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(CBC)   Meanwhile, in socialized medicineland, Canadian government to foot entire $2.8 million cost for single dose of life saving drug for toddler   (cbc.ca) divider line
    More: Hero, Spinal muscular atrophy, Muscle, Federal government of the United States, Fourteen-month-old Kevin Verch, family of a Pikwkanagn First Nation toddler, 20-year-old Dana Pearce, Indigenous Services Canada, single dose of the drug Zolgensma  
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2084 clicks; posted to Main » and Politics » on 18 Jan 2021 at 11:45 PM (12 weeks ago)   |   Favorite    |   share:  Share on Twitter share via Email Share on Facebook



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2021-01-18 7:34:48 PM  
$2.8 million for a single dose? What is this stuff made from and how is it manufactured that makes it so expensive?
 
2021-01-18 7:53:52 PM  
And here I thought the medicine my dad once had to take was expensive at $100K per IV bag and he ended up using 5 bags.  The doctors had to get approval from the hospital administrators before they could even prescribe it due to the cost.  2.8 million for a single dose is unfathomable.
 
2021-01-18 8:52:08 PM  
Sheesh. Think of the pressure on that poor kid for its entire life.

/Sheesh!
 
2021-01-18 9:36:57 PM  
Who knew that ink jet printer ink could save lives.
 
2021-01-18 9:52:00 PM  
Imagine living in a country where a single medical event didn't have the potential of wiping out your entire net worth and leaving your family homeless and in debt.
 
2021-01-18 11:25:14 PM  
Sounds like a good drug to nationalize.....
 
2021-01-18 11:26:46 PM  

With Six You Get Spittle: $2.8 million for a single dose? What is this stuff made from and how is it manufactured that makes it so expensive?


It is a pretty simply AAV (adeno-associated virus) vector with a functional copy of the broken gene in question. I could probably put together a rough version of what they are selling for $20,000-30,000 (reagents + time) in a reasonably equipped lab. When I say rough, I mean that it would probably fix the problem, but it would probably also introduce some messed up gene copies as well, also there would probably be some trace amounts of some lab chemicals that the FDA wouldn't accept in an actual therapeutic. Also, who knows you might die, I usually only put the stuff on cells growing on a plate. You're infusing a virus into your body, under the wrong conditions your own immune system will kill you.
https://en.wikipedia.org/wiki/Jesse_G​e​lsinger

There are a couple things that push the price up.
1) Getting a more pure product is surprisingly hard (and expensive).
2) While the basic science was paid by tax dollars, the actually work to convert that to a safe(ish), sellable product likely wasn't. That type of work is expensive and I'm sure their liability insurance is expensive.
3) It is a single dose product being used on a relatively rare disease. Those expenses are being recouped on a small population.
4) Evidence suggests it works, and so they can. There was an analysis done by a third party group when this product came out. Basically this product costs about $100,000 per expected years of life gained. This seems pretty carefully calibrated because that is exactly the price point where many insurers will start to ask hard questions.
 
2021-01-18 11:27:56 PM  

Alex_Lee: Imagine living in a country where a single medical event didn't have the potential of wiping out your entire net worth and leaving your family homeless and in debt.


But, that would be HERESY. And COMMUNISM. OGA-BOOGA!
 
2021-01-18 11:37:59 PM  

iheartscotch: Alex_Lee: Imagine living in a country where a single medical event didn't have the potential of wiping out your entire net worth and leaving your family homeless and in debt.

But, that would be HERESY. And COMMUNISM. OGA-BOOGA!


They have done a rather effective job with that propaganda. I wish we were all smart enough to see through it.
 
2021-01-18 11:48:44 PM  

With Six You Get Spittle: $2.8 million for a single dose? What is this stuff made from and how is it manufactured that makes it so expensive?


Printer ink, apparently
 
2021-01-18 11:49:27 PM  

Bajtaur: With Six You Get Spittle: $2.8 million for a single dose? What is this stuff made from and how is it manufactured that makes it so expensive?

