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. ( www.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.

GiddyGap ,

Sad truth: Nothing about this will change until the boomers are gone.

TheDeepState ,

Did they get it?

AutistoMephisto ,
@AutistoMephisto@lemmy.world avatar

Something about this insurer stinks. How long does it take to drop a drug from their coverage, usually? And did they know the twins would need this drug before the mother knew? If that's the case, then her employer, who was also the insurance provider, had access to her healthcare records. They had access to all her information and likely paid her OB/GYN on the sly to tell them what was going on with the twins while in the womb.

FlavoredButtHair ,
@FlavoredButtHair@lemmy.world avatar

The cut coverage of the drug for everybody or just the mom? There's no reason for the drug to cost this much. They do this on purpose so less lives are saved.

refalo ,

on purpose

How do you know? Wouldn't more people around mean more money for them?

sparkle ,

One person, or the few people that are born with this rare disease, are probably not likely to net them an average of more than a few hundred thousand over their lifetime, even assuming they make it to adulthood

koavf ,

"Based"?

Admirable; praiseworthy, especially if the thing that is considered "praiseworthy" is unpopular or controversial.

Strykker ,

Sarcasm mother fucker, you don't get it.

koavf ,

There’s no reason to be rude. See Rule 1.

Donkter ,

One of the earliest uses of based is by 4chan users to describe things that were Nazi adjacent or fascist that celebrities and politicians would say and do. It was "based" because the idea is that they were doing the "right" thing even though it was unpopular often doing things like being ok with needless deaths because it also meant it pushed their fascist agenda. I think op is using it ironically in this case like those 4chan cretins use it.

Since then it's been co-opted as the general Internet meme and that's how most people know it now.

koavf ,

I only know it as “I approve of this”, not “lol, I don't approve of this, but I say I am to be hilarious”. This is the danger of adopting this Nazi Internetspeak to be funny.

Soulg ,

Yes but then when someone says <clearly horrible awful thing> is based, it's blatantly sarcasm

koavf ,

Except when it was on 4chan and it was actual Nazis just being Nazis. So no, not blatantly sarcasm.

Soulg ,

Lol

So many people here talking about 4chan who so obviously have no fucking clue what it's actually like and just regurgitating this idea that every person, every single thing, every comment is always bad and nazi and the worst possible version of it that it could be. It's soooo based

koavf ,

No one said that it is all like that, but enough of /b/ is so gross as to taint the reputation of the entire site. Allowing some of the stuff that is on there is enough guilt by association, even if some of the other boards have better discourse.

Fridgeratr ,

It's a sarcasm

koavf ,

There are already comments claiming this, thanks.

Hootz ,

May the insurance agency burn down with all employees inside 😊

inclementimmigrant ,

It's not the employees fault. I know a person who's an actuary at an insurance company, they fight for each case and every day they're depressed at how little they can do but they fight for people when and where they can. Honestly it's a testament to the fact they're still there and how much they have to compartmentalize every day, well at least until beer thirty rolls around and we used to get into a bitchfest about how shitty the health insurance system is.

Soulg ,

Executives maybe but not the employees.

Hootz ,

There may be collateral damage durring the executive purge, thoese who are complicit may face the AI and it's wrath.

Joking of course. It's gonna be fun to see when the AI start taking THEIR jobs though 😂

lagomorphlecture ,

How can one dose of medicine, literally any medicine, be 2 million dollars? JFC.

Hootz ,

Because capitalism and private healthcare

PopcornTin ,

Cost to develop, govt red tape, number of possible customers, and of course, profit. We'd have to analyze each of these, factors weigh the results, etc.

Or we can skip that and just blame the system.

NotMyOldRedditName ,

These things cost billions to create. Those billions are often (or should be anyway) spread out over the millions of people who can use the drug.

When a drug is a one time cure, for something that is rare, it becomes incredibly difficult to make any money back on that unless the cost is incedibly high, or it's government subsidized.

That's why a lot of things we probably could cure aren't cured yet. It just doesn't make sense financially to do it. And if they do do it, people like you get angry at them.

This is much less of a problem in a public single payer system, but even then some of those systems don't cover these kinds of treatments.

nickwitha_k ,

These things cost billions to create. Those billions are often (or should be anyway) spread out over the millions of people who can use the drug.

And the US government funding was equivalent to private industry for 99% of drugs developed this century.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10148199/

NotMyOldRedditName , (edited )

Okay, so this drug costs 1 million instead of 2 million now assuming they didn't offer any subsidy because of that, which they probably didn't.

Edit: just to go further on the topic - if we don't want crazy prices on these types of cures (low / single use, high research cost) they essentially need to be completely funded by the government with a clause on pricing, or simply owned by the government. But you're going to have a hard time convincing people to vote for you when you spend 2 billion hoping for a low use cure vs working on something more widespread and impactful, even if it's the right thing to do.

nickwitha_k ,

It would be easier if it wasn't illegal for Federal public institutions to hold the intellectual property. As it is, even if the research is 100% tax-payer funded, and conducted exclusively through public institutions, a private company still gets to take ownership of the patent and exclusivity rights. It's pretty disgusting.

Pretty much this meme:
https://lemmy.sdf.org/pictrs/image/df2ef9db-8f58-4697-8ce8-28779ab3e96d.png

NotMyOldRedditName ,

well thats... fucked.

Fedizen ,

this is some martin shkrelli shit. Somebody needs to go to jail

cabron_offsets ,

NP just quit avocado toast

TenderfootGungi ,

We should simply pay for research with tax money and make drug patents illegal. It still would not fix this issue. We also need some form of public insurance.

In this case, the only option is bankruptcy.

Maggoty ,

Well we already pay for research with tax money. So we got half of that going on.

solstice ,

Well thank god we don't have any Death Panels from Obamacare though!

nomous ,

They weren't really wrong about "Government Death Panels" thing they just neglected to mention that they already existed, and were staffed by MBA-executives there to make profit instead of boring government drones there to bide their time to collect a pension.

AutistoMephisto ,
@AutistoMephisto@lemmy.world avatar

And they think they're protected by that profit motive. Because they vastly overestimate how much their health and lives are actually worth. If you break it down by the numbers, they actually lose money the longer they keep you alive. At the moment you become a loss center instead of a profit center, they deny coverage.

PopcornTin ,

Canada just beat us to it, is all.

BigMacHole ,

This is how we PROTECT BABIES!

Sam_Bass ,

Nother example of how much care for babies exists after theyre born

SulaymanF ,

“Based” isn’t the word I’d use.

UckyBon ,

Your life ain't worth a thing until you make money for the rich.

BleatingZombie ,

I do that and my life still isn't worth anything to them

Your life will never mean ANYTHING to the rich

Aux ,

Well, stop being poor, problem solved.

Karyoplasma ,

The life of patients is such a joke to pharma companies that the one that distributes this drug (Novartis) thought it would be ethical to "donate" doses through a literal lottery system.

https://www.sma-europe.eu/news/avxs-101-zolgensma-to-be-made-available-globally-through-a-controversial-programme

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