In October last year Neuroblastoma Australia made a submission to the Senate Inquiry into Equitable Access to Diagnosis and Treatment for Rare and Less Common Cancers, including neuroendocrine cancer.

The Senate invited Neuroblastoma Australia, along with other representatives from the rare and uncommon cancer community, to make a short 2-minute opening statement at its public hearing on Wednesday, January 31. 

Neuroblastoma Australia CEO, Lucy Jones, delivered a statement that summarised the charity's views and highlighted issues relevant to the inquiry. Lucy was joined by Julia Sammut, whose son Harry was diagnosed with neuroblastoma a month before his 9th birthday. In the afternoon session, Dr Kate Cantrell, delivered a powerful lived experience statement to the Committee. 

The Committee, including Senators Dave Sharma and Wendy Askew, listened to the statements and asked questions relating to diagnosis and treatment access.  

On Thursday, Feb 1, travelled to Melbourne to listen to the statements and submissions made to the Melbourne Hearing.  Lucy was joined by parents from the local neuroblastoma community. 

The Committee will write its report and make recommendations to the government and other relevant bodies.


Julia Sammut, Lucy Jones, and Kate Cantrell at the Sydney hearing

Overview From Lucy Jones

"On Wednesday Jan, 31, I spoke at the Senate Inquiry into Equitable Access to Diagnosis and Treatment for Rare and Less Common Cancers. 

It’s the first time I have had the opportunity to make a clear statement to the Australian Government about the state of childhood cancer research and what desperately needs to be done. And, it gave me the opportunity to cover the subject of equality, it’s more than clear that children are at a serious disadvantage to adults.

In fact you are at a serious disadvantage if you have a rare disease. It’s just worse if you are a child as there are far fewer options in most instances.

What’s needed :
  • More Research - kids' cancer is a low priority for the government (only 10% of total cancer research funding to the kids) and large pharmaceutical companies. While, occasionally, large pharmaceutical companies might provide drugs for free for clinical trials or compassionate use - there are relatively small numbers of children affected, meaning the ROI compared to the common adult cancers is low. In short, there's little commercial incentive for pharmaceuticals to invest in childhood cancer research and development. 

  • Drug Approvals - FDA in the US leads the way in approving new drugs.  Between 2012 and 2021, 390 drugs were approved for adult cancers, but just 34 were approved for use in childhood cancers. However, to get even these drugs approved in Australia is another story.  Approval can take over 18 months, and that’s if the pharmaceutical company wants to register their drug for childhood cancer use in the first place.

  • Clinical Trial Access - there are very few trials available to children with relapsed neuroblastoma (which happens in 50% of cases of aggressive neuroblastoma). As it’s a rare disease it’s extremely hard to get the numbers to run trials in Australia. So Australia must be able to take part in international clinical trials, and have a process which enables this, or fund access to overseas trials - currently this is not the case

  • 2 is the average age of diagnosis for Neuroblastoma - these children can’t speak for themselves.  It makes early diagnosis especially challenging as very young children can't communicate how they feel. 

Simply put, we need to do more for the kids! Use the hashtag2little and please speak up for them. Cancer research can’t be purely a matter of commercial scale where the numbers dictate who lives and who dies. Children and people with rare and uncommon cancers groups deserve a chance at life too!

In memory of my daughter Sienna taken by Neuroblastoma at 2 and a half (it’s important to remember the half as this was 20% of her whole life)."