Minister for Health and Aged Care – press conference – 10 July 2024

Read the transcript from Minister Butler's joint press conference with the New South Wales Minister for Health and Regional Health, the Hon Ryan Park MP, which covered vaping and free access to a life changing drug to treat childhood neuroblastoma.

The Hon Mark Butler MP
Minister for Health and Aged Care

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MINISTER FOR HEALTH AND AGED CARE, MARK BUTLER: Thanks everyone for coming out this morning. I'm delighted to be here with my New South Wales colleague, Ryan Park, the Minister for Health in Australia's largest state, and Richard Mitchell who is the Director of the Kid’s Cancer Institute and some terrific families particularly brave Zai and his family who's joining us today.

This is a really important day for Australian families who are grappling with neuroblastoma. I want to recognise their advocacy through Neuroblastoma Australia, who work hard every single day and find every opportunity to help those children struggling with this condition get through a really tough treatment and have every opportunity to look forward to a long, healthy and happy life. Today's announcement is a very big step in making that a reality for some of Australia's kids. Neuroblastoma is a relatively rare condition but particularly for under 5-year-olds is the biggest cancer killer of very young Australians. There is a group of about 40 Australian kids who are diagnosed with neuroblastoma every year. Twenty of whom have what is traditionally called high-risk neuroblastoma. It has a relatively poor survival rate, particularly when a child after having quite rigorous treatment for chemotherapy and other treatment types, has a risk of relapse. This is the risk that we are dealing with today.

There is a new drug on the global market called DFMO. It's a drug from a company called Norgine. It has been approved by the Food and Drug Administration of the US, the FDA, which is usually the first body that drug companies go to for approval. It was approved in about December and it is now under consideration by our equivalent authority, the Therapeutic Goods Administration. The TGA has pulled this drug onto an expedited pathway. They are moving as quickly as they can to consider the approval application, and it will then go to the Pharmaceutical Benefits Advisory Committee probably later this year, to be considered for listing on the PBS. This is an expensive treatment costs about $500,000 per patient, if it is listed on the PBS that price can go down to about $31 for a script. That process of approval in Australia is a very significant one but even with the expedited pathway it is a process that will take a number of months at the very least and probably move into calendar 2025. In the meantime, though, there are kids we know that can benefit from this. We have been working very hard with Neuroblastoma Australia on behalf of patients and their families and with the drug company over the last several months to come up with a bridging arrangement that we can implement in partnership with state governments like Ryan’s, to give these kids a new chance and a long, healthy and happy life. I wrote to Norgine a number of months ago in early April, asking their Chief Executive Officer to make the drug physically available to Australian families. I thank the company for their positive response to that request. But even having the drug physically available in Australia does not deal with the affordability question. There are many families in Australia as much as they love their children who do not have $500,000 to pay for this treatment. And so, we have been working with Neuroblastoma Australia to try and find a solution pending approval processes that will potentially put this drug onto the PBS.

Today, I'm pleased to announce a bridging arrangement that will allow the Commonwealth Government to pay for the cost of drug treatment that will be delivered through state hospitals like this terrific hospital at Randwick, Westmead, in the western suburbs of Sydney and other primary children’s hospitals around the country. This will mean that from today DFMO treatment delivered in Australian hospitals will be paid for, the drug will be paid for, by the Commonwealth. This is a one-off bridging arrangement and we have developed a bespoke arrangement. We have developed in consultation with Neuroblastoma Australia and clinicians who are working in this area to make sure that kids in Australia are able to get access to this treatment right now.

