Bunbury’s Oliver Barrett, 8, received an important letter in the post this week as his family push for the federal government to subsidise medications that treats the symptoms of cystic fibrosis.
Oliver and his mother Taryn, visited Canberra earlier this month to join the Cystic Fibrosis Australia rally at Parliament House. Along with dozens of other supporters from across the nation, the group lobbied the federal government to make cystic fibrosis medication Orkambi accessible on the Pharmaceutical Benefits Scheme.
Clinical trials provided solid evidence of improved lung function and reduced hospitalisation in patients aged 12 years and older.
While at the rally, federal health minister Greg Hunt announced Kalydeco, a drug that treats cystic fibrosis in young children, will be listed on the PBS from May 1. Discussions continue to have Orkambi listed too.
Oliver met with Mr Hunt at the rally and presented a letter he had written to Prime Minister Malcolm Turnbull about his brother Connor, 1, who has been diagnosed with the condition.
The letter asked the government to help his baby brother live for a long time and to have less needles. In less than a week, Mr Hunt had written back to Oliver.
A formally typed section noted Mr Hunt has spoken to the chairman of the independent body responsible for recommending medicines to government and has encouraged both sides of government to work together to provide medicine for all Australians who need it.
Mr Hunt also added a handwritten section to the bottom of the letter to thank Oliver for his efforts.
“Oliver, you are the best big brother any little boy could hope for,” he wrote.
“It may not happen overnight but we will fight for Connor just as we did for Kalydeco users. Your parents should be proud of you. Greg.”
Mrs Barrett shared the letter on social media as an important first step to bringing about positive change.
“It is so nice to now know we have someone on our side and someone who isn’t full of excuses,” she wrote.
“I am hopeful Minister Hunt will continue to fight with, and for, the Cystic Fibrosis community to make Orkambi available now.”