Date published: 
6 May 2018
Media type: 
Media release
General public

The Turnbull Government will provide $241 million to list a vital and life-saving medicine which treats Spinal Muscular Atrophy (SMA), cutting the cost to patients by hundreds of thousands of dollars.

From 1 June this year we will make Spinraza available on the Pharmaceutical Benefits Scheme (PBS) for the treatment of Type 1, Type 2 and Type 3a SMA for all patients under the age of 18.

This will be both life-saving and life-changing for hundreds of young patients and their families.

Patients would otherwise pay more than $367,850 a year for the medicine. This listing will now mean they only pay a maximum of $39.50 per script, with concessional patients paying just $6.40.

This vital medicine will no longer be out of reach for patients.

SMA is an inherited genetic muscle wasting disease characterised by a loss of motor neurons. This causes progressive muscle weakness and wasting, leading to death in severe Type 1 cases.

The disease is the number one genetic cause of death of babies under two in Australia.

Spinraza is the first and only treatment of its kind to be listed on the PBS for SMA.

The medicine works by slowing progression of the disease and in many cases the drug can halt the progression of the disease, and for others it can significantly improve motor function.

I have spoken to countless families about the need for this vital medicine and I know what a positive difference it will now make.

It delivers hope for so many beautiful young patients and their families.

I want to thank Biogen for immediately opening up compassionate access to Spinraza from 1 May for Type 1, Type 2 and Type 3a SMA, ahead of the 1 June listing on the PBS.

The independent Pharmaceutical Benefits Advisory Committee (PBAC) recommended the listing of Spinraza.

The Committee is independent of Government by law and in practice. By law the Federal Government cannot list a new medicine without a positive recommendation from PBAC.

Since coming into Government, the Coalition has helped improve the health of Australians by subsidising more than $8.3 billion worth of new medicines.

Unlike Labor, we are subsidising all drugs recommended by the PBAC.

Labor delayed the listing of seven vital drugs – leaving important medicines out of reach for many Australian patients.

Our commitment to the PBS is rock solid. Together with Medicare, it is a foundation of our world-class health care system.

PBS listings are published on the Schedule of Pharmaceutical Benefits, which is available through the PBS website.