Call to reduce ‘scary’ gene therapy costs

28 November 2019 - Health care funders have been urged to overcome the “scary” cost of emerging gene therapies that ...

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'Healthy lottery' fears as Novartis plans to give away world’s most expensive drug

19 December 2019 - Novartis aims to give away 100 doses of its $US2.1 million-per-patient ($3.05 million) Zolgensma for spinal ...

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Three-year-old Matilda's ability to walk is giving hope to those with spinal muscular atrophy

18 September 2019 - The disease, which has been described as motor neurone disease for children, is the leading cause of ...

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Life-changing drug Spinraza for spinal muscular atrophy patients costing adults at least $500,000

29 August 2018 - In a small lounge in Essendon, with his parents by his side, Chris Kessaris sat in ...

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Guaranteeing essential services - record investment in health

8 May 2018 - The 2018–19 Budget is guaranteeing the essential health services that Australians rely on, with a $12.4 billion ...

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Life-saving medicine listed for spinal muscular atrophy

6 May 2018 - The Australian Government will provide $241 million to list a vital and life-saving medicine which treats spinal ...

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'It's magic': families, advocates celebrate lifesaving drug announcement

7 May 2018 - It’s not a cure, but for Bethan McElwee the drug Spinraza is the difference between her ...

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'Like winning the lottery': why William will now have access to life changing drug

23 April 2018 - Naomi Taylor feels like she's won every lottery possible. ...

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Parents take battle for life saving drug to Parliament

28 March 2018 - Six-year-old Violet Rickard sometimes asks her mother if she’s going to die. ...

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Spinraza, a life-saving drug for spinal muscular atrophy remains out of reach

5 March 2018 - Naomi Taylor and Ben McLennan watch their son William deteriorate every day. ...

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Nusinersen stakeholder meeting outcome statement

23 February 2018 - The outcome statement for the nusinersen stakeholder meeting held on 18 January 2018 is now available. ...

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Nusinersen: 'amazing' spinal muscular atrophy drug rejected for Pharmaceutical Benefits Scheme

20 December 2017 - They were hoping for an early Christmas present, but instead the families of children with spinal ...

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Agenda for the March 2018 PBAC meeting

20 December 2017 - The agenda for the March 2018 PBAC meeting is now available. ...

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Recommendations made by the PBAC - November 2017

15 December 2017 - The recommendations from the November 2017 PBAC meeting are now available. ...

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Willoughby mum continues push for breakthrough treatment for muscle wasting disease

15 November 2017 - North Willoughby’s Seona Donald’s campaign to make lifesaving treatment an affordable option for spinal muscular atrophy ...

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