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by entee 2645 days ago
This is such a complicated issue, I'd highly recommend the following as a primer:

https://www.forbes.com/sites/matthewherper/2015/10/13/four-r...

Also Derek Lowe is invariably awesome in this space, one highlight:

https://blogs.sciencemag.org/pipeline/archives/2019/02/05/ta...

Drugs occasionally need to be expensive, particularly on-patent drugs, to make the endeavor worthwhile. That said, it's a two-way street. Making drugs insanely expensive (as has been happening more recently) is breaking the implicit trust that those in the medical field must work hard to maintain. Traditionally pharma was careful not to abuse the inherent "your money or your life" dynamic, it seems these days that is breaking down. It's sad because for very powerful drugs (i.e. gene therapy treatments) the cost is actually quite high to even make the drug (I've heard quotes in the 100's of K even in the 1-2 M), which means the treatment has to be expensive. That said we need to work hard to bring that down, and there's absolutely no place for the kinds of shenanigans going on with insulin among others:

https://www.nytimes.com/2019/01/18/opinion/cost-insurance-di...

With abusive practices like this, how can you ask patients to trust you when you say, "yes but this time I actually need it to be this high"?

3 comments

> "your money or your life"

> (I've heard quotes in the 100's of K even in the 1-2 M)

The thing is that no one+ has that kind of money. So it ends being your money or his life, over and over again. This has long since moved from the space of individual decision making to public policy. But we in the United States refuse to face up to that. We like to pretend that the doctor and patient should be the only ones that have any say in deciding what to do and if anyone outside that room balks at the price tag, no matter how high, they are an evil insurance company or government bureaucrat that doesn't care about human life or something. That's naive and silly. Spending $1 million of public or collective funds on a single individual isn't something that should be done automatically or that we should do out of a sense of guilt.

+Okay a few, but not enough to make a market.

That's what insurance is for. When you buy insurance you're making an agreement to socialize risk, so you're never faced with a $1M bill to save your life.
Health insurance, despite the name, isn’t insurance.

Insurance is paying small sums, at EV negative cost, to mitigate the risk from a rare but very expensive cost.

Health insurance isn’t underwritten and pays out for routine expenses. It isn’t insurance.

I think you are trying to say it is more than an insurance, because it also pays out for routine expenses?
No, it’s not a strict superset because of the underwriting issue.
Even without underwriting it's still insurance, which is "a practice or arrangement by which a company or government agency provides a guarantee of compensation for specified loss, damage, illness, or death in return for payment of a premium" according to Google's dictionary.
Until it costs $1 millions for everyone, then the system breaks down. Every actor is trying to make as much as they can before the music stops.
Why would it cost $1M for everyone? Not everyone has a disease or an accident. And if we were all greatly diseased at the same time, the price tag would be the least of our worry.
I suspect things could be much simpler if universities or government institutions developed drugs instead.
They do. But they focus on the earliest stages of drug development, mostly involving proofs of concept. That doesn't solve the problem of actually getting the drug approved so that it can be used by patients - which is where the costs skyrocket.
As a non-American, why do costs skyrocket in the approval phase? Is it that the drugs have to go through multiple rounds of clinical testing over years? I struggle to understand the astronomical price tags, but I'm assuming it's something bureaucratic?
I think it’s just because of the degree of failure. Going through the rounds of clinical trials might cost £15m, which isn’t much amortized over drug sales, but you might go through 50 candidate drugs that fail (and possibly at the last stage of clinical trials after the money has been spent) before you get one success. Public or academic research bodies don’t have the capital or the appetite for risk to go through that process.

I think there are quite a few drugs which work exactly as intended, except for the small detail that they turn out to be toxic to humans. One of the big outcomes I’m hoping for from stem cells is to be able to test heart or liver toxicity before human trials, weed out a whole subset of failures before substantial money is spent, and make the whole process of drug discovery inherently more efficient.

Part of the reason is not bureaucratic but that clinical testing simply takes enormous amounts of labor, since you need to do it at a large scale.

Alternatively, you could say that the requirement to do that much clinical testing is an arbitrary bureaucratic decision and could be lowered - but there are political reasons (e.g. thalidomide) to err on the side of caution even if extra testing saves less lives than it costs lives because of the delays.

> They do. But they focus on the earliest stages of drug development, mostly involving proofs of concept.

If that is true, then how can BigPharma patent the drugs?

Drugs are tweaked during development. The initial candidate compound is more for proving that a particular class of drugs has promise. But tweaking for toxicity, effectiveness, etc. can only be fully done in clinical trials.
> With abusive practices like this, how can you ask patients to trust you when you say, "yes but this time I actually need it to be this high"?

I think part of the problem is that it's not the same people. Some companies are pursuing aggressive price gouging tactics, and others are legitimately charging a lot of money for something that either costs a lot to make or that they invested a lot of research dollars in.