Health Minister Mark Butler says the new PBS listing will help about 70 Australians a year. Photo: Michelle Kroll.
A vital targeted treatment for people living with motor neurone disease (MND) has been listed on the Pharmaceutical Benefits Scheme (PBS), in a move the Federal Government says will save some Australians tens of thousands of dollars.
The announcement comes as the Riverina remains at the centre of one of Australia’s biggest MND mysteries, with rates of the devastating disease previously found to be around seven times higher than in major cities.
From 1 October, Tofersen (Qalsody) will be listed for the first time for the treatment of MND patients with a form of amyotrophic lateral sclerosis (ALS).
Qalsody, a targeted treatment for patients with a rare genetic form of ALS, works by reducing the production of SOD1 protein, offering a new treatment option for patients with limited existing therapies.
The treatment may slow disease progression and help patients maintain function for longer.
The development will be of particular interest in the Riverina, where communities including Griffith, Wagga Wagga and Leeton have recorded unusually high rates of MND.
A 2015 Macquarie University study found MND rates in the three Riverina communities were around seven times higher than in cities, prompting years of calls for research into why the disease is so prevalent in the region.
Just last month, NSW became the first jurisdiction in the world to make MND a notifiable disease, requiring doctors to inform NSW Health when a patient is diagnosed.
The new system is designed to finally provide researchers with comprehensive data about who is developing MND, where they live and potentially what they have been exposed to — information that could help investigate the Riverina’s extraordinary rates.
About 2800 Australians are estimated to be living with MND, and ALS is a particular illness accounting for up to 90 per cent of MND cases.
ALS is a progressive neurological condition that damages the nerve cells that control muscle movement.
Over time, this can affect a person’s ability to move, speak, swallow and breathe, leading to increasing disability and loss of independence.
This is the second treatment for MND listed on the PBS under the Labor Government, on top of the establishment of the Neale Daniher National MND Clinical Network, giving more people with MND access to treatment trials.
PBS listing means eligible patients will pay a maximum of $25 per script, or just $7.70 with a concession card.
Federal Health Minister Mark Butler said about 70 Australians were expected to benefit from this listing each year.
Without PBS subsidy, it would cost patients up to $28,600 per script.
“It will provide significant relief to the, we think, 70 or so patients every year who will be able to access it,” Mr Butler said on Friday (11 September).
“They have a particular genetic mutation, a particular subtype of ALS … MND is a heartbreaking, insidious disease that Australians are all too familiar with.
“The listing of Qalsody for ALS on the PBS is a game-changer for Australian patients.
“With every investment the Albanese Government makes in new research and treatments for MND, we hope to honour the great legacy of Neale Daniher.
“That is why our government recently committed $40.1 million to establish the Neale Daniher MND Clinical Network — to strengthen our efforts to find new therapies and improve quality of life for people living with MND.
“And now the new listing of Qalsody on the PBS for patients with ALS is also ensuring Neale’s extraordinary legacy will continue to make a difference in the lives of Australians living with MND.”
Original Article published by Chris Johnson on Region Canberra.
