The 'Dispatched' Podcast
BioPharmaDispatch - discussing the issues impacting the Australian biopharmaceutical and life sciences sectors with Paul Cross and Felicity McNeill.
The 'Dispatched' Podcast
The 'Dispatched' Week in Review - 26 September
On the Dispatched Podcast this week, we reflect on the erosion of public confidence in health decision-making. Former Victorian Chief Health Officer Brett Sutton’s admission that some COVID-19 measures were not strictly evidence-based highlights the need for a Royal Commission, which would have compelled accountability and helped restore trust.
The discussion then turns to MSAC’s rejection of newborn screening for Pompe disease. Health Minister Mark Butler must intervene, not least because he has previously pledged support to affected families.
Looking abroad, Australia can look to New Zealand’s overhaul of Pharmac, particularly its decision to bring in external leadership and critics. It provides a model for cultural reform. In contrast, Australia’s system is mired in the same conversations among the same insiders.
The podcast closes on the Trump administration’s proposed 'Most Favored Nation' pharmaceutical pricing policy and the new 100 per cent tariff. The Albanese Government, they predicted, would adopt a wait-and-see approach, shaped by a long history of industry warnings about lost access to medicines that rarely materialised.
Hello and welcome to the Dispatched Podcast Week in Review. It is Friday, the 26th of September, Grand Final Eve, AFL Grand Final, for those of you who are interested. Not everyone will be interested. My name is Paul Cross. I'm delighted to be joined by my co-hoost, Felicity McNeil, PSM. Hi Felicity.
SPEAKER_01:Hi, Paul. All ready for your weekend of football?
SPEAKER_00:Well, it's even more exciting than that because it's also the Ryder Cup, which is probably the most exciting golf tournament in the world.
SPEAKER_01:I should tell your listeners that you are actually wearing a golf jumper right now.
SPEAKER_00:I am. I am. Ryder Cup, it's the US versus Europe, and uh yeah, it's a fantastic weekend. It's very hotly contested.
SPEAKER_01:So this is obviously because your team's not playing.
SPEAKER_00:Well, I will watch the AFL grand final. Unfortunately, I'm if I you know it's yes, my team's not playing, and the grand finals are a very distant memory for me. I did I did go to the last grand final Carlton played in. And you know what? Uh it was in a year before, it was 26 years ago we last played. In a in a grand final. So and we lost. So anyway, let's let's get into the week.
SPEAKER_01:Uh well, it's a public holiday in Melbourne.
SPEAKER_00:It is, so all those hospitality workers are getting paid really well today.
SPEAKER_01:Yeah, they are, and everyone's gone to watch the um grand final parade, obviously, because that's why you give six million people a public holiday so they can all show up in Burke Street.
SPEAKER_00:Yeah, the the the millions of Geelong and Brisbane fans.
SPEAKER_01:Remember remembering COVID when it was on the lake and on the Yarrow River and you were wade from the distance with our elbows because we must touch each other?
SPEAKER_00:Uh Victoria. Speaking of COVID, have you seen the comments from the former Victorian Chief Health Officer Brett Sutton about COVID and the lockdowns and the surface cleaning?
SPEAKER_01:Yeah.
SPEAKER_00:And his his public acknowledgement that maybe it w wasn't really based on medical advice.
SPEAKER_01:Yeah, and I it you know, well done him. I know he's also saying we you know, as a head of CIRO, and there'll be another pandemic coming, so obviously we're gonna need to give CIRO more money under the MRFF to research stuff, but it highlights um the really serious problem and the lack of confidence that these kind of statements will generate because they are not framed within a proper space. The Prime Minister promised us a like in all his election commitments in health, promised us many things and he hasn't delivered. And on this one, he gave away his royal commission so that three people that already worked in health could do a you know back of the envelope job and tell us what happened. And as I look at the disdain that many federal health bureaucrats show towards some of the senators who express severe concern about the vaccine process, this is why you end up with people being concerned about your public health advice. Because when someone feels comfortable enough to actually get up and go, Well, yeah, we probably shouldn't have done that, and well, that wasn't we were just kind of, you know, winging it a bit. This is when you undermine the concept of public health and the directions you give us. And if Brett is even half right and there's another pandemic coming at some point in time, no one's going to trust you, no one's going to believe you.
SPEAKER_00:Well, yes, the judicial process would have been superior, far superior to what they did, given they promised the judicial process, but it also would have helped restore public confidence in public health. And I don't think anyone can argue credibly that there hasn't been a decline in confidence. And that's manifestation, manifesting now as an outbreak of measles in far north Queensland. And that's problematic because I presumably it's directly linked to the decline in vaccination in children. And I'm that that upsets me. And I think a Royal Commission, as we've seen with RoboDebt and other things, is about restoring confidence and and righting wrongs.
SPEAKER_01:Well, as I've said many a time on your podcast and in many submissions to government um processes, we have the reforms that everyone is lauding today on aged care because we had a royal commission. Until we had a royal commission, the bureaucracy really didn't move. And that's what we need to understand. Bureaucracy tinkers and it defends and it it ducks and weaves. And it's the reforms that we have in aged care, the reforms we now have in Robodebt are only because we had a royal commission, which is the equivalent of appearing in court and having to disclose frankly, fearly, fearlessly, accurately, everything that was done and wasn't done and why. It requires handing over of all records. It requires it is complete discovery powers, and that is both liberating for a country. It is sometimes scary to understand what has transpired, but it then gives confidence to move forward.
