Liam Reading's family want Pharmac to fund life-saving drug Spinraza. Photo / Warren Buckland
Liam Reading's family want Pharmac to fund life-saving drug Spinraza. Photo / Warren Buckland
A_WB090620PHARMAC2.JPG Napier mother Rachel Shaw wants Pharmac funding for two of her children who have SMA. From left are children Skylah-Rose Shaw, 9, Chloe Matthews, 6, and Zayden Shaw, 1. Photo / Warren Buckland BYLINE: SahibanHyde
Hastings mum Stacey Reading is delighted the Human Rights Commissioner has called on Pharmac to urgently review its refusal to fund the life-saving drug Spinraza for SMA sufferers.
Reading is a stay-at-home mother whose entire life revolves around looking after her 10 year-old son, Liam, an SMA sufferer.
Liam suffers from Spinal Muscular Atrophy (SMA), a deadly genetic condition.
He was diagnosed with SMA at 18 months, and he can't walk, he's been in a wheelchair since he was 2-1/2
Chief Human Rights Commissioner Paul Hunt wrote to Pharmac in May calling for an urgent review of its refusal to fund the drug Spinraza.
His six-page letter was released to RNZ under the Official Information Act.
Hunt argued that Pharmac's approach was too narrow and did not take into account the costs to society - including housing, transport, education and employment.
"I recommend Pharmac urgently evaluates SMA and Spinraza by way of a societal framework," Hunt wrote.
Reading said it was about time someone with authority spoke up about it.
"Liam knows there is a drug out there which will help him be happy and healthy, but New Zealand won't let him have it, imagine thinking that as a 10 year-old," she said.
"It's amazing the Human Rights Commissioner is stepping in, someone needs to, someone is finally taking it seriously."
Napier mother Rachel Shaw wants Pharmac funding for two of her children who have SMA. From left are children Skylah-Rose Shaw, 9, Chloe Matthews, 6, and Zayden Shaw, 10. Photo / Warren Buckland
Liam has a six year-old sister Catherine who "stands up" for him, Reading said.
"She knows a lot more about the bad things in life, than any other six year-old should.
"She's too scared to go to the doctor, she doesn't like hospitals, all because she has seen Liam's struggle."
Fellow Napier mother, and mother to two SMA sufferers Rachel Shaw said the Human Rights Commissioner's appeal was "bittersweet".
"It is amazing that other people are acknowledging it, but the fact is it's having to go to this level," Shaw said.
Shaw has three children, two who suffer from SMA - Skylah-Rose Shaw, 9, and Zayden Shaw, 11.
"Zayden has had a week and a half of being well this term, he's been out of school, more than he's been in," she said.
"I am stuck at home being a nurse. I have got a walker for Skylah-Rose. It's had a huge mental and physical impact on all of us.
"If Spinraza was funded my children would have a better chance at life, better quality."
Pharmac Chief Executive Sarah Fitt said she along with board chair Steve Maharey met with both Human Rights Commissioner Paul Hunt and the Commissioner for Children Andrew Becroft last month.
"There will always be more medicines we want to fund than we can afford. This means we have to make difficult choices about what medicines are funded."