Rowan Holzberger
Forde · Australian Labor Party · Australia
“… … … "Right at the beginning, it was thought that there was an intrusion in the relationship between the doctor and their patient," AMA president Tony Bartone said. … … … At the time Medicare was introduced in 1984, the AMA was heavily influenced by developments in the United Kingdom, particularly the National Health Service.”
“During my preparation for my contribution tonight I came across an article written in 2019, at the death of Bob Hawke, by ABC journalist Norman Hermant, and I'd like to read out a bit from it. The article was titled, 'Before Bob Hawke's Medicare, a visit to hospital forced many Australians into bankruptcy'.”
“My dad met my mum in Mount Isa, and I was born in Brisbane and grew up in Broken Hill, so I'm not sure where that quite places me. I've always actually believed regional Australia should have its own state. The cities could have one state, and regional Australia could have another state—anyway.”
“Mrs Buckingham's quote on thinking twice about going to see the doctor is something that all of us in our electorates have faced and heard about from people who told us that they would choose to put food on the table and feed their kids rather than see the doctor.”
“I think that will go some way to addressing some of those shortages; 17,000 doctors is a shot in the arm to the health system. Finally, the member for Riverina talked about the NDIS, kicking the proverbial out of us.”
“Even though they gave up, I think some time after the 1993 election, realising that they couldn't do what John Howard said and stab it in the stomach, they went around and tried to stab it in the back.”
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“One was from a very good source—a local Indigenous health service, in fact. They said that there are now providers literally trawling supermarkets in Logan and going through the train station, looking for obviously vulnerable people and trying to sign them up to the NDIS or trying to sign them up as part of their plan—absolutely disgraceful. Again anecdotally—this may not be as good a source as that first one—there are stories of providers offering cashbacks if you sign up to the NDIS. Unfortunately, it's believable. It's believable when you realise that some providers see a participant as a prize cow. Somebody with a million-dollar plan is treated as prize cattle. That is, incidentally, a concept that fundamentally undermines choice and control, which is supposed to be at the heart of the NDIS.”
“With the short-term goal of eight per cent growth and the longer term goal of five or six per cent, in line with the growth of Medicare and aged care, it will continue to grow. People, I think, need to have faith in that. Within that growth, the changes that the government is making through this legislation are part of its wider plan of reinforcement. Getting back to what I said to begin with, I'm very pleased to see that the opposition has that long-term optimism about the success of the NDIS. There are a couple of features of this bill that I think are really worth emphasising. One is the promotions order. I know that some of the things I'm about to mention here are illegal anyway and would already be caught up by the law as it is, but this is the extent that some providers will go to to get business. These are both anecdotal stories.”
“What we saw back then was the opportunity, when the scheme was beginning, to tackle the problems as they arose, but, instead, the problems that existed in 2018 just scaled up as the scheme scaled up, and it was left to the rest of us not in government to sit there and watch it careen completely out of control. Now, any member in this House would know that the NDIS is probably the single biggest issue we hear in our constituents' concerns. That trickle that we witnessed in 2018 has really turned into a flood, and we knew all along that something was fundamentally broken, and this government is trying to get it back on track. I feel like I need to be careful when I say that because the NDIS is so life changing and so important for people. I think the message needs to be that it will continue to grow.”
“I've got a family member who's autistic and needs a bit of help, but, after taking part in decisions about whether or not we pursue the NDIS, I thought that the supports they would get through the NDIS would not be worth the hassle that it would take for them to go through the process of applying and then fighting for those supports. Of course, now we know that there are no other services that exist outside the NDIS. They've all been allowed to die on the vine, so the NDIS is, as is often said, the only lifeboat in the ocean, and now that family member is going to have to try and get some supports through the NDIS. But it was such a horror story that I witnessed in my time in Murray's office that it really turned me off even trying to get the NDIS supports for that family member.”