SPEAKER_00:Well, it's a temporary judicial process which has the powers of the court. And so people can be compelled to appear. So instead, what we got was former ministers and other people giving written submissions to this review process but not being cross-examined on it. And I I think given it's the biggest public health crisis since well, in living memory, certainly since the Spanish flu, which unfortun unfortunately for the Spanish didn't even start in Spa. Correct. But I think it's we feel let down and uh it's not the only election commitment. I I want to talk about newborn screening.
SPEAKER_01:Okay.
SPEAKER_00:Uh because we did mention it last time and I got some feedback because some people were uncomfortable with me calling MSAC feckless losers.
SPEAKER_01:What MSAC?
unknown:Yes.
SPEAKER_01:Were uncomfortable with you calling them well.
SPEAKER_00:No, no, no, some people in industry were uncomfortable that I call them feckless losers.
SPEAKER_01:It just is uncomfortable if you say anything against the.
SPEAKER_00:And I think I think my response to them was, uh sorry, that's a you problem. You know, the the fact is that uh children, infants are gonna die and adults may die, but they'll certainly suffer as a result of this outcome on Pompeii disease, which was rejected because of this ridiculous fear of parental hypervigilance, which in the context of children wearing high vis jackets at playgrounds now is just an utterly ridiculous statement. There was there was a story in the age this week about a man around my age who has who who who first saw symptoms of a neurodegenerative condition ten years ago and he was diagnosed last October. That is why screening matters, because it's not just that we screen and identify children, infants who might be living with this condition at a very young age, but people can look for symptoms.
SPEAKER_01:They can, because it's a spectrum disorder.
SPEAKER_00:Yeah, and then where treatment is available to be treated. And Pompeii disease is a classic example of that where it takes years for people to be diagnosed because they're going to GPs who see symptoms such as fatigue and don't think for a second that it could be Pompeii disease. Fairly.
SPEAKER_01:Yeah, well, where do you start? And you know, it's the the frustration with that is the complete um contradiction between what's a problem apparently in Pompeii, but not a par a problem in other diseases. So we we can't be diagnosing you if it's going to be later on in life, because this is our newborn screening program, and yet we have we not only have we talked about that we have a physistic fibrosis, which has adult onset, and we have SMA, which quite clearly says when we screen your newborn, we will detect possibly infantile, but also we will detect later onset, which is why a lot of New Zealanders, I believe, flew to Australia to get treatment. Um but we also then saw two recommendations for other diseases, which we fully support, that said actually this is going to lead to we can't cut off between newborn and later onset. Oh, but that's actually really important. We'll just get parents to sign a waiver to say that they understand that's happening. It's like, what are you doing here? What are you doing with respect to is this just that you don't want a lysosomal storage disorder listed, or you just don't want Pompeii listed? So the when you talked about what do you call them? The feckless feckless losers. Just wanted to check I had the terminology accurate there. The the concern for me is people die as much as they live by the recommendations of our HTA bodies. So when you are going to effectively allow someone to die under your HTA system, you better be able to trust the consistency and the impartiality and the scrupulousness of those bodies. When you see the differing public summary documents for the three diseases considered as part of the newborn screening program that were released two weeks ago, you cannot have that confidence. I cannot trust that these um independent, I'm doing the air quote.
SPEAKER_00:She is very very theatrically.
SPEAKER_01:The independent uh advisory bodies are leaving their biases uh at the door because I can't read those three PSDs and have any confidence that that supposedly independent system is approaching something from the patient perspective, from the system perspective in a way that does not introduce oh, here's another favorite for the industry, unconscious bias or conscious bias. And I I believe there is there. I read those three PSDs and I am gravely concerned.
SPEAKER_00:They're so contradictory. Because first of all, let's just be clear about the choice they've made. The choice they made is that baby Nate, born today, would would live the same short, suffering life that he lived a few years ago.
SPEAKER_01:And they're fine with that.
SPEAKER_00:Yeah, that's the choice they've made. And it's completely it makes no sense. Any outcome they say, patients want this, patients want this, their families want it, their carers want it. No, no, we know what's right for you. So this would cost around 44 cents a child to screen. Yes, it would lead to earlier treatment because the treatments are effective and a degenerative condition, the sooner people are treated, the better.
SPEAKER_01:Yep, and they're also fine with people going on a diagnostic odyssey for 15 years and ending up on the NDIS instead of living a strong, healthy life, because they by the time they get the diagnosis, as you were similar to the gentleman in the age, by the time they get the diagnosis, the damage is done, it's irreparable. And it's all because we don't want to spend m money on a medicine that's on the LSDP, as well as we don't want to diagnose people older in life. But this is again the gross inconsistency, and why I have trouble trusting a HTA body at the moment, because the PSDs don't even acknowledge that SMA, which is one of the newest ones added, admittedly, without MSEC Advice.
SPEAKER_00:Well, against MSEC Advice.
