STATEMENTS BY MEMBERS - Petition: Cystic Fibrosis

STATEMENTS BY MEMBERS - Petition: Cystic Fibrosis Main Image

I table a petition regarding the use of Trikafta as a cystic fibrosis treatment.

The petition read as follows—

Trikafta is a transformative medicine that can change the lives of 90% of people with Cystic Fibrosis (CF). Up to 2200 Australians are desperately waiting for access to this life-saving medicine. People in the US have had access for 2 years and 19 countries have provided access to Trikafta. Yet in Australia Trikafta has been deferred twice and partially approved (for 20%) at the third meeting. Majority of the CF community in Australia is being left behind, due to an impasse in negotiations between Vertex Pharmaceuticals and the PBAC. Australia is 17th out of 20 OECD countries in terms of access to new medicines. This was shown with Kalydeco, the first of these life-saving CF medicines, taking 7X longer than the US, and 2-3X longer than many European countries. The difference between these countries and Australia is a faster and more flexible reimbursement process. The flexibility in these models allows access to medicines years earlier through mechanisms like access provided prior to reimbursement or pipeline agreements covering medicine portfolios. We hope the current parliamentary inquiry considers these options, with this inquiry leading to significant improvements to the speed of medicine approvals. With half of those with CF currently dying by age 30, Australians with CF need immediate access to Trikafta and need a flexible system that prioritises fast access to life-saving medicines.

We therefore ask the House to expedite the Trikafta negotiations between Vertex Pharmaceuticals and the Health Department, and for legislative changes that prioritises fast access to future medicines.

from 35,815 citizens (Petition No. EN3224)

Petition received.

The petition I present to the House today has been signed by no fewer than 35,815 individuals. It has been promoted by a number of people, including Genevieve Handley as the principal petitioner. Trikafta is a life-saving and life-changing treatment for people with cystic fibrosis who have at least one copy of the common delta F508 mutation. We've seen people taken off the heart and lung transplant list, and we've seen people's lives saved by this life-changing genetic treatment. I encourage the Department of Health and the minister to immediately approve the use of Trikafta for all those who have at least one copy of the delta F508 gene, which is by far the most common mutation causing cystic fibrosis, a severe disorder which often used to be fatal in childhood. With new genetic treatments, people can live to near-normal or normal life expectancies. I'd encourage the minister to act as soon as he possibly can.