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(NPR)   Remember the Ice Bucket Challenge? Here's a new ALS drug it helped create   (npr.org) divider line
    More: Followup, Amyotrophic lateral sclerosis, Lou Gehrig, ALS Association, ALS Ice Bucket Challenge, trial of the new drug, social media feeds, Ice Bucket Challenge, social media trend  
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3428 clicks; posted to Main » and STEM » on 02 Oct 2022 at 12:14 PM (9 weeks ago)   |   Favorite    |   share:  Share on Twitter share via Email Share on Facebook



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2022-10-02 8:47:39 AM  
Cool!  It's good to know that sometimes social media can do good things.
 
2022-10-02 10:09:24 AM  

BizarreMan: Cool!  It's good to know that sometimes social media can do good things.


It happens.  I mean, I remember doing the Tide Pod challenge in 2020, and how it helped fund Ivermectin as an alternative Covid-19 treatment.   I can't help but feel like I made a difference that day.
 
2022-10-02 10:47:15 AM  
content.hy-vee.comView Full Size


????

Just guessing.
 
2022-10-02 11:03:19 AM  
I like feel good stories as much as the next person, but scratch the surface and this whole tale is a Devastating critique of the American healthcare system.
The drug in question isn't new, it's a combination of 2 existing generics. The combination was tested on a whopping 137 people, and extended their life by up to 6 months. The 'developer' set the price at $158,000 a Year!!!
For 2 generics.
In a combination discovered using funding from donations and research tax credits.

Now that it's approved, Medicare and insurance will have to cover it. This isn't the feel good story it first appears to be, is a nail in the coffin of our messed up healthcare system.
 
2022-10-02 11:05:44 AM  
Fark user imageView Full Size


Do some good for mankind today, folks!
 
2022-10-02 12:17:31 PM  
But all my cool friends told me that it was just attention whoring!
 
2022-10-02 12:21:47 PM  
ALS sucks but it doesn't affect that many people.

Wake me up when there's a challenge to restore reproductive rights 🥱
 
2022-10-02 12:22:13 PM  
I'm still waiting for my KONY merch
 
2022-10-02 12:24:17 PM  

Private_Citizen: I like feel good stories as much as the next person, but scratch the surface and this whole tale is a Devastating critique of the American healthcare system.
The drug in question isn't new, it's a combination of 2 existing generics. The combination was tested on a whopping 137 people, and extended their life by up to 6 months. The 'developer' set the price at $158,000 a Year!!!
For 2 generics.
In a combination discovered using funding from donations and research tax credits.

Now that it's approved, Medicare and insurance will have to cover it. This isn't the feel good story it first appears to be, is a nail in the coffin of our messed up healthcare system.


To be fair to the sample.size, ALS is not a common disease and 137 is pretty good for a rare disorder. Things have been approved on weaker evidence.

Look at all the hype around psilocybin in depression, all over the news, but the largest publishes trials are smaller than this.

Other countries with more reasonable laws will get a better price on the drugs. And I'd be happy to be told I can have an extra 6 months of life.

But yes the American system.is farked abd drug development in general is farked. Capitalism and health care don't mix.
 
2022-10-02 12:27:20 PM  

mistahtom: ALS sucks but it doesn't affect that many people.

Wake me up when there's a challenge to restore reproductive rights 🥱


Now this is how you virtue signal.
 
2022-10-02 12:27:20 PM  
TFA:
A social media craze had a positive effect!

This thread:
Positivity about social media crazes? On my Fark? Quick! Come up with reasons why this is meaningless and/or bad!
 
2022-10-02 12:27:57 PM  
I thought the ice bucket challenge was to donate to ALS research OR get ice water dumped on you, not both?
 
2022-10-02 12:29:45 PM  

mistahtom: ALS sucks but it doesn't affect that many people.

Wake me up when there's a challenge to restore reproductive rights 🥱



Yeah, go back to sleep.  Everything will work out in the end, right?
 
2022-10-02 12:31:32 PM  

mistahtom: ALS sucks but it doesn't affect that many people.