SPEAKER_01:Yes. Uh has uh quite clearly says you can all read it on the New South Wales uh newborn screening website. It says we cannot distinguish with the first screening. We can work that out the second time around once we have the initial result and we progress from there. We do it with cystic fibrosis, we do it with ALD, we do it with all spectrum disorders. So the fact that they don't even include that, and they just have written this as an isolationary piece and about the threat that this represents to newborn blood spot screening with an a diagnosis of something that's outside in the the infant experience. I I'm I am gravely concerned because at least if if you're gonna say no, if you're going to have a thing, you should be really consistent and you should actually know the program and the diseases that are already on there. But it just reads like we just don't want to do this work.
SPEAKER_00:Yeah, that's exactly what it reads like. So we're making up reasons why we shouldn't do it. And those reasons that we use to justify our decision contradict the views of families and patients who've who live with the condition. And I I'm I'm I'm dealing, I'm like you, I have no confidence in it. I mean, the the out it sort of reads like, well, the way these committees work these days is that, well, you know, we we we're not wrong, you know, we're just so right, you don't understand. That you know, that's kind of you know, it's uh we are so right. The complexity of our righteousness is so astonishing. You you're not capable of understanding it. That's kind of the mindset. And and they're political, these are political outcomes, I'm convinced of it. They reflect an ideology that which we are not entitled, we have no right to to know or understand. And this is why Mark Butler should intervene. And what disappointed me more than anything last week is when I submitted detailed questions to his office, you used this family, you use this condition as a case study, as the reason for reform. You said never again. They flick the questions to the department to answer, and I didn't publish what the department said because they were beneath contempt. But now, maybe that reflects the minister's embarrassment. Maybe he's not comfortable with the outcome. Maybe behind the scenes he's saying, what the hell is going on here? But Minister, you use this family, you use this baby. You did, you use this, you use this family, and I think you owe it to them and you owe it to the other families who are now going to have children who go undiagnosed and suffer the conse needlessly suffer the consequences. But just to remind everyone, there are highly effective treatments funded for this condition. And they have been for 10 years, and people are still going undiagnosed, they are funded for pre-symptomatic treatment. And I am looking so not everyone, you know, was worried about the language, you know. So the sum of the feedback was very positive. So I want to thank those people who reached out, called me, emailed me, and said, I cannot believe this outcome. And I I'm I'm going to encourage people again, go and read it. In the same way you should read their outcome on spinal muscular atrophy, which thankfully Greg Hunt ignored. And Mark Butler should do the same on this. He's not bound by it. This advice has no standing.
SPEAKER_01:Well, we have asked him to do that. We've asked him to actually take that leaf out of uh the former minister's book and say, sometimes you know when it's the right thing to do and to when to ignore these people. We've given him the evidence that shows the inconsistency of the advice he's been given. And we've actually asked him to we believe, we try to believe, and I have to do that because I I won't give up on the patients that I work with and the families that I work with because you can't you cannot ask people to ha continue to have this fight and not stand with them to do that. So we have written and said you need to do this, you need to honour the commitment. I mean, he's met with these families, he's met with the Pompeii families, Pompeii sufferers and people who've lost children. He's met with them. He's taken photos from them of Nate and said, I will keep this and I will remember this.
SPEAKER_00:So Political leadership, Minister. You've done it on other things. Do it on this.
SPEAKER_01:Yeah, if you can do it on contraception and you can do it on buried in menopause, and you can can start endometriosis, you can do all these things.
SPEAKER_00:You can do it, you can certainly do it on this. Do it now. Do it now. Political leadership, you know, I was thinking about uh you know uh Medicines New Zealand have their value value in life summit in Wellington in a few weeks, which I'm very privileged to be speaking at. And um I'm conflicted because I love Wellington. It's one of my favorite favourite places.
SPEAKER_01:Uh because you have the amazing architecture of the world.
SPEAKER_00:Yeah, they're right on the wall. I mean, it's absolutely extraordinary. So I'm really excited about going and just seeing everyone, you know, Malcolm and Rachel and and and Graham. That is an example. They've still got budget problems.
SPEAKER_01:Yeah, well, anyone who reads it.
SPEAKER_00:Yeah, they got budget problems. But the culture, the work they've done on the culture inside Farmac, we can learn so much. They're bringing outsiders in. You know, there's the the new CEO, it's the first time someone has been appointed to that CEO position from outside Farmac. Sound familiar, anyone? So they're not just from outside Farmac, they're from outside New Zealand.
SPEAKER_01:Yeah, and and I think as you and I have been talking about this this week, it is because of political leadership. It's not because the organization itself decided that it needed to change. A new minister came in and said, Yeah, no, we're not doing this anymore, Pete. We're not doing it. And set that leadership in tone. And it's and it's it's impressive too, because I when you when you're speaking, the the thing that always caught me off guard when you had New Zealanders come over to talk in Australia was their concern that a minister might intervene or a minister might make a decision in respect of medicine access. And I'm like, I don't want an independent HTA body. I want my minister to represent the community and says that if I've got to go into cabinet, I want you to fight for my access to something. I don't want a fixed budget that sits over there with a group of people who say we just work it around and no one tells us what to do. Because it also pretends that HTA isn't a science and it's not. It's kind of voodoo economics. And we need to respect it for it being a guiding tool. And I think what um is it David Seymour is the He's the Pharmac Minister and Deputy Prime Minister, yeah. Yeah, and he's done an amazing job because he's just come out and said, nope, nope, nope, found the money, nope, nope, nope. And I appreciate the budget is a challenge for them. But he has demanded change in a way that we don't have here. We have a HTA review with multiple recommendations about Kaplan Meyer curves, discount rates, and comparators, which has nothing to do with City.
