
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 - 12 October
Has Senate Estimates devolved into an overly polite, time-sliced format that enables waffle, obfuscation, and endless questions taken on notice? Does this reflect weakened scrutiny? The responses provided revealed the truth of review processes, which aim to protect institutional power, blame outsiders for problems, and generally add complexity to existing problems. Few appear willing to say the quiet part out loud.
Hello and welcome to the Dispatched Podcast, week-ish in review. We're actually recording this a little bit later than usual because we wanted to make sure we could capture the full day of estimates on Thursday and the outcomes we wanted to talk about were quite late. But uh my name is Paul Cross, and I'm delighted to be we've got a new way of introducing people with honorifics, so I'm gonna let Felicity introduce herself.
SPEAKER_02:I'm not doing it, Paul. I am not that person. Felicity McNeil.
SPEAKER_00:What what? What but now officials now introduce themselves with their with their appropriate honours. Yeah, yeah.
SPEAKER_02:And and use them to defend against answers to questions.
SPEAKER_00:I I just broke I'm not gonna name the individual, but someone with an Order of Australia introduced themselves as name A.O.
SPEAKER_02:Yes, and then someone with a PSM said, Don't don't get upset at me. I've got a PSM for helping people. Um yeah, look, it's it's interesting because I think as you and I have talked about, one of the things that the courts specifically say you're not to do is to do that, to imply or to infer that because you have an honorific of some sort, that your evidence is either more valued, more respected, or shouldn't be challenged. So um I I do remind everybody that we are in Parliament and the same rules apply usually, although you're supposed to tell the truth as well, um in in Parliament. But uh turns out now we're just using it as a it's like a force field. The expected patronum if you're a Harry Potter fan.
SPEAKER_00:Well, it's the euphemistically saying, don't you know how good I am? Yes, and respect me and it's very insecure though, don't you think it's very insecure? I mean, besides the defence, but it's quite I mean, these honour honours should not be trivialized because they are actually very important. I think you can challenge a lot of the the people who receive them during COVID, to be honest. But but uh I I I do think they need to be respected, and and part of being respected is not abusing it.
SPEAKER_02:Correct.
SPEAKER_00:Not using it some sort of force field. No, it trivializes them. And and that that is a mistake because it that affects everyone who's received them, and I think some many of these awards are granted in the best possible circumstances to people who have given remarkable service to the country, whether it's in the APS, whether it's in the military or the police force. And so that needs to be respected, and then using it in your defence or using it to try and say, Don't you know how good I am?
SPEAKER_02:It's a miracle I showed up to this.
SPEAKER_00:It's like that old that old Yes Minister episode, where you know, because in England they've got you know GCMG and all the KCMGs and and and and the minister said, Well, what does all what all this stand for? So GCMG is like God calls me God. Yes.
SPEAKER_02:But it's but it's also you know, you and I have also been talking about the way estimates is run these days.
SPEAKER_01:Yeah.
SPEAKER_02:And there is no need to be defensive. Everyone is so polite, and you know, you've got your five minutes senator, and then you've got yours now. There is no The officials speak over the poll senators. They do, and they go, Oh, I'll have to take that and notice. I remember the good old days. Well, no, you can't. You're here all day. Get someone out in that ante-room to go and get you that information. And the way that officials have really mastered the art of we know you've only got your five to ten minutes, so I'll just waffle. So you even see senators saying, no, please, please, just yes or no. And they don't. They just ramble and ramble. And it's all about showing we're so polite and respectful, and I don't want to look like I'm a bully. I I really think senators need to go back to senator school and understand estimates and say your job is to represent the democracy of this country and to hold the system to account and to actually interrogate. And if someone is obfuscating or you are concerned about something, you shouldn't have to all be sweetness and light. I'd I'd encourage you all to go and watch a court. All right, I'd encourage you to go and watch a way a witness is treated, including a bureaucratic witness, and the interrogation, the pushing, the we all know part of it is theatre. Court is theatre, parliament is theatre. But this has become like a really boring soap opera.
SPEAKER_00:Well i yes, but the reason that is the case is because the the cross-examination, the person doing the the barrister doing the cross-examination has a duty, they're their primary duties to the court.
SPEAKER_02:Yes.
SPEAKER_00:And that's to do a really good job, whether they're prosecuting or defending. We'll set Nicola Gobbo aside here. But that that's where it's lost its way. Can you imagine John Faulkner? This is this issue is particularly specific, I think, to community affairs. Can you imagine John Faulkner, the great Labour senator, if after asking ten minutes of questions, the chair of a committee said to him, Oh, we've got to move on now, Senator, they wouldn't have even dared say it to him.
SPEAKER_02:But can you imagine Senator Di Natale?
SPEAKER_00:No.