Wake me up when there's a challenge to restore reproductive rights 🥱


Don't worry, I'm sure someone else will take care of it. You can go ahead and go back to sleep.
 
2022-10-02 12:31:58 PM  

Private_Citizen: I like feel good stories as much as the next person, but scratch the surface and this whole tale is a Devastating critique of the American healthcare system.
The drug in question isn't new, it's a combination of 2 existing generics. The combination was tested on a whopping 137 people, and extended their life by up to 6 months. The 'developer' set the price at $158,000 a Year!!!
For 2 generics.
In a combination discovered using funding from donations and research tax credits.

Now that it's approved, Medicare and insurance will have to cover it. This isn't the feel good story it first appears to be, is a nail in the coffin of our messed up healthcare system.


I agree with you on all points.  However, why hasn't any non-US companies "discovered" this combination of drugs?  Perhaps they have no incentive
 
2022-10-02 12:32:38 PM  

Permanent Solutions For Permanent Problems: I thought the ice bucket challenge was to donate to ALS research OR get ice water dumped on you, not both?


Technically you are correct. Which means by NOT dumping ice water on my head, I was the true hero of the situation.
 
2022-10-02 12:33:57 PM  

Permanent Solutions For Permanent Problems: I thought the ice bucket challenge was to donate to ALS research OR get ice water dumped on you, not both?


As I remember it, someone would nominate you to take the challenge. You'd make a donation and get ice water dumped on you, and then continue the chain by nominating someone else. If you opted out then you were rejecting the challenge.

And then you'd be mocked by aging football coaches, who were all:
local10.comView Full Size

"Wuss. I do this after every winning game."
 
2022-10-02 12:37:44 PM  
Sometime foundatikns do great work.

Earlier this year I served as a reviewed as a reviewer on on grant funding competition for the Michael J Fox Foundation. They fund innovative work that national granting agencies are reluctant to fund and making more money available pushes more researchers into Parkinson work, or encourages collaborations. And the MJF foundation has really advanced Parkinsons research and made a difference.

Same with the ALS society (foundation?) ALS is a devastating but rare disease. Despite the caveats posted above on issues with drug research (valid points over profiteering on donations), a huge number of studies got funded through that initiative. We never know which things are gonna stick so you gotta throw a lot at the wall.

And some sticks. In Parkinson we have deep brain stimulation. In ALS we have some.new drugs that help at least a bit. If I had ALS I'd take an extra 6 months to see my kids grow.
 
2022-10-02 12:38:27 PM  
I had a good friend die of ALS in 2007.  It's a hell of a way to go.  He could barely move by the end.

He used to joke that the worst part of ALS was that he could get erections but couldn't "do" anything about it.
 
2022-10-02 12:38:41 PM  

Private_Citizen: I like feel good stories as much as the next person, but scratch the surface and this whole tale is a Devastating critique of the American healthcare system.
The drug in question isn't new, it's a combination of 2 existing generics. The combination was tested on a whopping 137 people, and extended their life by up to 6 months. The 'developer' set the price at $158,000 a Year!!!
For 2 generics.
In a combination discovered using funding from donations and research tax credits.

Now that it's approved, Medicare and insurance will have to cover it. This isn't the feel good story it first appears to be, is a nail in the coffin of our messed up healthcare system.


Correct.  But enough God fearing Americans think this is better than what other white wealthy nations do. And, to be honest they would support Healthcare for all, if they wasn't so racist/ supporting a class war.
 
2022-10-02 12:42:02 PM  

Watubi: Private_Citizen: I like feel good stories as much as the next person, but scratch the surface and this whole tale is a Devastating critique of the American healthcare system.
The drug in question isn't new, it's a combination of 2 existing generics. The combination was tested on a whopping 137 people, and extended their life by up to 6 months. The 'developer' set the price at $158,000 a Year!!!
For 2 generics.
In a combination discovered using funding from donations and research tax credits.

Now that it's approved, Medicare and insurance will have to cover it. This isn't the feel good story it first appears to be, is a nail in the coffin of our messed up healthcare system.

I agree with you on all points.  However, why hasn't any non-US companies "discovered" this combination of drugs?  Perhaps they have no incentive


All the big oharma are HQd in the US as the most friendly environment but most are multinationals.

