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

Newshub can reveal a ground-breaking Human Rights Commission case has been taken against Pharmac for failing to fund a drug that treats a rare muscular disorder in children.

It comes as National announced their health policy on Wednesday which would give an extra $5 million a year to the Government's drug-buying agency for funding rare disorder drugs. 

National is also pledging to get all elective surgeries done within a four-month timeframe and promising to overhaul the elective surgery points system, making it even across New Zealand in an attempt to put an end to the postcode lottery. 

The complaint laid against Pharmac is over its failure to fund Spinraza, a drug that treats a rare muscular disorder called Spinal Muscular Atrophy, or SMA. 

Newshub has obtained a letter sent to Health Minister Chris Hipkins from the Human Rights Commission informing him that is offering its dispute resolution service to the complainant Fiona Tolich. 

"Fiona alleges that this group are being denied access to effective treatment for their rare disorder by the direct decision making of the Minister of Health and PHARMAC's processes," the letter says. 

"Fiona considers the decision making and the processes to be discrimination on the prohibited ground of disability."

Tolich, who lives with SMA and has been fighting to get the drug funded, laid her complaint on behalf of 35 young people aged 18 years and under who suffer from the rare disorder. 

That group includes two-year-old Lincoln and his baby brother Harlan, who both suffer from the rare disorder which eats away at muscle nerves, affecting the ability to walk, stand and even breathe. In some cases it can be fatal. 

Fiona Tolich.
Fiona Tolich. Photo credit: Newshub

"It turned our world upside down. The struggles that the boys will have are so unfair," the boys' mum Lani McLeod told Newshub. 

Spinraza has had incredible results for kids overseas but it's not funded by Pharmac in New Zealand, and McLeod says that's "discrimination". 

"The fact that there's not enough children to make it worth it when one child struggling this much makes it worth it," she said. 

Tolich agrees. 

"They're blatantly unlawfully discriminating against the very people they're meant to be protecting," she told Newshub. 

The Health Minister says he believes that access to medicines is a human right. 

"Yes I do, but you know there are some constraints around that, the medicines budget is not an unlimited one," he said. 

National's health spokesperson Dr Shane Reti sees it differently. 

"Access to medicines is absolutely critically important but I don't know if it would quite sit as a right," he said. 

Tolich wants them both to answer this blunt question: "Are you comfortable with sentencing children to death?" 

Both women were told to look forward to National's policy announcement on Wednesday - $5 million a year toward drugs for rare diseases, which Labour says there is merit in. 

"We can look at whether there should be dedicated funding for rare disorders. I think that's a debate worth having," Hipkins said. 

But National's proposal is not enough, because the demand for Spinraza will cost $6 million alone. 

"The kids need more - it's just not enough to get the treatment across the line," McLeod said. 

Dr Reti said it's "never enough" but people need to remember rare disorders have several funding pools. 

National's other big pitch is ending the postcode lottery in surgery - standardising the points system so every DHB has the same threshold. 

But surgeons Newshub spoke to say the only thing that'll fix that is money, and lots of it. 

"Without increasing the resources either in terms of the facilities or the money or both you won't make any difference at all," said surgeon Phil Bagshaw. 

Orthopaedic surgeon John Mckie said, "The reality is that the public hospital system is essentially running at full speed most of the time."