SPEAKER_02:He would not have tolerated that. No, it's this committee is the problem. This committee is particularly weak, and I know that um over the years some committees have been much more robust and much more uh inter you know, an of an interrogating nature and and sometimes yes, a bullying nature and difficult. But the the the reality here, it's also that we've got estimates with, you know, we are now dealing with four major issues in two days. So we have health, we have ageing, we have a disability, we have social services and Medicare, and we're squishing all that in now into two days. And so the lack of even opportunity to genuinely interrogate the full portfolio, and I know you want to talk about doubly hard when you don't even have an annual report, but the ability for the parliament to hold the system to account and to interrogate and to look after the rights and the uh harm done to the community for failed progress on initiatives or even just doing the wrong thing administratively or wasting money or not even telling people. Apparently, we just don't know how we actually come up with numbers anymore. I mean, I know all know that we all try and not use the modelling and the costing. I wouldn't possibly have a clue as to how we got to that number. Um, and we've all done that as bureaucrats, how you're trying to get away with not disclosing that you modelled something, that you worked out how something costs. But I do think the Parliament needs to have a good hard look at itself and say, are we seriously saying now that I mean, why even put out a budget? Because if I put out a budget with four years worth of costings that says this is what it's going to cost, we all go, oh no, we don't know, we just it was just a vibe.
SPEAKER_00:So my my I I have a few issues with it. I ri I really loathe at the start of the day when they talk about a respectful workplace. The implication is senators, you've got to be really polite to these officials because woe is me, they've all got such a hard job. Okay, but then giving BS answers that's completely disrespectful to those senators and the parliament, and a lot of them are BS answers in the form of obfuscation or deliberate taking off in other directions. And some senior bureaucrats used to be very skillful at doing that without giving the appearance of doing that. That used to be a real skill, now they just refuse to answer. The other thing that really grinds my gears is when Senator Anne Rust and the shadow health minister submitted questions to the Secretary three or four days before the hearing and she gets the responses five minutes before the hearing starts. Yeah, that's not that is disrespectful. You talk about a respectful uh a respectful workplace. How is that respectful to our parliament? And look, I don't think we should go full US Congress, because over there it's just I mean, it is incredibly entertaining to watch. I don't know whether you watch the recent exchanges in those hearings between Cash Patel, the head of the FBI, and the Attorney General Pam Bondi.
SPEAKER_02:Yeah, I made some microwave Bob called it. It was just compelling.
SPEAKER_00:It was a real brouhaha. It was a punch on it, it was absolutely fantastic. But that's not constructive.
SPEAKER_02:No.
SPEAKER_00:I think there's a middle road, and we used to we used to we used to chart that middle road. The fact that Senator, it's so ridiculous. Someone gets 10 minutes, then they go to someone else, and they come back to that Senator. So just as they're getting up ahead of steam and momentum, the air's let out of the tyre. And and that to me is like, well, hang on, how does that serve the parliament?
SPEAKER_02:Well, it doesn't, because as a bureaucrat, you know, you you try and actually prepare going, I've just got to, you know, how many questions in a row can I respond to? Well, there are times there are issues that you know are going to be problematic for the government. And so how many questions can you answer in a row before you are going to get to a point where you're going to have to explain things more fulsomely? So, you know, always if you answer the exact question put before you, that usually gives you five or six questions. But when you're only being given 10 minute slots, and then and now a switch, you you're completely right. You take away the cadence, you take away the the two hours of being constantly under the pump of being, no, explain this. Explain it all. Because it's also the you the senator also loses their opportunity to understand the issue. We all appreciate that many questions that senators ask are not immediately from their offices, it's from a concerned, a concerned constituency who said, Can you know I want to understand this? And so they're learning on the rope. And what you're actually giving, when you when you break someone's cadence for 10 minutes, it's like, you know, if I asked you to learn something new and then stop and now we go and do something else, and then you have to pick up where you're coming from while they're trying to learn and actually get to the bottom of an issue to decide is there an issue here or not.
SPEAKER_00:Yeah, the and the the the the the the frustration for me is the constant backstop of taking questions on notice. As you said, there is an ante-room, there is a room that's got an overflow of a hundred health department officials, all waiting at the possibility that they will be called. Now, not all the not all of them are called. Tough, that's your job. You've got to be there. But the idea that in a world of like when I was working at Senate estimates, like there was basically no internet, that email had only just been launched, and we were losing using LOTUS notes, believe it or not. And so it was far more difficult. Okay, nowadays you see it, the officials and the senators are getting live feeds, live feeds from whoever is supporting them. You see that in senators revising their questions or going away and then coming back a couple of minutes later, and Jordan Steelejohn did that a few times on ADHD medicine shortages last week. So the idea that I cannot in that 24-hour period or in that day-long period acquire an answer to a specific question is just it's utterly ridiculous. And the frustration for me is that officials have been uh have grown accustomed to getting away with it.
