The Food and Drug Administration has a approved a new gene therapy from Novartis that rings in at a whopping $2.125 Million for a one-time treatment making it "the most expensive drug on the market."
The drug Zolgensma is the second gene therapy approved for treatment of a genetic disease and consists of an infusion of genetically modified viruses carrying healthy copies of a defective gene that causes spinal muscular atrophy (SMA), which can be fatal within a year or two of birth. The first, approved in 2017 for treatment of a genetic form of blindness, was priced at a comparatively modest $425,000 per eye.
These backbreaking (eye watering?) prices come with their share of controversy
"We have been slowly subjected to price increases the same way the frog in the boiling water is slowly boiled to death," [Peter Bach, MD, MAPP Director of the Memorial Sloan Kettering's Center for Health Policy and Outcomes says.]
Insurers are expected to cover the cost. The company says payment plans will be available.
AveXis president Lennon acknowledges the numbers might seem shocking. But he argues the drug is easily worth it. The only existing treatment for spinal muscular atrophy, a drug called Spinraza, costs hundreds of thousands of dollars a year. Zolgensma hopefully will be a one-time, life-saving treatment.
"We're talking about a lifetime of benefit being condensed down into a one-time treatment," Lennon says. "We're not used to thinking about this that way. We're used to a system of a chronic medication where we spread things out over years if not decades."
The drug is currently in production and will be available for use "shortly"
Side Note: The fable of the frog being slowly boiled alive is doubly inaccurate. Frogs will progressively become more active attempting to escape slowly heating water and if able will exit the 'pot' long before it comes to the point they are in danger. Additionally a frog dropped into boiling water would likely be unable to hop out in time to save itself.
(Score: 5, Insightful) by JoeMerchant on Monday May 27 2019, @03:09AM (8 children)
There's really nothing wrong with expensive drugs - when there's a beneficial cost-benefit analysis, that's fine. If you've got a drug that costs $30K per year, but it relieves $100K per year in other healthcare costs, that's a clear net win for everyone. And, even if the production of the drug only costs $30 per year, that other $29,970 can go to defray costs of development, blind alleys searched for related cures, future drug development, it's all good. And, of course, if it's drug or death - well, how much you got? That sounds like a fair trade, doesn't it?
Where it becomes unconscionable is when that 99.9%+ profit margin is fed to corporate jet operation, executive salaries stock options and bonuses, television promotion campaigns of marginal drugs, junkets for prescribers, lap dances, etc. And, the only way to really track that is with transparency in accounting that goes far beyond anything that corporate America has allowed to-date. Can't tell the rich how to spend "their" money, but when "their" money comes from extorting 99.9%+ profit out of people who have no other choice, because they're dying... that would seem to be a poster-child for necessary transparency, to me.
Україна досі не є частиною Росії Слава Україні🌻 https://news.stanford.edu/2023/02/17/will-russia-ukraine-war-end
(Score: 4, Insightful) by khallow on Monday May 27 2019, @04:18AM (6 children)
What is the point of this exercise? Are they supposed to be snorting JoeMerchant-approved blow off of JoeMerchant-approved asses? It's not your business how one cavorts with one's profits as long as they're not committing crimes and killing people in the process.
What is your business is whether they're rigging the game with anti-competitive tactics like regulatory obstacles to competitors. The "transparency" you demand isn't even remotely relevant.
(Score: 0) by Anonymous Coward on Monday May 27 2019, @02:13PM
JoeMerchant-approved hooker asses. Can't have the blow without the hookers.
(Score: 2) by JoeMerchant on Monday May 27 2019, @08:18PM (4 children)
My point is: if one's profits are coming from IP protected drugs, being sold at ludicrous profit margins to captive markets with no other choice, then, yes, I think it does become the business of the people who uphold those IP laws, and they should not be extracting people's entire net worth just because they hold that exclusive position of having them cornered in a dark alley with a gun to their head.
Україна досі не є частиною Росії Слава Україні🌻 https://news.stanford.edu/2023/02/17/will-russia-ukraine-war-end
(Score: 1) by khallow on Tuesday May 28 2019, @12:33PM (3 children)
Well, that would be the problem right there, not the hedonism.
(Score: 2) by JoeMerchant on Tuesday May 28 2019, @01:51PM (2 children)
IMO, IP/patent protection worked reasonably well for the cotton gin and maybe the light bulb, but centuries of development - optimizing exploitation of the laws, society, and human nature, have brought about these special cases where the exploitation is orders of magnitude above anything that could be called reasonable. And, sooner or later, these types of legal abuses should be addressed with the creation new (and/or repeal of the dysfunctional) legislation which allows the exploitation to thrive - because human nature and society are unlikely to address the problem on their own.
