Bunbury mother and son duo Taryn and Oliver Barrett visited Canberra on Tuesday morning to join the Cystic Fibrosis Austraila rally at Parliament House.
The pair joined dozens of other supporters from across the nation, lobbying the federal government to make cystic fibrosis medication Orkambi accessible on the Pharmaceutical Benefits Scheme.
Meeting with federal health minister Greg Hunt, Oliver presented a letter he had written to Prime Minister Malcolm Turnbull about his brother Connor, 1, who has been diagnosed with the condition.
Mrs Barrett said the letter asked the government to help his baby brother live for a long time and to have less needles.
WATCH: Oliver present his letter at 7:20.
Clinical trials of the drug provided solid evidence of improved lung function and reduced hospitalisation in patients aged 12 years and older.
While at the rally, Minister Hunt announced Kalydeco, a drug that treats cystic fibrosis in young children, will be listed on the PBS from May 1.