“If it weren't true it would indeed be funny. This family then began the journey that so many families undertake of going through the review process, going to the AAT, fighting the agency all the way and having the agency fight tooth and nail back at them. I remember it was during COVID because the family, on the night before the hearing, had got a COVID test so they could attend the hearing. But on the night before the hearing—and the agency had spent $7,000 on the reports and potentially tens of thousands of dollars on a top-tier legal firm to fight this family all the way—the agency caved in and gave them the dog. It is those sorts of stories which we saw in 2018 and 2020 that, on a personal level, turned me off the NDIS so much.”
“In 2018, we saw the NDIS go from being a trial to being fully implemented, and we began to have a trickle of complaints come into the electorate office. One story that I remember really stands out from that time. A severely disabled child, an autistic child, was trying to get an assistance dog, and the dog cost 20 grand or something like that. They're not cheap. The NDIA approved $5,000 worth of reports—OTs, psychologists, whatever—and then another $2,000 for support coordination to get those reports together. So it was $7,000 in total for reports, which is ludicrous in itself. The family duly went away to the professionals, who said, 'Yes, this child would benefit from a dog; it's a reasonable and necessary support.' It's ludicrous in itself that it should be $7,000 to get it, but guess what the NDIA said when it got the reports? No dog.”
“One memory, more than almost any other memory, that sticks with me was visiting community centres where there were parents of disabled kids that were just desperate for any assistance that they could get. The emotion that I felt on those visits is something that has stayed with me for decades. From talking to families who were involved in Disability Services Queensland, it is worlds apart from what the NDIS is, with all of its flaws, compared to what it was like when it was through Disability Services Queensland. I'm no political professional—I feel like I need to make that point before I go on to my next point. I ran a construction company and worked on the land, but then I found myself working for a senator in 2018, Senator Murray Watt, doing all of his constituent work, all of the electorate work.”
“The work that he did when we got back into government in 2022 really began to get it back on track. We are headed to that short-term target of eight per cent growth, down from 22 per cent. The member for Lindsay talked about there not being a plan. There absolutely is a plan, and it's being rolled out now. Unfortunately, it's being rolled out while the scheme is as big as it is, when it could have been dealt with at the time. It is pleasing to hear the opposition talk positively about their attitude towards the NDIS and the future of the NDIS because it is a scheme that Australians rightly should be proud of. It is a world-leading scheme, and it changes people's lives for the better in a way that would have been inconceivable in the past. I remember being a young staffer to Peter Duncan, the former member for Makin, in the nineties.”
“Something else the member for Lindsay said is that we now have a scheme with about 720,000 people on it. In Queensland, I know when the Productivity Commission was first designing the NDIS, it was designed for somewhere around 95,000 Queenslanders, but, in effect, we've ended up with somewhere around 175,000 Queenslanders—totally unsustainable at those levels. I'd like to acknowledge the work that the minister, Senator McAllister, and the health minister have done recently to get the NDIS back on track. I'd also like to acknowledge the work that the former minister, Bill Shorten, also did. He's somebody who is perhaps more responsible than anybody else for the beginning of the scheme and was, unfortunately, witness to it being so badly managed while Labor was in opposition.”
“I rise in support of the National Disability Insurance Scheme Amendment (Integrity and Safeguarding) Bill 2026. In doing so, I acknowledge the contribution of the member for Lindsay in speaking for the opposition. I do appreciate the depth of support that you expressed in your speech for the NDIS and your desire for it to be sustainable. I want to acknowledge that. Of course, there are some things in that speech that I think also need to be addressed. One is that, when the opposition talk about the NDIS growing unsustainably today, I think it needs to be pointed out that, when we came to government, it was growing at about 22 per cent—totally unsustainable. After the opposition oversaw its implementation, from the trial period until we got into government, we really saw it being completely mismanaged in terms of the number of growth.”
“I rise to speak against this motion. I've got to say that the one thing that I really expected when I got here was that there'd be a lot more bipartisanship behind the scenes. I've been disappointed to see that, actually, this opposition is focused on scoring political points and making division where there really should be cooperation on so many things. We've seen it all week over fuel, and we see it on the NDIS as well. I guess it's that working together doesn't encourage Facebook clicks. The other thing that I think that the opposition and the member for Bowman should be—”
“Instead of trying to reassure Australians, the opposition is more determined to make a political point and prove its ideological point than it is to actually look after the economy and look after the people of Australia. I think they should really take a bit of a hard look at themselves before they criticise the government any further.”
