Newborn twins fight rare genetic disease, family says it'll cost millions of dollars to save their lives

[Crunchy Frog]

12. But how much does it actually cost to make the medication?

That's the real cost, not whatever it is that the pharma company decides it can get away with charging.

And if these babies get the medication in time, they'll likely be normal, healthy, and with a good quality of life.

In the meantime, it's not uncommon for extremely preterm babies to run up NICU bills that are higher than that, for extreme heroic medical treatments whose costs really are that high, only for the babies to end up dying anyway, or surviving with extreme disabilities or lifelong major medical complications. And yet the usual practice is to continue treating for as long as the parents ask for it, or sometimes even against the parents wishes.

I don't think there's nearly as big of a dilemma here as you're suggesting there is.