2.1 Million Dollars to save a Child

[singlesix]

She's 14 months old and needs a drug that costs $2.1 million to save her life

One family is racing against time to treat Ayah, their 14-month-old daughter, who has a rare genetic disease. The gene therapy she needs, Zolgensma, has been called the world's most expensive drug.

www.cnn.com

This is what I get for searching for articles on vaccines, this popped up.

Heart breaking. Denmark's Universal Healthcare doesn't cover the drug, so parents attempting to raise the funds.

 

[indykid]

I can't believe a drug manufacturer could ask that much with a straight face.

I am guessing that the condition is so rare that there are not enough people with the problem to spread out the cost of the drug and it's development costs making it even remotely affordable.

 

[BigRed]

Meanwhile, how many were aborted today?

 

[maxwelhse]

I can't believe a drug manufacturer could ask that much with a straight face.

When only one country foots 90% of the bill for all medical science development, what do you expect?

The company that invented that drug was based in Texas until they were sold to an overseas megapharma for nearly $9 billion. Gotta get that $9 billion back somewhere before the patent expires.

 

[femurphy77]

On second thought,

 

[Libertarian01]

We have limited resources. This is an undeniable fact. We (as a race) triage. We try to spread what resources we can to help the most people we can. Some don't make it.

Who, exactly, do we want to ration the resources we have? We have about three (3) choices in the United States. The first is the government, the second is the medical profession, the third is private insurance. We use all three. Medicare and medicaid (government) regularly deny coverage for drugs or medical equipment. The medical profession determines who gets organ transplants, and private insurance regularly denies paying for treatments.

We want to save every person, young old, or middle aged from every disease, illness, and injury. We can't. So we ration. Hopefully we do so humanely and with respect for all the people but we probably fall short in many areas.

If we try to save everyone by using heroic means all the time we'll all just go broke, then no one can be saved.

This is a butt ugly situation, no doubt about it. There are thousands like it that don't receive this kind of coverage. I have NO problem with people voluntarily donating what they can within their means to help, but if the government forced treatment it would have to raise taxes so high that many more people would suffer.

Someday, maybe, we'll have reached a technological level high enough that saving everyone will be cheap and affordable. We are not there yet.

Regards,

Doug

 

[wcd]

I can't believe a drug manufacturer could ask that much with a straight face.

I am guessing that the condition is so rare that there are not enough people with the problem to spread out the cost of the drug and it's development costs making it even remotely affordable.

Believe its true! While not anywhere near the same scale when our son was born one of his prescriptions was $1k for one month. With the awful health insurance plan we had. Back then that was tough row to hoe to pay for it.

 

[rkwhyte2]

With it being such a rare illness you would think that the drug company might step up and do the right thing but I guess not. I mean if it's this rare how do they know it even works well. Give the little girl the treatment and if she improves then you have shown it works.

 

[HoughMade]

First, they have a program, of sorts, for people who can't afford it.

Second, I guess it's better that they not develop these drugs at all...because that's the other option to being paid.

 

[maxwelhse]

With it being such a rare illness you would think that the drug company might step up and do the right thing but I guess not. I mean if it's this rare how do they know it even works well. Give the little girl the treatment and if she improves then you have shown it works.

Double edged sword. If it weren't rare then everybody would have been developing treatment methods that compete with each other, lowering the price for all.

Since it is rare, the only reason the treatment exists is so they can make a big bucket of money on it. The other option is for all of this stuff to be "free", no one researches any of this, and medical science stops dead in its tracks.

This is one of the reasons why healthcare is so expensive in the US. We foot the bill for the all of the development while the rest of the world reaps the reward. Not much different than our military spending situation, or WHO funding, or basically everything.

ETA: It's an FDA approved treatment, so it's been through all of its human trials and all of that. It's not an experimental treatment that needs more case study.

 

[rkwhyte2]

I'm not sure why the original company even developed the drug in the first place. I'd bet it was developed for something else and then they found it to be effective for this condition also.

 

[maxwelhse]

I'm not sure why the original company even developed the drug in the first place. I'd bet it was developed for something else and then they found it to be effective for this condition also.

Money.

They were a specialty house that targeted rare genetic disorders, I'm guessing, exactly because they could charge piles of money for their effort. It's entirely possible that they invented a technology that made it easier to treat this specific illness while along the path and that they never targeted this one specific illness.

It's sort of like how Moderna isn't a legendary vaccine house, but their sequencing technology allowed them to rapidly develop a Covid vaccine. They weren't really known for doing much of anything before that as far as I could tell.

Moderna's stock (boring for ages, then jackpot):

 

[CHCRandy]

CNN finally done something worth while.......this little lady has $1.1 Million now. Over $1M in 24 hours........thanks for sharing this. I would have never seen this had you not posted.

And Lord have mercy on anyone who would put a price on a childs life.

 

[AtTheMurph]

CNN finally done something worth while.......this little lady has $1.1 Million now. Over $1M in 24 hours........thanks for sharing this. I would have never seen this had you not posted.

And Lord have mercy on anyone who would put a price on a childs life.

Nobody is putting a price on a child's life. They are putting a price on a drug which includes the research, the liability insurance, the years of testing, facilities and people.

To get a drug you need to spend millions if not billions to get one approved. If there is no pay off, who would be in the drug creation business and who would fund it?

I guess the answer would be government, but seeing how government cannot run a railroad, deliver mail, maintain roads and bridges I'm skeptical that they could make many effective drugs and they would never be able to do it at a lower overall cost.