Lifesaving treatment for deadly childhood cancer available overseas will now be for free in Australia

Lifesaving treatment for a deadly childhood cancer will now be free after it was revealed desperate families were trying to raise up to $500k for help overseas.

Desperate families who have been relying on charity to fund a $500,000 lifesaving treatment for a deadly childhood cancer available overseas will now be able to get it for free in Australia.

Health Minister Mark Butler has agreed to fund the medicine DFMO (difluoromethylornithine) in Australian hospitals.

The decision will benefit around 20 children with high risk neuroblastoma a cancer that affects the nervous system and is most common in babies under five.

Jack Schofield, who has neuroblastoma, pictured with his brother Ted.

The move came after News Corp highlighted the plight of multiple families who were each desperately trying to raise between $300,000 and up to up to $500,000 for the treatment which could slash the risk of the cancer returning by almost 50 per cent.

Pharma company Norgine will make DFMO available to Australian patients for free under a compassionate access scheme while it pursues the necessary approvals for a PBS subsidy.

Kalee Abdollahi with her husband Arash and children Portia, 5, Cyrus, 7, and son Zai, 9, who has neuroblastoma.

Zai Abdollahi is being treated for neuroblastoma.

Until Norgine establishes its compassionate access scheme, the Albanese Government will provide funding to ensure that major pediatric hospitals across Australia can provide DFMO to every Australian child with high-risk neuroblastoma, for free and with no payment required.

The Commonwealth will also provide funding to state and territory governments to support them to administer DFMO to eligible patients, free of charge, through the Drug and Therapeutics Committees of major public hospitals.

This means that patients with high-risk neuroblastoma can obtain the medication without having to travel overseas.

Jack Schofield, 4, has neuroblastoma.

“We understand that DFMO offers the only hope to some patients who are desperately ill from neuroblastoma,” Mr Butler said.

“This one-off funding ensures that they can get this new and promising treatment, without the huge price tag, while proper approval processes are followed.”

Around 20 patients are expected to benefit each year over the next two years and the free access will begin immediately.

Neuroblastoma Australia CEO Lucy Jones thanked the minister and said she was “thrilled” the treatment would be made available for free in Australia.

“This is what we wanted,” she said.

It means children like Zai Abdollahi who was desperately fundraising so he could travel to the US to receive treatment should now be able to receive it in Australia, she said.

“We hope it is the start of a greater recognition of rare childhood cancers,” she said.

Originally published as Lifesaving treatment for deadly childhood cancer available overseas will now be for free in Australia