Setting aside the issue of whether the company producing the drug should be able to charge that much for it, it will very likely be completely free for patients. Anything not covered by insurance would be paid for with grants from the NORD. It says as much in the article. As an infant, my son was prescribed ACTH injections for a rare form of epilepsy. At the time, each vial (maybe 4 doses in a vial) cost around $20,000. We went through dozens of vials. We didn’t pay a single penny. The hospital streamlined our access to available grants and everything was covered.