Posted by Michael Wonder on 12 Jul 2018
Two boys, one horrific disease, different wonder drug funding
12 July 2018 - A young boy dying of a rare and horrifying genetic disease faces losing access to a potentially ground-breaking drug even though another boy with the same illness gets it for free.
The Royal Children’s Hospital, where both boys are patients, is demanding that the federal government address the ethical and financial dilemma posed by the inequity in how the two would be treated.
The experimental medication, which is worth $900,000 a year, has yet to be approved for full use in Australia. The hospital is treating both boys with the drug, which eases patients’ suffering and prolongs life.