“I was listening to the Minister for Climate Change and Energy yesterday when he was talking about what we've got here. The Minister for Climate Change and Energy said: Firstly, Australia now has 39 days of petrol, 1.6 billion litres, which is up very slightly. Diesel, 30 days, which is pretty flat at 2.7 billion litres. And jet fuel, 30 days also, 828 million litres. What that tells me is that while the fuel is flowing strongly out the door, especially to regional Australia, it also continues to flow in the door, that every expected arrival has arrived and that our international supply chain remains secure at this point, as we've said all the way along. That's important to reassure Australians.”
“Sometimes it can be so convincing that I just don't really know what they're getting at. Why would they want to get rid of the home battery scheme? They are so convincing, but, when you look at what they're trying to say, it just doesn't make any sense. They're just coming from this ideological position that somehow renewable energy has to be bad. Why would they get rid of the home battery scheme when it has resulted in 200,000 Australians now being able to basically take themselves off the grid? I don't get it. It is this approach, which they took through their time in government, that has meant that we have ended up in this situation we're in today. I wish I had a bit longer to talk about a lot of the good things that this government is doing.”
“That approach saw four out of our six refineries close under them, and this nation would dearly love to have them at the moment. It is very much the former government's complete abnegation of a role in the energy transformation within Australia and its complete lack involvement in the development of those key assets that have landed us in this situation we're in today. When you look at what they want to do and you hear the member for Groom sneer at the role of the Minister for Climate Change and Energy, it really does, I think, indicate something. What I don't understand about the opposition is that it's a bit like one of those optical illusions. The opposition are trying to tell you that the lines aren't actually parallel, but the lines really are parallel when you take a look at it.”
“But the member for Groom must have been very pleased with his candidate in the ever-continuing leadership race within the Liberal-National coalition, the member for Canning, talking on Insider s yesterday about how this is not the time to make a last stand for neo-liberalism in Australia. I'm sure that the member for Groom was very pleased with that statement and with that interview. But it does ignore the fact that, at the moment, his leader, the Leader of the Opposition, and the shadow treasurer are the two warriors in this place for neo-liberalism. So I think the member for Canning and the member for the Groom would be rightly concerned that those two are wanting to make the last stand for neo-liberalism, because it is very much that approach that has left us in the situation we're in today.”
“I notice that the member for Groom has moved his motion and now has left the chamber, but, while I'm sure he's gone back to his room to follow this debate closely, it would have been nice to be able to address some of the things directly—through you, Deputy Speaker Buchholz—to him. There were so many things in his speech that it's difficult to know where to start. He talked about there being a lack of industrial complex in this country, but he didn't look at the past, and it's amazing that anybody from that side can stand up here and talk about our de-industrialisation—which occurred under decades of rule of people from that side.”
“It's about something which has a vitally significant impact on individuals' lives, whether it is the 41,000 veterans who are waiting for their claims to be assessed, the mess that we were left with in the NDIS or the Public Service that was run down and, I think, resulted in the death of Jarrad and resulted in the underselling of so many Australians and their abilities.”
“It was a confluence of factors, with the debt from Centrelink being the final thing that made him feel like he couldn't go on.' In some ways, I feel like I should sit down now, because no message is as powerful as Kathleen Madgwick, a one-time resident of Mackay. But I think that the work that she's doing needs to be acknowledged along with how important it is that government services are there to do the job which they're supposed to do. One thing that this government has done over the last almost four years that we've been in government is restore integrity and capacity to the Public Service. It is something which is not abstract at all when you think about Kathleen and Jarrad.”
“We had been at the beach a day before his death and he had been caught in a rip while out swimming. When he had saved himself and got back to shore, he expressed to me how disappointed he was at his level of fitness and spoke about how keen he was to get fit again as part of his plan for the future. I believe that the pressure of Jarrad's financial situation and going from thinking he was getting a payment after initially being rejected to believing that he was not going to receive any money for some time flipped a switch for him. I do not believe that his debt was the only thing that bothered him.”
