MND drug Qalsody listed on PBS, slashing cost from $28,600 to $25

Australians living with motor neurone disease (MND) will now have cheaper access to treatment through the Pharmaceutical Benefits Scheme – carrying forward Neale Daniher’s extraordinary legacy.

Tofersen (Qalsody) will be listed for the first time to treat MND patients with a form of amyotrophic lateral sclerosis (ALS) which affects about 2800 Australians and 90 per cent of MND cases.

About 70 eligible patients will see the cost of each script fall from $28,600 to just $25 – or $7.70 with a concession card.

The drop to $25 marks a 99 per cent drop in price alone.

The progressive neurological condition damages nerve cells that control muscle movement and can affect a person’s ability to move, speak, swallow and breathe, leading to increased disability and loss of independence over time.

The drug Qalsody is a targeted treatment for patients with a rare genetic form of ALS that reduces the production of a protein, known as SOD1.

It offers a treatment option for patients with limited therapies by aiming to slow progress of the disease and help patients maintain function longer.

Macquarie University Hospital Head of Neurology Dominic Rowe said MND was one of the most devastating neurological diseases encountered, affecting not only patients but entire families.

“Despite advances in care, the impact of MND in Australia continues to grow,” he said.

“For people living with SOD1-ALS, today’s announcement is particularly significant because we now have access to a therapy specifically designed to target the underlying genetic cause of their disease.

“This represents the culmination of more than three decades of research since the SOD1 gene was first identified as a cause of inherited MND.”

Health Minister Mark Butler said MND was a heartbreaking insidious disease that Australians were all too familiar with.

“The listing of Qalsody for ALS on the PBS is a game changer for Australian patients,” he said.

“With every investment the Albanese Government makes towards accelerating the development and delivery of new treatments for MND, we hope to honour the great legacy of Neale Daniher.”

Mr Butler said the Federal Government recently committed $40m to establish the Neale Daniher MND Clinical Network – to strengthen its efforts to find new therapies and improve quality of life for people living with MND.

“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,” he said.