Tolich has been campaigning for Pharmac to fund it for three years.
“During that time, we’ve seen children who couldn’t sit, stand, walk, roll over, swallow, and breathe, and that’s the reality – some of them have died,” she told Newshub.
Tolich brought a case to the Human Rights Commission, arguing that the government discriminated against people with spinal muscle atrophy by not funding the drug.
Children with cancer have a different rule: general funding. She hoped Pharmac would renew that for SMA, but got the opposite answer.
The Response – Pharmac is now reviewing and reconsidering that blanket funding of childhood cancer drugs.
“It’s more than heartbreaking, it’s devastating because it’s yet another door closed to the face,” she said.
Pharmac promises not to block access.
“We will not withdraw access to any of the drugs currently used for cancer treatments,” said Sarah Fitt, Pharmac’s CEO.
“Currently” – but funding for future drugs could be cut.
“It is not consistent with how we fund drugs for other children and also how we fund adult cancer drugs,” Fitt said.
When we asked Pharmac if the review could mean more children with terminal illness getting access to life-saving drugs, we were told this is unlikely.
Because – like so many things at Pharmac – they don’t have the budget.
“No country in the world will necessarily provide that never-ending list of new drugs for free to every citizen,” said Prime Minister Jacinda Ardern.
But what about every child?