Reducing access to cancer medicine for children to improve equity unacceptable, says Rare Disorders NZ

Rare Disorders NZ is deeply concerned that Pharmac’s announced review of rule 8.1b of the Pharmaceutical Schedule may lead to reduced access to medicines for children with cancer.

Currently rule 8.1b ensures all medicines to treat children with cancer in New Zealand is funded without needing an evaluation by Pharmac first. This is an exception to the usual funding process for medicines in New Zealand, and is part of why New Zealand currently provides among the best and most equitable child oncology services in the world.

Pharmac is reviewing rule 8.1b of the Pharmaceutical Schedule due to concerns around the increasing costs of new medicines, and that other groups, such as children with rare disorders, do not have the same funding access to medicines.

Rare Disorders NZ considers any moves to limit access to medicines in an attempt to improve equity unacceptable and highly unethical.

“Pharmac should be prioritising how to increase access to effective medicines for more people, not reducing access. It is unthinkable that the solution to making medicine access more equitable would be to take away a rule that has given children with cancer the best chances of survival. This review must only be used as an opportunity for Pharmac to look at how this model can be expanded to other conditions to fulfill Pharmac’s expectations under Pae Ora to do more to achieve health equity,” says Rare Disorders NZ Chief Executive Michelle Arrowsmith.

Achieving health equity is the cornerstone of the Pae Ora legislation, and earlier this year the independent Pharmac Review called for equity considerations to be at the forefront of every decision at Pharmac.

Pharmac is already performing poorly on the world stage when it comes to funding medicines, with New Zealand ranking last out of 20 comparable OECD countries for publicly funded modern medicines. Pharmac’s spending on medicines for rare disorders is less than 1% of the pharmaceutical budget. Around half of all those affected by a rare disorder are children.

“With the Government’s focus on improving equitable health outcomes, and Prime Minister Ardern wanting New Zealand to be the best place in the world to be a child, we expect the Government would only accept solutions that would enable more sick children access to life-saving medicines. This will require an increase to Pharmac’s budget and they should be planning for that.”

Rare Disorders NZ will be making a submission to the consultation calling for the rule to be expanded to other conditions, and encourages as many others to do so as well by 5pm on Tuesday 31 January 2023.