Pharmaceutical Benefit Scheme

I’m calling on the federal Labor government to immediately expand the listing of Trikafta on the PBS to children aged six to 11 with cystic fibrosis. In November 2022 the PBAC recommended that access to Trikafta be expanded to these children. There are approximately 500 children waiting for access to Trikafta, and there is no reason for the government to delay this listing. These wonderful young people deserve access to the best medications possible, because the treatment will make a profound difference to their lives, reduce the need for hospital admissions, reduce the need for lung transplants and improve their quality of life. In 2021, when the PBAC assessed Trikafta, they estimated that it could give people living with cystic fibrosis 27 more years of life when compared to supportive care and 21 more years of life for patients previously treated with other medications, either Orkambi or Symdeko. So I’m calling on the government to immediately expand the listing of Trikafta to children aged six to 11. In paediatric patients, there is evidence of early structural lung damage even prior to the emergence of symptoms, including those of a respiratory nature. Early diagnosis and intervention is fundamental to achieving better outcomes for these children.

Cystic fibrosis is considered one of the most common life-threatening genetic conditions, affecting 3,500 Australians. Three hundred and seventy-five of these people live in my home state of Western Australia, and 80 of these are children aged six to 11 who would be eligible for Trikafta when it’s listed on the PBS. I’m speaking up tonight to support these children, the one in 2,500 babies who are born with cystic fibrosis in Australia, the ones who live every day with this progressive genetic disease that causes persistent lung infections and defects that limit the flow of chloride and water through the cell membrane, causing a thick, sticky build-up of mucus in the lungs, pancreas and digestive system. It limits children’s and adults’ ability to breathe and makes it much easier for germs to grow. It begins at birth and leads to cumulative health decline over time and premature death from respiratory failure. The most recent figures I saw set the median life expectancy for Australians with cystic fibrosis at 47 years, significantly lower than for the average Australian—and there is no cure. The management and treatment is a lifelong and relentless process. There are people with cystic fibrosis who may have to take up to 60 capsules a day to help digest food and have up to four hours a day of airway clearance physiotherapy. Hospital admissions can be frequent and extended, and it is the leading cause of lung transplants in Australia. So, early and effective interventions is critical, given that in paediatric patients there is that evidence of early structural lung damage.

While the coalition were in government, we listed Trikafta, Orkambi and Symdeko. They were amongst the 2,800 new or amended listings we added to the PBS. It was a $15 billion investment. Orkambi was also expanded for children from two to five years of age. It allowed that earlier access to life-changing medicine that works by improving that flow of chloride in water and helps improve the lungs’ function and breathing. But we now need the federal government to add Trikafta to the PBS immediately for these young patients. Please provide this life-changing medicine to children aged six to 11 who live every day with the debilitating and progressive effects of cystic fibrosis. I’m hoping that sooner rather than later our researchers and scientists, the wonderful ones in Australia funded through the Medical Research Future Fund that we created in government, will be able to find the ultimate cure for cystic fibrosis. Until then, the federal government needs to list this PBAC-approved medication for children aged six to 11. As I’ve said, this is a progressive disease. The sooner the medication is available, the better the result. We’ve certainly had that recognised by other governments in other countries who have already granted access to Trikafta in this age group. I strongly urge the Australian government to do the same.