It is appropriate that we go through the proper approval processes with the TGA and the PBAC. I've got to say our Government was not willing in good conscience to stand by and not give these kids every chance of survival. We know this will improve their rates of survival, and going on to live a long, healthy, happy life here in Australia, able to build their own families, able to get a job and build a life for themselves, and to enjoy the rest of their child with their loving parents and their brothers and sisters who are going through this process alongside them. I want to thank the families in particular for their patience, and their steadfastness in working with our Government to come up with this one-off arrangement for probably the rest of this year into next year having the proper approval processes. We think about 20 kids a year and their families will qualify for this treatment. It depends on really strong partnership with ministers like Ryan Park, and clinicians like Richard Mitchell here, so that as soon as possible, these kids are able to access this treatment paid for by the Commonwealth Government and get that best possible chance. I'm going to hand over to Minister Park now and then to Richard Mitchell.
NSW MINISTER FOR HEALTH, RYAN PARK: Thank you, Minister Butler, can I say from the outset, how grateful we are, that we’ve got a person like Minister Butler, in charge of health right across the nation who cares deeply, deeply about making sure that particularly young people, or vulnerable people who are dealing with serious illness right across this country, get access to world leading treatments and world leading medication. This is one of many examples where Minister Butler has gone out of his way to work with associations, work with families, work with clinicians to try and make sure Australians very, very sick young people have access to treatments that will literally change their lives. Minister Butler I want to take this opportunity to thank you for your advocacy, thank the families for their advocacy and the clinicians and Neuroblastoma Australia for their ongoing advocacy. This is a game changer. It's essentially medication and treatment, that will stop some of these families having to go over to America and be charged up to $500,000 for that treatment. Now, as a father of two young boys, I can't begin to imagine the type of pressure and strain and the stress this type of diagnosis has on families but having access to this treatment, right here in this country takes not only an enormous amount of pressure off families, but it's an opportunity for these young people to get well again and begin to live their childhood. I want to thank the team here at Randwick, the Sydney Children's Hospital Network, all of the staff and clinicians involved in delivering this important treatment and working through with families, but importantly, also want to acknowledge the families and they're dealing with not only very sick children, but the pressures and strain and stress that that puts on a family unit is something very significant. It's not something that we take for granted. I want to thank them for their advocacy. This is great news for a number of children here and the number of children across New South Wales but it's great news for our country. I want to thank Minister Butler, for his advocacy, his time, and the effort he's put in to create a solution that is bespoke in nature, but that will deliver real benefits to some of the sickest children in our state.
DIRECTOR OF KIDS CANCER CENTRE, DR RICHARD MITCHELL: Neuroblastoma is a cancer that almost occurs exclusively in children. It's one of the most common types of cancer that we treat after leukemia and brain tumours. Most children with neuroblastoma are diagnosed under the age of two years and it can be very aggressive. High risk neuroblastoma requires multimodal therapy, chemotherapy, surgery, stem cell therapy, radiation therapy, and immunotherapy. And after all that, the biggest risk is still relapse. But if the cancer comes back after all that therapy, outcomes are very poor with only 10 per cent of patients being long term survivors. DFMO is a new treatment that is shown to decrease the risk of relapse by up to 50 per cent. Prevention is the best cure in medicine and this treatment cuts the risk of the cancer coming back by half. Up until now DFMO has only been available overseas and family have had to spend a huge amount of time and resources trying to access treatment. I also want to add my thanks to the Federal Government for this initiative. This initiative allows us to deliver cutting edge therapy to Australian children with cancer right here, right now. It means that families don't have to spend huge amounts of time and resources and travel overseas to get access to therapy. It also provides equity of access, which means that we can make sure all Australian children with this condition get access to this treatment at their local centre. And most importantly, it can provide reassurance to our families that we're doing everything we can to ensure that our patients have the best chance of the long-term cure for this terrible disease.
MOTHER, KALEE ABDOLLAHI: Our son, Zai, was diagnosed with stage four high risk neuroblastoma in March last year. Since Zai’s diagnosis he has undergone 15 months of gruelling treatment protocol. He has undertaken eight rounds of high dose chemotherapy, two major surgeries, a stem cell transplant, 14 rounds of radiation and six months of immunotherapy. Zai has just completed his treatment but despite his positive response, neuroblastoma has a 50 per cent chance of relapse. If Zai is to relapse his survival rates are just 5 per cent. This is why it is so crucial that Zai and all the other children around Australia are able to access DFMO in this country. Safe and affordable access to these drugs is so important so I don’t need to risk Zai’s health by traveling overseas multiple time to access this drug. Zai will regain his childhood and he can do all the things that are nine-year-old boy wants to do. And importantly, we can get our time back together as a family. I want to thank the Health Minister for understanding how important this is for our children. I want to thank Lucy from Neuroblastoma Australia for her constant support and advocacy. I also want to thank all the treating doctors and their team at Sydney Children’s Hospital for their support. This announcement today means that next week, I don't have to be putting Zai on a plane and traveling over to America for him to access DFMO. He can get back to enjoying the school holidays with his family and friends. He can prepare to return back to school in term three and he can safely access DFMO in this country.
