Media Release: Urgent Calls for Unspent Funds to be Reinvested into New Childhood Cancer Treatments

23 April 2025

Urgent Calls for Unspent Funds to be Reinvested into New Childhood Cancer Treatments

Neuroblastoma Australia is urgently calling on both the Albanese Government and the Coalition to commit $10 million to bring desperately needed new treatment options to Australia for children with high-risk neuroblastoma, particularly those who have suffered relapse.

Neuroblastoma Australia proposes this funding be obtained by reinvesting the unspent funds from the Commonwealth Budget allocated to the lifesaving drug, DFMO.

In July 2024, the Federal Government, following calls from Shadow Minister for Health Anne Ruston, the crossbench and numerous Government backbenchers, agreed to set aside $20 million over 2 years to fund access to the lifesaving drug, DFMO. This funding was confirmed in the December 2024 MYEFO Budget papers.

However, in October 2024, pharmaceutical company Norgine established an early access program to facilitate DFMO, taking on the cost of the drug.

With a significant majority of the $20 million likely to have been unspent, Neuroblastoma Australia, with input from the Australia and New Zealand Children’s Haematology/Oncology Group, is calling on the Federal Government and Opposition to commit to reinvesting any unspent funding to develop immunotherapy options in Australia.

Neuroblastoma Australia has submitted a proposal to the Government that $10 million be committed to developing new immunotherapy options to Australia, such as CART T-cell therapy, an emerging treatment for relapsed neuroblastoma.

Despite adult cancer patients being able to access CAR T-cell therapy trials here in Australia, access is unfortunately not available for pediatric solid tumours. It is currently costing families over $700,000 just to access a CAR T-cell trial overseas, not including international travel and accommodation.

Neuroblastoma is a rare form of cancer which mainly affects children aged between 0 and 5, with about 50 children diagnosed in Australia each year. It claims the lives of more children under 5 than any other cancer. For those with relapsed neuroblastoma, the survival rate is just 5-10%.

We thank the Government and Opposition for their bipartisan support for $20 million in funding for the life-saving neuroblastoma treatment, DFMO.

Said Lucy Jones, CEO of Neuroblastoma Australia

“Families of children with relapsed neuroblastoma are facing costs of hundreds of thousands of dollars to access CAR T-cell treatment overseas. Both Labour and the Coalition could help alleviate the pressure on these families by redirecting funding already in the Budget to access this promising treatment.” – Said Ms Jones

Given the private sector has stepped in to privately fund DFMO, we are calling on the Minister for Health to clarify how much was spent on funding DFMO and ensure the remaining unspent funds still contribute to treating high-risk neuroblastoma, particularly for children who have relapsed.

Ms Jones said

Neuroblastoma Australia’s proposal which was developed with support from ANZCHOG can be found here.

Lucy Jones, CEO of Neuroblastoma Australia is available for comment – Lucy.Jones@nb.org.au or 02 9387 4232

Read The Australian’s coverage of the story here