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> One can object to the fact that the means of pharmaceutical production are privately owned, but given that these are not currently non-profit institutions, the outrage seems misplaced.

The outrage with the outcomes is the only way a society to addressing the question of the appropriateness of the structures which produce the outcomes. That it is a natural outcome of the existing structure doesn't mean that it isn't absurd, though it might mean that if it is absurd, it is only because the structure of which it is a natural consequence is also absurd.

There exists a moral line, somewhere. In this case, parents of children with a rare, dangerous condition and the doctors that treat them find themselves on one side.

If the price increase had been negotiated, or given fair warning, or was tied to any documentation of the cost of production, it would be much more tolerable - or at least understandable.

Instead, this follows a recent trend of exploiting sick people for profit through mind-boggling price increases for critical medications after sometimes decades of very low prices. There is most certainly not a 2000% increase in the cost of production - if there were, there would likely be a lot more transparency.

Yeah, you know what it seems like to me? That old saying that you can't put a price on human life, that's what these pharma companies are testing now.

"Will they pay, even if we raise the price by 20x?"

That's not the kind of behavior I'd like to look back on for my own life, when I'm at the end of my days.

> That old saying that you can't put a price on human life

It's a nice platitude, but it's obviously untrue. The unstated implication is that a human life actually has infinite value, which is even more obviously untrue.

It's easy to find an upper bound on the value of a human life; would you be willing to pay ten trillion dollars of public money (which would otherwise be hypothetically used to finance schools, research, etc.) to save the life of a single child?

Every day is the last day you have to make a decision about the rest of your life.

If the manufacturing cost is unsustainable expensive then who burdens the moral obligation to pay it? Me? You? That other guy who is over there and conveniently not in my backyard?

> Without more information, I think the indignant tone and format of this article are unwarranted.

Agreed. For me, that "more information" includes things like: whether or not the drug is viable at its former price, the likelihood of this price driving other entrants into the market to find new solutions to address this problem, the ability of other manufacturers to develop substitutes, the amount of the profits that will be returned into development of other drugs that will save other lives, the baseline cost per life saved across the pharmaceutical industry, et. al.

High prices attract attention to existing social problems and are sometimes useful. Other times they're opportunistic and exploitative. It's not trivial to isolate the two.

Yes, but the fact that Martin Shkreli wanted to buy the rights for this drug makes me think there is somewhere a list of potential drugs that can be exploited in this way, and multiple companies are bidding for them.

Well, I certainly wouldn't expect a business executive to invest in a drug he suspects will be unprofitable. That aside, if the drug is unprofitable, and society has established as a general principle that the private sector is the appropriate venue for drug manufacturing, then I don't understand the objection to a price increase in principle. Without more information, we just don't know that this is an instance of price gouging. I'm open to that possibility, but I suggest waiting for actual evidence before taking your pitchfork out of the shed.

I'm going to repost a comment I made elsewhere that may shed some light:

Maybe we need a charity that builds a research war chest to threaten companies like this with redevelopment. It costs a lot to replicate a pill and go through the FDA hoops, and once a private company does, the price just gets competed down to the point where it doesn't cover sunk the redevelopment costs--so in some scenarios no one bothers.

Instead, a charity doesn't have to take profit into consideration and can just threaten: drop your price or we'll persue independent redevelopment. With only the credible threat of spending on independent redevelopment, they could devalue a lot of these orphan drugs, and then buy up the rights/trade secrets to them for open release.

Competing businesses can't do this, because they can't pose a credible threat, because following through wouldn't make business sense. A charity can have non-business aims.

I wonder if insurance companies would have some motivation to at least partially fund such a charity?

Not likely; insurance companies have no incentive or motivation to reduce the cost of healthcare. The more money that moves through the healthcare system, the more money that passes through the insurance company. That gives them power, giant transient account balances, and "too big to fail" status.

I agree in part. It seems like in practice it looks like insurance companies have little interest or capability to reduce healthcare costs. However, I don't understand your reasoning as to why. The high cost of drugs puts the health insurance companies in competition with drug companies for actually ending up with money in hand flowing through healthcare.

The health insurance companies collect money monthly from all enrolled participants. That money sits on their books until it has to be paid out for claims. Higher healthcare costs means that the insurance company can raise the monthly premiums, which means that it's got more money sitting in it's accounts before the claims get paid. That money isn't under a mattress; the insurance company has it invested in something that's earning interest. So higher healthcare costs == more interest earned on the premiums as they pass through the insurance company on the way to paying claims.

I've posted it as a top level, but -- questcor controls the market for this drug after an 2012 purchase[0]. Here's your "more information". I wouldn't be surprised if Martin Shkreli got the idea for buying and hiking the DataPrim price after reading[0]. Expect a lot more of these things to happen.

[0] http://www.nytimes.com/2012/12/30/business/questcor-finds-pr...

If I'm not mistaken in detecting hostility from the scare quotes, I'd like to say that I don't believe it is unreasonable to expect that the journalist who wrote this article to provide that information before making appeals to emotion, rather than depending on commenters on news aggregators to disseminate it.

I would not say "hostility", but ... yes, (prior to your edit) I assumed you were actually defending the company.

But after your edit - I no longer think that. I just wonder where you got this idea about unbiased or factual journalism. I've never seen it happen, and even if they tried (which they don't), there's always a bias. Personally, I try to read the facts and do my own research on anything I find interesting. Sturgeon's law applies to journalism as well: 90% of everything is crud.

I actually was not arguing against bias in the article, rather the appeal to emotion and failure to seek a reasonable explanation before directing the reader to a conclusion. I wouldn't mind if it had taken a stance. Perhaps out of personal prejudice, I dislike the attempt to influence opinions without providing evidence, especially after the flagrant attempt to elicit empathy before such evidence could even have been presented. Take this tidbit:

"Mia Brooks of Salmon Arm, B.C., noticed the seizures in her son more than a month ago."

When Mia Brooks of Salmon Arm, B.C. first noticed seizures in her son is completely irrelevant to the subject of the article. I've given my time to read in the hope of forming an educated opinion on a topic of general social interest, and the first thing I encounter after reading a description of the disease is a story meant to induce feelings of sympathy for these unfortunate people. This kind of journalism is, in my opinion, manipulative and socially destructive, no matter how noble its author's intentions. I realize this is a common enough problem, but I don't feel apologetic about pointing out when I see it.

The claim of losing money is almost certainly a lie. The marginal cost of a drug like this is usually almost nothing. The manufacturing costs tend to be small, and something like this doesn't need a sales force.

Meanwhile, Questcor and Mallinkodt were/are the poster children for abrupt and unwarranted drug price hikes by orders of magnitude. They are bad actors in an industry where scheming - both legal and otherwise - is so common that no one thinks twice.

> The claim of losing money is almost certainly a lie. The marginal cost of a drug like this is usually almost nothing.

Spoken like someone who has never worked on low-volume production before. Fixed costs that amortize to trivial amounts when producing a few million or billion doses a year get significant when amortized across a few thousand.

I don't buy the article's unsourced assertion that the medication only costs $230/dose to make. Assuming 4,000 doses/year (800 patients * 5 doses/patient [$23,000/dose / "over $100,000 per infant"]), that's a production cost of only $920,000. The cost of regulatory compliance alone is probably greater than that.