724
Amurrrka! Land of the free!
Why is the drug so expensive? Does it have to do with patent laws, or is the actual manufacturing process ridiculously expensive?
Does it require rare materials?
I am fairly confident it must be made from unicorn blood and the glandular excretions from the lochness monster.
Really? I thought it required catching a virgin piranha by hand in the middle of the Amazon.
They must have switched suppliers.
load more comments
(1 replies)
I commented this elsewhere, but to answer your question,
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.
SMA type I also is 100% fatal by year 2-3 and the baby dies without being able to even lift their head. It's a terrible prognosis.
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.
load more comments
(1 replies)
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.
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.
load more comments
(4 replies)
load more comments
(4 replies)
Sad truth: Nothing about this will change until the boomers are gone.
this post was submitted on 05 May 2024
724 points (97.5% liked)
News
23770 readers
3609 users here now
Welcome to the News community!
Rules:
1. Be civil
Attack the argument, not the person. No racism/sexism/bigotry. Good faith argumentation only. This includes accusing another user of being a bot or paid actor. Trolling is uncivil and is grounds for removal and/or a community ban. Do not respond to rule-breaking content; report it and move on.
2. All posts should contain a source (url) that is as reliable and unbiased as possible and must only contain one link.
Obvious right or left wing sources will be removed at the mods discretion. We have an actively updated blocklist, which you can see here: https://lemmy.world/post/2246130 if you feel like any website is missing, contact the mods. Supporting links can be added in comments or posted seperately but not to the post body.
3. No bots, spam or self-promotion.
Only approved bots, which follow the guidelines for bots set by the instance, are allowed.
4. Post titles should be the same as the article used as source.
Posts which titles don’t match the source won’t be removed, but the autoMod will notify you, and if your title misrepresents the original article, the post will be deleted. If the site changed their headline, the bot might still contact you, just ignore it, we won’t delete your post.
5. Only recent news is allowed.
Posts must be news from the most recent 30 days.
6. All posts must be news articles.
No opinion pieces, Listicles, editorials or celebrity gossip is allowed. All posts will be judged on a case-by-case basis.
7. No duplicate posts.
If a source you used was already posted by someone else, the autoMod will leave a message. Please remove your post if the autoMod is correct. If the post that matches your post is very old, we refer you to rule 5.
8. Misinformation is prohibited.
Misinformation / propaganda is strictly prohibited. Any comment or post containing or linking to misinformation will be removed. If you feel that your post has been removed in error, credible sources must be provided.
9. No link shorteners.
The auto mod will contact you if a link shortener is detected, please delete your post if they are right.
10. Don't copy entire article in your post body
For copyright reasons, you are not allowed to copy an entire article into your post body. This is an instance wide rule, that is strictly enforced in this community.
founded 2 years ago
MODERATORS