Advocacy

Neuroblastoma Australia raises funds for vital research and treatments, unites affected families and supporters in a common cause and compels policy makers to bring Neuroblastoma to the forefront of the national political agenda.  

At present, only 1.4% of Australian Government funding for cancer research goes to Neuroblastoma. Childhood cancer, more broadly, receives only 10% of government funding. Of that childhood cancer amount, funding specifically for Neuroblastoma research is just 16%. In 2022 the NHRMC invested $2.18 million in Neuroblastoma research, which compares to $141 million in adult cancer research.

Our current advocacy campaigns will benefit greatly from public support and participation. In order to amplify messages and make visible to those who have the power to make change, we are calling for your support.

1. Federal Budget and Roadmap Update - May 2026

Ahead of the May Federal Budget, Neuroblastoma Australia had hoped to see dedicated funding announced for CAR T-cell therapy. While this did not eventuate, there were several positive developments for childhood cancer research and advocacy.

Following the release of the National Childhood, Adolescent and Young Adult Cancer Roadmap, the Federal Government announced a new $50 million childhood cancer initiative, alongside additional investment in rare disease research through the Medical Research Future Fund (MRFF).

The Roadmap identifies three priority areas for action: supportive care, emerging technologies and therapies, and access to clinical trials. We are encouraged that these priorities align closely with the needs of children diagnosed with neuroblastoma.

Importantly, the Roadmap specifically identifies CAR T-cell therapy as a national priority and calls for a strengthened national approach to its delivery. It also acknowledges the inequities that currently exist in access to treatment across different states and territories.

While the Roadmap provides important policy direction, further work is needed to translate these priorities into funded programs and improved treatment access. Many of the proposed actions are expected to be implemented over the next two to five years, and we know that children facing neuroblastoma cannot always wait that long.

Neuroblastoma Australia will continue advocating for earlier access to CAR T-cell therapy, increased clinical trial opportunities and investment in emerging treatments. We will use the Roadmap as an important tool in our discussions with policymakers, funders and health systems as we push for faster progress for children and families affected by neuroblastoma.

Read the Roadmap here

2. DFMO Access

On Friday, April 12, 2024 we advised that Neuroblastoma Australia, together with the Australian and New Zealand Children’s Haematology and Oncology Group (ANZCHOG) and Australian paediatric oncologists, wrote to request that the federal government urgently consider providing interim funding for Australian children with high-risk neuroblastoma to access eflornithine, an approved US Federal Drug Administration (FDA) treatment.

You can read the full statement here: https://www.neuroblastoma.org.au/news/call-to-federal-government-for-equitable-access-to-dfmo

In response to the above request we were delighted that the Australian Federal Government allocated funding to support families with children diagnosed with neuroblastoma in accessing DFMO (difluoromethylornithine). The government’s funding aimed to reduce the financial burden on families, ensuring access to this emerging treatment as part of a broader strategy to improve survival rates and treatment options for children with neuroblastoma.

Following Minister Butler's announcement, pharmaceutical company, Norgine, agreed to create an Expanded Access Program (EAP) for the DFMO. 

Read our Media Release in response to the announcement: mediarelease_dfmointerimapproval.pdf

DFMO Approved for Use in Australia

In April 2025, Norgine received regulatory approval from the Therapeutic Goods Administration (TGA) to distribute DFMO (eflornithine) in Australia for the treatment of high-risk neuroblastoma. This makes Australia the first country outside the United States to approve the drug.

DFMO was approved by the U.S. Food and Drug Administration (FDA) in December 2023, following clinical trial results that demonstrated a 50% reduction in relapse rates for patients with high-risk neuroblastoma.

Prior to TGA approval, DFMO was available in Australia through interim Federal Government funding and, later, via an Expanded Access Program provided by the drug distributor. The new regulatory approval ensures continued and secure access to this treatment in Australia.

The interim funding was secured through the efforts of Neuroblastoma Australia, whose advocacy and collaboration played a key role in making the treatment available to families during the approval process.

Next Steps: DFMO Access via the PBS

While, DFMO is now available to families we now need to ensure that DFMO continues to be available and funded in the future.

The Pharmaceutical Benefits Advisory Committee (PBAC) is currently considering the application for DFMO’s inclusion in the Pharmaceutical Benefits Scheme (PBS),. If approved, DFMO will become part of standard frontline treatment for all children with high-risk neuroblastoma, ensuring secure and free access for families nationwide.

Media Releases

July 3, 2024

The following media release reinforced the plea to the Federal Government to fund access to DFMO treatment in Australia. Read below and via the following link:

030724_mediarelease-neuroblastomaaustraliacallsforurgentfundingforlifesavingdrugforchildren.pdf 

Media Coverage

You can find links to recent media coverage below:

ANCHOG Position Statement

Read ANCHOG's position statement on DFMO access here: ANCHOG position statement

3. Senate Inquiry 2023 - Equitable Access to Diagnosis and Treatment

On 14 June 2023, the Senate referred the following inquiry to the Senate Community Affairs Committee

Equitable access to diagnosis and treatment for individuals with rare and less common cancers, including neuroendocrine cancer.

You can find details here about this Inquiry.

The Inquiry will review the experiences of those seeking treatment for rare and less common cancers, including barriers to screening and diagnosis due to cost and geographic location, and adequacy of support services post diagnosis. The full terms of reference can be found here.

Neuroblastoma Australia Official Submission

Working with community advocates and experts with formal submission experience, Neuroblastoma Australia drafted a submission letter to reflect the views of the charity regarding treatment accessibility. 

If you are a parent, guardian or close relative of a child with neuroblastoma, we welcome you to read our letter as follows: Neuroblastoma Australia Submission to Senate 

Neuroblastoma Australia CEO, Lucy Jones' opening statement to the panel can be read here.

Submissions are now closed. We will provide relevant updates on the Senate's findings as they arise.