Analysis of public submissions about the funding of paediatric cancer treatment

PHARMAC | Te Pātaka Whaioranga2023 - 2024

How do people currently experience the system for funding paediatric cancer medicines, and what would the implications of changes be on children and their whānau?

FrankAdvice analysed the submissions received as part of Pharmac’s public consultation about the funding of paediatric cancer treatment (rule 8.1b of the Pharmaceutical Schedule), specifically whether any changes should be made. The rule gives doctors funded access to medicines to treat paediatric cancer that have not been through the regular Pharmac assessment process.

As well as technical skills we knew we had to have a sensitive approach to analysing submissions from children, adolescents and young adults, and their families and whānau affected by cancer. Our team has expertise in children’s rights and engagement with children which we also brought to the analysis process, selecting a team with a spread of technical and other skills.

FrankAdvice produced a public-facing document that summarised what submitters said. The report included a separate synthesis of the views of whānau Māori to allow Pharmac to complete Te Tiriti based analysis of the issues, acknowledged the significant emotional labour that went into making submissions and preserved the privacy of submitters. We completed further work on the report following feedback from submitters to ensure their views were accurately represented and privacy fully preserved.

This report has been published on Pharmac’s website alongside its decision to preserve rule 8.1b and complete further work on governing the use of the rule, managing new therapies and improving access to cancer treatment for adolescents and young people.

FrankAdvice also provided internal advice for Pharmac’s policy team about the implications of the submissions, and potential next steps for the review.