[lisper]

The last sentence of the article sums it up pretty well:

"If it's not commercially viable to produce a certain therapy, unfortunately, in our Western society, it does not happen."

And it is far from clear that this is not as it should be, because it's not just LPLD carriers about whom tear-terking stories can be told. $1M can be deployed in other ways that could potentially save more lives. Instead of "Sorry LPLD carriers, you have to die now", it might be, "Sorry, 100 poor African children without access to clean water, you have to continue to die of dysentery so we can save this one LPLD carrier."

[mirkules]

You can play this moral dilemma forever. If the one LPLD patient happens to be an expert in 3rd world diseases, then his death would lead to an even bigger tragedy.

In reality, there is no dilemma. The people who can help are morally obligated to help in non-theoretical situations.

If a child is drowning, and by jumping in I have to ruin my $5,000 watch which I would have otherwise later sold to help 100 children, my moral obligation is still with the immediate need of this drowning child.

There is a very good podcast about this very issue: https://itunes.apple.com/us/podcast/philosophy-bites/id25704...

[lisper]

> You can play this moral dilemma forever.

Yes, of course. That's the whole point. It's a very hard problem.

> In reality, there is no dilemma. The people who can help are morally obligated to help in non-theoretical situations.

Really? How much money have you donated to help provide clean drinking water to poor children in third world countries?

> If a child is drowning, and by jumping in I have to ruin my $5,000 watch which I would have otherwise later sold to help 100 children, my moral obligation is still with the immediate need of this drowning child.

Really? You would sacrifice 100 to save 1? That's a very peculiar moral calculus you have there.

[ddingus]

Seriously?

Tell me how a person watches a child drown.

Sorry fam, next week I plan on donating to save 100 kids living in worse places than your dead kid lived in...

Actually facing a scenario like that, and the people involved plays out very differently.

[umanwizard]

There is no argument here other than an appeal to emotion.

Yes, it's true that no normal person would actually avoid jumping into a pool to save a drowning child, even at the cost of $5000 that could save 100 other people. That is the entire point -- human moral faculties are not based on logic, and overweight the interests of people you can see, or whom you can help in obvious, concrete ways, relative to diffuse total global happiness. But the fact that humans are wired to think in a particular way doesn't prove that it's rational or correct.

[ddingus]

News flash!

Emotion, character and reason are all valid in this discussion.

Let me put it to you just a bit more directly:

An aggrieved mother and father are there, facing you and their dead child.

Now, having made this call to let their kid die, what do you say to them?

I will wait...

Actually, I won't. It is one thing to speak of optimal choices when one is seperated from, or above, disassociated.

Real life, where the actual humans are plays out much differently.

Above, when I asked, "Seriously?" it was this I was getting at.

The claim of strange morals, based on some 100 to one, as if!

I found the whole thing deeply disturbing. Not a negative to the participants. Not my intent.

No, what I found disturbing was the detached nature of the whole thing.

Maybe Liberal Arts education remains more relevant than I realize.

Again, not a negative toward anyone. Context matters, that's all.

I very seriously question the general wisdom in having some percentage of us so far isolated from people overall, and any sort of meaningful policy, moral debate being beneficial.

You completely failed to make a meaningful rebuttal. Correct... ?

Like I said, seriously?

[umanwizard]

> Now, having made this call to let their kid die, what do you say to them?

This wouldn't happen, since I'm a (non-sociopath) human.

You seem to have missed the point of the argument completely.

> Real life, where the actual humans are plays out much differently.

Nobody disagrees here.

[mirkules]

> Really? How much money have you donated to help provide clean drinking water to poor children in third world countries?

I was born and raised in a third world country, and I assure you the problem is much bigger than simply throwing money at their problems.

> Really? You would sacrifice 100 to save 1? That's a very peculiar moral calculus you have there.

The sacrifice is only hypothetical, while the drowning child is something of immediate concern. If a person were to stand by watching a child drown in exchange for throwing money at a problem that is neither directly visible nor immediate, I would conclude there is something fundamentally wrong with that person.

[quickthrower2]

Not that uncommon. Seeing how many gadgets get sold e.g. iphones where the money could go to charity to save kids.

[belltaco]

>If it's not commercially viable to produce a certain therapy, unfortunately, in our Western society, it does not happen.

Are there new and innovative drugs for rare conditions coming from non-Western societies?

[umanwizard]

Excellent point. Everybody in this thread who thinks that the most outrageously expensive branches of medical research will continue to happen without a profit motive would do well to think about how many examples of that we have, empirically.

[ekianjo]

Actually close to none. And the socialist/communist countries do way worse in caring for their actual population so the only hope is with the West. Its a miracle to see what we already have now compared to 50 years ago.

[thomastjeffery]

Except $1 millon is not the entire economy.

It's easy to hide resources by equating them to their monetary value.

The fact is that there exist many millions of dollars, and the way each dollar is spent does not determine the way another dollar is spent.

[lisper]

So what? Dollars are still proxies for finite resources, and there are only three possible ways to procure them: their owners can give them voluntarily, they can be forcibly seized by the government through taxation, or the government can print them, which produces inflation and effectively seizes a little bit from everyone who holds dollars (essentially a tax on savings). If you can't get someone to voluntarily spend $1M to save a life, which of the other two processes do you propose to use?

[tptacek]

This isn't complicated. Say there are 1,000 LPLD patients in North America (a wild overestimate). Then treating them with this therapy costs us $1Bn. If we limit ourselves to health care problems, is $1Bn better spent on these 1,000 LPLD patients, or on increasing penetration of existing therapies for other conditions? It seems likely to be the latter.

To believe LPLD therapy objectively deserves the allocation you're talking about, you have to believe that there aren't other cohorts of patients that are currently underserved. But we know that isn't true.

[charlesism]

You make some good points.

I'm not anti- all patents. Let's say, for example, a pharma patent worked more like a trademark: if you aren't going to use it (or maybe, if you abuse it), you lose it. Then we wouldn't have to trust this one company's opinion on whether it is "commercially viable" or not.

Maybe that's a bad idea. I'm not a lawyer, and I don't work in medicine. I just doubt what we have now is the best of all possible worlds. Intellectual property laws are supposed to be a net benefit.

[hakfoo]

They complain about the cost of research, development, and approval... so why not migrate those aspects to state entities which are not beholden to a profit motive?

Drug manufacturing is a very different business than drug discovery. We bundle them together hoping that the profits in one will bankroll the massive loss risk in the other.

But it doesn't work-- we end up with situations like this-- drugs that don't cover their upfront R&D costs, and also issues with questionable market-oriented priorities (I tend to think of the galaxy of me-too erectile-dysfunction medications that hit the market almost immediately after Viagra)

If we shoved a bunch of research dollars into public labs and universities, they could manage research, development, and certification, with the goal to produce a non-patented product that the manufacturers can compete to produce at scale as cheaply and reliably as possible. If the up-front science is paid for, maybe that 1,000 patients are economically viable to produce the actual pills.