SPEAKER_00:You're so cynical. We got a guideline review out of the review. We got a sub-review out of the main review.
SPEAKER_01:It's like You're right, there's some more money going to another university to do another review. Right.
SPEAKER_00:It's like more reviews. Yeah, the consultants must be making an absolute fortune. But I I you're at this this idea of breaking culture, we have a lot to learn from that. Now, in Farmac, they've established sort of their consumer advisory group with a focus on culture, and they've brought the fiercest critics into that, chaired by Malcolm Mulholland. Includes Rachel and other people who've been fierce critics of Farmac. We can learn from that. I would have loved to have been at that first meeting of that group, it would have been absolutely amazing. We need to learn from that. What do we get here here in Australia? Consumer, what is it, consumer engagement committee that is comprised of the consumer representatives on the HCA advisory committees who are appointed based on panels proposed by one patient organization, which is the Consumers Health Forum. I'm sorry. And one of those people has been on PBS advisory committees for 23 years.
SPEAKER_01:Yes, and when they actually ask for applications, they say to people, look, we're going to support the person that's already on there, but feel free to have a go.
SPEAKER_00:Yeah, it's just it's absolutely it's a complete obscenity what happens here. And that is not a reflection on the institution on the individuals, it's a reflection on the institutions. It's the mace with no exit. We are so institutionalized in this system that people are incapable of conceptualising a world outside. I was on a panel a couple of weeks ago at the uh Private Cancer Physicians of Australia event with the chair of the PBAC, uh Meredith from Eurendocrine Australia and Liz from Medicines Australia. And without reflecting on any people there, but it just struck me how quickly the discussion descended right down into the weeds about HTO. And the struggle I had to sort of say, no, no, no, we just need a minister to step on the system. We don't need reviews or anything like that. We just need a minister to intervene and say, this is what I want. And it to me, I I left there going, This is why the institution struggles. So I'm not part of the institution really. I sort of look at it from the outside, and occasionally I'm invited in. And when I'm invited into the maze with no exit, it sort of all makes sense. Because there's zombies walking around, it's like the living dead walking around talking about certainty and uncertainty and Kaplan May curves and submission cycles, and you sort of go, This is why we're incapable of reform, because the conversation is so weird. So, in many ways, I think we have a lot to learn from New Zealand. And saying in order to really break this institution, we have to bring in different people. And if they've got to be from overseas, let's bring in from overseas. Let's stop having the same conversation involving the same people about the same issues.
SPEAKER_01:Yeah, and look, I don't even necessarily think it has to be someone from overseas. I think it just needs to be someone that's got a different opinion.
SPEAKER_02:Anyone.
SPEAKER_01:Um, as as we always talk about, um, you know, in AOS AICD, and if you do the course, you're supposed to have different skill sets and different opinions. If you're all in a heated agreement, there's something wrong. Likewise, no one's supposed to be on any governing body for more than, well, six to ten years, really. Um that that's best practice because you get caught and you stop asking the different questions, and your opinions drive rather than the uh fulsome opinions of the board that's supposed to be there and present. And I just think that no no one's no one's getting in, no one's getting a seat at the table except the usual people. We talk about this over and over again. The same people are talking to each other about the same issues. I think that um the the PAH stakeholder meeting, which you reported on again this week, too, where it's literally saying, let's all accept we don't have the money. Sorry?
SPEAKER_00:Yeah, sorry. Yeah.
SPEAKER_01:Um so can you just and and dragging clinicians in to say, well, you help us? You tell us, because then we'll say, Well, hey, this group of clinicians told us that we can go here, here, here, and here. So that concept that in health we don't have enough money, and so therefore, you you pick and choose.
SPEAKER_00:I wonder if the clinicians realise that that was just a gaslighting, bureaucratic gaslighting case, that they've just been completely gasly.
SPEAKER_01:And then they'll take it back to the company and say, Well, this is what we've got now. So can you now prepare a submission on this? We'd like a submission based on this, please. Um, I did laugh that um, you know, another good example of where our access to subsidy is just so far behind best clinical practice. And when I talk to a number of companies and patients about the future of access here in Australia, and and I know you want to talk about MFN, and it's probably going to be a useful segue. There are certain things that are happening now in Australia that we are actually falling behind on. We are becoming the New Zealand where our clinical practice, because of lack of subsidy, means that you're not going to get the next round of clinical trials because we don't have a comparable system for actually running that trial.
SPEAKER_00:Yeah, I that's what Pierre Claude, the interview I did last week with the intercontinental president, vice president of AB, um, in charge of like 49 countries or something, remarkable amount of countries including Australia. He said, Well, ultimately it's Australia's choice, which I think is a very well-made point. He said, But the problem is clinical trials ultimately become a problem if the treatment paradigm is not matching the rest of the world. I think that's that was a well-made point on MFN. Timely, because I just see uh the President Trump has made an announcement about a hundred percent pharmaceutical tariff from one October, which I think is next week.
SPEAKER_02:Yeah.
