This is amazingly great news. It's a big step in this individual case. But there are so many people with rare illnesses that are denied access to life saving drugs because the PBS simply has no mechanism for dealing with them. My husband is one such sufferer with a rare cancer that is responding to Keytruda at a cost of $7,200 every 3 weeks. If he had melanoma, that drug would be free on the PBS. He doesn't have melanoma so the government doesn't offer any financial assistance at all.
Sussan Ley, please take this example with Eculizumab and extend it to other life saving drugs for rare illnesses.