“I remember thinking that I would go over to the park, thinking that he might be hiding out there. I took Jarrad's dog, Cooper, with me on my walk. As I went down into the bushes and into the park, I saw in the corner of my eye what I thought was a jumper in a tree. As I got closer, I saw that it was Jarrad. He had hung himself. In the days following Jarrad's death, I tormented myself thinking about the fight we'd had about his cover letter. I felt like a bad mother. As time went by, I came to realise that his suicide was not because of our argument. We disagreed in the past over minor things and this was one such disagreement. While Jarrad had been struggling with money and felt the pressure of bills that he had to pay, I do not believe he had been living with suicidal intent for an extended period of time.”
“The next morning I woke up and saw that Jarrad wasn't home. I sent him a text, rang him, and sent him a message on social media, but I received no response. I was starting to get worried, as it was not like him to not respond for an extended period of time. I called Queensland police on 31 May, and they said they'd start looking for him. I took some comfort from that and resigned myself to waiting to hear from Jarrad. Queensland police rang me at around 6.45 am the next day, and I jumped at the phone call, but they were only calling to say they hadn't started looking for Jarrad yet. I told QPS that I couldn't wait because I was really concerned now. It had been a whole day and night since I'd heard from him. I set off walking shortly after that phone call.”
“He asked me what I thought about his cover letter, and, as I read it, I saw he'd written something that I thought wasn't really appropriate for the job. I gave him some feedback, knowing that he'd written it in the afternoon while he was frustrated with DHS, but he started swearing at me, saying—and I won't quote the full thing—"What the F do you know?" We exchanged words and he went back to his room. It was not usual for him to swear at me like that, and I was annoyed by it. I thought I'd let him cool down, so I left him alone. When we went out that night, at around 6.45 pm, I believed he was going for a walk to clear his head. At around 7.30 pm that night, I got a text from Jarrad saying, "I love you." I was glad to receive this text, as I thought it had meant he had calmed down.”
“Here's a bit of the letter I will quote: 'It was that in one afternoon in May 2019, Jarrad seemed happier. He was in his bedroom listening to music, and I remember him talking about joining the Army, which was a plan he had for his future. At about 4.45 that same afternoon, I remember that Jarrad came out of his room and said to me something like, "I'm not going to get paid, because I owe them $2,000, and I'll never get out of debt." He was very upset. He was talking about a debt that he had to DHS. This was the first time that I'd heard him say anything about a debt to DHS. At around 5 pm that same evening, Jarrad came out of his room. He'd been working on a cover letter for a job application at a meatworks.”
“She has turned tragedy into purpose and has fought hard for vulnerable people as they come up against government departments, particularly Centrelink. The tragedy was the worst kind. It involved the suicide of her 23-year-old son, Jarrad. These two Queenslanders, who were originally from Victoria, settled in Tin Can Bay and Mackay. I'll read out a bit of Kathleen's testimony, which she gave to royal commission. She provided a written submission to the royal commission. Jarrad had been through a lot. He'd been through a lot with Centrelink, I should say, trying to sort out a payment. He'd worked a bit on and off. It got to the point where she thought that it had finally been resolved and he was going to get a payment. They were living together at this time.”
“Even though I like to remind people that I had a life outside of politics, being a station hand and working construction, I did work for a senator for a few years before I got elected, just as the robodebt enterprise was starting to have its effects felt out in the community. It was something that I was trying to help people with as an electorate officer through a very complicated process where we were just stonewalled by the department and the government at the time. Some of the human consequences of that are what need to be kept in mind when we talk about this. It's something that I was familiar with, and I just went back to the royal commission itself and came across a statement of a woman who I haven't met before but who would be well-known to the community: Kathleen Madgwick.”
“I rise to make a statement in regard to the Royal Commission into the Robodebt Scheme, and, in some ways, the finalisation of what has been a truly harrowing process for individuals involved in this. The country really saw a situation where a government conducted an illegal enterprise. There is no other way to describe what they did other than 'illegal'. In fact, the royal commission found that robodebt was a cruel and crude mechanism that was neither fair nor legal, and it made many people feel like criminals. In essence, people were traumatised on the off chance that they might owe money. It was a costly failure of public administration in both human and economic terms. It was something that I was involved with at the time, prior to being elected to here.”
