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

My question is to the Minister representing the Minister for Health, Senator Gallagher. Seven-year-old Holly Zerk is bravely battling neuroblastoma. With the support of her mum, Leanne, and her dad, Travis, Holly has spent the last 13 months undergoing intense treatment, including multiple rounds of chemotherapy which have left her seriously immunocompromised. High-risk neuroblastoma is the deadliest form of cancer affecting young children, with devastating survival rates of around 50 per cent.

However, a groundbreaking new treatment approved in the US, known as DFMO, has been shown to dramatically increase survival rates in children to around 75 per cent. This could potentially save Holly's life and the lives of many other young children. Minister, will the government respond to the desperate calls of parents like Leanne and Travis with children battling high-risk neuroblastoma and provide urgent fast-track assistance to access the potential life-saving treatment in Australia?

Katy Gallagher (ACT, Australian Labor Party, Minister for the Public Service) Share this | Link to this | Hansard source

I thank Senator Ruston for the question. I acknowledge her interest in this, and it was a subject that we spoke about during budget estimates. I can say that the Minister for Health and Aged Care is working closely with the drug company and others, including having a meeting with me earlier this week to talk about how to provide access to this new drug—this new treatment line—in the time between now and its approval through the PBAC and PBS process. I understand an application has been made and that the TGA are giving it priority assessment, but that still takes some time. I can imagine, for Holly and her parents and for all of the other children and their families who are diagnosed with or undergoing treatment for neuroblastoma, that this important lifeline is really critical and a decision as soon as possible is really important.

I can tell you that we are working on it. We are looking at ways and options to provide access to this medication. I'm not taking away from the seriousness of the issue you raise, but, as you would understand, there are a number of representations to governments about accessing new medications. I expect that will only increase as the highly targeted and engineered treatment regimes continue to be developed for drugs and medications that aren't on the PBS. We are very sympathetic. The minister for health is very sympathetic to looking at what we can do. I've had a meeting with him. Our departments are working together to look at what options are available. (Time expired)

Sue Lines (President) Share this | Link to this | Hansard source

Senator Ruston, a first supplementary?

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

One-year-old Harris Richardson, also known as Hazzy, son of Tyler and Alix, has been diagnosed also with neuroblastoma. The Richardson family have been forced to start a GoFundMe page to raise funds for Hazzy and the family will need to fly to the US to receive the treatment that Harris needs. Is the government concerned that families are being forced to fundraise hundreds of thousands of dollars to access life-saving cancer treatment for their immunocompromised children overseas when the drug could actually be made available safely and accessed here in Australia?

Katy Gallagher (ACT, Australian Labor Party, Minister for the Public Service) Share this | Link to this | Hansard source

(—) (): I can completely understand Harris's parents and family and friends doing everything that they can do to provide treatment for their son—of course I can. As a parent I completely understand that. The government is keen to look at what we can do. There is the Medical Treatment Overseas Program. That, for many of these children, is not an option, as I understand it; for some it might be, but it doesn't provide the assistance universally. So we are looking at ways. I'm aware of Neuroblastoma Australia's public calling for this, as is the minister for health, who, I believe, has had a number of meetings about this, both internally to government and externally. As you know, there have been 201—I think—new and amended listings on the PBS since 2022. (Time expired)

Sue Lines (President) Share this | Link to this | Hansard source

Senator Ruston, a second supplementary?

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

As you say, Minister, the health minister has stated—even as late as in this morning's paper—that your government is doing everything it can as quickly as it can to work with the supplier of DFMO. These children cannot afford to wait for this life-saving treatment. Compassionate access is within your power now. Are you considering this?

Katy Gallagher (ACT, Australian Labor Party, Minister for the Public Service) Share this | Link to this | Hansard source

Compassionate access is really in the hands of the drug company under the compassionate access program, and we are working with them on that. They have also applied for urgent listing, and that is being assessed by the TGA. As those things are undertaken, I've told you already, we are looking at what mechanisms are available to provide assistance in the short term, between approval, pending approval and listing on the PBS. I would also say that we do have to go through a process. I am repeatedly asked to provide access to medications that are not on the PBS and for all worthy causes. This is something that the government has to properly consider, including what it means for other children with other illnesses who might want to access programs and for children and adults who aren't on the PBS.