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The million-dollar drug (2018)

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Re: The million-dollar drug (2018)

#81

Earlier quoted context omitted.

If you invalidate people’s patents for trying to sell their drug at a price high enough to recover R&D costs, they’ll just stop doing R&D for any drugs that will have niche target populations.

I don't want to sound like a communist but it's not people who are holding patents and funding research. Usually research is funded by governments by subsidizing universities and research institutions or by companies. So we can have governments continuing to subsidize research, but forbid universities and research institutions to sell the rights to only one company.

In the example we’re talking about here in the article, university research generated the treatment itself, and then a pharmaceutical company spent hundred of millions of dollars conducting clinical trials and bringing the drug to market, including wrangling with regulators and lobbying EU politicians directly to get acceptance of the safety and efficacy of the treatment in spite of the small sample size of the trials due to the extreme rarity of people with this disorder.

So the question of who did the initial research and who funded it isn’t really important to the question of whether invalidating patents left and right will negatively impact the rate at which new drugs are brought to market.

If the government wants the company’s patents and distribution rights, at this point I’m sure they’d be willing to sell everything over to the government at cost. Clearly no government is interested in buying the rights for $200M, any more than they are interested in buying doses for $1M each. The company that brought this treatment to market has clearly gotten utterly screwed here, and the nature of the comments on the article suggest that a lot of people here are disappointed that no governments have intervened to screw them even more for the audacity of thinking that they should be compensated for their work.

Perhaps the lesson here is that maybe seizing their parents for not selling their treatment at a loss isn’t actually a bad idea. Maybe there’s no risk of discouraging pharmaceutical companies from developing expensive treatments for niche conditions, since it’s already clearly a terrible idea, and companies already won’t be making the mistake of ever doing it again.

Re: The million-dollar drug (2018)

#82
post #75

Earlier quoted context omitted.

>And let's not forget that this business often operates with sickeningly huge profit margins. This is grossly misinformed Looking at the UniQure Tax filings for 2020, They had 37M in revenue, -122M in R&D expenses, and -42M in general expenses, so they were -125M in the hole that year. https://uniqure.gcs-web.com/static-files/8f960e6d-c40c-474e-...

I work in finance and of course it is not true for every company and I didn't refer to them. From a collegue I know that they purged drugs from their portfolio because it made less than But you are right. It is very different.

Who are you referring to in your 80% example? Also, what do you mean by purged? Do you mean stopping manufacturing of an approved product?

No company is gonna cut a an approved drug with hundreds of million in net profit because the % profit is <80. I could see them cutting drugs if the total profit is low tho. This helps them focus on other more profitable drugs with. That is to say, most companies don't want to be making 100 products that net low millions each. They want a few products that make 100 million+ each.

Re: The million-dollar drug (2018)

#83
post #78

Earlier quoted context omitted.

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 licensin…

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.

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.

Re: The million-dollar drug (2018)

#84
post #78

Earlier quoted context omitted.

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.

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 w…

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

Re: The million-dollar drug (2018)

#85

Earlier quoted context omitted.

obviously comparing my business as a consultant to a pharmaceutical company is like comparing a single raisin to a field of watermelons, but I am of the opinion based on reading that the benefits of spending money to reduce profits and taxes seems to be greater the larger the business, and thus that the principle must hold.

Business losses offset profit, rather than taxes owed, and though losses can be carried forward for years to offset taxes, a company does at some point need to turn a profit for the tax benefits of its losses to matter at all. The article mentions that the company took investor money for this, and it seems to be a fairly small pharma R&D company, so I doubt they have some pile of other successful drugs that they are…

>The article mentions that the company took investor money for this, and it seems to be a fairly small pharma R&D company, so I doubt they have some pile of other successful drugs that they are offsetting these losses against.

ok but it would seem to me that supposition sort of works against the supposition that they don't want to lower the price because then they would not be taken seriously in future negotiations, unless the company has some other sources of revenue to keep them going it would seem unlikely they would be available in that future.

in fact in the article it says

>In the 2 1/2 years it took to win EMA approval, AMT, which had no other products to sell and no revenue from Glybera, lost millions of dollars. The company was formally liquidated in 2012. Its assets were acquired by a new private company, uniQure.

