Posted by Michael Wonder on 29 Mar 2019
Batten disease medication Brineura available to Australian children via Life Saving Drugs Program
29 March 2019 - A groundbreaking drug that slows the progression of a rare and fatal childhood illness has been given funding through the Federal Government's Life-Saving Drugs Program.
It is too expensive to go on the PBS but will be funded on the Life-Saving Drugs Program
Batten disease is a neurological illness that robs children of their ability to walk, talk, see and eat.
About 35 children have some form of Batten disease in Australia, according to the Batten Disease Support and Research Association.
