Family fights to keep girl alive
Cancer patient Meila Davis is blissfully unaware about her prognosis.
The 12-year-old has highly aggressive osteosarcoma and may have 12 weeks, or fewer, to live.
Mum Kristin is fighting to get Meila access to a potentially life-prolonging experimental drug. But so far Health New Zealand has denied her request, considering the drug a safety risk.
Meila hasn’t been told just how bad things have become, and recently asked Kristin, “Why are you crying Mum? I’m going to be fine. I’m not going to die.”
Since her diagnosis last year, Meila and her family have been dealt blow after blow: lung metastasis, sepsis, cold sore viruses, a collapsed lung. Finally, doctors told Kristin there was nothing more they could do for her daughter.
But Kristin refused to give up and got a second opinion from an American paediatric oncologist, Peter Anderson. He recommended an experimental drug called the EnGeneIC Dream Vector (EDV), being used in Sydney, Australia, which had seen positive outcomes in pancreatic cancer patients.
Despite having an oncologist ready and willing to carry out Meila’s treatment in Australia and the drug’s supplier, EnGenIC, providing the drug to Meila for free, Sydney Children’s Hospital’s ethics committee declined Kristin’s request for treatment.
When she tried to get access to it in New Zealand she was declined again.
Dr Richard Sullivan, chief clinical officer of Health New Zealand, said they had investigated the use of EnGeneIC’s EDV drug for Meila, exploring it with “national and international colleagues”.
They had also run the drug through a Clinical Ethics Advisory Group, a group dedicated to providing opinions on ethical issues in complex cases such as Meila’s.
Their main concern was the lack of trials and data, and therefore it was a safety risk. The same concern was cited by Sydney Children’s Hospital. “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 not safety data on the use of this drug in children making a risk: benefit analysis impossible,” Sullivan said.
Medsafe group manager Chris James said in paediatric oncology cases like Meila’s, cases were reviewed by a “multidisciplinary team”, meaning decision-making on unapproved medicine was not up to a single clinician.
Only 4% of child cancer is diagnosed as osteosarcoma, and treatments for the disease are over 45 years old.
Kristin’s argument was that data was not available on EnGeneIC’s EDV because there had not been the chance. Given osteosarcoma drugs and care were “older than her”, something needed to change, she said. “If you do no trials, how do you get data?”
An inkling of hope
When Anderson, who specialises in osteosarcoma, got a call from Kristin, he knew Meila had run out of options.
He said New Zealand and Australia were good at “up front, standard of care therapy,” but were lacking when it came to implementing new treatments.
“Sometimes access to these things is nearly impossible, it all depends on the people involved more than the drug.”
I n November, Anderson was sent data from an EnGeneIC pancreatic cancer trial, which showed remarkable results in adults with final stage cancer. Meila Davis
The results from 17 adult pancreatic cancer patients showed 88% doubled their life expectancy, with one living for 19 months. The average life expectancy of the patients was 10 weeks.
“I think for osteosarcoma it’s a very reasonable thing to try … it’s a promising approach,” Anderson said.
The co-founder and chief executive of EnGeneIc, Jennifer MacDiarmid, said the drug had recently shown a “complete response” in a young cancer patient in America. Tumours in her pancreas, liver and lungs all disappeared.
EnGeneIC is currently treating two 21-year-olds with osteosarcoma, the drug has shown hopeful results. However, the company has not carried out any other trials for osteosarcoma, let alone in children as young as Meila.
“We’re not saying we are going to cure everything,” MacDiarmid said. “Medical jargon says ‘do no harm,’ we’re not going to do any and we just may make a difference.”
Meila is recovering from an operation at Christchurch Hospital where 1.7 litres of fluid was drained from her lung.
Her three brothers – aged 2, 4 and 6 – are gathered around her while her mum and dad figure out who to call next. “If we don’t have this treatment she has no other options,” Kristin said. “If in years to come this drug proves to be successful and we lose Meila, I don’t know how we will ever recover.”