Few large companies really have a nationality. They are not citizens. They base themselves in the friendliest environment bit work wherever is.most convient. You won't find lots of drug research in Adrica because the biomedical sector is not well developed and the international language of science is English.

And both "US" and non US companies sell in and outside the US. It's not like Canadian pharma only sells locally.

Lastly, how much attention are you paying to who develops which drugs abd where that companynis based? Lots of "non american" companies make new drugs.

This concept of the it ok for pharmaceutical to screw the US and somehow tou are saving the rest of the world is a tired American pro corporate right wing talking point.
 
2022-10-02 12:46:14 PM  
*AL'S

Fark user imageView Full Size
 
2022-10-02 12:48:28 PM  

mistahtom: ALS sucks but it doesn't affect that many people.

Wake me up when there's a challenge to restore reproductive rights 🥱


My good friend died of ALS about a month before the Ice Bucket challenge was thought up.  ALS is not something you get one day and are dead the next.

It would be too late to wake him up now.  He would have been on the forefront to restore all rights, like his dad before him.  So, I'm thinking, this is all connected.

The rights challenge began almost immediately.  The name of the challenge was coined later.

It's called Roevember.
 
2022-10-02 12:49:14 PM  

Private_Citizen: I like feel good stories as much as the next person, but scratch the surface and this whole tale is a Devastating critique of the American healthcare system.
The drug in question isn't new, it's a combination of 2 existing generics. The combination was tested on a whopping 137 people, and extended their life by up to 6 months. The 'developer' set the price at $158,000 a Year!!!
For 2 generics.
In a combination discovered using funding from donations and research tax credits.

Now that it's approved, Medicare and insurance will have to cover it. This isn't the feel good story it first appears to be, is a nail in the coffin of our messed up healthcare system.


Now do PrEP drugs.  Developed funded by the taxpayers, patents held by the Federal gov't but for some reason Gilead Sciences is the only one making money from them.
 
2022-10-02 1:00:17 PM  

Permanent Solutions For Permanent Problems: I thought the ice bucket challenge was to donate to ALS research OR get ice water dumped on you, not both?


It started off as "donate or get soaked" but changed along the way as it became popular.
 
2022-10-02 1:05:34 PM  
Planking was well on it's way to curing cancer until Gordon Ramsay killed it.
 
2022-10-02 1:07:05 PM  
Relyvrio, made by Amylyx Pharmaceuticals of Cambridge, Mass., was approved based on a single study of just 137 patients.

See, this is why you shouldn't read the article;.
 
2022-10-02 1:15:45 PM  

mistahtom: ALS sucks but it doesn't affect that many people.

Wake me up when there's a challenge to restore reproductive rights 🥱


You should wake up anyway. September ended.
 
2022-10-02 1:18:23 PM  

genner: Relyvrio, made by Amylyx Pharmaceuticals of Cambridge, Mass., was approved based on a single study of just 137 patients.

See, this is why you shouldn't read the article;.


It's a relatively small population and is above the magical minimum sample size for a normal distribution so I suppose it's plausible to find a representative sample.  Agreed though that a bunch of samples wouldn't have been a bad idea but perhaps they had difficulty selecting an unbiased sample?
 
2022-10-02 1:25:15 PM  
You should donate to a worthy cause. Nah. Ok well what if we film you have water dumped on your head and post it with you pledging to donate. OK!
Humans are funny like that.
 
2022-10-02 1:25:17 PM  

Private_Citizen: I like feel good stories as much as the next person, but scratch the surface and this whole tale is a Devastating critique of the American healthcare system.
The drug in question isn't new, it's a combination of 2 existing generics. The combination was tested on a whopping 137 people, and extended their life by up to 6 months. The 'developer' set the price at $158,000 a Year!!!
For 2 generics.
In a combination discovered using funding from donations and research tax credits.

Now that it's approved, Medicare and insurance will have to cover it. This isn't the feel good story it first appears to be, is a nail in the coffin of our messed up healthcare system.


