"Well, one pharma company has the patent, and we need to let them charge what they think the market will bear. Sorry LPLD carriers, you have to die now." Apparently, this is the best the world can manage in 2018.
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."
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.
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.
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.
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... ?
> 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.
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.
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.
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?
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.
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.
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.
I don't have a problem with the idea of patents. I just think we could be a whole lot more pragmatic about them. They're supposed to incentivize useful behavior.
While I don't disagree with your point, the company that bought the patent paid a lot of money for it from the company that developed it. Patents being exchangeable is not necessarily a bad thing.
How do you incentivize environmental research? How are we supposed to find solutions to climate change if they can't be patented?
Copyrights are just as bad as patents, and musicians/writers shouldn't make people pay for their music/books.
We should start giving money to causes we support, whether it's art, medical research, software projects, etc. It's a mistake to think we should only give money if we're forced to by law (through pricing something that's not scarce).
The government does frequently fund the discovery of new drugs. The problem is that the return on that investment is usually abysmal and the taxpayer ends up not only paying to fund the drug’s discovery, but also paying absurdly high prices to buy it from pharmaceutical companies who passed some or all of their risk onto taxpayers.
Of course. Most of basic science in the US is government funded. I'm wondering what the OP thinks about removing the barrier that they identified (private corps paying for the trial vs gov paying for the trial) and how that would affect their thinking.
The government is the whole reason the clinical trials are required before patients can be treated with a working drug. They are the cause of the problem, not the solution.
Reading the article has convinced me that drug patents in particular are a great idea. Isn't it wonderful that we live in a world where futuristic new treatments like this can be developed?
Yes it's true that people can't get the drug now, but at least someday it might be available.
Without patents, who would you find to work for free developing something like this?
> Isn't it wonderful that we live in a world where futuristic new treatments like this can be developed?
This futuristic new treatment can no longer be developed or produced by ANYONE in the world, without the consent of this company. Before the patent, anyone could. Do you think that's not a problem?
We'll incentivize researchers the same way we'll do with musicians and writers in a post-copyright society. People who think this disease is important will crowdfund the research, and those who want to receive experimental and personalized treatment will pay for it.
How do you think we should incentivize things like environmental research? Is our knowledge about climate change patentable? What if someone found a cure?
Anyone could, but nobody did, or would have without either a profit motive or massive state funding.
> Do you think that's not a problem?
Well it’s certainly not the most ideal thing you can imagine, but I don’t see a better way in a capitalist society to incentivize medical research. Do you?
> People who think this disease is important will crowdfund the research
I’m not aware of any crowdfunding campaign that has raised hundreds of millions of dollars.
> How do you think we should incentivize things like environmental research?
It should be funded by the state
> What if someone found a cure?
That’d be awesome. We should pay them incredibly handsomely for their work.
We don't need more laws. The problem is caused by the government. They're the one that enforce patents and regulate clinical trials. You think they should decide what "made available in reasonable ways" means? What could go wrong...
I see you arguing that things went just the way they should have all over this thread.
This point in particular is completely wrong. The two doctors who made the drug do not even hold the patent and basically gave it away for free to the company trying to distribute it.
So yes, if not for the patent this drug would definitely still exist, and probably be available to people who actually freaking need it.
> I see you arguing that things went just the way they should have all over this thread.
Actually, I never said that anywhere. I think what happened is basically a no-op. Without a profit motive, the drug would never have been developed, and therefore not available to anyone, and we'd be in the same boat we're in anyway.
What I do think is one of two things should happen: Either (1) we decide that the drug is worth it, in which case health systems should pay the owner of this drug fairly for their investment. Or (2) it's not worth it, in which case we're no worse off than we would have been without this company, other than the fact that they wasted a bunch of their money.
(As an aside, note that I said we should pay the owner, fairly for their invention, not the original developer who voluntarily gave up the rights. This is an important distinction as the ability to voluntarily transfer property rights is pretty central to the whole concept. Imagine if after you bought a car, anyone could take it, because you're not the original manufacturer. It's not hard to see the path from this society to one where nobody bothers making cars.)
> The two doctors who made the drug do not even hold the patent and basically gave it away for free to the company trying to distribute it.
Those two doctors did the least expensive part of the whole operation. The more expensive part was funded privately. If you want to fix this you can either have the government fund that expensive part, or you can have it done privately and pay the owners what they want.
> if not for the patent this drug would definitely still exist, and probably be available to people who actually freaking need it
Sure, maybe the doctors still would have done the research, but there would be no money either for the clinical trials, and so manufacturing and distributing the drug would be illegal.
"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."