9th October

Neuroblastoma Australia thanks Norgine for its decision to create an Expanded Access Program (EAP) for the groundbreaking neuroblastoma drug, DFMO. This decision follows Minister for Health Mark Butler's creation of a landmark bridging arrangement to secure immediate access in July 2024. Since this announcement, numerous children prescribed DFMO in Australia have been able to access this vital drug for free, without having to undertake risky international travel.

On behalf of the families we represent, Neuroblastoma Australia would like to thank everyone who campaigned hard to secure affordable, immediate and equitable access to this life-saving drug for children fighting high-risk neuroblastoma. Along with Health Minister Mark Butler, we would like to thank Shadow Minister for Health Anne Ruston and the numerous current and former parliamentarians from Labor, the Coalition, the Greens and Independents who took up the cause of these brave children.

 Neuroblastoma Australia hopes that the example of early access to DFMO shows the future potential for expedited access of internationally approved life-saving drugs here in Australia. This is particularly crucial for Australians fighting rare cancers and diseases where alternative treatment options are limited.

Read Minister Butler's press release here

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 10^th July 2024

Neuroblastoma Australia is thrilled to issue the following media release in response to the July 10th announcement from Mark Butler MP about the provision of interim funding to be granted to families DFMO access:

 

MEDIA RELEASE

Neuroblastoma Australia Welcomes Federal Government Funding for Lifesaving Drug

Neuroblastoma Australia welcomes the Federal Government’s decision to provide interim funding for the groundbreaking drug, Eflornithine (DFMO).

Today’s announcement from Health Minister Mark Butler means all children from around the country suffering from High-Risk Neuroblastoma, one of the rarest and deadliest childhood cancers, will have access to this treatment, giving them a far greater chance of beating this insidious disease.

Every year, more than 40 Australian children are diagnosed with Neuroblastoma, around half of whom are diagnosed with High-Risk Neuroblastoma, which has a survival rate of around 50 per cent. DFMO has been proven to lift this survival rate from 50 per cent to around 75 per cent, by cutting the rate of relapse in half.

The Federal Government’s decision to fund DFMO means all families with children suffering from High-Risk Neuroblastoma will now have safe and affordable access to this potentially life-saving treatment here in Australia, and will no longer have to travel overseas to the United States with immuno-compromised children and be forced to fundraise hundreds of thousands of dollars to access treatment there.

CEO of Neuroblastoma Australia, Lucy Jones, said the Federal Government’s announcement would save lives.

“Today’s commitment from the Federal Government provides a critical new treatment option for parents with high-risk neuroblastoma; a treatment option which has shown it can dramatically change the chance of survival. ”

“Fourteen years ago, my daughter Sienna passed away from relapsed neuroblastoma and since that time there has been limited progress in developing new treatment options and the rate of relapse remains unacceptably high at around 50%. The drug, DFMO represents a significant breakthrough, providing hope and relief to many parents whose sole mission right now is to save their child”

“On behalf of the families we represent, Neuroblastoma Australia would like to thank the Minister for Health, Mark Butler, for stepping in and securing funding for this life-saving treatment option. We’re incredibly grateful that the Minister has recognised the urgency of this situation and has ensured DFMO will be immediately available across the whole of Australia, as well as guaranteeing access until it has been approved by the TGA and funded by PBAC. Because of the Minister’s commitment, Australian kids will have a far greater chance of beating this devastating disease, and parents can focus solely on caring for their little ones instead of spending precious time raising money and planning travel.” 

“We would also like to thank all the families impacted by neuroblastoma who bravely shared their stories to help us highlight the urgent need for funding for DFMO and we would also like to acknowledge the current and former parliamentarians who joined our fight for funding, particularly Senator Anne Ruston. This team effort brought together Members and Senators from Labor, the Coalition, the Greens, and Independents. We wouldn’t have today’s outcome without their advocacy.” 

Media Contact: Andrew Carswell, 0418 505 376

Statement from the Minister Mark Butler MP

Read the official statement from the office of Minister Mark Butler MP here: Hope for Children with Neuroblastoma as Government Provides Free Access to DFMO

Position Statement from Australian & New Zealand Children's Haematology/Oncology Group (ANZCHOG)

The ANZCHOG Solid Tumour Group has issued an endorsed position statement on the use of Eflornithine (DFMO) for patients with high-risk neuroblastoma in Australia and New Zealand.

Read the position statement here: https://anzchog.org/position-statement-eflornithine-dfmo/

For families interested in accessing this treatment, the first step is to discuss with your oncologist to see if it would be suitable for your child .