SPEAKER_00:For branded or patented products. You saw it, didn't you? Yeah, yeah, don't mean to read it. Yeah, yeah, why don't you read it out?
SPEAKER_01:No problem. Where is it? Sorry, guys. Um so starting October 1st, 2025, we will be imposing a 100% tariff on any branded or patented pharmaceutical product unless a company is Capital Letters, is building their pharmaceutical manufacturing plant in America. Is building capital letters will be defined as breaking ground andor under construction. There will therefore be no tariff on these pharmaceutical products if construction has started. Thank you for your attention to this matter.
SPEAKER_00:So uh there's uh I presume that that is him putting something out there to try and get some more commitments out of the industry because they've also announced something in relation to pricing and MFN. I think there's a new uh a new acronym for MFN. Uh it's been reported in New York Times. It's uh uh global benchmark for efficient drug pricing model, Globe. So they obviously had to spend they've obviously decided it was gonna be Globe and then they had to find the words. Find the words. Uh so there's a couple of things going on. I mean it's it's a bit incoherent because you're proposing to make pharmaceuticals in America more expensive whilst demanding that they get their they're they're cheaper, they're less expensive. So I'm not sure quite sure how it's that's gonna work. Um Right, so that's CSL basically, it's 90% blood products from Australia to uh the US out of the Broadmeadows facility, which is a very impressive facility. And for those of you who don't know, it actually made the AstraZeneca vaccine during COVID. Um so look, CSL, we'll we'll deal with that and we'll see. I think more broadly on MFN, you know, we wrote this morning that the government's gonna adopt a wait and see approach. This discussion has been had in Australia for decades with industry threatening not to seek the reimbursement of products in Australia as recently as 2023. Uh didn't really materialise then. And so the government, fairly fair to them, they're gonna go, well, we'll just sit and wait to see what actually happens. It's clear that Mark Butler's pretty concerned by it because he's raising it in all the discussions with industry. So obviously, you know, regardless of what anyone says, the Australian government does not want to lose access to the medicines it wants. There's gonna be some medicines it's pretty comfortable with losing access to, it's not really gonna care too much. Um, if they're follow-ons or what is often described as euphemistically as me twos, but if they're really good therapies, they're not they're not gonna want to lose those. And we saw that with uh Senophia's Jupixen. Um so I don't know, we'll s we'll we'll see. We'll see. But no doubt the threat of a hundred percent tariff will then set people off on some ridiculous public debate that's completely disconnected from reality about the impact on the PBS, given what we both basically don't really export actual medicines that I presume the vast majority of patented and innovative medicines in the US are probably made in the US. I suspect he's thinking about Europe.
SPEAKER_01:Yes.
SPEAKER_00:Uh and particularly the UK, and so we'll we'll see what happens, but no doubt it's gonna lead to, you know, doomsday scenarios in Australia about poor PBS.
SPEAKER_01:Yeah, and and I hope it doesn't distract too much because I think that I I see the MFN as an opportunity, but it requires the industry to actually follow through because we've as you say if they always get told we won't bring medicines here or we'll delist. And like I said, we had one delisting after the massive price cuts and then it was relisted. So I think those are the ones that scare ministers more. When you can't see a medicine that's not available here, you go, mmm, okay, that kind of sounds bad. But when someone see receives a notice saying, you know, you need to come back into your specialist or your GP because this medicine is being delisted from the PBS, that's the stuff that makes ministers nervous because that is when the rubber hits the road for them and patients feel the loss of access rather than the hypothetical potential future access to an innovative treatment that might be something they need ten years down the track.
SPEAKER_00:I I agree. I've had lots of company discussions with companies where they've said Yeah, well. Well, we've been told forget about it in terms of seeking reimbursement. And I think the public can't miss something they don't know about.
SPEAKER_01:Correct.
SPEAKER_00:And that means if the industry is not going to be vocal about it, then it may not be may not materialize as a political issue.
SPEAKER_01:Yeah. And and you you need to explain that to people. You need to try and prove to people that there was um listings that that were were planned to come but aren't. And you need to show the differentiation of that over time. They can't just say oh suddenly this is happening. So there's a lot of um sayings of things that are going wrong, but without actually the evidence backing it up and not, again, bringing the community into the conversation. I mean, if you explain to a patient, by the way, this is happening these in the last 10 years, these are the things that we haven't brought, and these are the things that won't be coming either, if you explained that to the community about what this MFN might actually mean for them, people will pay pay attention and pay notice. Um but it's also in the end that the rubber hits the road the moment you actually delist something from the PBS.
SPEAKER_00:Yeah, and and some of the medicines that we now take for granted, whether they're for chronic conditions or acute things like cancer, we would really miss them if they if they were they weren't there. And uh, you know, we talked about screening for Pompeii, the those amazing treatments for Pompeii that I think you put them on the LSDP, the first one on the LSDP.
SPEAKER_01:2011.
SPEAKER_00:Yeah, long time ago. And they've got better and better and better. So that's that's what we need to think about. But but we'll see. I I it's good that we're having a discussion. I think it's an opportunity for industry because it's consistent with the wider concerns many people have for the for the decision making in Australia. I welcomed Medicines Australia this week in their statement in response to questions that I submitted when they said, Well, yeah, the HTA review, we support that, but it's not gonna be enough on MFN. I was I was glad they said that because some previous statements about, well, HTA review, HTA review isn't gonna fix anything. And we need to understand that. But I think it's a it's it's a good opportunity. So hopefully we can elevate this conversation and have an honest uh exchange as a community about what we want in our reimbursement system and and what what price we are willing to pay to ensure that as we as Australians have access to innovation.