SPEAKER_02:Oh, yeah.
SPEAKER_00:And not enough senators say, mmm, no, I think you should know that, don't you? And don't you have a room overflowing with officials who could go and get that information for me?
SPEAKER_02:And they are, and let's also be really honest not only are you appearing, but three-quarters of your staff are watching. So everybody's watching, and everyone's already sending stuff up. And departments on YouTube now. Yes, but departments, but they're just watching on on their their computers or they're watching in the breakout rooms and they're watching for their stuff because they all want to know is their stuff going to get asked about, and then they're all got to get ready to feed it up. And let's be really clear here like bureaucracies for 20 years now have had people in the ante-room and had computers back at the department, and the information is a constant feat. So, you know, if we can answer it, we can answer it. Because you, you know, you everything goes through phases. So there's the phases, you know, I've worked for a particular secretary who decided to take everything on notice. It was nine hours of just on notice, on notice, on notice, and we would end up with literally thousands of questions to answer, and that was their strategy. Then I've worked for secretaries who go, you know what? I don't want to be doing 4,000 questions. I want to answer as much as we can in the room and get it done. And we if we find something or say, we don't know the answer right now, let's see if we can get it to you. We'll we'll we'll send it back to the department, we'll find out and we'll come back to it. Helping the d the parliament. Then you've got the issue where you've got a bit of a hybrid model, let's help if we can, let's see what you know happens. But now we've just got this whole issue of not only am I going to obfuscate many people border on telling fibs, and we have a parliament and senators constrained in their ability to do their job. Like we we are literally denying the parliament the opportunity to do its job.
SPEAKER_00:Yeah. A couple of things to finish on this point. Speaking of obfuscation, the obfuscation of the annual report.
SPEAKER_01:Yeah.
SPEAKER_00:So I know that technically they don't have to release it to the end of the month.
unknown:Yes.
SPEAKER_00:But I always understood the purpose of this estimates period was to actually scrutinize the annual report.
SPEAKER_02:Well, you you'd like to, but look, I've worked in many a department who's, you know, appeared in the the 29th of October and still said, well, technically it's not too till the 31st. And you know, this is also the thing where departments are quite happy with that. They're quite happy to take the 15-minute rant and then wave.
SPEAKER_01:To get down the road.
SPEAKER_02:Whereas, you know, we perhaps all should be asking, why on earth are we holding Senate estimates now? I mean, I know it's got a lot to do with the fact that the Parliament's basically not sitting this year, uh, except for the odd, you know, show up post the election. But if you're going to do that, then the parliament and that the government needs to agree, well, let's change the timings that the the annual report is a legislative requirement.
SPEAKER_00:Well, it should be it should be released so I think it's scrutinised by the parliament.
SPEAKER_02:I think it's amazing it's suddenly available next week.
SPEAKER_00:Because by the time Yeah, that's what they alluded to, is that it would be it's not ready, so it'll be released next week. What are they designing the graphics or something? Because I know they are very focused on that these days. The other thing that surprises me about there's a lot of acting assistant secretaries in that department. Nothing wrong with that. But these are effectively EL2s.
SPEAKER_01:Yes.
SPEAKER_00:And there's a lot of EL2s, which for those of you don't know, is like a mid-level official acting in those roles who have been brought forward and compelled to answer questions.
SPEAKER_01:Yeah.
SPEAKER_00:And I I don't I don't like that. I think that's putting the senators in a difficult position, but also putting those mid-level officials in a difficult position.
SPEAKER_02:Yeah, secretaries I worked for would never ever have done that. Ever, ever.
SPEAKER_00:It's like depth sex FAS. That's it.
SPEAKER_02:I mean, I have no problem with um assistant secretaries, substantives. And you know, some of us used to do it in different departments and some didn't. Um sometimes you get a change if you're concerned about something. Um and that's when you see an artificial construct about who's allowed at the table. We should not be making acting assistant secretaries do that because the delegation and the responsibility is quite different. And I mean it's great that they feel comfortable to do it and everything, but let's you know uh it's not like it's actually helping us get any in information that's of relevance to the parliament.
SPEAKER_00:No. One more thing on estimates, uh uh and it's not a health one, it's not community affairs one, home affairs.
SPEAKER_02:Oh yeah.
SPEAKER_00:Stunning revelation this way. That whilst the Secretary of the Department of Home Affairs, Stephanie Foster, was on leave in January, her chief of staff it's kind of a recent sort of role in It's like the LDO, yeah, was referred to the NAC, the Nanti National Anti-Corruption Commission. What how is this not front page news?
SPEAKER_02:Yeah.
