Just over one year ago Minister Mark Butler made it possible for children with high risk Neuroblastoma cancer to get early access to a potentially life saving drug, eflornithine (DFMO) by providing $20 million to fund early access.
This access, which was provided prior to the drug being approved and PBS listed, was critical as high risk children simply don’t have the time to wait for regulatory approval processes which take 12 months plus.
Children with aggressive Neuroblastoma will often relapse within the first year of completing standard treatment and their chance of survival plummets to 10%. The drug had already been approved by the FDA based on data showing that it reduced the risk of relapse by a massive 50% … so early access simply made sense.
Today eflornithine (DFMO), brand name IWILFIN was officially listed on the PBS.
It’s the last step in a 15 month journey for Neuroblastoma Australia which showed that sometimes unprecedented steps are needed to help childhood cancers and we hope this flexible and compassionate approach grows in the future.
Huge thanks to everyone who has helped achieve this result – all the families who stepped forward, the Federal Ministers and MPs, the media and companies who provided pro bono support and of course Norgine which also has supported early access.
Looking forward to more results and more collaboration in the future to ensure the kids get the chance they deserve.
Lucy Jones, CEO, Neuroblastoma Australia
![cropped-23[1]](https://staging.neuroblastoma.org.au/wp-content/uploads/2025/08/cropped-231-768x213.jpg)