It is a pretty simply AAV (adeno-associated virus) vector with a functional copy of the broken gene in question. I could probably put together a rough version of what they are selling for $20,000-30,000 (reagents + time) in a reasonably equipped lab. When I say rough, I mean that it would probably fix the problem, but it would probably also introduce some messed up gene copies as well, also there would probably be some trace amounts of some lab chemicals that the FDA wouldn't accept in an actual therapeutic. Also, who knows you might die, I usually only put the stuff on cells growing on a plate. You're infusing a virus into your body, under the wrong conditions your own immune system will kill you.
https://en.wikipedia.org/wiki/Jesse_Ge​lsinger

There are a couple things that push the price up.
1) Getting a more pure product is surprisingly hard (and expensive).
2) While the basic science was paid by tax dollars, the actually work to convert that to a safe(ish), sellable product likely wasn't. That type of work is expensive and I'm sure their liability insurance is expensive.
3) It is a single dose product being used on a relatively rare disease. Those expenses are being recouped on a small population.
4) Evidence suggests it works, and so they can. There was an analysis done by a third party group when this product came out. Basically this product costs about $100,000 per expected years of life gained. This seems pretty carefully calibrated because that is exactly the price point where many insurers will start to ask hard questions.


Are you this guy?

Am I still lactose tolerant? - Lactose Gene Therapy Update
Youtube aoczYXJeMY4
 
2021-01-18 11:49:50 PM  

Alex_Lee: Imagine living in a country where a single medical event didn't have the potential of wiping out your entire net worth and leaving your family homeless and in debt.


It's all worth it, so I can be my own boss.
I love getting my 1099 it's freedom personified.
/S.
 
2021-01-18 11:52:05 PM  

Bajtaur: With Six You Get Spittle: $2.8 million for a single dose? What is this stuff made from and how is it manufactured that makes it so expensive?

It is a pretty simply AAV (adeno-associated virus) vector with a functional copy of the broken gene in question. I could probably put together a rough version of what they are selling for $20,000-30,000 (reagents + time) in a reasonably equipped lab. When I say rough, I mean that it would probably fix the problem, but it would probably also introduce some messed up gene copies as well, also there would probably be some trace amounts of some lab chemicals that the FDA wouldn't accept in an actual therapeutic. Also, who knows you might die, I usually only put the stuff on cells growing on a plate. You're infusing a virus into your body, under the wrong conditions your own immune system will kill you.
https://en.wikipedia.org/wiki/Jesse_Ge​lsinger

There are a couple things that push the price up.
1) Getting a more pure product is surprisingly hard (and expensive).
2) While the basic science was paid by tax dollars, the actually work to convert that to a safe(ish), sellable product likely wasn't. That type of work is expensive and I'm sure their liability insurance is expensive.
3) It is a single dose product being used on a relatively rare disease. Those expenses are being recouped on a small population.
4) Evidence suggests it works, and so they can. There was an analysis done by a third party group when this product came out. Basically this product costs about $100,000 per expected years of life gained. This seems pretty carefully calibrated because that is exactly the price point where many insurers will start to ask hard questions.


Why don't we cap liability to $1 million?

/
Can't believe I just said that. I'm not pro tort reform.
 
2021-01-18 11:52:57 PM  

With Six You Get Spittle: $2.8 million for a single dose? What is this stuff made from and how is it manufactured that makes it so expensive?


[southparkhivmoneycure.gif]
 
2021-01-18 11:53:01 PM  
Is this the same thing that killed that dude who just wanted to drink a beer and feel normal?
 
2021-01-18 11:53:35 PM  
$2.8 million dollars means the average Canadian had to pay about seven cents (the average Canadian taxpayer had to pay close to ten whole cents).

The fact that anyone could debate the merits of this is bizarre.
 