SPEAKER_00:How is this not front page news? And and she was n as my my understanding of having listened to it, and James Patterson did a brilliant job uh of just exploring this very fairly. The person wasn't named, they weren't identified. But the secretary was not informed while she was on leave that her closest personal staff member had been referred to who sees everything, it was referred to the knack. And I I found that absolutely staggering.
SPEAKER_02:But I think doubly staggering was randomly the dep seg who was acting as secretary during that time just happened to not be available this week.
SPEAKER_00:Yes, who would be yes, who was not available to answer questions, who would be known to people in health. But but because he used to work in health, I think. He did, yeah. So so that that to me was really problematic, and we need to we need to obviously innocent until proven guilty. That's a 500-year-old principle and and very, very important. But also we need to understand the circumstances here, and because it's very significant. That's obviously a person who has access or is privy to some very significant information. Now, it related to a previous role, but we don't know what that role was. So, anyway, I I th I thought that was interesting. But let's let's get back to community fairs. I want to first talk about had to wait a long time for it because the total interest that it was didn't start until about 9.45 at night on Thursday night. And the first thing we had was newborn blood scot screening and pompei disease, and I thought Senator Rustin did a fantastic job in highlighting the fact that uh hang on the Medical Services Advisory Committee has not supported this. We can challenge all of that. But the minister and other members of the government used this particular family to promote an election commitment.
SPEAKER_02:Yeah, they did, and you know, we've been a little bit quiet on this one for a while to just give the family and the the community of Pompeii some space, and also we all have written to the minister saying excuse my language, WTF. But very grateful to Senator Rustin on this one because uh when you have a commitment by a Prime Minister uh to a specific disease, when you have members of the government taking the photos of Nate and his mum and posting them and reposting them and using them, and then actually going, oops, so bad. I mean, it was really hard. The the ultimate cruelty this week was also the Prime Minister then posting that he was starting Priya's law, which was the law to he was going to introduce legislation to make sure that if a if a baby, um, this mother's baby, Priya, died six weeks after birth. I wonder if it was something she could have been newborn screened for. I don't know. Um, but the Prime Minister said, I'll never again, and I'm going to legislate and I'm going to make sure that parents that lose their children after they are born have the right to parental leave in the private sector as much as they do in the public sector or whether it's given by social services. Well, we're going to be asking the Prime Minister for Nate's law, because apparently, unless the Prime Minister legislates, we won't actually get an a commitment to an election commitment. And well done, Senator Rustin. But we are stuck in this point where, as she rightly pointed out, the bureaucracy is obfuscating. It says we've, you know, considered all these conditions, not one new one has been added.
SPEAKER_00:Not one. In three and a half years, not one has been added as a result of the process.
SPEAKER_02:No, but as the minister so proudly wrote to me, but Felicity, I've spent$107 million doing nothing.
SPEAKER_01:What's this money gone?
SPEAKER_02:I'm so proud of myself. There was more money in the final budget outcome, there's a few more million dollars put in there in the national health reform agreements for that money. I'm like, never has so much money been spent saving zero lives and making zero change to newborn. So again, Prime Minister, if you're going to pass a piece of legislation that says that in the devastating circumstance where a family lose their child, perhaps you could also legislate to say that I'm going to try and stop that by introducing the newborn screening I promised. Because what good is the money that I get my 12 weeks of maternity leave paid for if you didn't screen my baby and my baby died from a treatable disease?
SPEAKER_00:Well, and the officials obfuscated on a lot of the responses. Oh, Minister will now take the outcome forward to health ministers. Why? Why do the health ministers have to accept the non-outcome? Is that the process? I don't know why. It seemed like a lot of obfuscation to me. The fact is, there is nothing stopping Mark Butler doing what Greg Hunt did on spinal muscular atrophy and strong arming those states and territories to add this condition. The basis for this re for rejecting Pompeii disease was an absolute farce around this ill-defined term called parental hypervigilance, which I don't even I don't have no idea what that means. And and it needs to be rejected and set aside. And in fact, what they need to do, and we'll get onto this broader point soon, it would be worth people taking a step back and saying, what does this outcome say about this institution?
SPEAKER_02:But it's even worse than that, as as we've talked about, because there were two other diseases considered at the same time. And for what in Pompeii is hypervigilance, is in these other diseases, well, we'll just make it clear to them that they need to keep an open mind and look out for it. So everything that was used to say no to Pompeii was found to be okay and a a way to manage this in the health system for two other diseases. And so again, that also comes down to me, which is why? Why, why is there an inherent bias? Is there a, you know, what is it that the industry always talks about? My unconscious bias?
