Young Queenstowner Meila Davis has been accepted into a clinical trial in the United States.
The 12-year-old was diagnosed last June 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’s been blocked access to it by Health New Zealand Te Whatu Ora (HNZ).
Meila’s mum, Kristin, says they don’t yet have information on when Meila will have to go to the University of North Carolina, or how much it will cost the family.
Aimed at children with osteosarcoma, it’s in its first stage of human trials.
It involves infusing modified immune system cells into Meila’s body, designed to target and destroy her cancerous cells.
Kristin says Meila is likely to have to travel to the US twice for the trial, at their own expense.
To help cover the costs, they’ve launched a Givealittle page — shorturl.at/Faju7
Meantime, in response to inquires from Mountain Scene, HNZ chief clinical officer Dr Richard Sullivan says he knows how devastating the situation is for Meila and her family, and HNZ is 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.
And while he knows HNZ’s decision not to provide experimental drugs to Meila in NZ isn’t the one her family was hoping for, her case has 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.’’
Meila’s mum, Kristin, launched a petition on May 19 — it was presented to Act leader David Seymour and Act’s health spokesman Todd Stephenson two days later by Meila’s grandmother, Sandy Gibbons, pleading for the Health Select Committee to urgently recommend a review of HNZ’s decision.
To date it has received 3500 signatures.
To sign the petition, visit shorturl.at/9Cweh