Private_Citizen: I like feel good stories as much as the next person, but scratch the surface and this whole tale is a Devastating critique of the American healthcare system.
The drug in question isn't new, it's a combination of 2 existing generics. The combination was tested on a whopping 137 people, and extended their life by up to 6 months. The 'developer' set the price at $158,000 a Year!!!
For 2 generics.
In a combination discovered using funding from donations and research tax credits.

Now that it's approved, Medicare and insurance will have to cover it. This isn't the feel good story it first appears to be, is a nail in the coffin of our messed up healthcare system.


Your post is very misleading. It's only one of the two generics making it ridiculously expensive. Sodium phenylbutyrate is the pricey one. Cheapest I could find was $4000/g but I didn't look real hard. The other ingredient is in the tens of dollars per gram. According to another article that showed the actual dosage trial patients received, they took 3g as in grams of the expensive and 1g of the cheap stuff stuff once daily the first three weeks and then twice daily through week 24. So, the patient's looking at about $12K/day to start and $24K/day after three weeks if the pharmacist takes the two ingredients and compounds them on their own.

Long story short, compounding the two generics doesn't make it insanely priced. It's one the the active ingredients that makes it insanely priced.
 
2022-10-02 1:31:05 PM  

Private_Citizen: I like feel good stories as much as the next person, but scratch the surface and this whole tale is a Devastating critique of the American healthcare system.
The drug in question isn't new, it's a combination of 2 existing generics. The combination was tested on a whopping 137 people, and extended their life by up to 6 months. The 'developer' set the price at $158,000 a Year!!!
For 2 generics.
In a combination discovered using funding from donations and research tax credits.

Now that it's approved, Medicare and insurance will have to cover it. This isn't the feel good story it first appears to be, is a nail in the coffin of our messed up healthcare system.


ALS is a very rare disease.  Spend tens of millions of millions of dollars researching it, the drug will need to be very expensive to make that money back.  Even if it ends up being two drugs that were already out there.  This doesn't account for the inevitably tons of combinations they tried and tested for years to no avail.  Very few people get diagnosed every year.  Gotta charge a lot.

On the other hand, my grandmother was diagnosed with breast cancer last year.  90+, so she declined surgery and chemo, but she takes a simple pill for it that she said costs like $8 for the entire bottle.  But guess what, hundreds of thousands of people get diagnosed with breast cancer every year.  Don't need to charge much.
 
2022-10-02 1:35:51 PM  
Look up Carla Guginos ice bucket challenge.
 
2022-10-02 1:39:17 PM  
No, I don't. Is there a "challenge" for that?
 
2022-10-02 1:54:29 PM  
Donald Trump ALS Ice Bucket Challenge
Youtube oF3mmcYFoYs
 
2022-10-02 2:01:32 PM  

mistahtom: ALS sucks but it doesn't affect that many people.

Wake me up when there's a challenge to restore reproductive rights 🥱


I don't know what that challenge would entail, but it sounds like a lot more fun than dumping ice water on your head.

/unless that's what you're into
 
2022-10-02 2:05:07 PM  
I still don't understand how dumping ice water on yourself raised money.
 
2022-10-02 2:05:24 PM  

chawco: Watubi: Private_Citizen: I like feel good stories as much as the next person, but scratch the surface and this whole tale is a Devastating critique of the American healthcare system.
The drug in question isn't new, it's a combination of 2 existing generics. The combination was tested on a whopping 137 people, and extended their life by up to 6 months. The 'developer' set the price at $158,000 a Year!!!
For 2 generics.
In a combination discovered using funding from donations and research tax credits.

Now that it's approved, Medicare and insurance will have to cover it. This isn't the feel good story it first appears to be, is a nail in the coffin of our messed up healthcare system.

I agree with you on all points.  However, why hasn't any non-US companies "discovered" this combination of drugs?  Perhaps they have no incentive

All the big oharma are HQd in the US as the most friendly environment but most are multinationals.

Few large companies really have a nationality. They are not citizens. They base themselves in the friendliest environment bit work wherever is.most convient. You won't find lots of drug research in Adrica because the biomedical sector is not well developed and the international language of science is English.