SPEAKER_00:No, you know, there's a couple of clinicians who don't support it. Yeah. And they're the they're the sources of the advice. It's conscious bias. That's exactly what's happening here. And it's just so outrageous. Now, I understand that in infant oncer, by the time those children are diagnosed, there's either extensive damage or it's too late. And it's often diagnosed uh uh after death.
SPEAKER_02:Yes, and and we actually expect that there are a number of children that die at a very young age of heart failure. And when a baby dies of heart failure and the trauma of having to have your child undergo an autopsy as well, they're looking for the heart failure. They're not looking for an inherited genetic disease. They often don't even bother to test for that. They just go, your child died of heart failure, it had a poor heart, as opposed to the fact that if you have infantile pompey, I mean, one of the great ironies of this was they said, well, you know, we can't tell if it's infantile or not. An x-ray would show you immediately if a child had infantile pompey because of the damage to the heart, which is instantaneous because of the way this disease works. And, you know, the other thing gets me very concerned is the the conversations about we need to go to genomics, we need to do, you know, this this broad spectrum screening. Now, first of all, that raises a whole heap of ethical issues. Uh how far are you going to go? Do you want to know if your child has dementia? Do you want to know if your child has a chance of cancer? But also these screening for genomics, they're not quick. They're not an instantaneous 24-hour kind of thing. They are weeks. And the problem with newborn blood spot screening, particularly for the things that are already on there, um, which are about lysosomal storage issues or whether they're about um PKU, these kind of diseases that very quickly a baby's body starts accumulating or not disposing of certain aminos, etc. 24 hours matters. But the time a child with infantile pompei has gone three weeks waiting for a diagnosis, or in Nate's case, seven months, the damage is done and it's irreversible.
SPEAKER_00:Yeah, and look, if look these advisory committees, there is no world in which I mean genomic screening screening at birth it's never gonna happen. Like if people who are arguing for this, if they're not gonna recommend the addition of conditions for which there are actual babies missing diagnosis whilst infants, why would they allow genomic screening to enable people to understand their future risk of a disease or a condition decades down the track? They're not going. I mean, can it's like what's I mean, you it's hard to get something worse than hypervigilance or super mega hypervigilance, I suppose that would lead to. I d I don't know.
SPEAKER_02:I I think they'd call it neurotic.
SPEAKER_00:Yeah, I I just it's just no way this the the the disconnect here between some of the uh public arguments that I have a lot of sympathy with and the institutional decision-making framework and the attitudes that dominate that. And m m moving on from that, and and another example of batshit crazy, what was an exchange about the HTA review.
SPEAKER_02:Sweet jell stand.
SPEAKER_00:So, so I'm I'm just gonna read read the exchange. It didn't go for very long, but it just tells us everything, everything we need to know. So, Senator Rustin started a discussion with the first assistant secretary, Duncan McIntyre. After an initial exchange that Senator Rustin found unsatisfactory, she said, So, are there any measures that you can point to that have been in relation to the HDA review that have been announced as part of the September announcement, Mike Butler's at Farmors, that will lead to immediate, faster access to medicines for patients in Australia. This was the response, verbatim. Well, Senator, they do support that. For example, the minister announced that the PBAC would begin a rolling review of its guidelines. So the PBAC review in itself, it's it's it's assessing its own homework. Starting with those most important for sponsors in directing their application submissions, if that guidance leads to greater clarity for sponsors, we're going to come back to that phrase, they will be better positioned to submit applications for PBAC, allowing for more straightforward scrutiny. And that would in turn improve the ability of sponsors to accept the recommendations that PBAC might have. So it's not going to be a one-to-one, straightforward process that we can do a particular thing and that will then straightforwardly lead to faster access. Okay. But what we are doing is we're addressing those areas that have been identified as pain points and seeking to make those pain points easier for pharmaceutical sponsoring firms to address. End quote. Okay. Industry, you're the problem. Do you it's it's after three, three and a half years of this review, the launch of a subsequent review by the people who are broadly identified as the problem, uh the solution is you just need to get better at your submissions, and then you'll be better equipped to accept what what we're telling you to accept.
SPEAKER_02:So there's I was going to, I didn't watch it, so I'm wondering if that was all said with a straight face by uh the first assistant secretary. Well done. Like seriously, well done. That's awesome. So I just read that as we could cut through everything because what the hundreds of pages of guidelines and they're going to make it clearer about the pain point. Isn't that just cheaper prices, dudes? You're the problem.
