QUESTIONS WITHOUT NOTICE

Mr BUTLER (Hindmarsh—Minister for Disability and the National Disability Insurance Scheme, Minister for Health and Ageing and Deputy Leader of the House) (15:08): Thank you to the member for Tangney. I know right now he's thinking a lot about his friend Lindsay, who is in a real struggle, a terrible struggle, with MND right now. Our thoughts to Lindsay and his family.

Member for Tangney, please convey them and our best wishes. Lindsay is one of 2,800 Australians, we think, who are battling MND right now. It's the fastest acting of all of the neurodegenerative diseases.

Every day, on average, we lose two Australians to MND and two new Australians receive the shocking diagnosis. Australians have come to understand quite deeply the impact of MND. We lost the former Australian of the year Neale Daniher in the year we learned of the diagnosis of Jai Arrow at the age of just 30 years old.

Mr Albanese: 31. Mr BUTLER: Just 31. Of course, every individual diagnosis, every family's struggle and every family's loss is equal.

But I think we owe a particular debt of gratitude to people like Neale and Jai and their families who turn a private struggle and a private story into a public story, one that lifts awareness of a condition like this and builds support for research, as both of them have been doing. There are two medicines on the PBS to treat MND, both of which slow the progression of the disease: riluzole and edaravone.

But usually that slowing is only measured in months, certainly not years. But on Friday I joined the MND community at their annual conference in Adelaide to announce a step change in treatment. From 1 October, a new drug will be listed on the PBS, known as Qalsody.

It's only available for a relatively small cohort of patients that have a particular mutation of the SOD1 protein, but the results are quite extraordinary. I was joined by Luke, who's only 34, and his two beautiful young children, who were running around the media conference. Luke has been on Qalsody on a compassionate access basis for 2½ years.

He reported that in that extended period of time, for an MND patient, he has experienced no progression of the disease. Indeed, there are some reports of patients on Qalsody actually experiencing an improvement in function. This is a highly effective but very expensive treatment.

Without listing on the PBS, it would cost patients more than $28,000 for every single script. It will now be available for $25. Unfortunately, it doesn't work for all MND patients.

The cohort is relatively small at 70 patients a year. It's still not a cure, but it is a step change in hope that we are actually making progress in the fight against what Neale Daniher very rightly called 'the beast'. Mr Albanese: On that note, I certainly think everyone would associate themselves with the comments of the health minister.

I ask that further questions be placed on the Notice Paper.