Human Rights Commission grants case against PHARMAC for failing to fund rare muscular disorder drug

16 September 2020 - Newshub can reveal a ground-breaking Human Rights Commission case has been taken against Pharmac for failing ...

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Stranded mum with dying daughter makes desperate plea to Jacinda Ardern

13 September 2020 - A distraught mum stuck in New Zealand with her dying daughter Stella amid the COVID pandemic ...

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Kiwi mum pleads with PHARMAC to fund life-changing drug Spinraza for her two children

11 September 2020 - The mother of two young boys with a rare disease is begging PHARMAC to fund a ...

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Family battles PHARMAC and eyes Australian move to get 'miracle drug'

15 August 2020 - When Lani McLeod found out her toddler would never walk, she was gutted. ...

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Life-changing drug remains unfunded

1 July 2020 - Knowing his body is slowly deteriorating is ‘‘the scariest feeling ever’’. ...

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Teen with spinal muscular atrophy campaigns for wonder drug to survive

15 June 2020 - Taylor Fincham is one of 35 Kiwi children who suffer from spinal muscular atrophy. ...

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Hawke's Bay mum's heartbreak as PHARMAC refuses spinal muscular atrophy drug for her two kids

9 June 2020 - Skylah-Rose Shaw 8 and her brother Zayden Shaw 10 suffer from spinal muscular atrophy a disease that ...

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'New Zealand doesn't have help juice' - PHARMAC's decision leaves family stuck abroad

3 May 2020 - Kristie Yeoman says returning home would likely mean death for her daughter. ...

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Spinraza could give teen a longer life, but Government says it's too expensive

28 April 2020 - A Greymouth father is battling for PHARMAC funding for a drug he hopes can help his ...

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PHARMAC won't fund drug Spinraza to help children with spinal muscular atrophy

24 April 2020 - The parents of babies with a rare and debilitating condition will have to wait longer for ...

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Spinraza funding application reviewed by the Rare Disorders Subcommittee

17 December 2019 - PHARMAC has published the Rare Disorders Subcommittee meeting records which recommends Spinraza (nusinersen), a medication for ...

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Talking with Tama, a sick toddler who can't access the drug he needs

5 November 2019 - "Hi!" a bright young voice says down the phone. ...

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Tama is deteriorating fast. But the drug that can help him is too expensive.

31 October 2019 - Tama Hubbard has good days and bad days, just like any other 3-year-old child. ...

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'Why won’t they help him?': 'Broken' mother pleads for PHARMAC funding for toddler's rare disorder

1 November 2019 - The mother of a young boy is pleading with PHARMAC to fund a drug that could ...

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'I'm not ready to bring her back' - NZ not safe for three-year-old with motor neuron disease, mum says

10 October 2019 - Three-year-old New Zealander Charlotte Bond is showing signs she may walk again on her own with ...

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