2021-01-18 11:54:11 PM  

With Six You Get Spittle: $2.8 million for a single dose? What is this stuff made from and how is it manufactured that makes it so expensive?


It's Canadian, so that's about 35 USD.
 
2021-01-18 11:57:02 PM  

Lord Dimwit: $2.8 million dollars means the average Canadian had to pay about seven cents (the average Canadian taxpayer had to pay close to ten whole cents).

The fact that anyone could debate the merits of this is bizarre.


Isn't that close to how much it would cost per pizza/meal for fast food workers to earn a living wage?
 
2021-01-18 11:57:11 PM  
As one end of the bell curve in terms of patients that need this kind of treatment for expensive diseases, there will be a person on the other side of the bell curve of financial income and tax that would cover it.
 
2021-01-19 12:02:31 AM  

Tracianne: And here I thought the medicine my dad once had to take was expensive at $100K per IV bag and he ended up using 5 bags.  The doctors had to get approval from the hospital administrators before they could even prescribe it due to the cost.  2.8 million for a single dose is unfathomable.


Dang, my stuff is only about $11k a bag.
 
2021-01-19 12:08:14 AM  

Boo_Guy: Tracianne: And here I thought the medicine my dad once had to take was expensive at $100K per IV bag and he ended up using 5 bags.  The doctors had to get approval from the hospital administrators before they could even prescribe it due to the cost.  2.8 million for a single dose is unfathomable.

Dang, my stuff is only about $11k a bag.


That hospital visit for my dad ended up costing over $2million.  Thankfully medicare and supplemental insurance covered it all.
 
2021-01-19 12:11:59 AM  

With Six You Get Spittle: $2.8 million for a single dose? What is this stuff made from and how is it manufactured that makes it so expensive?


It's almost as if the cost of the salaries of the people involved, plus the amount spent on drugs that aren't successful, somehow need to be capitalized into the cost of successful medicines.

Strange!
 
2021-01-19 12:13:42 AM  
So uh, he would have been left to die if he wasn't partly indigenous?
 
2021-01-19 12:13:55 AM  

iheartscotch: Sounds like a good drug to nationalize.....


Oh look, the last time a drug will ever be made for a rare condition.

Hope you would enjoy the deaths caused by someone following your advice.
 
2021-01-19 12:16:43 AM  

Tracianne: Boo_Guy: Tracianne: And here I thought the medicine my dad once had to take was expensive at $100K per IV bag and he ended up using 5 bags.  The doctors had to get approval from the hospital administrators before they could even prescribe it due to the cost.  2.8 million for a single dose is unfathomable.

Dang, my stuff is only about $11k a bag.

That hospital visit for my dad ended up costing over $2million.  Thankfully medicare and supplemental insurance covered it all.


Glad it didn't land your family in a hole.

I just have to pay for parking every time I go get mine. =)

/a toonie every two weeks
 
2021-01-19 12:18:25 AM  

waxbeans: Bajtaur: With Six You Get Spittle: $2.8 million for a single dose? What is this stuff made from and how is it manufactured that makes it so expensive?

It is a pretty simply AAV (adeno-associated virus) vector with a functional copy of the broken gene in question. I could probably put together a rough version of what they are selling for $20,000-30,000 (reagents + time) in a reasonably equipped lab. When I say rough, I mean that it would probably fix the problem, but it would probably also introduce some messed up gene copies as well, also there would probably be some trace amounts of some lab chemicals that the FDA wouldn't accept in an actual therapeutic. Also, who knows you might die, I usually only put the stuff on cells growing on a plate. You're infusing a virus into your body, under the wrong conditions your own immune system will kill you.
https://en.wikipedia.org/wiki/Jesse_Ge​lsinger

There are a couple things that push the price up.
1) Getting a more pure product is surprisingly hard (and expensive).
2) While the basic science was paid by tax dollars, the actually work to convert that to a safe(ish), sellable product likely wasn't. That type of work is expensive and I'm sure their liability insurance is expensive.
3) It is a single dose product being used on a relatively rare disease. Those expenses are being recouped on a small population.
4) Evidence suggests it works, and so they can. There was an analysis done by a third party group when this product came out. Basically this product costs about $100,000 per expected years of life gained. This seems pretty carefully calibrated because that is exactly the price point where many insurers will start to ask hard questions.

