The 12-year-old was diagnosed a year ago with terminal osteosarcoma, a form of bone cancer.
Traditional treatments so far have been unsuccessful, and while she has been recommended for an experimental drug, EnGeneIC Dream Vector (EDV), she has been blocked from accessing it by Health New Zealand Te Whatu Ora (HNZ).
Meila’s mum, Kristin Davis, said they did not know when Meila would have to go to the University of North Carolina, or how much it would cost the family.
Aimed at children with osteosarcoma, the drug is in its first stage of human trials.
It involves infusing modified immune system cells into a patient’s body, designed to target and destroy cancerous cells.
Mrs Davis said Meila would likely have to travel to the US twice for the trial, at her own expense.
To help cover the costs, they have launched a Givealittle page.
HNZ chief clinical officer Dr Richard Sullivan said he knew how devastating the situation was for Meila and her family, and HNZ was continuing to provide ongoing medical care and working with them to explore the possibility of enrolment in international clinical trials, such as the one in the US.
While he knew HNZ’s decision not to provide experimental drugs to Meila in New Zealand was not the one her family had been hoping for, her case had been given "very full consideration by several clinical experts".
"The consensus is that GF-EDV should not be delivered to Meila since it is an experimental medicine with no open clinical trial, no safety data in children and no efficacy data in the treatment of osteosarcoma."
Mrs Davis launched a petition on May 19 — it was presented to Act New Zealand leader David Seymour and Act’s health spokesman two days later by Meila’s grandmother, Sandy Gibbons, and pleads for the health select committee to urgently recommend a review of HNZ’s decision.
To date it has received almost 3500 signatures.
By Olivia Judd
