Submission form for consultation on paediatric cancer treatments in New Zealand

Te Pātaka Whaioranga – Pharmac is exploring whether special measures are needed to access paediatric cancer treatments that aren’t on the Pharmaceutical Schedule and, if so, whether the current approach (rule 8.1b) is appropriate. To do this 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 support them.

The full discussion document and other resources

In addition to standard background information, we have provided focus questions to help shape your feedback. You don’t need to respond to all the questions – only the ones you want to. The final question is open for you to add anything that hasn’t been covered by the earlier questions.

Consultation closes at 9am, 27 March 2023.

Alternative formats

Microsoft Word form (Macros enabled) [DOCX, 48 KB]

PDF form [PDF, 116 KB]

Note: This page will not save the information you enter until you submit the form. If you navigate away from this page, you will lose the information you enter.

There is no limit to the text you can write in response to our questions.

Privacy

Your feedback may be shared

We will only use your information to inform our review of rule 8.1. Feedback we receive is, however, subject to the Official Information Act 1982 (OIA). Please be aware that we may need to share your feedback, including your identity, in response to an OIA request.

If you want any part of your feedback treated as confidential, you need to tell us which information and why. For example, would you like us to withhold your identity or a particular part of your submission because it is personal, confidential, commercially sensitive, or proprietary? If your request meets the Official Information Act criteria we won’t be required to disclose it.

Pharmac's privacy statement

Is there anything in your submission you would like us to consider withholding and why?

How well do we understand child cancer and the system of care?

Is our understanding of the overall health outcomes being achieved for people with paediatric cancers correct? If not, please provide any further information or context.

In what other clinical contexts is participation in clinical trials the ‘standard of care’?

To what extent is access to paediatric cancer clinical trials dependent on access to medicines through rule 8.1b?

How sensitive is this system of care to changes to rule 8.1b?

How effective is rule 8.1 in terms of achieving the best health outcomes?

To what extent are good health outcomes for children with cancer in New Zealand dependent on making paediatric cancer treatments available through rule 8.1b?

Is timely access to paediatric cancer treatments more important than timely access to other medicines or for other populations? If so, why?

Does the current policy support efficient and sustainable use of available resources?

Is our understanding of how rule 8.1 operates in practice correct? What else should we know?

How much increase in the use of rule 8.1b do you think will happen as a result of the growing range of new paediatric cancer treatments?

Do you see the costs of paediatric cancer treatments accessed through rule 8.1b increasing significantly in the foreseeable future?

How could we assess what value paediatric cancer treatments provide against other medicines that could be funded with the same money?

Does the current policy support equity?

What should Pharmac take into account when considering equity issues with respect to rule 8.1b of the Pharmaceutical Schedule?

Do you consider rule 8.1b to be inequitable from the perspective of other children or those with rare disorders? Why?

To what extent do the current policy settings, including rule 8.1b, contribute to the health outcomes achieved for tamariki Māori and Pacific children with cancer?

Do you consider rule 8.1b to be inequitable from the perspective of adolescent and young adults with cancer? Why?

How might we address equity and fairness concerns related to paediatric cancer medicines through rule 8.1b and access to medicines for other groups?

Other information or thoughts?

Is there anything else we need to know to inform the review? If so, please add your information or thoughts here.