5 votes

Rare protein allergy would give PKU sufferer 'brain damage'

5 comments

  1. [5]
    feigneddork Link
    I've had this since birth and in the UK every one who I've talked to has never heard of this, so seeing this in the news is absolutely great. I also love the conversation on Kuvan - here in the UK...

    I've had this since birth and in the UK every one who I've talked to has never heard of this, so seeing this in the news is absolutely great.

    I also love the conversation on Kuvan - here in the UK the NHS budget has been shrunk by the British government so there is a conversation about how the NHS should be able to buy the drug but there's also a conversation about why this drug is so expensive in the first place.

    3 votes
    1. [4]
      cfabbro (edited ) Link Parent
      Here in Canada we have something called the Patented Medicine Prices Review Board that's mandate is to do exactly that; Find out how much medication actually costs to produce, how much R&D...

      but there's also a conversation about why this drug is so expensive in the first place.

      Here in Canada we have something called the Patented Medicine Prices Review Board that's mandate is to do exactly that; Find out how much medication actually costs to produce, how much R&D spending went into it, etc. and then set the drug prices so that pharmaceutical companies can still get a decent ROI, but prevent them from charging exploitative amounts. Does the NHS have something similar?

      3 votes
      1. Birb Link Parent
        Oh man, that sounds really nice. Here in the US one of my prescriptions costs me $60-$70 a month. The one I used before that only cost me $15 a month, but then the savings card they had for it...

        Oh man, that sounds really nice. Here in the US one of my prescriptions costs me $60-$70 a month. The one I used before that only cost me $15 a month, but then the savings card they had for it expired and it began to cost $230 a month :/ It messed me up until I was able to switch to a new medication.

        2 votes
      2. [2]
        feigneddork Link Parent
        I assume so as the NHS does kick up a fuss over certain drugs that they deem are "too expensive". I'm not sure who does it but from what I understand it's a bit one-sided and in favour of getting...

        I assume so as the NHS does kick up a fuss over certain drugs that they deem are "too expensive". I'm not sure who does it but from what I understand it's a bit one-sided and in favour of getting the cheapest treatment for the government rather than necessarily considering the costs.

        I may be 100% wrong though. I wonder if Kuvan is available in Canada?

        1 vote
        1. cfabbro (edited ) Link Parent
          Looks like yes. And also: https://www.cadth.ca/sites/default/files/cdr/complete/SR0472_complete_Kuvan-Oct-28-16.pdf Here is an interesting excerpt from that document related to price, too: So it...

          I wonder if Kuvan is available in Canada?

          Looks like yes. And also:
          https://www.cadth.ca/sites/default/files/cdr/complete/SR0472_complete_Kuvan-Oct-28-16.pdf

          Here is an interesting excerpt from that document related to price, too:

          Cost and Cost-Effectiveness
          The manufacturer submitted a confidential price of $33.00 per 100 mg tablet of sapropterin. Based on representative body weight values obtained from trials of sapropterin, and depending upon dosage, annual costs for an 11 kg patient were estimated at $12,000 to $36,000; $24,000 to $72,000 for a 29 kg patient; and $48,000 to $169,000 for a 68 kg patient.

          So it looks like it may just be a rather expensive drug to manufacture currently, and at the doses required to be effective for various weights of people, that adds up rather quickly.

          1 vote