Why don't we cap liability to $1 million?

/
Can't believe I just said that. I'm not pro tort reform.


Government has calculated that human life is worth $10 million.

https://www.npr.org/2020/04/23/843310​1​23/how-government-agencies-determine-t​he-dollar-value-of-human-life

Cap liability at $1 million and basically you've increased the number of people that can die times ten as part of any break even calculation.
 
2021-01-19 12:23:24 AM  

Alex_Lee: Imagine living in a country where a single medical event didn't have the potential of wiping out your entire net worth and leaving your family homeless and in debt.


You misspelled "dead unless obscenely rich"
 
2021-01-19 12:25:16 AM  
The story behind Jordan's Principle was tragic - province and feds fighting over who should pay for a First Nation's child treatment until the child died - and the years that the feds spent refusing to implement it was shameful.  (IIRC, some of the bureaucrats responsible for administering the program gave themselves an award for spending so little of the money that had been allocated to the program.)

It's good that they're finally spending some of that money.  Not so great that they're still fighting parts of it, though:

https://www.theglobeandmail.com/polit​i​cs/article-ottawas-appeal-of-ruling-th​at-widened-applicability-of-jordans/

Just take care of the children.  Stop farking around.
 
2021-01-19 12:27:23 AM  
external-content.duckduckgo.comView Full Size
 
2021-01-19 12:28:55 AM  

God-is-a-Taco: So uh, he would have been left to die if he wasn't partly indigenous?


Probably the government would have caved and approved it anyway, eventually. However, the story as it is is not an example of great Canadian health care. The child's drug costs were covered by the government because he is Indigenous.
 
2021-01-19 12:30:59 AM  

Lord Dimwit: $2.8 million dollars means the average Canadian had to pay about seven cents (the average Canadian taxpayer had to pay close to ten whole cents).

The fact that anyone could debate the merits of this is bizarre.


Bizarre is far too polite a word for it.
Satanic, evil, sociopathic, amoral... I would have sprung for something along those lines.
 
2021-01-19 12:34:09 AM  

Alex_Lee: Imagine living in a country where a single medical event didn't have the potential of wiping out your entire net worth and leaving your family homeless and in debt.


Didn't read the article, huh?
 
2021-01-19 12:35:02 AM  
And there I was today having a somewhat heated discussion with my mother-in-law about the benefits of universal healthcare and why most of the western world has such a system. She didn't get it.
 
2021-01-19 12:36:13 AM  

Toxophil: Alex_Lee: Imagine living in a country where a single medical event didn't have the potential of wiping out your entire net worth and leaving your family homeless and in debt.

You misspelled "dead unless obscenely rich"


That is more to the point.
 
2021-01-19 12:37:47 AM  
Glad for the kid. But it sort of makes the whole "indigenous peoples want to maintain a traditional way of life" thing kind of moot.
 
2021-01-19 12:42:12 AM  
Meanwhile in socialized medicine land, our government can't get a stable vaccine supply.
 
2021-01-19 12:49:36 AM  

Handsome B. Wonderful: Meanwhile in socialized medicine land, our government can't get a stable vaccine supply.


Maybe if the government didn't blow up it's vaccine making capabilities all those years ago Canada wouldn't have to rely on what we can get from Europe right now.

At least there will be more after Pfizer is done upgrading the factory that Canada's supply is coming from.
 
2021-01-19 12:57:05 AM  

Boo_Guy: Handsome B. Wonderful: Meanwhile in socialized medicine land, our government can't get a stable vaccine supply.

