Less than 6 per cent of government cancer research funding is given to children’s cancer research – a figure Neuroblastoma Australia president Lucy Jones says is unacceptable.
And she knows how dire the consequences are.
“We ran out of time 15 years ago for our daughter Sienna … we couldn’t get access to one of the most promising drugs at that time and had to watch Sienna’s cancer grow exponentially,” she says.
“It’s such a brutal and devastating disease. Her main tumour tripled in size in 10 days.
“It’s just simply not fair on the kids when so much more is possible.”
Jones has called on the government to set up a taskforce for childhood cancers that can create an action plan – investing in child-focused research and improving regulatory processes to truly accommodate rare diseases.
“All childhood cancers are considered rare and as a result do not attract research funding from profit-focused pharmaceutical companies due to the lack of return,” Jones says.
“The government invests relatively little in childhood cancer research funding … this means the amount of research and pace of progress in the area of childhood cancer lags behind adult cancers, with far fewer drugs and therapies being developed.
“A total of 390 drugs were approved by FDA between 2012 and 2021 for adult cancer but only 34 were approved for use in childhood cancers.
“This means survival rates for some of the aggressive rare childhood cancers have not progressed as they should have and could have.”
About 100 people aged under 15 die from cancer each year in Australia. Looking specifically at neuroblastoma, there are 50 children diagnosed each year and about 10 will die. In the years since Neuroblastoma Australia was founded in 2010, the charity has contributed more than $2m to research, but more funds are needed to pinpoint better and safer treatments for affected children.
“Too little is being done too late and we are losing too many children,” Jones says.
Neuroblastoma Australia’s proposal is for a $200m investment from the federal government over four years. That urgent funding into childhood cancer would be part of a key investment strategy to accelerate research and improve survival rates, with $50m each year split between research and clinical trials.
She says it currently takes too long to approve drugs for Australian children which have been approved elsewhere, and local sufferers need access more quickly and ways of doing this need to be assessed. Funding of about $15m is needed for the drug DFMO which is not yet available in Australia, but has been shown around the world to reduce the risk of relapse by 50 per cent, saving lives.
“That’s why parents will fundraise hundreds of thousands of dollars and travel to the other side of the world to access it if it might save their child’s life,” Jones says.
“We don’t think this is fair – especially as the child has had to endure 18 months of some the most difficult treatments and is immuno-compromised and – with government funding – the drug could be accessed at home in Australia whilst it’s going through the standard regulatory approval processes.”
In December, Neuroblastoma Australia announced two groundbreaking research projects to receive funds from the organisation. One of the projects is a world-first and will use an existing drug to treat a group of high-risk children with an extremely rare TERT oncogene rearrangement in their neuroblastoma, who currently have a less than 40 per cent chance of survival. This research will be undertaken by Associate Professor Tao Liu at the Children’s Cancer Institute.
“This proposal was seen as the most exciting of all the projects submitted to be reviewed by our expert panel as it currently addresses an area where there is very little progress,” Jones says.
One of the most heartbreaking outcomes for neuroblastoma babies is after having been subjected to very toxic and relentless treatments over many months, they still relapse and lose their battle within the first few years of diagnosis.
neuroblastoma.org.au
OTHER CHILDREN
WHO NEED YOUR HELP
QLD
Luna Kemmery, 2
From birth, Luna has spent more than her fair share of time in hospital. She should not be living her childhood and growing up inside white and clinical walls. She should be outside. In fresh air, playing in the sun, swimming, feeling the sand between her toes, exploring the world and enjoying herself like any other two-year-old. In July last year, her parents heard six words no one ever wants to hear: “I’m sorry, your child has cancer”. They have just started fundraising for DFMO and have $14,000 of their $500,000 goal.
treat.rarecancers.org.au/campaign/2155/helping-luna-kemmery
NSW
Harry Sammut, 10
Harry was diagnosed with widespread stage 4 neuroblastoma in 2022. His family and friends have raised $53,000 of a $200,000 target and Harry is currently overseas in the US on a drug trial.
gofundme.com/f/heeb2r-helping-harry
NSW
Zai Abdollahi, 9
In March last year, Zai was diagnosed with stage 4 high-risk neuroblastoma. In the past 12 months, he has had eight rounds of high-dose chemotherapy, two eight-hour surgeries to remove the primary tumour and another mass from his chest, a bone-marrow transplant, 12 rounds of radiation, and is now going through six months of immunotherapies. Zai’s family are fundraising for DFMO and will need to start the trial soon. They have a $200,000 goal.
treat.rarecancers.org.au/campaign/2157/helping-zai-abdollahi
SA
Xavier Pudovkin, 6
Xavier was diagnosed with stage 4 high risk neuroblastoma at the end of March 2021, when he was just 3½ years old. His family are fundraising for a MSK vaccine trial in the US – they are on trial already but still fundraising with the goal of reaching $500,000. They have raised $263,000 so far.