“We're out there taking effective measures; they're out there collecting data and asking for people's emails. We're out there acting in the national interest, and they're out there acting in what they think is their very narrow political interest. I would appeal to them to support this legislation. This needs to happen quickly. It needs to happen urgently, and all of the urgency that the other side have been talking about needs to be more than words. They need to stop making social media videos. They need to start acting in the national interest, and the best thing they could do would be start by supporting these bills.”
“I know firsthand, from working in construction and running a construction business, how important those fuel costs are and how important it is that we get those deliveries on time. So these pieces of legislation deal with that. They give certainty to truckies that they're going to be able to negotiate a fair deal that's going to be able to keep their trucks moving and get those materials delivered to site or the goods delivered to supermarkets. The other thing it does as well is it gives powers to the government and the ACCC to actually properly prosecute companies that are profiteering out of this. We know—as if the member for Cook was telling us something we don't know!—what is going on out there, but the difference between us and the opposition is that we're acting on it, and they're point scoring.”
“It really gets to the point where it's not worth talking so much about what this opposition is doing, because they have now got themselves into such a position that, out there in the community, they aren't even the real opposition. Please take heed of that advice and act in the national interest. Act like the sort of responsible adults that the people in our community expect us all to act like. It will pay political dividends as well as national dividends. This legislation is exactly designed for the moment. These two bills are designed to do two things. As the member for Cook indicated earlier—and Deputy Speaker Buchholz yourself, who was heavily involved in trucking, like my neighbour.”
“They worked with the government at the time in the nation's best interest. To give a little bit of free political advice to the opposition, do you know what happened to the Labor Party after we worked with the then government? We won an election because actually the smart thing to do politically is to put differences aside and act in the national interest. You know what Australians hate most of all? They hate division in this place at a moment of national crisis. I realise this is free advice, which is unsolicited, but you're going to pay. You're going to pay for it out there in the electorate for the stance that you're taking. Mark my words. It is exactly the sort of behaviour that has seen your party become a total irrelevance.”
“The member for Cook talked about the urgency of all of this, yet they're not prepared to act urgently. In fact, I remembered during those crises of the term 'to be alert but not alarmed', whereas the opposition actually seem to have it the other way around. They're being alarmed but not alert, otherwise they wouldn't be coming in here asking ridiculous questions of the government such as if they will co-ordinate a national response after they've already had a National Cabinet meeting. They would actually be on top of what's going on rather than trying to score political points. I have got to say, in my short 53 years on this Earth, there has really only been one national crisis that I have lived through, which was COVID. Do you know what the Labor Party did on that?”
“As a new member of this place, there's still so much that I have to learn. One thing I've learned over the last few days is that, when members of the opposition are talking from the dispatch box, they don't generally look around the room. They like looking in that direction, which I guess is so that they get themselves on camera, because, actually, all they're really doing is making a social media video. They're not really contributing to the debate that's taking place in this parliament—not all of them, of course. I think that what we're seeing here is a complete abrogation of their responsibility to take part seriously in this debate. So, to that end, I would implore them to support this legislation, the Treasury Laws Amendment (Doubling Penalties for ACCC Enforcement) Bill 2026 and the Fair Work Amendment (Fairer Fuel) Bill 2026.”
“My question is to the Prime Minister. How is the Albanese Labor government delivering on its agenda to secure a future made in Australia and boosting our sovereign capability? What are the risks to these important priorities?”
“The first thing I'd say is that I'm always open to hearing the contribution of the member for Kennedy. Speaking as somebody who's 53 years old, you've been in parliament—state and federal—for two years less than I've been alive. I think that, absolutely, you should be given respect. I may not have either! The other thing, too, is that you're a former Bjelke minister. You've been around for a long time and you've seen it all.”
