Today, on Rare Cancers Day, the Coalition is calling on the Albanese Labor Government to consider supporting patients to access eflornithine (DFMO) for Australian children with high-risk neuroblastoma.
Neuroblastoma is extremely rare.
This aggressive childhood cancer occurs in young children most commonly between the ages of 0-5 years.
Tragically, only 50% of children diagnosed with stage four neuroblastoma will survive, and this devastating survival rate has not improved in more than fifteen years.
Unlike the advancements seen in high-incidence cancers, survival rates across all rare cancers have seen little improvement, underscoring the need for continued advocacy and research.
Access to DFMO is one of the most important needs for families of all children currently undergoing high-risk neuroblastoma treatment in Australia.
DFMO is neither currently registered nor funded outside of North America.
However, the DFMO data is well known to Australian paediatric oncologists, patient advocates, patients, and their families.
As the Coalition strongly pursued in Senate Estimates last month, it is our hope that the Government will support these families with accessing this lifesaving medication, until DFMO is finally able to be listed on the PBS.
On Rare Cancers Day, we extend our heartfelt gratitude to the advocates, caregivers, researchers, and healthcare professionals dedicated to improving the lives of those affected by rare cancers.
In Australia, more than 40,000 people are diagnosed each year with a rare or less common form of cancer.
Today, the Government can support Australians effected by rare cancers by recognising the importance of DFMO for children with neuroblastoma and their families.