SPEAKER_00:If you if only you just make it cheaper.com. If only you understood what we need you to give a cheaper price. A cheaper price. So we're just going to make it easy for you to understand that. Now, I suppose there is a world in which Mark Butler says, no, no, no, no, no, no, no. We actually need some meaningful change here. There is a world. But but people need to sort of think about this system like Terminator 2 and the guy that every time he got shot, he just like reformed. That's what this system is like. Every time it takes a blow, it reforms, which is why the debate is so frustrating for people like you and I. Because the debate on comparatives is in its fourth decade. I mean, this is the longest war, right? They talk about the longest war. This is by this is like this is this is like a hundred-year war between the English and the French. It's absolutely crazy that this discussion goes on. And you know, the way the way I characterize this is that the the primary problem is that people don't really imagine this as an institutional framework of moving parts. Too often the government advisory committees and their supporting officials are seen as the sort of neutral servants of this sort of vague public good, ill defined public good. They're not. They're a vested interest. They are a vested interest like everyone else. They wield significantly. Institutional power within this sort of framework, but they're not altruistic. Okay. They want part of a complex network of competing interests. They just happen to have all the power. Now, generally the stakeholder response is, and this remains true, is to acquiesce to that competing interest, which is the government, their advisory committees and officials. And so in doing so, what they do is they legitimize the status quo. And this often makes it worse. And we are in the process of making it worse with this HDA review, which is why you and I've always gone, this is not the process, guys. Because someone in a in a framework like this, the person with all the power is always going to either protect that power, act to protect that power, or to make it stronger. And you see that happening now, is it basically they're like the Terminator 2 guys. Every time you hit them, they get stronger and stronger and stronger. Because the only real solution is for that vested interest in this institutional framework is to give up their power. And they don't, they don't do that. They instinctively don't want to do that, which is why dictatorships are so hard to overthrow. Because why would I give up power when I absolutely don't have to? Now, if you joke me kicking and screaming to it, I will. But this is this is a real, real problem, is that the people with the power always want to maintain their positions. And the people who don't have the power but are within the institution want to maintain their position. And it sets up this horrible dynamic where government says something. And I'm in a position where the people who advocate most strongly for the HTA review, and you talk to them and you say, Can't you see this? Can't you see this? But it's like having a debate with someone who believes the earth is flat. You can't possibly convince them otherwise. It doesn't matter all the evidence you show them, it doesn't matter what you say, they are so indeed to this idea is that in order for them to admit that I actually know the earth is actually round, they have to delegitimize everything they've been doing recently. And this is true of the HTA review. For people to admit publicly that this has gone way off piste and this is not what we want, and not only is it not going in the right direction, arguably it's going in completely the wrong direction, it's got to delegitimize the process that people are so invested in. Comparators are never going to get it done. And the idea that that is the diagnosis of the problem is incorrect because that is a manifestation of a power of a very one-sided power network. And that's the thing that you have to attack. And if you're not willing to attack that, then let's stop talking about major reform. What we're going to get is high complexity in the entrenchment of the institutional framework and tinkering with technical processes that is not going to lead to meaningful, meaningful outcomes. And that to me, you know, I have to say, I think the people who argue that compare we just have to fix comparatives and the system will get better. That's not advocacy. It's it's it's acquiescence and re-reinforcing the status quo. It's not advocacy. People think about it too tactically and they don't think about it strategically. And that to me is deeply problematic.
unknown:Trevor Burrus, Jr.
SPEAKER_02:It is. And I think as you and I were uh informed during the negotiation of this current agreement, that there were people that were seeking that let's independently stop. This is not working. This system is not working. We want uh a strategic, philosophical look at this. And they were very quickly beaten down to you can have this review, which is what we wanted anyway to use. It's why we've got, you know, pricing pathways that lead to inherent delays for patients getting access to things that um because the system and those who are negotiating with the power brokers accept their terms of trade. And, you know, we you can talk about will we see someone like Mark Butler intervene? You know, you you want to talk about how the system, you know, climbs up and controls a minister. Let's think about the fact that he said on Neil Mitchell, the system I'm in charge of is leading to people dying. He he said it. And the system itself came up and reached up and held him down. Oh no, no, no, no, no, don't you do that. We won't be able to protect you. Something's gonna happen if you don't we won't be able to protect you. And ministers fall for it. And I think what we've also got a problem with is that people are still engaging with the system as if it's the system from 2000 or 2005, which is when it was a system that could list without limit. It didn't have to offset, it worked flexibly, it was allowed to run. It was actually a system that liked listing more than not listing. I know there were some terrible examples of the really expensive stuff, which started to create those tension points. I think it was um the the Ike thing from Nevada, so it was particularly the bad one. And it what happens now is that the people that sit across the table from you, Duncan McIntyre, the first assistant secretary, doesn't represent you or patience, or even the minister. He's representing finance. He's a vested interest. His problem is that he doesn't want to have to go cap and hand and go, Oh no, I need more money. No, I need to, I know I need more savings. I know I need more of this. Their vested interest is you are always perceived as being the area that keeps spending. You you meet three times a year, you keep spending. Every treasury and finance official would love PBSE to be once a year. Does once a year fit into the budget process, we can control this whole, you know, we list every month, like what the that's the system doesn't want. And so you're right, it it knows its interlocutor very well. And unfortunately, the industry is quite weak on, oh, we'll go with that. We'll we'll take something rather than nothing, because you've been dealing with it for so long. So maybe this time, maybe this time, it's that false hope, like you know, when kids hope they're gonna go to Disneyland, maybe this time we'll get something. And the system is very good at whining and dining and coercing you into thinking something's going to happen, and in the end the system gets what it wants, hence pyth, hence pathways. And you see these moments, it's like I I really like and hoped Trump would do something because it's that moment of where a system says, Well, we're just not going to list, or better still, we're going to delist. It's only when you take something away that ministers react. They don't care about new listings, really. Like, you know, we get the odd bit of agitation, but most of the time they can they can weather it for you. I've got this independent person.