And both "US" and non US companies sell in and outside the US. It's not like Canadian pharma only sells locally.

Lastly, how much attention are you paying to who develops which drugs abd where that companynis based? Lots of "non american" companies make new drugs.

This concept of the it ok for pharmaceutical to screw the US and somehow tou are saving the rest of the world is a tired American pro corporate right wing talking point.


Sober up
 
2022-10-02 2:12:12 PM  

Maybe you should drive: BizarreMan: Cool!  It's good to know that sometimes social media can do good things.

It happens.  I mean, I remember doing the Tide Pod challenge in 2020, and how it helped fund Ivermectin as an alternative Covid-19 treatment.   I can't help but feel like I made a difference that day.


User name checks out *BIG TIME*
 
2022-10-02 2:24:01 PM  

KB202: I still don't understand how dumping ice water on yourself raised money.


Because you challenged someone to do the same in 24 hours or donate a bucket of cash.  And a lot did both. It also attracted attention to the cause which in and of itself generated donations.
 
2022-10-02 2:31:54 PM  

baorao: Permanent Solutions For Permanent Problems: I thought the ice bucket challenge was to donate to ALS research OR get ice water dumped on you, not both?

Technically you are correct. Which means by NOT dumping ice water on my head, I was the true hero of the situation.


Fark user imageView Full Size
 
2022-10-02 2:59:08 PM  
Patrick Stewart's Ice Bucket Challenge
Youtube Ty6-Ug1wk-0


Oblig.
 
2022-10-02 3:19:05 PM  

TheMysteriousStranger: KB202: I still don't understand how dumping ice water on yourself raised money.

Because you challenged someone to do the same in 24 hours or donate a bucket of cash.  And a lot did both. It also attracted attention to the cause which in and of itself generated donations.


Wacky. I never saw or heard of anyone donating money. I only saw clips of bucket dumping on late shows. None of them ever claimed they donated money.
What did it raise money for?
 
2022-10-02 3:19:16 PM  

Alien Robot: [YouTube video: Donald Trump ALS Ice Bucket Challenge]


Considering certain rumored events at the time, somebody made a slight modification to that video.

i.imgur.comView Full Size
 
2022-10-02 3:44:37 PM  
My best friend's wife is smoking hot, and I got her to wear really skimpy clothes for it, and ... they were totally see-through when wet.  She posted the video not realizing that, and it got taken down.  But it was a great video, and I can't really say whether it still exists in some way or another.

More great gifts from the ice bucket challenge!
 
2022-10-02 3:47:11 PM  

Creoena: I had a good friend die of ALS in 2007.  It's a hell of a way to go.  He could barely move by the end.

He used to joke that the worst part of ALS was that he could get erections but couldn't "do" anything about it.


I lost a cousin to it 10 years ago from it. He had to leave the military because of it. He was gone in 4 years after diagnosis. it was devastating for the family.
 
2022-10-02 4:03:30 PM  
My BIL has it now - ;ate onset (72yo).... It's bee terrible watching him go downhill
 
2022-10-02 4:22:56 PM  
ALS is a horribe disease and any progress is a step in the right direction. The form my mother had was a very aggressive one called Progressive Bulbar Palsy. Went from diagnosis to dead in just over a year. I'm glad it was fast in her case. The toll it took on my father was unbearable to watch.
 
2022-10-02 4:31:33 PM  

KB202: TheMysteriousStranger: KB202: I still don't understand how dumping ice water on yourself raised money.

Because you challenged someone to do the same in 24 hours or donate a bucket of cash.  And a lot did both. It also attracted attention to the cause which in and of itself generated donations.

Wacky. I never saw or heard of anyone donating money. I only saw clips of bucket dumping on late shows. None of them ever claimed they donated money.
What did it raise money for?


Bribes to the approval panel.
 
2022-10-02 4:45:55 PM  
Feel good story! Slightly underminded by the fact the drug's approval was far less rigorous than generally required in the wake of the FDA approval of several new Alzheimer's drugs which show no benefit.

I really hope this doesn't turn out to be the case, but it wouldn't be the first time either.
 
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