Cystic fibrosis and the Pharmaceutical Benefits Scheme

30 November 2021

Throughout the electorate of Macquarie, which I represent, there are families facing the challenges of cystic fibrosis. They've joined with more than 35,000 people to urge for a speeding-up of negotiations with the maker of a drug called Trikafta so that it can be available under the Pharmaceutical Benefits Scheme. Trikafta was approved in April by the Therapeutic Goods Administration, but it's not on the PBS.

Cystic fibrosis affects the lungs and digestive system, and there is no cure. When I met with Nettie Burke from Cystic Fibrosis Australia, she told me that Trikafta is being used overseas in more than 20 countries and can extend life expectancy by more than 30 years. But the drug currently costs Australian patients nearly $300,000 a year, so only some people in Australia can afford it.

Mark lives in South Windsor and has a two-year-old daughter who was diagnosed with CF when she was just five weeks old. Their typical routine involves daily intensive physiotherapy to clear her lungs; enzyme replacement capsules to aid digestion; and nebulisers and antibiotics to treat lung infections. They can't afford Trikafta. Maureen is the great-grandmother of a six-year-old boy with cystic fibrosis and his two-year-old brother is a carrier of the CF gene. She would like them to live longer, and Trikafta could help. Lucy, who is 25 years old, grew up in the Blue Mountains. She has university qualifications in science and lives with cystic fibrosis. She was diagnosed at two months old. Her daily routine involves 50 tablets, 56 puffers, five nebulisers, two hours of airway clearance, daily exercise and a careful diet—on top of her full-time job. What her routine doe