“And there is nothing hollow about the reforms that we've made to superannuation, including payday super, as well as the changes to the LISTO that are going to benefit low-income workers to the tune of 11,353 people in Forde alone, 7,688 of whom are women—68 per cent. When you look at this government's record, it is a record of achievement. It is a record which stands in stark contrast to 10 years of neglect from the previous government. The Australian people should really be congratulated for making such an enormous effort to fix things up.”
“There's nothing hollow about building 206 public housing dwellings in Forde, in one electorate, which this government has done in one term, which stands in stark contrast to the previous government, which built 373 dwellings across the entire country in its entire term of 10 years. There's nothing hollow about lifting the number of bulk-billing GP practices in Forde—more than doubling them overnight through that policy, which was introduced in November—from nine to 21 practices. There's nothing hollow about a Medicare urgent care clinic in Oxenford or in Browns Plains. There's nothing hollow about expanding the Medicare mental health clinic in Logan and about setting up a new one on the northern Gold Coast.”
“That is so incredibly frustrating, because when you look at where this government is going, when you look at the record of this government so far on things that I campaigned on and was elected on in 2022, and was elected in 2025 to pursue—things like cost-of-living relief, housing, health care, energy, skills and mental health. When you look at our record in each of those areas, we are making progress. The previous speaker, the member for Dawson, spoke about so-called hollow promises, such as in energy, but there is nothing hollow about the default market offer coming down by 10 per cent, more than 10 per cent in South-East Queensland and even higher for small businesses.”
“I think what's going on in the world at the moment—in the Australian economy in particular—is an experience that we've all felt on a personal level. There's nothing like when you think you're starting to get ahead and then the car breaks down or the fridge breaks down and you get a bill that you didn't expect. That's how I feel it is in the Australian economy at the moment. After four years of Australians working so hard to tighten their belts and to bring inflation down, I feel that the world's circumstances have really set us back.”
“That rare diseases are not rare, even though it may affect five in 10,000 Australians—when you put it all together, there are probably 13,500 people in Forde alone who are suffering from a rare disease. It is by listening to the community and fighting for the community—and, I should say, doing what little I can to help people like Jess and Kerri fight—that we as a parliament can deliver. That's what this legislation does. It delivers certainty to people to go and get the diagnosis and undertake the testing that will potentially not just save their life but give them a quality of life they wouldn't have had otherwise. I commend the bill to the House.”
“It is essential that people have confidence that they can undertake getting that diagnosis without fear of being excluded from insurance cover. In the most severe way possible, criminalising it as an offence, not just making it a civil penalty, truly sends a message to insurance companies to do the right thing and, with that, to give people in the community confidence that they can get the cover they need. It is through that process and philosophy that I have in Forde to listen to our community, to fight for our community and to deliver for our community—this is a great example of being able to identify an issue which is much bigger than I would have ever thought before. As Kerri said, cumulatively, rare cancers put together are the third-most common type of cancer.”
“The alternative, through genetic testing, is that it can take weeks or, at most, months, and can cost anywhere from $1,000 to $7,000. Apart from the impact this has on the individual, the impact this has on the economy as a whole and on the productivity of the economy as well as the cost of the health system has got to be profound. In the last three minutes of my contribution, I will come specifically to why this legislation is so important. In some ways, you'd think that it goes without saying that it should be illegal and unlawful for insurance companies to use genetic testing against somebody to deny cover. But the fact is, in the community, there is a perception that the insurance companies will do just that; I don't know where people get the idea that insurance companies are untrustworthy!”
“We as a society are living in a time where treatments are coming onto the market at an unprecedented pace, every single month, and these treatments are often specifically targeted to the genetic testing, which is identified through that test result. By the way, Kerri climbed Mount Kosciuszko last year to raise $2,600 for Cancer Australia. It is people like Kerri and Jess Short that inspire me to get up here and talk about what it means to protect their right to health insurance through the law. The difference between going through genetic testing and going through a normal route of diagnosis—and there was a study done there—is, potentially, that going through the normal route is extremely frustrating. It can take up to five to seven years, and it can cost anywhere from $10,000 to $40,000.”
