Families battle insurance over world’s most expensive drug

Via:  perrie-halpern  •  4 months ago  •  11 comments

Families battle insurance over world’s most expensive drug
The drug, Zolgensma, is a life-saving, single-dose gene therapy that treats children with spinal muscular atrophy or SMA, a disease that takes away the ability to walk, breathe and eat. Two months after the FDA approved it, families across the country say they’re being denied access to the drug because insurance refuses to pay.


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Perrie Halpern R.A.
1  seeder  Perrie Halpern R.A.    4 months ago

I happen to know a family whose son has SMA, so I have seen first hand how devastating this disease can be. 

So, is it ethical to 1. have a drug this high in cost, 2. only give it to people who can afford it?

Buzz of the Orient
1.1  Buzz of the Orient  replied to  Perrie Halpern R.A. @1    4 months ago

In my opinion greed is the culprit. Obviously Dr. Salk was one of a kind. 

1.2  FLYNAVY1  replied to  Perrie Halpern R.A. @1    4 months ago

Ethics vs greed Perrie.

Drug companies say they have to get a return on their investment....... Kind of like the EPI-auto-injectors a few years ago.

Why did Mylan hike EpiPen auto injectors prices 400%...... because they could!

1.2.1  sandy-2021492  replied to  FLYNAVY1 @1.2    4 months ago

Oh, it gets better than that.


The reason it's Epi-Pens in most schools is due to Joe Manchin's wife Gayle being in a position to see that they were.  Their daughter Heather Bresch is CEO of Mylan.

There's a backstory there, too.  Their daughter did not receive all of the credits required from West Virginia University to qualify for her MBA.  Her records were doctored.  The university President was forced to resign over that, but Bresch kept her degree and her position at Mylan, and there was little lasting fallout for Joe Manchin, who was governor of WV at the time.

1.3  JBB  replied to  Perrie Halpern R.A. @1    4 months ago

This may seem like a dumb question, but if the entire left and most of the right can agree on spending billions and billions to insure the remaining health of a few aging 9-11 first responders, something I also agree with, how come we cannot afford to invest a billion or two in buying the rights to the cures that might save thousands of young Americans with their entire futures in front of them? 

Buzz of the Orient
1.3.1  Buzz of the Orient  replied to  JBB @1.3    4 months ago

That certainly seems logical to me.

2  Kavika     4 months ago

A month ago I watched as a busload of Americans crossed the Minnesota/Canadian border at International Falls MN to purchase insulin in Canada because they could no longer afford it in the US...

It's all about money. 

BTW, insulin was discovered in Canada by a Canadian...So much for the investment of American big pharma. The patent was sold for $1 because Banting felt that the world should have access to it. 

Buzz of the Orient
2.1  Buzz of the Orient  replied to  Kavika @2    4 months ago

I didn't know that he did not want to make money from it - so Dr. Salk was actually not the only humanitarian when it came to discovering/creating and providing to the public free life-saving medications.  As it happens, a very good friend and client when I was back in Toronto was a descendant, also named Banting. He displayed the same kind of generosity.

Greg Jones
3  Greg Jones    4 months ago

At a single dose price of $2.1 million, I can understand why the insurance companies balk at paying such a ridiculous amount.

Perhaps there could be a government department set up to have the government pay for the treatment of these rare diseases if the medicine is effective, especially if it is curative.

3.1  SteevieGee  replied to  Greg Jones @3    4 months ago

Apparently cutting their taxes to nearly 0 while at the same time slashing fda regulations isn't enough?

The Old Breed Marine
4  The Old Breed Marine    4 months ago



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