What advocacy and research work does Child Cancer Foundation do?

Child Cancer Foundation's advocacy and research work sits alongside its direct family support. On its website, the organisation highlights three strands: a submission on the Disability Support Services Bill calling for stronger safeguards and equitable access to services; a Request for Proposals (RFP) seeking a health economics provider to measure the lifetime economic burden of childhood cancer in New Zealand; and its backing of expanded palliative care funding for families caring for children with life-limiting illness. Together these aim to improve childhood cancer care and survivorship, not just during treatment but across a lifetime.

Policy submissions and advocacy

Disability Support Services Bill

The Foundation has made a submission on the Disability Support Services Bill. Its stated position is to call for:

• Stronger safeguards
• Equitable access to services

This matters for families because children with cancer often need disability-related support, and the rules governing that support determine how easily families can actually access it. A submission is the formal channel for an organisation to put that position in front of decision-makers.

Palliative care funding

The site also notes that families caring for children with life-limiting illness are getting more support, describing a $15.5 million investment to expand palliative care nationwide. The Foundation frames this as more specialist support delivered at home. For families, the practical difference is where care happens — at home rather than only in hospital — and how much specialist help is available.

Fuel costs and access to treatment

One item on the site states plainly: "Every child with cancer must be able to reach treatment, every time, without delay," in the context of a fuel crisis increasing pressure on families in the Foundation's care. This is advocacy framed around a concrete barrier — transport cost — rather than a general appeal.

Research: measuring the lifetime economic burden

The Foundation has issued a Request for Proposals seeking an experienced health economics provider to help with what it calls a landmark New Zealand study. The purpose, as described, is to:

• Measure the lifetime economic burden of childhood cancer in New Zealand
• Strengthen future advocacy and survivorship care

This is the clearest example of research feeding advocacy. A health economics study produces cost figures — what childhood cancer costs families, the health system and the wider economy over a lifetime. Those figures then give the Foundation something concrete to cite when arguing for policy change or funding. The RFP is also a signal about method: the Foundation is contracting external expertise rather than running the analysis itself.

How the strands connect

The common thread is that each piece targets a system-level barrier rather than an individual family's immediate need. Direct support helps a family through treatment; this work tries to change the conditions that make treatment harder in the first place.

What this means if you're trying to understand or engage with it

• If you want the Foundation's formal positions, the submission on the Disability Support Services Bill is the item to look for — it is a public policy document rather than a general statement.
• If you work in health economics, the RFP is the entry point; it explicitly seeks an experienced provider, so it is a procurement process rather than an open call for comment.
• If you're tracking survivorship care, the health economics study is the item most directly tied to it, since the Foundation links the study to strengthening survivorship care as well as advocacy.
• If your interest is palliative care, note that the funding expansion is a government investment the Foundation supports, not a Foundation-run programme.

One limitation worth knowing: the site describes these initiatives at a summary level. The submission's full content, the RFP's scope and timeline, and the study's methodology are not set out in the material summarised here, so anyone needing those details should go to the source documents on the Foundation's site.