Two newborn twins need a one-dose treatment that would save their lives: Zolgensma, a $2.1M drug. Insurance (also the mother's employer) cut coverage of the drug the day after they were born.
New parents in Kansas City are fighting to save the lives of their newborn twins. They said the boys have a rare genetic disease that will cost the family millions of dollars to treat.
america is so fucking based man
in any proper country that company at least gets forced to pay by the government then ordered to shut down forever due to wanton cruelty. all the employees get generous severance except whoever made that call. depending upon your view of carceral punishment there are a few ways to go with that guy.
Pharma companies are basing pricing for these one-time-in-a-life-dose drugs on supply and demand principles. There will never be high demand for these drugs because the conditions are so rare. And only needing to be dosed once for a complete lifetime cure means that there is no recurrent payment happening the way you would have with a drug that needed to be dosed repeatedly over a lifetime.
You'll hear all the usual excuses about "muh R&D costs 😭😭" but the truth is they're pricing it this way because they can. Because somewhere in the bible of capitalism, this is the way things work.
Growing specific viruses which predictably change human DNA and don't turn you into a zombie or something, that's far more complicated than unicorn blood.
I commented this elsewhere, but to answer your question,
Zolgemsma is a modified version of adeno associated virus and has to be grown under specific conditions. It costs $500k-$1m per production. It's also a one time injection that functionally cures the person of the disease. There are a couple other options but for comparison, the other therapeutic is Spinraza which is an intermittent intrathecal infusion which is $805,000 for the first year of therapy and $380,000 per year thereafter for the rest of your life.
SMA type I also is 100% fatal by year 2-3 and the baby dies without being able to even lift their head. It's a terrible prognosis.
To be clear, I think we should bear the actual costs of research, development, and manufacture as a society and not profiteer off the sick, but there are some contributory reasons for the price.