I doubt they bought those assets for the millions that were lost - when I look at uniQure https://www.crunchbase.com/organization/uniqure it looks like they have reasonable money.

from the quotes in the article there are 100s of millions invested in uniQure but I'm not sure if that investment was made because people were like 'whoa, they got this million dollar drug!', if so seems weird that investors would invest for that reason because if I heard a company was selling a million dollar drug my next question would be 'how many billionaires need that drug?'

Re: The million-dollar drug (2018)

#86
post #75

Earlier quoted context omitted.

I work in finance and of course it is not true for every company and I didn't refer to them. From a collegue I know that they purged drugs from their portfolio because it made less than But you are right. It is very different.

Who are you referring to in your 80% example? Also, what do you mean by purged? Do you mean stopping manufacturing of an approved product? No company is gonna cut a an approved drug with hundreds of million in net profit because the % profit is <80. I could see them cutting drugs if the total profit is low tho. This helps them focus on other more profitable drugs with. That is to say, most companies don't want to be…

I will not disclose the company name.

With purged I mean exactly this. Purged. 80% was low from their point of view. Don't know how many products they had. Couldn't believe it at all.

Re: The million-dollar drug (2018)

#87

Earlier quoted context omitted.

What does the patent cover in this instance? The very concept of patching the gene? Or is it the mechanism of doing so?

It looks like mostly the use of a specific protein to treat the disease. This appears to be the original (and now expired) patent https://patents.google.com/patent/CA2370081C/en?q=Alipogene+... .

Cheers mate :)

Re: The million-dollar drug (2018)

#88

I can’t imagine how hard it must be for the dozens of people out there suffering from this rare ailment knowing a perfect cure/treatment is possible but not worth it for the shareholders.

As hard as for anyone who couldn't afford a $1000 drug or someone who couldn't afford a $100...

The ugliness of inequality fueled by capitalism is more pronounced in medical treatments, I've witnessed it firsthand several times.

In early 90s as 6-7 year old I had to undergo a revolutionary treatment at most expensive private hospital in India, days before surgery the doctor privately demand a large sum of unaccounted money. This repeated several times for subsequent surgeries and my father had to go in large debt each time.

We were a middle-class family by Indian standards yet my family's lifestyle were severely limited by from my medical expenditures, A poor family doesn't even stand a chance. What's worse is that the doctor had made incorrect diagnosis of my ailment at that time which lead me to a life-threatening recently.

This is what worries me about the COVID pandemic, Medical professionals who honestly believed that they're doing a service to humanity rushed to the front lines without any regard to their or their family's safety and many of them have perished. Now the ratio of corrupt entrepreneurs masquerading as medical professionals who flew to COVID-free islands during pandemic to the medical professionals who treat their profession as a service has now further worsened.

Re: The million-dollar drug (2018)

#89
Society itself is collectively responsible for this failure, not the patent owners. Funding could have been provided through charity, or through legislation. But this was not done, and instead development of this drug was left up to profit seeking investors.

It isn't the investors' duty to bankrupt themselves to produce this drug. They tried to find a way to get this produced through the private sector, and they found that it was impossible. It should instead be handled through the public sector, and it is the general public who are ultimately responsible.

Re: The million-dollar drug (2018)

#90

Earlier quoted context omitted.

Or is that too cynical? My, you innocent child, that you have to ask this. (I have a genetic disorder commonly treated with one of those drugs that cost $300k annually.) Edit: I was going to delete this in short order but now that it's flagged, I'm leaving it. People with genetic disorders get all kinds of hatred from the world and medical system for just wanting to be healthy and how dare we say that online.

Discussing the value of a human life, and figuring out how much the many are willing to sacrifice in order to treat the needy few, isn't something that should be out of bounds. I don't think the voices of the few should be silenced. Its uncomfortable maybe, but I think not a discussion to avoid.

Our economic system requires endless amounts of busy work. If that busywork doesn't exist people will compete for a handful of jobs because they cannot comprehend the idea of doing less work per person.

If that busy work consists of keeping people alive and advance medical science it's at least a better use of human potential than working via door dash.

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