Novartis and their real life Hunger Games
Spinal Muscular Atrophy, or SMA, is an often fatal degenerative disease that impacts babies and children by causing them to lose their strength and control in their skeletal muscles (the ones used for moving). Children lose the ability to breathe, to swallow, etc, despite their brains being unaffected. They will mentally mature at a normal rate, despite their body slowly collapses around them.
It comes in several forms, but children with the most common form, type one, usually die in early childhood due to respiratory failure. People with type 0, the rarest and most severe form usually do not live past 6 months. Those with type 3 have an average lifespan into the twenties and thirties, and those with type four usually have normal-length lives, though not necessarily easy ones. SMA affects approximately 1 per 8,000 to 10,000 people worldwide.
This is all caused by a single gene- SMN1 (though it’s suspected severity may be impacted by another gene, SMN2).
There is, as yet, no cure.
However, there is an incredibly effective treatment that only has to be taken once and can save the lives of millions of babies all around the world.
This treatment is called Zolgensma, and it costs 2.15 million dollars.
A company known as Novartis bought the company that created Zolgensma and is selling it as the world’s most expensive drug… because they can. Novartis argues that since it’s a one-time treatment, it’s overall more cost-effective than many cumulative treatments. It was considering having the price go as high as 5 million, but they decided not to, because they’re just such nice people.
This does not change the fact that most people cannot pay 2.1 million for a treatment, no matter how much they’d love to. And Novartis knows this. And while they could very easily recoup the price they paid to buy the drug (8.7 billion) if they lowered the cost a bit, they refuse to do that, because they’re assholes and quite frankly, they have no reason to.
But, you know, putting a price on human life and all isn’t good for business. Especially when that price is the most expensive single-dose treatment ever.
So they set up a lottery.
Babies with the condition are put into a lottery and of all the children, 100 a year are given the life-saving medication they need.
Let’s repeat that, shall we?
Novartis knew that their 2.1M USD therapy for the largest killer of children under two was too expensive, so instead of making the price lower, they set up a lottery so that families can fight and suffer in the hopes that their child will be one of the 100 babies who gets to live.
And there’s still only limited data on how safe it actually is, having been approved in the US by the FDA after trials in only 68 children.
This was intended to be a cool-headed analysis, but we’re pissed off. And considering what we’d normally talk about, that means a lot. So this is mostly an anger-filled source list. If you’d like to do most research and see what you can do, check out @spookybuttons if you haven’t already.