“The second is that, quite potentially, the private insurance which she has relied on to save her life would have been denied her—her condition would have been excluded—had insurance companies been able to use earlier test results to make that exclusion. The third thing that I'd say is that she's right to be advocating for the PBS. I feel amazingly privileged that I can be a voice for people in my community in this place. The Minister for Health and Ageing made the point today that, since we were elected, we've listed more than 400 new medicines on the PBS. Just as an example, he said that we listed a medication called Ultomiris this month, which treats a relatively rare condition called myasthenia gravis, which impacts only about 3,000 Australians but impacts those 3,000 Australians profoundly.”
“I did under the public system at Gold Coast University Hospital—that cancer care nurse was there to answer questions but was a reactive support service, not an advocate or a support person for myself and my family. I have had to seek out, resource and upskill myself in medical terms and knowledge bases, as I am sure you are hearing, because there is really no one out there who can do it for me. What stands out from Kerri Meulman's email is that, first, my contribution to this debate would be insignificantly small in comparison to the contribution that she is able to make to this debate, and so it is in her words that I think we sum up exactly what is going on here.”
“But do you know, the same protein that Enhertu is targeting in breast cancer patients, if I had breast cancer, I would have access to this drug at $31.30 each cycle. The national breast cancer foundation advocated for this drug for the 1,700 patients each year who have this same sequencing and need of targeted treatment through Enhertu, for this drug to be on the PBS. The power of a powerful advocate for a recognised disease. But I am left out of this as a rare cancer battler. Now Rare Cancers does what it can—rare cancers themselves as a combined cancer are the 3rd largest cancer group in Australia. But there are multitude of needs not one high profile group. And nor do I have access to a cancer care nurse.”
“Two pathways only were available—a clinical trial or private treatment. I tested for the clinical trial based out of Blacktown Hospital in Sydney, however my tumors were considered too small to qualify. Really I was a number to the trials people. By the time my tumors had progressed further, there was no spot available on the trial. So private was only available to me. Luckily for me, at a very young age, my financial advisor had set me up with a raft of insurances one of which I am now using to pay for the $10,000 it costs me for every second treatment, which I will have every three weeks for the next 2 years of my life. The treatment is working—I am 6 cycles in and there are no signs of tumors now. I literally had this news today, which is amazing and very exciting for someone told they had 12months to live.”
“She said she started listening to it, though, and wanted to put what she thought in writing: So thank you for the opportunity to have a voice!! A little about my rare disease—I was diagnosed in 2023 with a rare cancer—gallbladder cancer, luckily found after going to make my regular blood donation and for them to tell me my iron levels were too low, go see my GP. Long story short, I have been through a couple of surgeries, oral chemotherapy, then more intensive chemotherapy and immunotherapy when the cancer spread in 2024 all through the public system. I do have private health but the call was taken that under the public system I would be in more of an umbrella situation. Last year, my cancer metastasised again—and thanks to genomic sequencing, targeted treatment Enhertu was recommended as my best hope to beat this once and for all.”
“Arising out of the forum was an email I got last Friday, a couple of days after the forum, from another legend in our community, Kerri Meulman of Ormeau Hills. She is also a fierce advocate. I spoke to her today, and she's very happy for me to read out what she wrote to me. In this email, she advocates for the treatment she receives to be included on the PBS. There a couple of things I'll say on that at the end, but I think this really gives us an insight into what it means to have genetic testing to determine your condition. She said: Thank you for the opportunity for the session! Unfortunately after treatment and dealing with the M1 carpark for 2hours trying to get to treatment this morning, I was unable to attend in person.”
“She told me that there's very little transition care between childhood and adult services, meaning people can suddenly find themselves trying to navigate a system on their own. Jess isn't interested in blaming anyone. What she wants is something better for the future. She wants to advocate for people with rare diseases. She knows children with the same condition who are not getting the help they need, and she wants to help connect families and push for a system that works. And that's exactly why we held a forum last week. It was very well attended by the community, and there was a lot of participation and discussion online and in emails I received. I very much want to take the opportunity during this debate to shout out to Jess Short, who is a remarkable individual and a fierce advocate for people with these conditions.”