Minister for Health and Aged Care, press conference - 14 December 2024

MARK BUTLER, MINISTER FOR HEALTH AND AGED CARE: Almost 3 million Australians suffer from eczema. It’s one of the highest rates in the world for a whole host of reasons, including our climate. The severe form of eczema can be particularly debilitating, it involves perpetual itchiness, very severe rashes, bleeding and sometimes hospitalisations because of skin infections and infections of wounds. For about 20 years, there was no new treatment for this highly debilitating condition, but in 2021 finally patients got some relief with the listing of a cutting edge new treatment called Dupixent. A treatment brought to market by a company called Sanofi. And the relief that that provided to patients, and as Melanie will say to parents of teenagers with severe eczema, has been extraordinary. It's truly been life changing.
 
Earlier this year, though, we became aware that because of a much higher uptake of this treatment that had been predicted, there was a likelihood that this treatment would be taken off the PBS as early as this month, December 2024, which would have left thousands of patients high and dry either without the treatment at all, or if they were continuing with the treatment, with a bill of about $20,000 every single year. Obviously, that was unacceptable to the government. Over the last several months, we have worked to move heaven and earth to keep this life changing treatment on the PBS. I'm really pleased to say that from the 1st of December, we've got confirmation that patients can have confidence that this treatment will remain on the PBS. Around 18,000 patients, instead of having to pay $20,000 a year for this life changing treatment, will now have confidence that it will remain accessible to them at affordable PBS prices.
 
I really want to thank the company, Sanofi for the way in which they've worked constructively with us. I particularly want to thank Eczema Support Australia, a terrific patient support group. They are relentless advocate for the interests of Australians living with eczema, particularly severe forms of eczema and we've got Melanie here representing them. Dr Weightman is going to say a few words, he's a highly esteemed dermatologist who used to head dermatology here at the terrific Queen Elizabeth Hospital, where we're at today, and is still a visiting dermatologist at the hospital. And after we hear from Melanie, from a broad perspective, Greg is here as a patient whose life has been changed by this treatment.
 
DR WARREN WEIGHTMAN, DERMATOLOGIST: I'd like to thank the Health Minister and the government for approving this increased funding for Dupixent, which will be a life changing thing for the patients. Eczema has a huge impact on quality of life. The itching is usually quite severe, and it can be more severe than chronic pain. Itching causes scratching, and that causes damage to the skin with excoriations, and they often become secondarily infected. The itching often causes poor sleep, and so during the day, patients can't concentrate, they’re drowsy, can't work, it affects their schooling. Parents with young children are often up all night, so the whole family can be affected because of this. Over heating is another significant trigger factor for eczema, so physical exertion will flare eczema, and this makes it difficult to do a lot of occupations. They often can't play sport, because if it affects exposed areas, there's often a lot of embarrassment, social withdrawal, and there's an increase in mental health issues.
 
For many years, we've had number of drugs that we use to treat eczema, but many of these weren’t that effective and they had a lot of side effects. Dupilumab was approved in 2021, it acts on two inflammatory proteins in the immune system that trigger eczema without affecting the rest of the immune system. It's a lot more effective. It works quickly within a few weeks and has a lot less side effects than the older treatments. When Dupilumab was approved, there was a lot more patients that needed it than expected, and now that we've got this increased funding, we can fund those patients and help their quality of life. Dupixent is given as a fortnightly injection, and is on the PBS for people with severe eczema over the age of 12. We very much welcome this announcement today about increased funding for Dupixent, and it will change the quality of life for so many patients and their families.
 
MELANIE FUNK, MANAGING DIRECTOR OF ECZEMA SUPPORT AUSTRALIA: I would like to say how thankful and how, to be honest, relieved that I am that the Minister and all parties have come together to make sure that this treatment for severe eczema remains on the PBS. The devastating impact that eczema has it is debilitating. It is underrated by many, it is torture. The prospect of having this treatment taken away was just not acceptable, an unbearable thought. We are thankful. We're very relieved. This year has been a year of collaboration and discussions with the parties, the Minister, the independent PBAC experts to really come together and at the same time, sheltering further distress and mental health burden from our community that are living with this condition. We're really happy to be here today to share this good news and this announcement in a positive way. It really is a very positive, happy early Christmas gift for all of us.

The others have really mentioned the impact of eczema and the life changing impact that this treatment has had, I know from talking with many Australians, families, adults with eczema, adolescents, including my own teenage boys who have been on this treatment, it has been life changing. We really do look forward to further advances and further treatment for all Australians with this condition, from young children right up until adults and beyond, because it is a life-long condition. Thank you very much and thank you to our experts and our patients as well, who all formed this really supportive eczema community with eczema support Australia.

GREG GILES, PATIENT: I'm here to basically talk about the experience of actually living with eczema and how Dupixent has changed my life as a consequence. I remember 30 years ago when I had my first serious bout of extreme eczema. I got little support from GPs, I was living in Sydney at the time and they didn't understand it properly. I remember days where I would spend the day just sitting in a cold bath because there was no other form of relief available to me.
 