SPEAKER_00:They can weather it, yes, they can weather it.
SPEAKER_02:Whereas if you delist stuff, then they get terrified. I mean, you look at again, Mark Butler had a bit of a conniption when an insulin was withdrawn and then replaced. But those are the moments that make uh government scared is when they take something away. It's like, you know, how hard was it to take away the COVID payments? How hard is it to take away um money for bats, all these kind of things. When you take money away, when you take entitlements away, that's when the community pays attention. It's where you can get away with newborn blood spot screening at the moment, because the only people that know are the people that have lost their children.
SPEAKER_00:The the advocacy around this is so not where it needs to be.
SPEAKER_01:Correct.
SPEAKER_00:That the government is happy to have a conversation with you about comparators and discount rates because it's easy. It's so easy to defeat. And they also know that the industry will accept added detail and complexity. And look, I I'm I'm not I don't want to be critical of any particular organization or individuals. All I'm gonna say is that in the the industry's position to me seems best characterized as well, I don't know what it is, but I support it.
SPEAKER_02:Sorry. That's but if you think about it, that's exactly what it is.
SPEAKER_00:Like I don't know what it is, but I support it. And and this is the prop this is the problem, is that because they don't think about it in policy terms, they think about it in terms of technical inputs and process, which is not policy. That it's the policy framework that's that's an issue here. Is it the idea that officials and advisory committees somehow represent some ill def you know public good, they're not, they're a vested interest. And that's even that's a hodgepodge of interest they've got. And we we just need to understand that and act accordingly.
SPEAKER_02:Because as government, we can use your vested interest against you as well. So one of the biggest problems is that most people who tend to be working on the policy are also working on the market access. So every time you come into a room with me, I can look at you and say, Yeah, but this is about your product.
SPEAKER_01:Yeah.
SPEAKER_02:That inability to disassociate and to have different people working. And I also understand that market access people eat, sleep, and breathe, and they want to help patients and they understand the system better than virtually anybody in their organizations. But it's like in government where we separate the program operators from the policy negotiations so that we can try and stretch and understand and work out what we need to do versus what the person who eats, sleeps, and breathes that program wants me to do, which isn't always in the best interest of the government of the day. So that is, I think, the eternal capture moment. Uh, and I'm not saying it's for everybody, but there are a lot of people that can't split those roles in their day-to-day business and don't have the strength and the experience to split that role when they're in front of the bureaucracy. Some of them can. Some of them can sit there and know that this is my portfolio and you can't use it against me while I argue about a broader issue. But there are many that just come in and we circle through it. And then because individual companies come through and focus on what they need and what they will agree to, and we all know it, they'll agree to it, and then I can use that against those who are negotiating on a policy level, whether it be from an industry organization or a group of companies who have a common view. And I think that lack of independence of thought, being able to say, this is what I have to do, that the confidence to say I'm willing to let the system kind of go off the rails for a while to actually get the better outcome.
SPEAKER_00:I think it's very hard because you know, I to me fundamentally, the PBAC is conflicted in reconsidering in its consideration of resubmissions.
SPEAKER_02:Correct.
SPEAKER_00:And market access people are often conflicted as well because they're incentivized to get the product funded. And so they might be willing, and so they might be willing to agree to things that actually in the long term don't make a lot of sense. But that's the way the system works and the way the institutional framework is established, which is why I argue that it's wrong. So in last week I wrote that well, we we need to look at the TGA uh and we need to look at uh OECD standards for decision making here, because the certainly the PBS NIP decision making is in no way consistent with what with consistent with what the OECD would call best practice. And people say to me, Yeah, but Paul, they're never gonna do that. Well, yeah, they're definitely never gonna do it if you don't argue for it.
SPEAKER_02:Correct.
