Two newborn twins need a one-dose treatment that would save their lives: Zolgensma, a $2.1M drug. Insurance (also the mother's employer) cut coverage of the drug the day after they were born.

_number8_@lemmy.world to News@lemmy.world – 716 points –
wbtv.com

america is so fucking based man

in any proper country that company at least gets forced to pay by the government then ordered to shut down forever due to wanton cruelty. all the employees get generous severance except whoever made that call. depending upon your view of carceral punishment there are a few ways to go with that guy.

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Drug R&D is expensive

You mean the R&D that the government paid for to take place at a public university, as is the norm? That's the expense you're claiming justifies this profiteering?

Until they start actually paying those subsidies back, that excuse doesn't explain any of their profiteering.

I’m a researcher in the biological sciences at an institute which receives lots of government funding, and was at a university before my current position. We are not being paid to develop drugs. We are being paid to develop new knowledge that hopefully can be useful (in the broad sense of the term). Practically no one I’ve ever met during my time in academia is developing drugs, and the small few that were doing so were only researching a single, small part of a very long, complex process.

The R&D you are paying for is for us to typically find out that “Protein X interacts with Protein Y and causes Effect Z. When we delete Protein X then Effect Z goes away”. We might also find out that “Molecule Q can block the activity of Protein X, but has a host of issues that make it ineffective when given to Petri dish cells and mice.” This can give you a lead towards making a drug, but what we do is basically discover a possible starting point, nothing more. If someone wants to make a drug from this, they typically will start a company and get venture capital and angel investor money, as university labs are usually poorly equipped financially and talent wise to actually develop a drug (to speak nothing of pushing it through clinical trials). Transforming Molecule Q into a bona fide drug candidate is going to require a massive amount of work that most lay individuals are completely unaware of.

I’m really curious where this concept that the government is spending tons of money on drug R&D at publicly funded universities is coming from. It sounds great as a talking point, but from my perspective within the system it’s not quite how things work.

We are not being paid to develop drugs. We are being paid to develop new knowledge that hopefully can be useful

You know that the R in R&D stands for "research", right? 🤦

The R&D you are paying for is for us to typically find out that “Protein X interacts with Protein Y and causes Effect Z. When we delete Protein X then Effect Z goes away”. We might also find out that “Molecule Q can block the activity of Protein X, but has a host of issues that make it ineffective when given to Petri dish cells and mice.”

Sounds a hell of a lot like that's the kind of research that's indispensable when formulating drugs.

This can give you a lead towards making a drug

Ya think? 🤦

but what we do is basically discover a possible starting point, nothing more

Sounds like you're doing all of the research and other legwork tbh. That's hardly just "a starting point".

I’m really curious where this concept that the government is spending tons of money on drug R&D at publicly funded universities is coming from

You mean other than how you just confirmed it while trying to disprove it?

from my perspective within the system it’s not quite how things work.

That being the perspective of living proof that you can be intelligent and simultaneously oblivious of the obvious.

Either way, pharmaceutical companies aren't spending all their income on R&D. By far the biggest expense is advertising and after that, it's stockholder dividends of the absolutely obscene profits they're making on ripping off sick people.

Lol the guy said it himself: “I am a researcher” doesn’t understand there is an entire other part called development that also gets government funding. He works in the field and doesn’t realize that the pharmaceuticals companies “developing” drugs also get grants and tax breaks.

It’s the same for engineering.

The government funds all those small pieces of knowledge through various grants. Some are private, but most are from the government.

Then someone will take those bits of knowledge and assemble them into a new drug. 90% of the boring research is already done.

My employer pays me and my team a lot of money to develop new engineering projects based on these academic papers. Everything is cited, and normally the grad students are ecstatic to be named as contributing work. Their names don’t show up on the design patent, but if someone digs into it they can see all the work that contributed.

You might not see it at your level, and I am truly sorry for that because you deserve credit for your work.

I’m really curious where this concept that the government is spending tons of money on drug R&D at publicly funded universities is coming from.

It comes from reality

Onasemnogene abeparvovec, developed by the US biotechnology startup AveXis, which was acquired by Novartis in 2018, is based on research conducted at the Institut de Myologie in France.

The Institut de Myologie in France is a nonprofit org that funds itself mostly from a yearly telethon and government funding... This would be you

Novartis Gene Therapies, until 2020 known as AveXis, is a biotechnology company that develops treatments for rare neurological genetic disorders. It was founded in Dallas, Texas, United States in 2012 by John Carbona after reorganizing a company called BioLife Cell Bank founded by David Genecov and John Harkey. Work done at Nationwide Children's Hospital in the laboratory of Brian Kaspar was licensed to AveXis in October 2013. Unusual for the time, Nationwide Children's Hospital, in addition to upfront and milestone payments, also took an equity position in AveXis.

The Nationwide Children's Hospital is a nationally ranked pediatric acute care teaching hospital located in the Southern Orchards neighborhood of Columbus, Ohio. The hospital has 673 pediatric beds and is affiliated with the Ohio State University College of Medicine

See? At least in part, the money for the start up that D the drug, based on the R France publicly provides, came from the Ohio State University which also receives public funding

As always with Capitalism... Socialise the costs, privatize the profits

This isn't what my understanding of how the system works, but the way you word it, you seem very confident that it is. I'm honestly curious what you read that lead you to this perspective.

This study should be a decent starting point.

Big Pharma likes to hide behind R&D as an excuse for price-gouging American patients and exploiting monopolies, but the math just doesn’t add up,” said CSRxP Executive Director Lauren Aronson. “Big Pharma is investing more boldly in profits, advertising and corporate overhead than in researching new cures.”