Pharmac is scrambling to reassure parents of children with cancer that their access to medicines won't be cut.
But it is reviewing a rule that allows blanket funding for children's cancer drugs - which could mean any hope of extending funding to other terminally ill children will be put to an end.
Fiona Tolich lives with spinal muscular atrophy (SMA) - a rare disorder which eats away at muscle nerves.
A drug named Spinraza has had incredible results for kids overseas but it's expensive and not funded in New Zealand.
Tolich has been campaigning for Pharmac to fund it for three years.
"In that time we've seen kids that have lost the ability to sit, to stand, to walk, to roll over, to swallow, and to breathe and that is the reality - some have died," she told Newshub.
Tolich took a case to the Human Rights Commission, arguing the government was discriminating against people with spinal muscular atrophy by not funding the drug.
Children with cancer have a different rule - blanket funding. She hoped Pharmac would extend that for SMA - but got the complete opposite response.
The response - Pharmac is now reviewing and reconsidering that blanket funding of kids cancer drugs.
"It's beyond heartbreaking, it's devastating because again it's another door shut in the face," she said.
Pharmac is promising not to cut off access.
"We won't be removing any access for any of the medicines that are currently used for cancer treatments," Pharmac chief executive Sarah Fitt said.
"Currently" - but the funding may be scrapped for future drugs.
"It isn't consistent with how we fund medicines for other children and also how we fund cancer medicines for adults," Fitt said.
When we asked Pharmac whether the review could mean more kids with terminal illness get access to life-saving drugs, we were told that's unlikely.
Because - like so many things with Pharmac - they haven't got the budget.
"No country in the world will necessarily provide that never-ending list of new drugs for free for every citizen," Prime Minister Jacinda Ardern said.
But what about just for every child?
