Our Impact 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. Media Contact For all media enquires relating to the current request for DFMO funding from the Federal Government, please contact: N: Andrew Carswell T: +61 418 505 376 Request to Federal Government to Fund Access to DFMO 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, have written to request that the federal government urgently consider providing interim funding for Australian children with high-risk neuroblastoma to access eflornithine, a recently 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 You can help families affected by Neuroblastoma by sending an email to Health Minister Mark Butler, asking the Federal Government to provide one-off funding to make DFMO available in Australia. A draft letter is available here. Please feel free to personalise your letter as much as you wish, especially if you have a personal connection to neuroblastoma. If you have any questions or queries about the letter, please contact Neuroblastoma Australia CEO, Lucy Jones: [email protected] Thank you for your support. Latest Media Release - July 3, 2024 The following media release reinforces 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 RELEASE Neuroblastoma Australia calls on the Federal Government to Fund Life-Saving Drug for Children Neuroblastoma is one of the rarest and deadliest childhood cancers. While only 7% of Australian kids diagnosed with cancer have neuroblastoma, it is the cause of 15% of all childhood cancer deaths. Survival rates are low, at around 50% for aggressive neuroblastoma. For those that suffer a relapse (about 50% of children following treatment), the survival rate is closer to 5%. But there is hope. A new drug, DFMO, has recently been approved for use in the United States which can dramatically cut the rate of relapse by as much as half. It’s a simple tablet medication which gives children a fighting chance of beating this insidious disease. Right now, the only way Australian families can access DFMO is to make multiple trips to the United States, making the agonising choice to put severely immunocompromised children at risk of infection, which could prove life-threatening. The cost of travelling overseas and funding medical costs means families are being forced to spend their precious time fundraising hundreds of thousands of dollars to access this potentially lifesaving drug. That’s why Neuroblastoma Australia, on behalf of these families, is asking the Federal Government to provide one-off interim funding of between $5 million and $15 million to bring DFMO to Australia. Neuroblastoma Australia has spent the last three months desperately appealing to the Federal Government to provide this funding which would provide immediate access to DFMO here in Australia. If families are forced to wait for regulatory approvals through the TGA and PBAC, we estimate as many as 30 children will miss out on accessing DFMO, and some children will relapse unnecessarily. While DFMO is undergoing regulatory assessment in Australia, interim funding will give families the certainty they need, and ensure equitable access to this potentially life-saving drug, so that no child’s life is determined by paperwork or postcodes. Wednesday 3 July 2024 Media Coverage We've recently had significant media interest in our DFMO access campaign with a number of stories running on children impacted by the current situation, and the families, organisations and oncologists all urging Health Minister Mark Butler to approve interim funding for access to DFMO whilst it goes through the 12 month regulatory approval pathway. You can find links to recent media coverage below. If you're happy to share any of them to support our cause, we would be very grateful: Sky News, Interview with Tom Connell, 26 June 2024 – https://www.facebook.com/share/r/kmunQfi4nE7AHJxC/?mibextid=WC7FNe A Current Affair, Story on Tyler, Alix and Harris, 27 June 2024 - https://www.facebook.com/share/v/N7jbRjcCeVRfSJwt/?mibextid=WC7FNe ABC (digital, radio and TV). Pleas for federal funding to help kids like Luna access a life-saving treatment overseas, 28 June 2024 - https://www.abc.net.au/news/2024-06-28/desperate-families-seeking-help-to-access-rare-cancer-treatment/103991314 The Daily Telegraph, Facts and Faces of Neuroblastoma Children, 29 June 2024 - https://edition.pagesuite.com/popovers/dynamic_article_popover.aspx?artguid=f3cc0782-205c-49a2-901c-1d2ae1b8e7bc We look forward to securing access so that these Aussie children have the very best chance of survival. Previous Activity 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. Manage Cookie Preferences