The article I read recently explained that the NHS had agreed a different (undisclosed) amount of money for the treatment, and also explained that they balanced the cost of the drug against the cost of treating a person who then would develop the disease, and, of course, the emotional impact of a child's death. I suspect that care costs must be particularly high for this kind of treatment to be funded. Obviously I'm speaking as someone from the UK, where we don't just allow people to die if they don't have enough money to afford care. How the USA will approach this will be interesting.