Families call on Health Minister to bring miracle cancer drug to Australia
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In the heart of every Australian family is the unwavering hope for health and happiness.
But for some, this hope is being tested by a race against time—a race to bring a lifesaving cancer treatment drug to Australia that could mean the difference between life and death for their children.
The drug in question, difluoromethylornithine (DFMO), has emerged as a beacon of hope for those battling neuroblastoma, a rare and aggressive form of childhood cancer that claims more lives of children under five than any other cancer.
DFMO has been saving lives overseas, but Australian families are currently unable to access it without travelling to the United States, a journey that costs hundreds of thousands of dollars.
The story of Julia and Matthew Sammut's son Harry is a poignant example of the struggle faced by many.
Diagnosed with high-risk neuroblastoma at just eight years old, Harry has endured an intense and gruelling treatment regimen, such as six rounds of chemotherapy, surgery to remove his tumour, two bone marrow transplants, 12 rounds of radiation, and immunotherapy.
‘Every time he got a test, it got worse,’ Julia said.
‘It was a tumour, it was in his bone, it was everywhere. The cancer was everywhere.’
Despite this, he faces a 50 per cent chance of relapse, and if that happens, his chances of survival drop to a mere 5 per cent.
Desperate to give their son every possible chance, the Sammuts have already sent Harry to the US twice for treatment with DFMO, stretching their finances to the limit.
The urgency of this situation has not gone unnoticed.
Neuroblastoma Australia's Chief Executive, Lucy Jones, who has experienced the devastation of neuroblastoma firsthand with the loss of her daughter Sienna, is calling on Federal Health Minister Mark Butler to fund special access to DFMO overseas before it's approved in Australia.
‘Children with neuroblastoma simply do not have the time for rare diseases, the regulatory approval process needs to be quicker,’ Jones said.
Neuroblastoma Australia estimated the cost of providing access to DFMO is between $5 million and $15 million over two years—0.1 per cent of the federal health budget but a sum that could save countless young lives.
‘I think after the children have been through so much, to deny them this is just so cruel,’ Jones said.
Harry’s family has started to go low on cash and patience, yet they still have three more trips to America.
‘Mark Butler, please help us get this drug into Australia to help all these beautiful Neuroblastoma children access the drug while they can to save their life,’ Julia said.
In response, Butler has urged pharmaceutical company Norgine to apply to register DFMO in Australia and to consider compassionate access for Australian families in the meantime.
‘Norgine has now lodged an application for DFMO with the TGA,’ the statement said.
‘They are now working with the TGA to achieve this as quickly as possible.’
However, the fear remains that the approval could take seven to 12 months—time that children with neuroblastoma do not have.
As families like the Sammuts face the prospect of more trips to America for treatment, their resources and patience are dwindling.
In the face of this dire need, the community has rallied to support the Sammuts and others in their position.
A donation page has been set up through Rare Cancers Australia to help fund Harry's Neuroblastoma journey and others like it.
Have you or your loved ones faced similar challenges in accessing treatment? How do you think we can improve the system to ensure that lifesaving drugs are made available more swiftly? Let us know in the comments below.
But for some, this hope is being tested by a race against time—a race to bring a lifesaving cancer treatment drug to Australia that could mean the difference between life and death for their children.
The drug in question, difluoromethylornithine (DFMO), has emerged as a beacon of hope for those battling neuroblastoma, a rare and aggressive form of childhood cancer that claims more lives of children under five than any other cancer.
DFMO has been saving lives overseas, but Australian families are currently unable to access it without travelling to the United States, a journey that costs hundreds of thousands of dollars.
DFMO has become a miracle cancer drug for children battling neuroblastoma. Credit: Shutterstock
The story of Julia and Matthew Sammut's son Harry is a poignant example of the struggle faced by many.
Diagnosed with high-risk neuroblastoma at just eight years old, Harry has endured an intense and gruelling treatment regimen, such as six rounds of chemotherapy, surgery to remove his tumour, two bone marrow transplants, 12 rounds of radiation, and immunotherapy.
‘Every time he got a test, it got worse,’ Julia said.
‘It was a tumour, it was in his bone, it was everywhere. The cancer was everywhere.’
Despite this, he faces a 50 per cent chance of relapse, and if that happens, his chances of survival drop to a mere 5 per cent.
Desperate to give their son every possible chance, the Sammuts have already sent Harry to the US twice for treatment with DFMO, stretching their finances to the limit.
The urgency of this situation has not gone unnoticed.
Neuroblastoma Australia's Chief Executive, Lucy Jones, who has experienced the devastation of neuroblastoma firsthand with the loss of her daughter Sienna, is calling on Federal Health Minister Mark Butler to fund special access to DFMO overseas before it's approved in Australia.
‘Children with neuroblastoma simply do not have the time for rare diseases, the regulatory approval process needs to be quicker,’ Jones said.
Neuroblastoma Australia estimated the cost of providing access to DFMO is between $5 million and $15 million over two years—0.1 per cent of the federal health budget but a sum that could save countless young lives.
‘I think after the children have been through so much, to deny them this is just so cruel,’ Jones said.
Harry’s family has started to go low on cash and patience, yet they still have three more trips to America.
‘Mark Butler, please help us get this drug into Australia to help all these beautiful Neuroblastoma children access the drug while they can to save their life,’ Julia said.
In response, Butler has urged pharmaceutical company Norgine to apply to register DFMO in Australia and to consider compassionate access for Australian families in the meantime.
‘Norgine has now lodged an application for DFMO with the TGA,’ the statement said.
‘They are now working with the TGA to achieve this as quickly as possible.’
However, the fear remains that the approval could take seven to 12 months—time that children with neuroblastoma do not have.
As families like the Sammuts face the prospect of more trips to America for treatment, their resources and patience are dwindling.
In the face of this dire need, the community has rallied to support the Sammuts and others in their position.
A donation page has been set up through Rare Cancers Australia to help fund Harry's Neuroblastoma journey and others like it.
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