Pharmac is being threatened with legal action to fund a drug that will save the lives of around 25 Kiwi children with a rare motor neurone disorder.
While one family is considering going to Australia to get the drug, another Kiwi teen wants to return home, but can't.
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Eight-year-old Logan Cho loves football, but he has a genetic disorder that could put him in a wheelchair by the time he's a teenager.
It's called spinal muscular atrophy, SMA, a childhood motor neurone disease which robs people of the ability to walk, eat and breath.
"He's at his best at the moment which is walking and he can run, but he's tripping over," says Logan's mum, Susan Cho.
He's losing motor neurons every day, but there is a drug that can stop the symptoms developing.
It is expensive, costing hundreds-of-thousands-of-dollars per patient per year, but it's available in 50 other countries.
"With Spinraza, he could be swimming a length, he could be running better, he wouldn't be tripping over, he could keep up with his friends his cousins," says Cho,"Also stopping it means that he won't be in a wheelchair."
While the Cho family considers moving to Australia to get the drug, another Kiwi family wants to come home, but can't.
Sixteen-year-old Natalie Edwards happened to be living in Australia when they drug became funded there last year.
She's in a wheelchair and while Spinraza can't reverse the symptoms, it can stop them progressing and she's already seen improvements.
"Now, she can turn on a light switch, she can be handed a plate or a book at school and not drop it, she used to just drop it immediately," says Natalie's grandmother, Judy Lawrence, "Open the fridge, just little things like that. But the main thing is, she won't deteriorate any more."
Natalie wants to return to New Zealand next year to study civil engineering at the University of Auckland, but unless the drug's funded here she'll be risking her life to do so.
"Absolutely, if Spinraza isn't not funded. And much as I want her back here, her father wants her back here, and the family are desperate to come back here, we all believe that she should stay in Australia if it's not funded here," says Lawrence, It's definitely down to money in my view, but how can they cost a life, how can they say this child is not worth it."
Approximately 75 New Zealanders have the disease, around 25 are under 18. The initial application is to fund the drug for under 18s, as is the case in Australia, with the long term view of funding it for adults too.
SMA advocate Fiona Tolich says to not fund the drug is a crime against humanity and she's stepping up the fight.
"We've got three options that we're considering," says Tolich, "Human Rights Commission, high court, or a judicial review."
Pharmac has deferred the decision saying it wants more evidence. But Tolich says there's no time to wait.
"I think it's atrocious that we've got people living and slowly dying or their disease is taking course when there is a treatment that is available but we're playing a finance game."
"The only ones paying are the patients at the end of that who are paying with either their lives or their basic human functions," says Tolich.
Newshub.