Eventually, I moved states to a nicer climate here in South Australia, my eczema, however, occasionally returned in quite severe forms. It would basically, as Dr Weightman has already pointed out, evidence itself by extreme thickening of the skin, which would weaken at various points in time, and then later in the evening, it would dry out and it would become scaly, and you would spend hours and hours scratching. You can imagine what impact that not just has on you and your mental health, but also on your partner and your family. I had another extreme attack. It happened around the time in which Dupixent had reached the PBS. I was one of the very earliest adopters of Dupixent here in South Australia. Within two weeks, what was almost total body coverage for me had actually completely disappeared. Since then, I've been on it for three years, it has not returned. To call it life changing is to talk about it as something that has improved your quality of life, is not an over statement. To ensure that this was going to be maintained on the PBS was such an important outcome for that. I want to thank the Minister. I want to thank the government. I want to thank Eczema Support Australia for their remarkable advocacy and the work that they do ensuring that this remained on the PBS, it is so important for me, and it's so important for thousands of others who live with severe eczema,  thank you all.
 
JOURNALIST: Just quickly you mentioned it’s about 20 years since a new treatment, why is it so hard to find an effective treatment for eczema?
 
DR WEIGHTMAN: I don't think they understood the immune mechanism. It's only in recent years that there's been this explosion in how the immune system works and how to target just one part of the immune system to get the benefit. So that's why it's taking so long.
 
JOURNALIST: Why is the drug so expensive? It’s such a high cost.
 
DR WEIGHTMAN: Unfortunately, all the biologics are very expensive, and because they've made a different way to the conventional drugs, and it's a lot more intensive, and that's where the cost comes from.
 
JOURNALIST: Do you think this has somewhat paved way for more improved treatments?
 
DR WEIGHTMAN: Yes, it certainly will be. There are new, similar biologics that being approved overseas, and they may or may get onto the Australian market.
 
JOURNALIST: From your experience, are we seeing more people suffering from this?
 
DR WEIGHTMAN: Yes, I think eczema is increasing, and I think that's due to the environment and lifestyle of Australians.
 
JOURNALIST: Are we seeing enough done in that sort of preventative stage?
 
DR WEIGHTMAN: I think that there needs to be a lot more awareness of eczema in Australia, and that the measures that can be used to try and prevent it.
 
JOURNALIST: Minister, just after your thoughts on a referendum for the nuclear power energy?
 
BUTLER: There is a referendum on Peter Dutton's nuclear power plants at the next federal election. This is going to cost Australians for decades and decades, if he gets the chance to implement it. We've been waiting for months for this detail, and when he rolled out his plan, finally, over the last 24 hours, it's a fairytale. It assumes the economy will crash. It assumes no one will put any rooftop solar onto their roof. It assumes that we'd have access to this power at a fraction of the cost you've seen in every other country on the planet, and it makes no assumption for the building of poles and wires to actually get the power to where it's needed. We've waited this long and all we were delivered, by Peter Dutton was an utter fairytale. There is a referendum on this, it's called the federal election in the next several months, and Australians have a clear choice before them, cheaper, cleaner, renewables power that's in the process of being rolled out right now, or a highly costly fairytale that Peter Dutton has put before the Australian people that might take effect in decades.
 
JOURNALIST: Just another one from Perth, on young people increasingly taking  paracetamol to take their own life, should more be done in that space?
 
BUTLER: This has been a serious public health concern for quite some time. The incidence of overdosing on paracetamol has caused deaths, which is an utter tragedy, but even where the patient survives, can cause very significant long term kidney damage as well. There has been quite a detailed consultation led by our medicines authority, the Therapeutic Goods Administration through 2022 and 2023 to consider restrictions on the access to paracetamol. That ranged from reducing pack sizes available at supermarkets and in chemists right up to the possibility of prescription for paracetamol being a new legal regulation. There was a lot of need to balance different interests obviously through that process. Pain advocates who represent people in chronic pain, who use paracetamol almost every day, were keen to make sure we struck a balance that ensured access for those many hundreds of thousands of Australians, while protecting young people from the risk involved. The TGA put in place a decision early last year, which takes effect in February. That I think, was the right balance. It reflected very deep consultation with the public health sector, with clinicians, but also patient groups as well. There'll be a strong community awareness campaign over the course of summer, as we move to those new restrictions on pack sizes, which ensure that large pack sizes are only going to be available after a discussion with someone at a pharmacy.
 
JOURNALIST: And do you think that there needs to be much more preventative mental health treatment for young people?
 
BUTLER: Of course. There has been a very significant increase in youth mental health issues, youth mental distress now, for the best part of 15 or 20 years, we've seen that reflected in other developed economies as well. We've got some of the world's leading youth mental health models of care here in Australia, Headspace, many others besides. But I have been told by experts that it's time to have a look at them again and see whether they're still fit for purpose. The models of care, let alone the scale we have to deal with the number of young Australians experiencing mental distress. We're going through that process, while at the same time, we're continuing to roll out new Headspace services and provide additional supports to youth mental health organisations.
 
JOURNALIST: Just quickly, sorry if you already mentioned this. But does this mean that this treatment for the PBS is for good or the foreseeable future?

BUTLER: We've secured this for the long term. There was a risk this treatment would disappear from the PBS this month and 18,000 Australians would have had to go through summer, and all of the impacts the hotter weather has on this condition without access to a treatment as Greg and Melanie have said, have changed their lives. We moved heaven and earth to make sure that we can secure this treatment for the long term, and we've done that. Thanks everyone.