A Telethon Kids Institute researcher has called on the state government to establish and fund a cancer agency to help stimulate research.
Co-head of the institute’s brain tumour research Raelene Endersby said Western Australia lacked the amount of cancer advocacy the eastern states had.
“A lot of the states have dedicated government cancer funding streams, whereas we don’t have that here in WA,” she said.
“If we want to benefit kids locally, then I think that’s the way to go to concentrate efforts.”
Dr Endersby’s brain cancer research lab was established at the Telethon Kids Institute in 2011 and relies on government grants and charities to fund research.
“They’re nationally competitive grants so we submit grants and you’re competing with everybody in Australia for a limited pot of funding,” Dr Endersby said.
“A lot of the work we do is supported by charities and we wouldn’t be able to do the work we do without that additional support because the government funding is just not enough.”
A spokeswoman for the Minister for Health Roger Cook said the development of a cancer research plan would drive WA medical research and innovation.
“The 10-year cancer research plan, through consultation with the health and medical research sector, will determine WA’s cancer research priorities for the next 10 years and the subsequent actions required to achieve these,” the spokeswoman said.
“This may or may not include a dedicated cancer agency.”
Dr Endersby said funding was vital for brain cancer research as it was the second most common cancer in children behind leukemia.
“Around 600 kids are diagnosed with a brain tumour each year in Australia, which equates to 20 to 30 a year in WA,” she said.
“It doesn’t seem like a big number but it’s the most lethal disease that affects children.
“Kids will die from it, even with all the best treatments.”
Abigail Fitzgerald was four when she was diagnosed with a medulloblastoma tumour in October 2013.
Her mother Vicki said Abigail had a CT scan after frequent headaches and morning vomiting.
Ms Fitzgerald remembered the moment the neurosurgeon told her Abigail’s CT scan had found something in her brain.
“I couldn’t breathe and I just closed my eyes and asked if she was going to die and they told me they don’t know,” she said.
“We were told to kiss our daughter goodbye because there was a chance she wouldn’t wake up from the operation.
“They said the tumour was quite aggressive and Abi had until Christmas, so if they hadn’t caught it when they did, we would have had six to eight weeks left.”
Abigail’s continued treatment has had a lasting impact.
“She’s got permanent hair loss, double vision, severe loss of hearing and taste. She can’t consciously swallow her food anymore, her thyroid was shriveled by the radiation, her pituitary gland was fried, her spine is compacted so she will never grow to the height she was supposed to and she has suffered neurocognitive defects,” Ms Fitzgerald said.
Despite these side effects, her mother said the treatment was worth it.
Dr Endersby said it was a critical balance of curing as much as you could while understanding it was not curable without other costs.
The researcher’s lab is focused on untested effective new drugs.
“One of the challenges we have with a rare cancer like brain cancer is that pharmaceutical companies don’t see any benefit in looking to see if their drugs might work in kids as there is no financial incentive for them,” Dr Endersby said.
Ms Fitzgerald said she was infuriated with this behaviour from companies.
Abigail recently turned nine, an age she never thought she’d see her daughter reach.
“We were planning her last birthday, we thought this was it,” Ms Fitzgerald said.
“I don’t feel safe in assuming there will be a party next year.”