SPEAKER_01:Exactly. I mean it it is actually the I think you said it valuing life, valuing innovation. What what does that actually mean?
SPEAKER_00:Yeah, well, as I said at the PCPA event two weeks ago, let's break it down. The headline figure that we spend on the PBS is 19 billion. It might tick over 20 pretty soon if it hasn't already. Take that, take six out of that straight away. So we're down to thirteen because companies repay around six billion. And you can take another five out because that's that goes to pharmacy and wholesaling. Okay, so we're down to to eight. Around three goes to generics and biosimilars. So we're now down to five. So if I'm being generous, I think we can say that Australia is paying somewhere between five and six billion for innovative medicines, for branded, patented, newish medicines. It's not a lot. It's not innovative it's it's not a lot in a government health budget, state and federal, which is around 125. So Australians are spending one and a half billion dollars a year out of pocket on unsubsidized medicines, on the 100 million scripts that are completely unsubsidized, plus whatever they're spending on uh private market scripts. Obviously, weight loss and other conditions dominate that that portion. So we spend a tiny amount on actual innovation when it comes to our medicine spend. And that's that's what we need to discuss. Do we think that's enough? No. Do we think the government should be reckless? No. But we need to spend more. We need to spend we we need to we need to decide whether we want a good standard internationally comparable system of access to medicines, innovative medicines, or whether we want parsimony. That's the decision we have to make. And parsimony means suffering and death.
SPEAKER_01:Yeah, and as you've said um previous podcasts, the minister said for him it's all about getting the best price. And that's a very um dangerous way to talk. Because he's also said that you know he's he accepts that um MSAC has led to deaths. It's his HDA system is is costing lives. We have to break that open. And we have to break open the fact that the system has got so greedy in respect of that. Not only do they want the cheapest prices, but they don't want to fund it for all the people who were eligible. And that's the double whammy, that is the the dirty secret that's not openly talked about. So I used to explain that to hepatitis C patients about there's a certain number of medicine funded per year, actually paid for by the government. If you're in the first X thousands, the government paid that for you and you should thank them. But if you go over this number, you're getting this as like a complimentary service from the pharmaceutical company. It's like a donation because they have to fully reimburse or predominantly reimburse that drug that because even though there are this many people that need to be treated, the system says, I'm only gonna I'm only gonna fund these. And I think that's the thing that the industry has really lost ground on and hasn't been able to explain to the community what happens. So no one ever challenges that the incoming government brief where, you know, they said, Minister, you've you've funded$16 billion worth of medicines. Well, first of all, that's the gross price, both for the um published price versus the effective price, and second of all, before rebates. So they will say, Oh, you know, 340,000 people could benefit from this listing. What they don't include is the asterisk saying, but we're only going to pay for 120.
SPEAKER_02:Yeah.
SPEAKER_01:So the fact that the industry has never come out and said, you know, we really welcome the listing, but just to be aware that only 50% of this is funded, and we've just publicly say we've agreed that we will pay for 40% of patients ourselves. Like it's really easy to start doing to actually call it out.
SPEAKER_00:Yeah, explain it to people. Because people are quite shocked. They treat it like Smurf berries these numbers. I mean, it's absolutely crazy that there isn't a just a simple breakdown of how this system operates and what the consequences of that are. Because what what because companies are as corporate entities, they're really quite rational. And so we've seen it in the past where companies go, Oh, I need to stop educating doctors about how to administer this treatment because we're it's starting to cost us. Uh so and and people might criticize the industry for that, but it's an entirely reasonable position. If anyone thinks that a a company can lose money consistently on a on a product, it's absolute barking mad. But I think well let's go to the public health Marxists who dominated the discussion. I mean, first of all, Pennywong. Oh, here we go has just given the weirdest address about AI at the UN. Now, people do tend to check their brains at the door when they walk into the UN, but and it must be the most. I mean, feckless, yes, that's another another organization who could appropriately be described as feckless, given who gets a platform there.
SPEAKER_01:Given a lot of money to do a lot of talking.
SPEAKER_00:Yes, yeah, yeah, yeah, yeah. Uh I think in a hotel last night she might have watched Terminator 2. There's a bit of Skynet.
SPEAKER_02:Oh, okay.
SPEAKER_00:Because she's given this speech about AI saying that's it's going to lead to nuclear war unless it's properly regulated. Right. So what's the one what are you talking about? So it's the Skynet situation.
unknown:Okay.
SPEAKER_00:And that's one of my all-time favorite movies, by the way. But but it's just come on, just pump the brakes on this. But the UN hyperbole is not an unusual thing. A lot of people sort of a lot of the discussion at at uh at the UN tends to devolve into hyperbole, particularly directed at one country in the Middle East, by the way, and one group of people. But uh do you reckon any of these public health types ever saw a tax they didn't want to apply?
SPEAKER_01:Oh no, no. They're always loving it. I mean, that's how we've ended up in a debacle with um tobacco.
