James, in glasses, centre, and Brianna, to his left, were among those presenting the petition at Parliament today asking Pharmac to continue funding medicine for all children. Photo: RNZ / Krystal Gibbens
A petition calling on Pharmac to "fund lifesaving medicines for all New Zealand children" has been received at Parliament today by ACT and Te Pāti Māori.
The petition by Patient Voices Aotearoa (PVA), was launched in response to a Pharmac decision last month to review the way children's cancer medicines are funded - specifically rule 8.1b of the Pharmaceutical Schedule.
It is an exceptional rule that allows medicines to treat children with cancer to be funded without any evaluation from Pharmac.
This is in contrast to all other medicines which must go through a rigourous evaluation process before Pharmac decide whether to fund them.
PVA spokesperson Dr Malcolm Mulholland said parents and children who have have previously received treatment through rule 8.1b are "extremely concerned about the future of the rule and about the ability for newly diagnosed children with cancer to access the medicines they need in some instances".
He said they are advocating to keep rule 8.1b for children with cancer, but also to extend it to children with rare diseases and chronic illnesses.
At the petition's presentation were children who could be impacted by Pharmac's decisions.
James, 17, who has been diagnosed with both lymphoma and a rare form of psoriasis, said he's been dealing with Pharmac for years.
He is critical of how they work.
"Pharmac has got this cruel method of cost-cutting where for all paediatric drugs they start you with the cheapest and they work your way to the most expensive."
It's a process that means kids get treated with drugs that don't necessarily work for their illness and can be less cost-effective if the children spend time in hospital as a result.
"They don't care if you're sitting there, suffering and it's clearly not working," James said.
"You've got to do a prescribed course that they say before they will admit it's not working."
But considering removing rule 8.1b "is a new low for Pharmac," he said.
The square peg in a round hole approach is something that 10-year-old Harper, who has muscular dystrophy, can relate to.
Harper, 10, who has muscular dystophy, with his father Dion. Photo: RNZ / Krystal Gibbens
His father Dion said the steroid treatments for Harper's condition that are funded are limited.
He would like to see better unfunded medicines funded for both Harper's condition and for other rare diseases.
Meanwhile, Brianna, 16, is a type 1 diabetic. Her family self-funds her treatment as it is not covered by Pharmac.
She wants to see Pharmac extend its funding, as she said not everyone can afford to self-fund.
Today's petition was handed to Te Pāti Māori co-leaders Debbie Ngarewa-Packer and Rawiri Waititi and ACT deputy leader Brooke van Velden.
Dr Mulholland said it was "powerful" that both the left and the right were coming together on this issue.
Patient Voices Aotearoa spokesman Dr Malcolm Mulhollan (left) at Parliament today. Photo: RNZ / Krystal Gibbens
His message to Pharmac is simple: "Show some leadership. Do the job that we think you're there to do."
He said "that's to advocate for patients not to kow-tow to your budgetary concerns, and in the process [...] deliver very bad health outcomes for New Zealanders."
In a statement, Pharmac's Chief Executive Sarah Fitt said "we need to better understand the difference that rule 8.1b is making to the lives of children with cancer, their family and whānau, and the people who are working hard to treat and support them.
"We have not made any changes and are not ruling anything in or out at this stage.
She said Pharmac was seeking feedback on whether there are other areas of health that could benefit from a similar funding pathway.
"We want to understand the impact expanding the rule might have on the Combined Pharmaceutical Budget (which funds all medicines for New Zealanders) and our ability to deliver the best health outcomes for New Zealand."
Consultation on Pharmac's review is open until 31 January 2023.