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Thursday, 24 May 2018
Page: 4634

Mr EVANS (Brisbane) (09:56): I want to add to some of my previous comments here about cystic fibrosis, the most common life-threatening recessive genetic condition affecting young Australians. It's a debilitating disease that affects organs like the lungs and pancreas, causing irreversible damage. It often causes premature death. There is a medicine called Orkambi, which I have spoken about here before, that shows promising signs for treating one of the most common strains of cystic fibrosis. It is not currently listed on the Pharmaceutical Benefits Scheme, but it is soon to be considered by the independent expert advisory body, the Pharmaceutical Benefits Advisory Committee, at their meeting in July. Orkambi is prohibitively expensive—essentially unaffordable for most families—despite its life-enhancing potential.

Late last month I met with a group of Brisbane families directly affected by cystic fibrosis, along with the formidable CEO of Cystic Fibrosis Queensland, Petrina Fraccaro. Many of these families have moved to Brisbane and Queensland because of the climate's positive impact on their condition and their quality of life. The families told me about their positive experiences in clinical trials with Orkambi. They told me some fairly impactful stories about how Orkambi had significantly improved quality of life and normalised lung functions. It is clear to them and their children that this really is a life-changing medicine.

I've also met with the health minister and raised the plight and frustration of these families, and I know that the minister is both deeply sympathetic and very aware and focused on the difficult situation that they face. He understands it's heartbreaking to have help for their children, these families' children, so tantalisingly close but so utterly unaffordable.

The missing piece of this puzzle is meeting the assessment criteria of those independent experts at the PBAC, including their measures as to cost-effectiveness. I encourage Vertex, the company that manufactures Orkambi, to do the right thing, to remain at the negotiating table, to negotiate realistically and with good faith on pricing, and to ensure that Orkambi can be made available to Australian families affected by one of the most common strains of cystic fibrosis.

As we know, this government does fund every single medicine recommended by the PBAC and that is, I'm proud to say, a function of strong economic management. It hasn't necessarily been the automatic way that previous governments have worked, when others have lost control of the budget. Our strong economic plan and our approach allows the coalition to make this rock solid commitment to funding the healthcare system, including the listing of medicines as soon as the PBAC recommends them. I unambiguously lend my strong voice in support of these families living with cystic fibrosis, and I really hope we get a favourable recommendation from the body in the months ahead.