SPEAKER_00:Well, and that that is a that is a tough spot. That is a tough spot because obviously the the tobac the the taco tobacco excise will has doubled, I think, in the last five years. And what's appeared is illegal cigarettes. And so they're taking up now this massive share of the market. There's not enough policing resources to stop it. So every time they intercept a pallet of Manchester's or whatever they're called from China, they put on this big show. But they're obviously not scratching the surface. So I have some sympathy for them on that, but the excise has always been positioned and is continuing to be positioned as a public health measure. But at what point, and I know you can imagine the discussion within government about do we drop the excise as a way to fight illegal tobacco and the potential risk that it's actually increasing cigarette use.
SPEAKER_01:Well, I I don't think it's potential. I think it's actual because it's now so much cheaper to to access both vapes and cigarettes. And I know uh the ministers come out and said, we will not do this, it's a public health issue and it's a revenue issue. But it's one of the things that when you're constantly doing policy and you're not stress testing it, that you can just keep going, you just think it's a good thing. You know, it's a bit like although, wait, we can't believe it's not another version of price disclosure, which is now why we have higher prices for stock controlling, because everyone just got too excited with it and just it work, it's work, it's work. Let's keep going, it's keeps going, it's fantastic. This is another good example of that, where there was a fine balance, a very fine balance between the public health initiative, the revenue raising to dissuade the the access. But we've seen globally if you have alcohol taxes, if you have sugar taxes, they effectively become tax on the poor and people go without other things to afford to continue something that is a source of need or a source of addiction. And so you have to be very, very careful. And I think they kind of had it about right seven, eight years ago, and they've just they've overreached. And what's really hard for governments to do, which is why you often need royal commissions, because it's not just big G government, it's little G government, to work out that they kind of got it it started to go a little bit wrong and to pull back. There's nothing wrong with saying this isn't working.
SPEAKER_00:Yeah. Uh but the idea and there there is a there's this controlling mindset in public health policy that the way we're gonna stop you from drinking. I love a can of coke. You know me, I love coke. And bit of ice, can of coke, yeah. I love it.
SPEAKER_02:We're all just gonna sit for a minute, but you're all visualizing policies, can't you?
SPEAKER_00:Oh, I just love it. Uh and I love it from McDonald's too. But but it's I know it's bad. Uh but the uh like you can tax that all you like, I'm still having it. But the idea that, well, you don't know that it's bad for you. Well I know it's bad for me. It's like when I eat a burger, I know it's not good for me. But why do you insist on telling me what I can and can't do and lecture me and that your solution is to make it more expensive, which isn't gonna harm me, it's gonna harm poor people. It is just this appallingly regressive idea that the way these people are too dumb to know what's good for them. So we're just gonna make we're gonna try and take the choice out of their hands, the decision out of their hands, by making it more expensive for them. It is so unbelievably regressive, and it's it makes no sense because most of these public health ties will picture themselves as progressives politically. Yes, let's face it. If you went down to the public health areas of the health department in Canberra, I don't think there are a lot of coalition voters, to be honest. I think that's I don't think there are a lot of well, there might be one or two hiding away in there, and so the idea that we should punish lower socioeconomic groups by making their their small pleasures in the form of like sugary drinks more expensive is just so it's so appalling to me. And then to pitch it as a public health good, it's like you know what? The vast majority of people are still going to be drinking those drinks. It's not gonna make any difference, but it's gonna enable you to get more money so you can do more controlling policies. Stop lecturing us and controlling us. And we saw the the tip of the spear on that during COVID, where these people finally got to have their dreams come true, which is total control over our lives. You know, and these are these people are still talking about we should be wearing masks and we should it's just it's just madness, and now you get the UN, which as I said is a hotbed of bad ideas. I mean, the whole institution itself just needs to, you know. Have a rethink, rebrand, refresh. Have a rethink. You know, I did I did did you watch the Donald Trump address at the UN? No, I'm sorry.
SPEAKER_01:I did see the excerts in the various uh both foreign and local newspapers.
SPEAKER_00:Because all those these globalists, they just can't, they're multilateralists, they just can't get their head around going in saying what he said, whether you like him or not, it doesn't matter. It was very funny. And it is a dreadful institution, and um but the public health component, where it's like, well, we just have to make things more expensive, we have to make things more expensive. It's just so regressive. And I think no, go away. Stop telling us how to live our lives. Stop telling us how to live our lives and let people make make their own decision and trust us to know what is in our interests and what isn't. Because it's like it's like smokers. People who smoke know it's not good for them.
SPEAKER_01:Yeah, they do.
SPEAKER_00:They know it's not good for them. People who drink too much, no, it's it's it's not good for them. You know, tomorrow in the grand final, I'm gonna have a couple of whiskies. I know it's not good for me.
SPEAKER_01:Well, I don't know, it keeps your stress levels down. I know it's not good for me. That's also good for you.
SPEAKER_00:I know it's not good for me. But I'm gonna enjoy it while I'm watching the game. Switching between the right the golf and the A for grand final might be double screening it tomorrow. But it's but it's like just let us enjoy ourselves rather than copying these lectures from these people about you know, we're just gonna have to make things your Coca-Cola are more expensive for you. And it's it is the same, it is all a manifestation of the same ideology that you see in MSAC with the outcome on Pompeii disease. We know what's best for you, so just listen to us. And if you don't know, you just need to understand and appreciate that we know what's best for you.