Maybe if the government didn't blow up it's vaccine making capabilities all those years ago Canada wouldn't have to rely on what we can get from Europe right now.

At least there will be more after Pfizer is done upgrading the factory that Canada's supply is coming from.


Lots of other vaccines coming up for approval should help too.... the Johnson & Johnson one really looks promising
 
2021-01-19 1:02:44 AM  

With Six You Get Spittle: $2.8 million for a single dose? What is this stuff made from and how is it manufactured that makes it so expensive?


Most likely, all the research that went into inventing/discovering it.  It reminds me of a scene from the show House:

Dr. 1:  "Why can't they sell their medicine at more reasonable prices?  It only costs them 16 cents to make that pill."
Dr. 2:  "It only cost them 16 cents to make the second pill.  The first one cost them 500 million dollars."

Not that I agree that it should cost that much, or that families should have to go broke paying for their medical expenses.

I was hit by a drunk driver in 2008, broke my back.  I've had 14 spinal surgeries, four implants, two spinal fusions, 29 MRIs, 57 CT scans, countless X-rays, thousands of hours of physical therapy, and woken up from surgery paralyzed below the rib cage and had to learn how to walk all over again, twice! (most recently was at the end of 2019).  My thirteen years of medical expenses have topped over $8million and ruined us financially.  And before Obamacare became a thing, I couldn't even get health insurance because of my "pre-existing condition".  But, yeah, seems totally fair that in addition to the decades of pain, I should also have to lose everything I've ever worked for because some drunk asshole hit me on the way home from work.

My grandmother is an ultra-conservative Republican, and an ardent Trumper.  She has stated many times, and genuinely believes, that Obama was an Islamic terrorist, sent to take over the US, institute communism and Sharia Law.  And that Obamacare is both evil and proof of her claims.  Then I remind her that Obamacare was the only thing that allowed her grandson to get the surgeries and medical care he needed to get him back on his feet, back to work, and back to his life.  She was willing to admit that my case was the exception to the rule, but mostly because God did it, not Obama and the many, many professionals that made that happen.

Sorry for the rant and threadjack.
 
2021-01-19 1:06:40 AM  

iheartscotch: Alex_Lee: Imagine living in a country where a single medical event didn't have the potential of wiping out your entire net worth and leaving your family homeless and in debt.

But, that would be HERESY. And COMMUNISM. OGA-BOOGA!


Fark user imageView Full Size
 
2021-01-19 1:08:14 AM  

Space Squid: I was hit by a drunk driver in 2008, broke my back.


Doesn't the drunk driver's insurance pay for your damages, or did their insurance not have sufficient coverage? Seems unfair that you get stuck with the bills when the incident was no fault of your own.
 
2021-01-19 1:09:56 AM  

gar1013: iheartscotch: Sounds like a good drug to nationalize.....

Oh look, the last time a drug will ever be made for a rare condition.

Hope you would enjoy the deaths caused by someone following your advice.


Hey welcome back!
Just got back from DC?
 
2021-01-19 1:11:26 AM  

Alex_Lee: Imagine living in a country where a single medical event didn't have the potential of wiping out your entire net worth and leaving your family homeless and in debt.


You guys have guns, the rest of the civilized world has socialized medicine. Fair trade, no?
 
2021-01-19 1:26:52 AM  

Alex_Lee: Imagine living in a country where a single medical event didn't have the potential of wiping out your entire net worth and leaving your family homeless and in debt.


I've been living your dream for 63 years in my big, beautiful, south Pacific island paradise.
 
2021-01-19 1:29:41 AM  

2fardownthread: Sheesh. Think of the pressure on that poor kid for its entire life.

/Sheesh!


He lives in Canada. He can grow up normally.

In the US? Good farking luck.
 
2021-01-19 1:35:51 AM  

Thunderbox: Alex_Lee: Imagine living in a country where a single medical event didn't have the potential of wiping out your entire net worth and leaving your family homeless and in debt.

