A group of Kiwis are calling on the Government to increase Pharmac funding to provide better access to children's health care saying they're currently "signing the death warrant for these kids".
From a distance, Logan Cho is just like any 11-year-old boy, but he's living with a rare disease and soon, you'll be able to notice.
"He'll lose his ability to go upstairs, run, walk, just little everyday things... he'll have to have a wheelchair," Logan's mother, Susan Cho, told Newshub.
He has Spinal Muscular Atrophy (SMA) type three - a motor neuron disease that slowly eats away at muscles. When Logan becomes a teenager, his condition is expected to deteriorate rapidly.
"I'm a little bit scared," Logan told Newshub.
His friends are, too.
"I don't want to have to see him getting worse and worse every day - I want him to get better," Ryan Grant told Newshub.
In its most severe form, SMA will rob someone of the ability to walk, eat and eventually breathe.
"We're not talking about people who don't recognise this is happening. Cognitively, they're fully functioning, very smart people and they're dying from the inside," Patient Voice Aotearoa Trustee Fiona Tolich told Newshub.
Worldwide, there are three treatments for SMA. One of them is Spinraza.
It has been proven to stop the disease or slow it down from progressing any further. It's not available in New Zealand, because the drug is not funded under the public health system.
"Knowing that there's something out there is heartbreaking. It is totally heartbreaking that there's something out there that could stop it," Susan Cho, Logan's mum, told Newshub.
Australia is one of 57 countries to provide public funding for Spinraza. Susan says her family are considering moving there for it, but the decision wouldn't come without a cost.
"You have to just sell up and go and leave everyone behind... My whole family is here and [our] community and happiness," Susan says.
"Of course, you can build it again overseas, but why? Why do I have to be a refugee to my own country?"
Anna Sutherland made the tough decision to move to Australia to access Spinraza in 2019. Her five-year-old son Heath has SMA type two.
"Back home [in New Zealand], Health was declining really, really quick. We were in hospital so much, he was sick all the time," Sutherland told Newshub.
"He wasn't eating... he was losing his ability to sit, he couldn't hold his head up anymore. He never stood, he never rolled, he never crawled, none of that... I'm not sure he would have survived much longer in New Zealand."
Anna says the treatment has changed every aspect of his life.
"He's gone from being virtually bedridden, to now he's at school just like every other kid."
"It saved his life... it's a complete miracle, it's magic."
A report into Pharmac, released late last year, found it was too focused on saving money, rather than saving lives. The interim review also found the drug-buying agency has a fortress mentality.
"It was a pretty compelling report. We want to get the solutions that the review group has proposed for this and I want to get that in front of the public as quickly as possible," Health Minister Andrew Little told Newshub.
Last year, more than 100,000 people signed a petition calling for the overhaul of Pharmac. The petition also called on the government to double its budget.
"We've already increased the budget by 25 percent in the four years we've been in government. The budget is now well over $1 billion... In the end, all government spending has to compete with other priorities," Little says.
"We do the best we can to make sure we're funding the health system to do the best it can for as many New Zealanders as possible."
But Tolich says it's not good enough.
"The budget being so low, in terms of what they've invested into Pharmac, was signing the death warrant for these kids. That is the reality - I'm not going to sugarcoat what these families are going through. Time is not on their side. Every day is potentially another motor neuron lost," she says.
"There's no appetite or desire from the government to show you that your life, or your child's life, or your partner's life, matters. There's none of that."
But the Health Minister disagrees.
"We put a lot into children's health. Every child matters and every child having a decent start in life with a good health system matters, too," Little says.
Tolich says the situation is soul-destroying.
"New Zealand needs this great big wake up call that they themselves are only a diagnosis away from the absolute pain and devastation that these families are experiencing."
"A disease may be rare, but hope shouldn't be. And that's what it is [here], unfortunately."
Watch the full story above.
