If it's any consolation, the previous treatment was evilly priced too.
www.thelancet.com/journals/ecl...

Less than 2 years after that lecture, Novartis released the therapy (which, I repeat, saves the lives of babies) as Zolgensma. It cost $2.1 million and would not be covered by insurance. (3/3)

www.drugs.com/medical-answ...

but the pharma company producing it (funded largely by the NIH & donors) will want to make up for the cost of the recurrent treatments like spinal injections these kids have to suffer through to keep them alive (with very low life expectancy) because they would only need the gene therapy once. (2/3)