JOURNALIST: Can you explain how the funding will work? And if there is an expiration date on it if the TGA approval for whatever reason may be delayed?
BUTLER: This a bespoke funding arrangement we've developed for the next 18 months, we're very confident that over that time, either a special access scheme, compassionate access scheme from the company will kick in, and or the usual approval processes through TGA and PBAC, the Pharmaceutical Benefits Advisory Committee. We think this 18 month arrangement more than covers the gap. We will basically reimburse the cost of state governments from today, any treatment that is administered by state hospitals from today will be reimbursed by the Commonwealth. We'll have to go through the bureaucratic processes of negotiating the usual federation funding agreement with Ryan Park and our officials and our departments. But I make the commitment to all state governments that any treatment administered from today's date will be reimbursed by the Commonwealth. As I've said, we've also secured the physical supply of the drug from the company.
JOURNALIST: Can you describe in layman's terms how the drug actually works and attacks this disease?
MITCHELL: Yeah, so it's about metabolic turnover. DFMO is a chemotherapy we actually deliver as an oral treatment. Every type of treatment that we deliver is about stopping bad cells from growing. From a DFMO point of view, I won't get into the pathophysiology, but basically the idea is that it stops the cancer cells from regrowing and prevents the cancer cells from replicating. When the cancer cells replicating, then you have relapse. It's a specific target for those specific types of cells, and it stops those cells from growing.
JOURNALIST: One week since vapes were banned but convenience stores are still selling what's being done?
BUTLER: We're working in close cooperation with state and territory governments to ramp up an enforcement program that was negotiated by all state and territory governments and also by the Commonwealth. There was an enforcement working group that was co-chaired by the head of the Australian Border Force Commissioner Outram and by the head of the New South Wales Health, Susan Pearce, and they worked with policing authorities as well as health authorities to understand exactly who will be doing what to enforce the laws that passed the parliament. We're getting very significant reports across the country of vape stores starting to close down and of convenience stores, clearing their shelves, and their drawers, frankly, of vapes. As people know, we've seized more than 3 million vapes just in the last six months, so we're already starting to choke off supply. But, of course, we will ramp up these efforts over the coming weeks, the TGA and its equivalent authorities, including particularly here in New South Wales have been working hard to get the arrangements in place to ramp up those enforcement arrangements.
PARK: We've been tracking this literally every day. This is something that I'm very, very personally invested in. Minister Butler and I have really led the charge in relation to trying to reduce the supply from a Commonwealth end and then making sure we're tightening up where it's available in the community. In the first seven days starting from July 1, we seized around 10,000 vapes, in total, we went to around about 60 odd premises, and between illegal tobacco and vapes, we seized over a million dollars’ worth of product. New South Wales working with TGA officials together, we're starting to put a dent in this now it's going to take time, I've said that from the very beginning. The reality is, this type of product got ahead of everybody, and what it isn't, and what it can't be sold as is some sort of cessation device for cigarette smoking. That's not what we're focused on, what we're focused on is making sure that we reduce the supply, reduce the availability, and reduce the impacts particularly for young people.
JOURNALIST: Australia's real wage growth since COVID is some of the slowest in the developed world, what's your Government doing to help people with cost of living?
BUTLER: We came to Government on a clear promise to get wages moving again. We went into the Industrial Relations Commission and constantly argued for a wage increase that would deal with the inflationary pressures that households were experiencing when we first came into Government in 2022. When we came to Government, real wages were falling by 3.6 per cent per year, and household living standards were going backwards at a fast rate. Because of our efforts to get wages moving again, across the economy and in sectors like aged care, for the first time in a long time, real wages are moving, they're starting to advance again. Now, there is more to do after the OECD report confirms that right across the developed world, including here in Australia. But every single day, our Government is focused on doing everything we can to help Australian households with the cost of living, that includes getting wages.
JOURNALIST: Predictions that rates will rise again, does that mean that the Prime Minister may call an early election?
BUTLER: The Prime Minister has made very clear his intention to go for the full term and to see an election the usual course next year.
JOURNALIST: And you're expecting a cabinet reshuffle anytime soon, you're hoping to hang on to health?
BUTLER: Well, that's a matter for the Prime Minister. We're focused on our job every day, both of us feel incredibly privileged to be ministers in a portfolio as important to Australians as health.
JOURNALIST: You say that the government is getting wages moving, but the data shows real wages are almost 5 per cent lower than at the end of 2019. Does that mean you failed your election promise?
BUTLER: No, it reflects where real wages were when we when we came to Government in 2022. The reason why we were so clear about that promises that we heard from Australian households, what they were experiencing, as I said, real wages were going back by 3.6 per cent per year, when we came to government. We have got your wages moving again for the first time in many, many years. Partly that's because of our strong support for wage increases in the Industrial Commission through the national wage case for aged care workers and the aged care work value case. So yes, we inherited a position where real wages were going backwards at an alarming rate, but they are now advancing again, and that's because of our strong efforts to get wages moving.
JOURNALIST: On the OECD data, workers is high emissions sectors say they stand to see their salaries slashed by 26 per cent over six years during the transition, how will you compensate them?
BUTLER: Look, that's not a matter for the Health Minister. You'll have to put that to the relevant minister. Thanks, everyone.

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