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Comment by rsyring | Hacker News Reader

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.

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

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.

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.

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

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.

[flagged]

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.

[flagged]

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 and taking the intended spirit of the site more to heart, we'd be grateful.

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.

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.

Eh, whatever man, I tried to be self-deprecating and reflective.

If you want to preach message board ethics, maybe you should have some empathy yourself.

I've only seen this now, three days later. Sorry you felt unfairly attacked by my comment. It just seemed you were doubling down on the view that your comment being equivalent to the one you were replying to, which, is just not how we want to think about things (comment should be evaluated in their own right).

Maybe I was too harsh. We had a quite a lot of politics-related flamewar last week, which always makes the job less enjoyable, most-of-all when users take out their political anger on us.

Sorry if I seemed to lack empathy. I did appreciate the apology and I hope you'll keep using HN and making an effort to contribute positively. And thanks for sharing your feelings about my comment, it's helpful to know, so I can better calibrate in future.

Could you please refrain from attacking other users like this on HN? 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 and taking the intended spirit of the site more to heart, we'd be grateful.

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