Trevor Evans (Brisbane, Liberal Party) Share this | Hansard source

I am proud to be speaking in this parliament again in support of those living with cystic fibrosis. I will always take every opportunity I can to raise awareness of this disease. Last year, as a very new MP, I went to meet with the team at Cystic Fibrosis Queensland to learn more about their vital work, and I learned that here in Australia we now have more adults than children living with CF due to our improving ability to manage the effects of this incurable disease. Many of them live in Queensland, I should add, because of the weather. As it is a respiratory disease, sufferers tend to move to warmer climes for relief, and so Queensland has a disproportionately high number of people living with CF, and that increases the importance of and reliance on the hard work and resources of Cystic Fibrosis Queensland. It's possibly why so many speakers from Queensland have been joining with me to speak on this motion here today.

The current life expectancy, as was previously said, is only 38 years for those with cystic fibrosis. I turned 36 years old just last week, so that number really resonates with me. Last time I spoke in this parliament about cystic fibrosis, I spoke about my pride that this government had just expanded access to the life-expanding drug Kalydeco by listing it on the PBS for those aged two to five. That announcement by the Minister for Health, Greg Hunt, meant that 30 young children around Australia now have the help they need to stave off the lung disease that ultimately denies them their life expectancy.

Naturally, as I predicted then and as I welcomed at that time, the cystic fibrosis community has now turned its focus to drugs like Orkambi. I note the PBAC has made this recent decision not to list Orkambi on the PBS at this time, and without that recommendation by the PBAC a government can't subsidise the cost of the medicine under the National Health Act, yet it does seem clear that this drug with further clinical testing and trials will have a tangible benefit to the cystic fibrosis community. My understanding is that the PBAC's offer would have seen Vertex, the owner of the drug Orkambi, receive more than $100 million in public funding, but that was declined in those negotiations.

So I and many of my colleagues across this parliament will continue to push for an agreement that will see further testing and future access to the medicine. I note, for instance, the very thoughtful contribution of the member for Bowman just before on how the PBAC works and how sometimes the stakeholders in this global world do not necessarily make it easy for countries like Australia. What I do know is that the Minister for Health, Greg Hunt, has been working tirelessly to see as many life-saving medicines as possible listed on the PBS. The decision to list and fund Kalydeco was one of many decisions that this government's made as part of its investments in new medicines.

It is a solid track record there. This government has so far provided $7 billion of additional subsidies for new medicines. Over 1,000 new medicines have been listed and are being funded. This government has a 100 per cent track record of funding all of the new drugs and medicines that do get recommended by the PBAC. It has a perfect track record of finding the money to deliver those subsidies. I just want to note in passing that that kind of track record doesn't just happen automatically. This is one more example of why it matters to everyone to have strong national economic management. Everyone hoping for new medicines to be listed and then subsidised will rely on a government that can manage the economy and the budget effectively to find the money to pay for them.

My understanding is that there is now a proposal on the table for a phase 4 clinical trial, which would allow patients access to the drug whilst getting the data that we need on its effectiveness. The findings of a trial like that could be used to help get the medicine listed on the PBAC in the future. It seems I join with many of my colleagues across the parliament to call on Vertex to resubmit an application and to consider running further clinical trials to give more patients access to the drug. It's vital that both PBAC and Vertex continue negotiations on the best way forward for Orkambi.

Australia's PBS is one of the foundations of our universal healthcare system, which is the envy of most countries around the world and which we must continue to work hard to defend and to refine over time. It's in this environment—in this policy setting—that I hope for and look forward to Orkambi's eventual listing on the PBS. Achieving quality of life and longer life expectancies for the cystic fibrosis community is paramount, and I look forward to continuing to work hard with Cystic Fibrosis Queensland, with cystic fibrosis sufferers around the country and with other relevant stakeholders to ensure that their advocacy is strong and that they have a voice here in Canberra and in government.

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