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this post was submitted on 05 May 2024
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Important facts for people that didn’t bother to read the article: it’s $2.1m each, so total is $4.2m. The coverage of the drug was cut on a schedule that was determined in January. The diagnosis of the disease was 5 days after the cut.
The cost isn’t an issue in my mind, but I think good to know how much the parents are in for. Insurance companies exist because of these costs, they should have to cover any treatment that has significantly higher success rates, especially when the lack of coverage will result in death, or other life-long consequences.
The timing and schedule are important as the headline makes it appear this decision was in response to these kids being born with the condition, when in fact, there was no diagnosis at the time of the cut and these kids were still months away from being born when the decision was made.
Final bit, though this wasn’t in the article, the drug is being covered for these kids. It took pressure from the state government apparently, or maybe just all the bad press. Shouldn’t change anyone’s opinion on POS insurers, but it’s at least good news that these kids aren’t condemned to a death sentence.
How is it not?
Yes, they should. But unchecked costs are a big reason why health insurance is so awful right now. We shouldn't tolerate this price gouging by pharmaceutical companies.
And don't tell me it's all about R&D.
https://www.treatmentactiongroup.org/resources/tagline/tagline-fall-2018/pharma-lies-people-die-myth-busting-fact-sheet-on-medicine-development-and-pricing/
What legitimate reason would there be to price drug like that? Is that what the r&d cost to create it? Greed. Thats where 99.9% of cost issues end up for
Zolgemsma is a modified version of adeno associated virus and has to be grown under specific conditions. It costs $500k-$1m per production.. It's also a one time injection that functionally cures the person of the disease. There are a couple other options but for comparison, the other therapeutic is Spinraza which is an intermittent intrathecal infusion which is $805,000 for the first year of therapy and $380,000 per year thereafter for the rest of your life.
To be clear, I think we should bear the actual costs of research, development, and manufacture as a society and not profiteer off the sick, but there are some contributory reasons for the price.
If it costs 1 million to produce then anything above a 1.1 million cost is still pure greed.
yeah this video was helpful to understand the complexity in manufacturing AAVs, namely the raw size of the proteins manufacturers need to create & interweave.
👆 that little dot in the lower left corner is Aspirin (timestamp 12:00)
Wait if that's Aspirin then how do they get the big one inside of you? 😱
Those are molecule sizes, all these molecules are still very small
Oh good. I was getting worried there...
There's always more to the story isn't there? Else it wouldn't be called clickbait
Modern medical research targeting worldwide drug distribution is ridiculously expensive due to legislation in different countries. Gone are the days when a pharmacist could give random shit to the unsuspecting clients to see if they would survive their walk home. And I don't think you'd want these days to come back.
Modern drugs cost tens of millions of dollars to develop at a minimum, and can easily reach into the billions.
And usually subsidized with public money.
If only there was a class of people with so much money we could tax the whole amount from them and they wouldn't even notice.
thats less than nine months ago and insurance would have access to maternity records
Not sure how that’s relevant, can you explain a bit more about what you’re thinking? They couldn’t have been diagnosed with a need for the medication at early-stage pregnancy.
how do you know?
Because there are very few diseases and conditions that can be detected before birth, and unless they have physical development characteristics (this one doesn’t until after birth) the only way to diagnose them is an invasive procedure that it’s dangerous to the fetus so they are only done when there is a very high suspicion that there is something to detect.
so more like "unlikely" not "impossible" ?
Not diagnosed but if there were early indicators of a problem that could fit into a statistical/AI model that they had a large probability of a range of problems.