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Actions reflect someone's priorities. I don't want my son, who has narcolepsy, to be tired all the time. But the medicine that helps him, Xyrem (GHB), is $20K

Actions reflect someone's priorities. I don't want my son, who has narcolepsy, to be tired all the time. But the medicine that helps him, Xyrem (GHB), is $20K a month. Pay it, don't pay it, neither option truly reflects my priorities. It only reflects the hand I've been dealt by other people's priorities.

sudofail 1y ago
Really sorry there isn’t more support for you and your son. American drug prices are insane. In Australia it’s about 600/month
edwardbernays 1y ago
TWENTY thousand a month? Surely this is wrong. Even $2k is ridiculous, but that's just criminal. Honestly, at a certain point, you might consider learning organic chemistry just to synthesize it yourself. It's fairly easy using unwatched precursors.
- dboreham 1y ago
  I don't know the parent story at all, but generally drug companies are allowed to charge $$$$ for certain drugs that are affective for rare conditions, on the basis that it won't be patients who pay for them. Rather payment will ultimately come from government, possibly via an insurer. The idea being that the drugs get made and brought to market when otherwise they would not, because nobody can afford a $20K drug.
- rsyring 1y ago
  https://www.goodrx.com/xyrem https://www.goodrx.com/xyrem > Retail price of $21,239.97 The site is misleading in that they indicate you can just buy it from any pharmacy. But that's not how it works. More details at: https://en.wikipedia.org/wiki/Sodium_oxybate#Cost https://en.wikipedia.org/wiki/Sodium_oxybate#Cost
- paulpauper 1y ago
  This is how it is in the US for uncommon disorders, but the amount paid out of pocket is often vastly less. People are typically not writing huge checks for these drugs. It's still daunting though. The pharma company charges a lot to recoup the cost of developing and marketing the drug, which is typically paid by Medicaid. The economics wouldn't make it worthwhile develop the drug if it were too cheap.
spiralcoaster 1y ago
[flagged]
- rsyring 1y ago
  You say that like caring about the situation I find myself and my son in, not liking it, and sharing that frustrating reality with others is a bad thing.
- ZYbCRq22HbJ2y7 1y ago
  [flagged]
  - tomhow 1y ago
    Please don't reply to a bad comment with an even worse comment. That's the epitome of inflammatory behavior. It's not what this site is for, and destroys what it is for. If you wouldn't mind reviewing https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html and taking the intended spirit of the site more to heart, we'd be grateful.
    - ZYbCRq22HbJ2y7 1y ago
      I apologize. I think if you review my comment history, it is apparent that I follow the guidelines, mostly. I flagged the comment, but I felt particularly inflamed in the moment. Personally, I feel the comments are of equal quality.
      - tomhow 1y ago
        I appreciate the apology but not the equivocation. Addressing someone like that is never ok and means you surrender the right to criticize someone else. If we want others to be better we need to hold ourselves to a high standard first.
        ZYbCRq22HbJ2y7 1y ago

sudofail 1y ago

Really sorry there isn’t more support for you and your son. American drug prices are insane. In Australia it’s about 600/month

edwardbernays 1y ago

TWENTY thousand a month? Surely this is wrong. Even $2k is ridiculous, but that's just criminal. Honestly, at a certain point, you might consider learning organic chemistry just to synthesize it yourself. It's fairly easy using unwatched precursors.

dboreham 1y ago
I don't know the parent story at all, but generally drug companies are allowed to charge $$$$ for certain drugs that are affective for rare conditions, on the basis that it won't be patients who pay for them. Rather payment will ultimately come from government, possibly via an insurer. The idea being that the drugs get made and brought to market when otherwise they would not, because nobody can afford a $20K drug.
rsyring 1y ago
https://www.goodrx.com/xyrem https://www.goodrx.com/xyrem > Retail price of $21,239.97 The site is misleading in that they indicate you can just buy it from any pharmacy. But that's not how it works. More details at: https://en.wikipedia.org/wiki/Sodium_oxybate#Cost https://en.wikipedia.org/wiki/Sodium_oxybate#Cost
paulpauper 1y ago
This is how it is in the US for uncommon disorders, but the amount paid out of pocket is often vastly less. People are typically not writing huge checks for these drugs. It's still daunting though. The pharma company charges a lot to recoup the cost of developing and marketing the drug, which is typically paid by Medicaid. The economics wouldn't make it worthwhile develop the drug if it were too cheap.

spiralcoaster 1y ago

[flagged]

rsyring 1y ago
You say that like caring about the situation I find myself and my son in, not liking it, and sharing that frustrating reality with others is a bad thing.
ZYbCRq22HbJ2y7 1y ago
[flagged]
- tomhow 1y ago
  Please don't reply to a bad comment with an even worse comment. That's the epitome of inflammatory behavior. It's not what this site is for, and destroys what it is for. If you wouldn't mind reviewing https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html and taking the intended spirit of the site more to heart, we'd be grateful.
  - ZYbCRq22HbJ2y7 1y ago
    I apologize. I think if you review my comment history, it is apparent that I follow the guidelines, mostly. I flagged the comment, but I felt particularly inflamed in the moment. Personally, I feel the comments are of equal quality.
    - tomhow 1y ago
      I appreciate the apology but not the equivocation. Addressing someone like that is never ok and means you surrender the right to criticize someone else. If we want others to be better we need to hold ourselves to a high standard first.
      - ZYbCRq22HbJ2y7 1y ago