I've been living your dream for 63 years in my big, beautiful, south Pacific island paradise.


Hopefully your dream doesn't include SMA or Zolgensma or you are shiat out of luck.
 
2021-01-19 1:37:45 AM  

WhippingBoi: Alex_Lee: Imagine living in a country where a single medical event didn't have the potential of wiping out your entire net worth and leaving your family homeless and in debt.

You guys have guns, the rest of the civilized world has socialized medicine. Fair trade, no?


I think a healthy to society could have both. However we need to have mental health assessments, and teach responsibility when it comes to guns. Our current cowboy mentality is problematic. IOW neither guns nor huge trucks will make up for a tiny penis.

/Gun toting Liberal
 
2021-01-19 2:07:58 AM  

ameeriklane: Space Squid: I was hit by a drunk driver in 2008, broke my back.

Doesn't the drunk driver's insurance pay for your damages, or did their insurance not have sufficient coverage? Seems unfair that you get stuck with the bills when the incident was no fault of your own.


He had the absolute state mandated minimum insurance policy, which didn't even cover my ER visit.  They settled within two weeks for the full amount of his paltry policy.  I had a much bigger un/under-insured motorist policy.  That took two years to settle.  A third of it went to the lawyers, a third is sent directly to the health insurer, and we get a third; which was promptly gone to pay off more medical debt.  That covered two years.  I am now on year thirteen, and the bills continue to stack up.  And this all happened in my mid-twenties, so it's going to continue to stack up for a very long time.

The drunk driver didn't have a nickel to his name.  Didn't own a house.  Car was worthles; even more so after smashing it into my brand new vehicle (less than a month old).  And he was unemployed.  So there was nothing to sue.  Would have cost me a bunch of money and I'd never see anything back.

Healthcare for profit isn't medicine, it's business.  And business shouldn't decide who gets treated and who doesn't.  Nor should families have to decide if they can afford to lose everything they have to get treatment.

Tell me again how we're a super power?
"America is not the greatest country in the world anymore" - The Newsroom 2012 - SUBTITLES
Youtube bIpKfw17-yY

Really good show; I recommend.  The first episode is a bit hard to get through, but it picks up after that.  First season is amazing.  Second kinda sucks, third is just okay.  But that first season was really cool.  Made by Aaron Sorkin, same guy who made The West Wing.
 
2021-01-19 2:16:27 AM  

Thunderbox: Alex_Lee: Imagine living in a country where a single medical event didn't have the potential of wiping out your entire net worth and leaving your family homeless and in debt.

I've been living your dream for 63 years in my big, beautiful, south Pacific island paradise.


I'm jealous. Except for those huge spiders and wonderful abundance of venomous snakes and dangerous critters you have. The birds almost make up for them.
Had a wonderful friend from Hobart, one of my favorite memories of her and her Australian visitors is of translating Australian English into the American English that you find in Mexican restaurants in the US.
 
2021-01-19 2:17:09 AM  

ameeriklane: Space Squid: I was hit by a drunk driver in 2008, broke my back.

Doesn't the drunk driver's insurance pay for your damages, or did their insurance not have sufficient coverage? Seems unfair that you get stuck with the bills when the incident was no fault of your own.


And I agree.  It's not fair.  But that's the system we've got right now.

The other driver was listed as 100% at fault by the police, my insurance, and even his own insurance.  One thing I will give him credit for: he owned up to it.  He immediately admitted it was all his fault and apologized profusely.  The police took his statement first, then they came and saw me and said they didn't need a statement from me.  Which I argued against.  But the officer said, "He's owned up to everything; it's all his fault.  So there's nothing you can say that can help your case, only hurt it."  I replied, "Unless he left something out.  So I'd still like to make a statement myself."  Which the officer did oblige after protest.

The other driver even offered to change the mangled tire on my vehicle at the scene of the accident.  I politely declined as I was getting loaded into an ambulance.
 
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