Life-changing motor neurone disease drug to become affordable for Australians

A breakthrough treatment for a rare form of motor neurone disease is about to become dramatically cheaper, offering new hope to dozens of Australians battling the cruel condition.

The drug Qalsody will be subsidised on the Pharmaceutical Benefits Scheme from October 1, slashing the cost from $28,000 per script to just $25.

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It’s the first targeted therapy of its kind for a specific form of motor neurone disease, which causes muscle weakness, paralysis and death. Almost 3,000 Australians are impacted by the disease, for which there is no cure.

Fearless motor neurone disease campaigner Neale Daniher lost his 13-year battle in May. In the same month, NRL star Jai Arrow revealed his diagnosis before an emotional farewell to the game last week.

Qalsody targets patients with the specific SOD1 ALS genetic mutation, potentially slowing progression of the disease.

Qalsody now costs $25 per script. Credit: 7NEWSLuke Edmondson lives with MND. Credit: 7NEWS

Luke Edmondson, who was diagnosed at 28 with a new baby, has been taking the drug for two and a half years.

“My diagnosis was devastating shock at the time, being a 28-year-old with a new baby,” he said.

“I’ve noticed little to no progression of my symptoms.”

Only around 70 Australians a year are expected to benefit from the PBS listing, but in a disease with so few advancements, even a breakthrough for a small group is a big step forward.

The listing continues the fight for a cure for motor neurone disease.