The parents of a 12-year-old girl with terminal cancer are begging the government to allow her to receive an experimental treatment in New Zealand.
Meila Davis is too unwell to travel to Australia where she could access a trial of the drug that might prolong her life.
Once a normal happy healthy kid, the 12-year-old is now fighting for her life in Christchurch Hospital while her mother, Kristin, fights for her to get a new immunotherapy treatment that's undergoing clinical trials.
"Everything was an experiment at one point and this is her only opportunity to survive," Kristin said.
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Meila was diagnosed with the bone cancer osteosarcoma, in June 2023.
It was cut out of her leg, but had already spread to her lungs.
Seven different chemotherapy treatments failed and she's just undergone emergency surgery to drain a collapsed lung.
"She's so brave and strong," Kristin said.
American oncologist Dr Anderson from Cleveland Clinic has suggested the new immunotherapy drug from EnGeneIC for Meila. An Australian children's oncologist has agreed to treat her under compassionate grounds, but is waiting for ethical approval from the hospital who initially declined it, but is now under review.
However, because it's in the early stages of clinical trials, it hasn't been approved as a medicine and isn't available in New Zealand.
"If we don't do that we don't have anything else. If it works then we have our daughter," Kristin said.
Medsafe told Newshub the drug company hasn't shown interest in running trials here - but it is open to hearing from them.
"Medsafe has an efficient regulatory framework for clinical trials and would consider expediting its process if the company chooses to extend their trial to New Zealand. This is the company's decision, however Medsafe is available to talk to the company if they have questions.
"There may also be requirements from EPA, and ethical considerations, depending on the type of medicine," Medsafe said.
Prescribing clinicians can, at their discretion, prescribe unapproved medicines for a patient under their care depending on individual circumstances.
But Meila's oncologist has recommended she seeks EnGeneIC from Australia.
"She would need to have the first one-two cycles of treatment in Australia and have never given any indication that we would consider delivery of what is an experimental medication to Meila if she had not had it delivered elsewhere," the oncologist said in an email to Meila's parents.
An ethics committee at Sydney Children's Hospital is currently considering treating Meila with EnGeneIC, but she's now too sick to travel.
So Kristin is pleading with New Zealand's health authorities to find a solution so her daughter can be treated here as she's now at death's door.
"Just lift the red tape, you're killing these kids and they're not having a chance," she said.
Health Minister Dr Shane Reti said he's working hard to improve access to all medicines, including cancer drugs, and is taking advice on what's needed in the cancer diagnosis and treatment space.
However, the Cancer Society believes New Zealand does have the capability to trial new drugs - but said there is a lack of government support.
Medical director Dr George Laking wants to see that change.
"They're totally doable but all you have to have, is ultimately, the political will power to invest in that area," he said.
Even though New Zealand has the brainpower and skills to take on more drug trials, he said it needs more resources.
"That means having the right supervision, the right tests, the right oversights, and the right guarantees about the quality of the medicine in the country."
Dr Laking is grateful to families like the Davis' who are willing to take part in drug trials.
"The only way we've ever been able to find out what treatments work, especially in children, is through research," he said.