Україна досі не є частиною Росії Слава Україні🌻 https://news.stanford.edu/2023/02/17/will-russia-ukraine-war-end
(Score: 1) by khallow on Tuesday May 28 2019, @03:23PM (1 child)
Why hasn't it happened already? Because the medical R&D system is barely functioning with vast sums burned for meager results. Trashing IP protection would be another nail in the coffin since it offers a weak guarantee of profit for the immense gambles that are played.
(Score: 2) by JoeMerchant on Tuesday May 28 2019, @05:49PM
The US medical system is so far out of whack there's no way it's going to get fixed without a lot of pain.
Now, to "fix" it, first you have to define what you want a medical system to do. If that includes providing medical care to people in an efficient manner, effectively treating common diseases for (something approaching) the lowest total cost - that's why I would call the current system broken.
Out of control Pharma profits are just one part of the puzzle. IP protection can be a useful component in the R&D framework, but it's also an easy poster child for abusive pricing policies.
Україна досі не є частиною Росії Слава Україні🌻 https://news.stanford.edu/2023/02/17/will-russia-ukraine-war-end
(Score: 4, Insightful) by driverless on Monday May 27 2019, @06:30AM
I've seen that from someone who worked for a big pharma company commenting on the stupendous amount of wastage within the company: "We'll just increase drug prices, what are people going to do, stop their cancer drugs?". He was joking, but its a good summary of the attitude, they're going to die without us so we can do anything we want to them.
(Score: 2) by MostCynical on Monday May 27 2019, @03:49AM (3 children)
what value a human life?
Do you measure potential, based on some local/regional/genetic average?
Do you round up (as most pro-life people are wont to do)? If so, $2million to save all that potential is cheap.
Or, is it just that some are born rich, so their parents can choose to (try to) save them..
"I guess once you start doubting, there's no end to it." -Batou, Ghost in the Shell: Stand Alone Complex
(Score: 3, Insightful) by shortscreen on Monday May 27 2019, @09:48AM
Making another baby would be much cheaper than paying $2 million to fix the first one.
Or maybe you could get pro-life people to contribute to your go-fund-me.
(Score: 1) by shrewdsheep on Monday May 27 2019, @11:53AM
My guess is that the 2mio exactly come from a cost-benefit calculation. In western countries a quality adjusted life year (a year lived in good health) is seen to be worth around 20k-30k. Multiply this by a life expectancy of 100yrs and you are at 2mio-3mio($€). The attitude is: how much can we squeeze out of the system? They have to present some calculations and they will be glad to explain the net benefit of the treatment to society. How to reign this behavior in is a difficult problem. Some drug have been reverse engineered and generically produced ignoring patents bringing the pharma company into the position of enforcing the patent and being the bad guy or lowering the price to spare everyone the effort (there was a story in the Netherlands some years ago, but I do not have time to dig it up).
(Score: 0) by Anonymous Coward on Monday May 27 2019, @12:04PM
By one definition , it is what can be earned in a lifetime.
So a college graduate is not worth saving with this drug because
They on average are worth only: $1.8 million
http://www.incontext.indiana.edu/2009/mar-apr/article1.asp [indiana.edu]
(Score: 2, Interesting) by Anonymous Coward on Monday May 27 2019, @03:51AM (1 child)
~$2361.11 per month for 75 years not including interest.
(Score: 0) by Anonymous Coward on Monday May 27 2019, @02:15PM
What is that in bitcoins?
(Score: 2, Insightful) by Anonymous Coward on Monday May 27 2019, @11:07AM
If you keep producing lots of duds then perhaps you shouldn't reproduce at all. There are billions of people already on this planet, what makes your messed up genes that worth copying?
Also lots of people like to claim that everyone is genetically mostly the same. If so they are free to use my sperm instead if they have problems with their own. They'd be more likely to end up with sociopathic cynical rude kids, but hey no diff right? ;)
(Score: 0) by Anonymous Coward on Monday May 27 2019, @07:16PM
The new guy says his price is reasonable because it costs less that what the old guy was charging.
If the logic is not ok with 'guy'='gangster', why is is ok with 'guy'='drug merchant'?
Both have the same basic business plan of your money or your life.
It is true that one is bringing the bad and the other is taking it away, but that does not make it ok.
The medical community is given a monopoly to serve humanity, not exploit it.
Basing price on what the market will bear is exploiting. (It puts the patient in the situation of having to decide what is it worth to live or worse, permit your child to live.)
Basing price on cost plus a reasonable profit is not.
The monopoly that comes with a drug patent needs to include some regulation what prevents this sort of conduct.