The parents of a 12-year-old girl dying of cancer are desperately searching for an oncologist willing to treat her with an experimental drug called EnGeneIC.
Meila Davis has terminal bone cancer, osteosarcoma. Chemotherapy treatments have failed to help, but the family has been recommended a new immunotherapy drug that's undergoing clinical trials in Australia.
Last week she had emergency surgery for a collapsed lung, something that could keep happening as her body struggles with the cancer.
Her mum, Kristin Davis, is hopeful that a new drug from EnGeneIC could save her life.
"If she doesn't get it I might not have my daughter anymore," Davis told Newshub.
But because the drug is still in the trial phase, it hasn't been approved as a medicine yet, so isn't available here. Christchurch Hospital looked at administering it on compassionate grounds, but decided not to.
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They declined our request for an interview, but Health New Zealand's chief clinical officer, Dr Richard Sullivan, said in a statement that in paediatric oncology, clinical decisions are made by the treating clinicians alongside patients and their whānau.
"We have investigated the option of this experimental therapy, exploring it with national and international colleagues, and the potential outcomes and impact for Meila if the treatment was provided," Dr Sullivan said.
He added that the proposed clinical trial for the use of this drug in osteosarcoma has not yet opened in Australia and the clinical trial in question is not proposed to be open for children.
"There is no safety data on the use of this drug in children, making a risk-benefit analysis impossible," he said.
Where a medication may be of benefit, but is not an established standard of care, the case is discussed at a paediatric cancer multidisciplinary meeting with representation from many specialties and disciplines.
"The consensus was not to offer the proposed therapy due to a lack of safety and efficacy data," Dr Sullivan said.
A decision that's left Meila's mum frustrated and disappointed.
"I don't think that's fair. There are two girls undergoing this treatment in Sydney currently and the data coming from them is showing safety," she said.
And data can be hard to collect when less than four percent of children with cancer have osteosarcoma.
"If you don't give these kids a chance to go on compassionate use then how are you going to get the data?" Davis asked.
Cancer campaigner Malcolm Mulholland agrees and believes some oncologists could be better advocates for their patients.
"What I would urge is they stop thinking about liability and the 'what ifs', and think about what might actually happen here if Meila gets the drug - it could mean she is alive for longer," Mulholland said.
Meila's current oral chemo treatment warns of deadly side effects - such as liver and bleeding problems.
But EnGeneIC co-founder Jennifer MacDiarmid said its immunotherapy drug is much safer as side effects are similar to a flu jab.
"Nobody loses their hair, they don't go home and throw up in a bucket for the week," MacDiarmid said.
EnGenelC's already created a personalised drug for Meila, using a liquid biopsy, and plans to fly a clinical team over for technical support to administer it to her.
"It's extremely safe, there is phase two efficacy data in other cancers, like end-stage pancreatic cancer. Our results in patients in Australia have been fantastic, and we've done a lot of smaller trials to test the safety," she said.
After Newshub's story about Meila last week, Medsafe met EnGeneIC to discuss her situation. The two groups are now looking at setting up a trial here.
"Medsafe has provided advice to the company about clinical trials process in New Zealand and is available to provide further support if the company wishes," Medsafe group manager Chris James said.
But that takes time that Meila simply doesn't have. However, Medsafe said she could access the drug if it's prescribed by a medical practitioner.
"The ultimate decision to prescribe a medicine falls with the prescribing clinician. Medical practitioners are expected to meet both their own professional practice and ethical standards, and ensure the Code of Health and Disability Services Consumer Rights are met," James said.
So the family's now urgently searching for someone willing to do so, to prolong their daughter's life.
"Please help, help us find a compassionate oncologist who will infuse and sign off on this drug for Meila. I will give up everything for her to have this opportunity, I would sacrifice myself if I could get it for her," Davis said.
