    • Nodley
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      Nodley
      Editing … I suppose your next idea is to imprison food manufacturers for trying to make a profit when people are starving? Are they evil too?
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    • Sandvich
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      Sandvich
      Editing … "I suppose next you are going to advocate something cuh-razy like making price gouging illegal like it is in 35 states?! LOLOL"
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    • Sandvich
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      Sandvich
      Editing … While I'll maintain that Van Deventer's "Why would we lower it?" quote was cold and glib, this isn't the fault of any one company. Arguably uniQure's greatest sin was pushing the treatment to market without accepting the possibility that they would have to do it for purely philanthropic reasons. It's understandable that they don't want to continue hemorrhaging money via upkeep, licensing costs and followup studies when they have other treatments for more widespread and deadlier diseases like Huntington's on the horizon. These are totally new treatments. Glybera is a virus, not a drug, considerably more complicated to manufacture, and being the first of its kind, more difficult to get regulators and insurance companies to support it. But all of that plus the fact that few to no people would be able to afford the treatment or get their insurance to pay for it should have been foreseeable. This condition only affects a few hundred people across all of Europe. They should only have pushed the treatment to market if they were willing to sell it at a loss. To go to all the trouble to get it approved and give patients hope for a cure to their suffering only to rip it away is cruel. This is why more research needs to be publicly funded. Since the initial research was done out of UBC and the condition is far more common in Quebec, arguably the Canadian government should have felt compelled to fund the testing and approval process. It's hard to say what the best course of action is now. The worst part is that it appears that as an orphan medicine no one else can patent a similar treatment until 2025. I'm not super familiar with EU orphan incentives, so I'm not sure what options uniQure has to cede those protections or whether they can sell the patent to another entity that might have better luck making it economically viable. Hopefully they don't just sit on it until it expires.
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