SPEAKER_01:And we'll punish you. Yes, we'll punish you. So yes, um, and look, uh I'll remind the minister that he's on the public record already saying that he would not consider a sugar tax appropriate. So we'll see how that uh continues uh moving forward, because obviously we don't have the response yet to the uh diabetes inquiry from 2024, which did include a recommendation to institute a sugar tax, which was um had a dissenting report from the coalition on. So we'll see where that goes. But I do think it's a um it it it's a challenge because I think there's also PBSC is looking at the GLP ones, and so there is a huge risk in the country that because we do have um an a a propensity of obesity in the country for whatever reason, and it's always interesting listening and watching the testimony from the department on what is going on and what are the priorities under the I love that part of estimates, and I'm not gonna say what I want to say.
SPEAKER_00:And you know exactly what I want to say.
SPEAKER_01:I'm taking a very big deep breath right now. Um yes, I do. I I do, and I just encourage everybody to watch estimates, and you'll understand what Paul wants to talk about there. But there is a real risk here that with the GLP ones, and I I'm already concerned that I I've heard certain parts of the community and the industry saying, Yeah, definitely do a sugar tax to fund the GLP ones. And to do that is really, really dangerous and grossly unfair to the community.
SPEAKER_00:Already battling cost of living.
SPEAKER_01:Yes. Already can't afford the Tesla battery or the Chinese version of a battery, which is another you know, the the climate change subsidies, the the carbon subsidies that we get are another poor tax because you have to be able to afford them in the first place. The 30% is not a huge reduction when you still have to go and get a loan to pay fifteen thousand dollars for a battery. And by the way, if you live in a bit, you know, if you're renting or in particular areas, you you can't have solar power or wind power or sneezing power. I don't know what else to do.
SPEAKER_00:That is a that is a shocking public policy, that battery subsidy.
SPEAKER_01:Yeah, and meanwhile, the more and more people then go and get the the solar or the winds, you know, if you do your own work, then the uh individual providers keep putting up and up the cost of the electricity anyway to help offset that cost, they then reduce the tariffs for the feed-in so that you know people who are middle incomes and actually invested in that thinking this will, you know, equate itself in ten years. People are now paying the same amount for their electricity, even though they've got solar, than they that they were paying six years ago because the tariffs have gone up so much in respect of how much you pay to use power, and the uh subsidy for actually putting power into the grid has gone down. So we're very good at actually on an ideological basis justifying putting direct and indirect taxes on those least able to afford cost of living.
SPEAKER_00:Yeah, and that's that's where when I hear people talk about the sugar tax, is in the end, it just becomes, you know, the the the you know it's presented as a public health uh measure, like tobacco excise was all those years ago, and then it then it becomes the easiest tax to justify increasing, increasing, it's increased all the time, and then ultimately the people who suffer are the ones who who are the ones least able to pay, and that's uh poorer people. And I you know, I just think that's that's an it's an appalling policy. And by the way, uh can we talk about the GLP one thing quickly?
SPEAKER_02:Sure.
SPEAKER_00:I want I want people to think about how the PBS is changing before your eyes. You had this stakeholder round table on PAH. Yes, and what they what what is produced out of that is a this is what we're gonna accept. They then go to the companies and say, we want submissions on this. And what are they doing on the GLP ones? Yeah, stakeholder round table consultation, this is what we'll accept. Submit on that. The system is changing before your eyes. Is that people have always said, people have always lamented. Well, it's a submission-driven system, it's a submission-driven system. Why are they saying that? Why are they saying that? Now what they're doing is they're trying to upfront manage what you submit on and what you will not. This is what we will accept.
SPEAKER_01:Yeah, well, it's a bit like the one you were saying with dementia, where they're basically said, don't come back. Well, that's so yes, that they are very much um wedging the system and no one's collectively paying attention.
SPEAKER_00:Yes, the system is changing not to not not for any reason to do with the HTA review, and they are changing. So if you're a company, given that there's got a new chair and all these committees that you know, they they change. When the chair changes, the committees change. It is worth doing a big, big, big deep dive analysis of what's happening and how the system is changing. Yes. Because because it is, and uh, I don't think it's for the better. Some of the statements coming out, like the one from the oh the limited government budget, you know, and I said, where the hell did that come from? And and you know, Pompeii disease, obviously, that that sort of that sort of thing. These are the things we need to uh talk about because w where this this system is meant to serve us, not the other way around. Yeah, yeah. All right, is there any F1 this weekend, Felicity? No, no, because we've got the football Palooza informing the AFL grand final, and we've got the Ryder Cup.
SPEAKER_01:Yeah, well, I've got to win another one.
SPEAKER_00:That's four four days of golf. I've got I'm incredibly excited, and it's about to start too.
SPEAKER_01:That's Paul's subtle way of me. Can we wind this up? I'm out of here.
SPEAKER_00:I was like, I've got a whole day of watching golf, so I'm very excited about it. But thank you, Felicity. Uh, thanks everyone for listening. Hey, thanks for the feedback. Uh, because we didn't do a podcast last week, and I think we've got some feedback that people missed it. But we're back this week and always appreciate your thoughts. So do let us know, and I hope everyone has a great weekend. See ya.