Paediatric cancer funding (Rule 8.1b)

Rule 8.1b gives children with cancer, treated in a paediatric setting, funded access to any medicine that could treat their cancer.

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Funding for children with cancer remains the same

Following public consultation, Pharmac – Te Pātaka Whaioranga is keeping Rule 8.1b. The rule allows for medicines to treat paediatric cancer in children with cancer to be automatically funded without Pharmac assessment.

We’ve heard very clearly from clinicians and the whānau of child and adolescent cancer patients that Rule 8.1b has a real impact on treatment and health outcomes.

Media release about our decision

What does this decision mean?

All medicines currently being funded for child cancer patients under Rule 8.1b continue to be funded. The Rule 8.1b exception continues to apply to new paediatric cancer medicines where clinicians decide that these are the best option for their patients and the medicines are not already funded.

We'll be working closely with clinicians

A lot of emerging therapies have the potential to be expensive and we will work with clinicians on ways to manage these to ensure financial sustainability. In our experience, clinicians are very responsible stewards and the feedback we’ve received indicates they are keen to work with us to make improvements in a number of areas.

You spoke: We listened

Between November 2022 and March 2023 we publicly released a detailed discussion paper and invited submissions in response to 16 questions posed on our review of Rule 8.1b.

We received 86 feedback submissions from:

  • individuals
  • whānau with children or young people who are having or have had cancer treatment
  • clinicians and clinical networks
  • patient advocacy groups
  • a range of other health-related organisations. 

Families described their experiences of having a child with cancer and, in some cases, dying from cancer. They spoke about the difference that Rule 8.1b had made to their child’s treatment. The overwhelming message from clinicians and clinical bodies was that Rule 8.1b was an essential part of the clinical pathway for treating child cancer.

Next steps

Now that Pharmac has decided to keep Rule 8.1b, the next steps involve engaging with clinicians and patient groups to improve the way the Rule works. Specifically, we will look to:

  • improve governance and oversight of the decisions made under Rule 8.1b
  • work with clinicians to design a way to manage new and emerging therapies to ensure financial sustainability
  • consider options in our current budget to improve access to treatment for adolescent and young adults with a paediatric-type cancer regardless of where they are treated.

We’ve had really good feedback as a result of the review to date and there is clearly further work we need to do – for instance, working to improve access to medicines for adolescents and young adults. 

Pharmac will present options for improvements to Rule 8.1b at a Board meeting later in 2024.

Questions and answers about rule 8.1b and the review