Anne Ruston (SA, Liberal Party, Shadow Minister for Health and Aged Care) Share this | Hansard source

I move:

That the Senate take note of the answers given by ministers to questions without notice asked by Opposition senators today.

Most particularly, I want to take note of the answer given by Senator Gallagher to my question in relation to the treatment for neuroblastoma. The coalition has been calling on the government for some time to consider supporting patients with access to eflornithine, commonly known as DFMO, for Australian children with high-risk neuroblastoma.

Neuroblastoma is extremely rare, and its diagnosis is absolutely devastating for families. This aggressive childhood cancer occurs mostly in young children, usually between birth and the age of five years. Tragically, 50 per cent of children diagnosed with stage 4 neuroblastoma will not survive. However, a groundbreaking new treatment is available in the US, and it's been shown that it increases the chances of survival to 75 per cent.

DFMO is currently not registered or funded outside of the US. This means families are forced to fundraise hundreds of thousands of dollars to access this life-saving treatment for their children, and they have to travel to the United States with immunocompromised children in order to get access to this particular treatment. Among these families are Tyler and Alix Richardson, whose one-year-old son Harris—or Hazzy, as he's often referred to—has been diagnosed with neuroblastoma. The Richardson family have been forced to start a GoFundMe page to raise funds for Harris, and the family will need to risk flying all the way to the US to receive this treatment.

However, DFMO data is well known to Australian paediatric oncologists, patient advocates, patients and their families. It is our hope that the government will support these families by listing this life-saving medicine and allowing access until DFMO is able to be listed on the PBS.

This would support children like seven-year-old Holly Zerk, who is bravely battling neuroblastoma. With the support of her mum, Lee-Anne, and her dad, Travis, Holly has spent the past 13 months undergoing intense treatment, including multiple rounds of chemotherapy, which has left her seriously immunocompromised. Access to DFMO could potentially save Holly's life.

It would support nine-year-old Zai, who was diagnosed with high-risk neuroblastoma in March 2023. To date, he's been through eight rounds of chemo, two surgeries, a bone-marrow transplant and 12 rounds of radiation. The side effects of this treatment include reduced eyesight, permanent hearing loss and infertility. Zai's parents, Kalee and Arash, are desperately trying to raise $300,000 so he can receive DFMO, which could save his life.

It would support two-year-old Luna, who was diagnosed with high-risk neuroblastoma in July 2023. Luna has been through five rounds of chemotherapy, surgeries, stem-cell therapy, a bone-marrow transplant, radiation and immunotherapy. Luna's parents, Samantha and Taylor, are desperately trying to raise $500,000 so she can access DFMO, which could save her life.

We know these children cannot afford to wait. Access to this potentially life-saving treatment is absolutely vital for these and many more Australian children. Unfortunately, Labor has a concerning track record of slowing down medicine listings as a way to save money. I truly hope this is not the case here. It is absolutely critical that the Albanese government does everything in its power to make sure that these children get access to this treatment because it will potentially save their lives.

Compassionate access and act-of-grace payments are available to this government right now. They do not have to wait for the process to go through. This is available as an action the government can take today. The government must also be upfront with these families across Australia who are going through one of the most heartbreaking journeys anyone could imagine, supporting their child to fight neuroblastoma. They've spent days and days in hospital watching their children have to undergo the treatments that I have described of the three young people I have just mentioned. But there are many more young Australians who are going through this treatment, and their families are going on this journey with them.

I think it is completely reasonable for these families to know from the government right now when the government is intending to provide the much-needed support so that they can access DFMO, and, hopefully, allow their children a greater chance of survival from this absolutely insidious condition. We ask the government: please, answer the calls of these families.