[shmerl]

How much does it cost now, after all the R&D and tests are completed? I doubt they need millions to actually produce the drug once they know how to and that it works. So they basically prefer not to produce it at all, than to sell it at affordable prices. It makes no sense to me.

[s1artibartfast]

I think it makes no sense because you are greatly underestimating the cost to produce and market the drug, even after sunk costs. It could easily be many hundreds of thousands of per dose.

[shmerl]

May be, but probably not a million. So they overpriced it and ended up not making it available at all.

Also, I don't think marketing is a big issue for such drug which is the only available option for affected people.

[s1artibartfast]

It looks like uniQures business model is to take risky products through clinical development then sell them to other manufacturers. Faced with no buyers and large costs to keep it on the market, they chose to pull it.

We can speculate on what the cost per dose would be with no profit, but ultimately, there wasn't enough profit at a reduced price for uniQure to provide it.

The fact that no other companies are licensing the drug shows that they agree that there isn't enough of profit to be made.

Here is an article with some more information.

https://web.archive.org/web/20170901212655/http://www.fierce...

[shmerl]

Well, that's my point. They developed it, but no one can make it now even if it's cheap to actually make (not to pay licensing for it). Probably patents and such. Not a big fan of such kind of methodology for medicine where profits trump benefits for people.

[s1artibartfast]

But you have to consider that nobody works for free and patents expire.

If nobody thought they could make money, Glybera would never have made as far as it did.

You could start a non profit to make Glybera today as the main patents are expired, but nobody would give you the money to develop it and run trials without a profit motive.

Charities and the government have better ways to spend money than help a few people with a rare disease.

If you want to get rid of the profit motive, you have to find something better to replace it.

[shmerl]

I disagree that it couldn't. If everyone only cares about profit in it, then yeah. But that's exactly the point of criticism.