Our Impact
The impact ofadvocacy
Advocacy can help create real change for children with neuroblastoma.
When families, clinicians, researchers, supporters, government and industry work together, barriers can shift — and children can gain access to treatments that may otherwise remain out of reach. Our advocacy focuses on improving treatment access, increasing national awareness, and ensuring the voices of families affected by neuroblastoma are heard by decision-makers.
Milestones
What advocacy has helped achieve
Progress in childhood cancer treatment access takes collaboration, persistence and the courage of families willing to share their experiences. These milestones show how advocacy has helped improve access to treatments — and bring greater attention to the urgent needs of children with neuroblastoma.
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2023
Giving families a voice in national policy
Neuroblastoma Australia made an official submission to the Senate Inquiry into equitable access to diagnosis and treatment for rare and less common cancers. CEO Lucy Jones also provided an opening statement to the panel.
This advocacy helped ensure the experiences of children and families affected by neuroblastoma were represented in national discussions about treatment access, cost, diagnosis and support.
Read why advocacy matters -
2024
Helping secure urgent interim access to DFMO
Neuroblastoma Australia, together with the Australian and New Zealand Children's Haematology and Oncology Group and Australian paediatric oncologists, called on the Federal Government to provide urgent interim funding for children with high-risk neuroblastoma to access DFMO / eflornithine.
Children with high-risk neuroblastoma often cannot afford to wait for long regulatory and funding processes. The Federal Government later provided funding to support early access, helping reduce the financial burden on families while the treatment moved through approval pathways.
Read the DFMO updates -
16 April 2025
DFMO approved for use in Australia
Norgine received regulatory approval from the Therapeutic Goods Administration to distribute DFMO / eflornithine in Australia for high-risk neuroblastoma — making Australia the first country outside the United States to approve the treatment.
Before this approval, DFMO had been available through interim Federal Government funding and later through an Expanded Access Program provided by the drug distributor. The TGA approval helped secure continued access for Australian families.
Read the DFMO updates -
29 April 2025
DFMO approved for PBS listing
DFMO received a positive recommendation from the Pharmaceutical Benefits Advisory Committee for listing on the Pharmaceutical Benefits Scheme — an important step towards ensuring children diagnosed with high-risk neuroblastoma could access the treatment locally and at minimal cost to families.
Before this progress, many families faced the enormous emotional and financial burden of fundraising tens of thousands of dollars to travel overseas to access DFMO.
Read the PBS approval update -
June 2025
Dinutuximab beta recommended for public funding
Following consideration earlier in the year, the Australian Medical Services Advisory Committee (MSAC) recommended the public funding and approval of dinutuximab beta (marketed as Qarziba by Recordati).
This expanded access provides funding for children with primary relapsed or refractory high-risk neuroblastoma when used in combination with chemotherapy. Families, clinicians and supporters had contributed to the public consultation process, sharing personal experiences and helping demonstrate the real-world need. Full details are available in the MSAC Public Summary Document.
Read the Dinutuximab beta update -
1 August 2025
DFMO PBS listing confirmed
DFMO / eflornithine was officially listed on the PBS, marking the final step in a 15-month advocacy journey. This followed early access made possible through Federal Government funding and the continued efforts of families, clinicians, researchers, supporters, political representatives, media and industry partners.
It is a powerful example of what can happen when urgent need is met with collaboration, flexibility and compassion.
Read the PBS listing confirmation - Current campaign · CAR T cell therapy
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January 2026
Pre-budget submission for CAR T cell therapy
Neuroblastoma Australia made a pre-budget submission to the Federal Government, calling for funding to support access to CAR T cell therapy for Australian children with neuroblastoma.
CAR T cell therapy is a promising new treatment with the potential to help children with high-risk and relapsed neuroblastoma. The submission is part of our ongoing campaign to ensure children in Australia have access to this potentially life-changing treatment.
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April 2026
Postcard campaign and meeting with Minister Butler
Following a postcard campaign in which hundreds of postcards featuring children with neuroblastoma were sent to Minister Butler, Neuroblastoma Australia met directly with the Minister to discuss CAR T cell therapy access.
The meeting was an important opportunity to share families' lived experiences and the urgent need for access to this potentially life-changing treatment for children with relapsed or high-risk neuroblastoma.
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22 May 2026
$50 million announced for childhood cancer
The Federal Government announced $50 million in funding for childhood cancer — a welcome step for Australian children and families affected by childhood cancers.
The specific decision on CAR T cell therapy for neuroblastoma is still pending. We continue to advocate for this potentially life-changing treatment to be made accessible to Australian families.
For families
Why this progress matters
For families facing neuroblastoma, access matters.
When treatments are unavailable, unfunded or only accessible overseas, families can be forced to carry an overwhelming emotional and financial burden at an already devastating time.
Advocacy can help change this. It can support earlier access, reduce financial pressure, and help ensure children with neuroblastoma are not left behind simply because their cancer is rare.
Looking ahead
Our work continues
These milestones show what is possible — but there is still much more to do. Neuroblastoma Australia will continue advocating for better, safer and kinder treatments, fairer access to promising therapies, and stronger recognition of the needs of children and families affected by neuroblastoma.