Pharmac Petition: Fear tamariki with cancer won’t have access to lifesaving medicines

Debbie Ngarewa-Packer, co-leader of Te Pati Maori, will receive a petition on Wednesday signed by 10,000. Photo / Michael Neilson

A petition, that will be delivered tomorrow to Parliament, on behalf of Tamariki with cancer, chronic illnesses and rare disorders is calling on Pharmac to “fund lifesaving medicines for all New Zealand children”.

The Patient Voice Aotearoa (PVA) led petition will be presented to Te Pāti Māori co-leader Debbie Ngarewa-Packer at 12.30pm on Wednesday.

PVA spokesperson Dr Malcolm Mulholland says Te Pāti Māori has agreed to advocate for Tamariki on this matter and that the ultimate aim of the petition is to encourage the Government to exercise leadership and intervene in the interests of Tamariki and whānau.

The petition followed Pharmac’s decision last month to review the way children’s cancer medicines are funded due to concerns about “fairness” and the “growing cost” of new paediatric cancer medicines.

“Our biggest fear is that children won’t be able to access all the medicines they need to treat cancer in the future,” Dr Mulholland told Te Ao.

Malcolm Mulholland, chair of Patient Voice Aotearoa which has been advocating for reform of Pharmac. Photo / Mike Scott

Pharmac, for their part, have not made any changes, or ruled anything in or out at this stage.

“The agency is currently consulting on a change to rule 8.1b of the Pharmaceutical Schedule, which could limit access to life saving, changing and extending medicines for Kiwi kids with cancer,” the Givealittle petition created by Dr Mulholland says.

“Pharmac are doing this to ‘even the playing field’ between Kiwi kids with cancer and children with other illnesses.

“Until now, children with cancer have been given access to any medicine needed for treatment - regardless of whether it is publicly funded.”

The petition argues that “New Zealand sits at the bottom of the developed world for access to modern medicines” and that many children with chronic, rare and acute conditions have suffered as a consequence.

PVA is, therefore, pushing Pharmac to ensure all tamariki will receive lifesaving medicines.

“Instead of taking medicines away from children with cancer, we want Pharmac to extend rule 8.1b to all New Zealand children living with illness.

“We want all New Zealand children to enjoy the best health outcomes possible and for our country to truly be the greatest place in the world to raise a child,” the petition says.

Pharmac CEO Sarah Fitt. Photo / Supplied

In a statement, Pharmac chief executive Sarah Fitt told Te Ao the agency is ‘not ruling anything in or out’ at this stage.

“In November, Pharmac released a discussion document seeking feedback on the unique funding exception for children with cancer – rule 8.1b of the Pharmaceutical Schedule.

“The document highlights that 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,” said Fitt.

“The discussion document points out that we are seeking feedback on whether there are other areas of health that may use or 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 the review is open until 31 January 2023. The agency is encouraging anyone with an interest in paediatric cancer treatments or the petition to read the discussion paper and make a formal submission to Pharmac.

“We will need to process all of the feedback on the discussion paper and will then consult on any proposed options before considering any changes. This could take some time, but we intend to publish a summary of submissions in early 2023,” said Fitt.

The petition has passed its original goal of 7500 signatures and now has a new target of 10,000.

Dr Mulholland says PVA is clear on their desired outcome for tamariki and whānau.

“The outcome we want is for the government to intervene and show some leadership and extend rule 8.1b for all children who need medicines regardless of their disease.”