SPEAKER_00:Because they're definitely never gonna do it. And that that that frustrates me is because you know, there's a lot of smart people working outside the institution, but there seems to be this sort of misunderstanding of how the institution operates intellectually, and that it's a system of power asymmetry, and the worst thing the institution wants, the last thing it will ever accept, is power symmetry, is giving up that power, which is exactly why you have to fight so fiercely for it.
SPEAKER_02:You do, and you know, I think about that lovely woman in Victoria this week whose teenage son died of meningia cockle pee, and said, I didn't realise that he'd been vaccinated against all other versions of meningia coggle, but not mening cocklee.
SPEAKER_01:But not the one that actually means.
SPEAKER_02:And I didn't realise that the only people that get vaccinated for meningia cockle pee are First Nations children under five, uh, and there's teenagers. And her saying, I I don't understand like why one child and not another.
SPEAKER_00:And it's another postcode lottery, though, isn't it? Because some states are doing it. Yeah.
SPEAKER_02:Some states will will pick up the slack and some won't. And then we had the usual advice from, you know, the department. Well, we cannot do anything unless it's got a positive recommendation from the PBAC. And then we got other statements from the minister's office saying, well, you know, I rely on the independent advice, blah, blah, blah. And then I reflect back on when these various things are listed, and companies will individually privately complain about something. And then every time a minister announces it, they'll stand there and celebrate the compromise. And I looked at that again this week and went, there's a mum that lost her child for no reason. Because A, no one wanted to admit that she, you know, we don't educate the community that most people think when they're getting meningo cockle vaccination that they're being covered, but they're not being covered for the predominant strain in Australia, and we don't educate. Now, she also said I probably couldn't have afforded it, but I would have, if if I if I could could have, if I'd made the sacrifice, I I would have found the time and the money to do it. But we didn't inform her because we don't regularly shout from the rooftops. You do realize right now that most of you are missing out because we welcomed the listing. And that's the hard part for the system, is that you know what, if you're gonna get your listings anyway, you don't need to celebrate. There's occasionally you see some really great statements from companies, and I've seen a few and in your um publication who've both either decided not to welcome a listing, just gone quiet, or being honest with the community that they're not proceeding with a recommendation and why. And we need to do more of that. We need the community to understand what's actually really going on, but you're not letting us in because you're doing these deals on comparator erosion and discount rates. And that doesn't matter to me.
SPEAKER_00:Well, it well, I I I notice a couple of companies have said nothing recently and their medicines have so you've seen the Ministerial Release and the companies have said nothing. Uh so so kudos kudos to them. Yeah, I uh the comparator and discount rates because the the thing the thing that gets me is when I speak to people, and everyone knows this is going nowhere, because the thing about the HTA review, certainly on comparators, is it's been completely consistent for three years. In its options paper and in its final report, it basically said we just need to clarify the language, add more complexity, and in the system, as I've written recently, what happens in an institutional framework is that complexity leads to exacerbates the problem.
SPEAKER_02:Yes.
SPEAKER_00:Okay, so that's bureaucratic theory, so that's established, and we see it in this system with the submission pathways, which were meant to streamline the listing process, and actually listings now take longer as a result. So that's the likely outcome here, is that it might make comparator the comparator issue more more difficult for companies. But I speak to people who are in the institutional framework, and I know I say there's ad nauseum, but it's actually very hard to have a conversation with them.
SPEAKER_02:Yeah.
SPEAKER_00:Because they kind of have to believe. It's the well, I don't know what it is, but I'm gonna support it. It's and that that to that to me is problematic, is that I know there's some work being done in the industry at the moment on comparators, and it's got it's just too late. It's way too late, and it's not the problem, it's actually not the problem. The problem is the the power relationships that dominate this system, and unless you get your head around that and attack this system going forward on that basis, forget about it. We need to start being honest with people. And so when Mark Butler, many patient groups and many advocates were very upset by what Mark Butler announced at Farmos, they were upset on the night, and I was saying to them, but what did you expect him to say? He's he's he is reflecting what was recommended to him in that HTA review report, and I'm convinced that he probably got up on that stage and thought everyone was gonna cheer him for it, and they didn't. He got a few claps because that's what you do in this system. So that that to me is the problem. Now I know people are in deep in these processes, and it's gonna be hard to extract themselves. But all I can encourage them is to stop commissioning reports on issues that are never going to move. These reports exacerbate the problem, they don't make it better. And until you get you get your head around that and start trying to change the conversation, get the conversation on ground that makes the institution uncomfortable, which is about the lack of equity, the lack of fairness. If you want them to be comfortable all day, all week, all year, you get them on discussions about technical inputs because they never lose that. They're like the Harlem Globetrotters against the Washington Generals. They never ever lose and they make you look stupid. I'm sorry to say it, but they do. And we saw that writ large at Senate estimates on Thursday, when basically the exciting future reform articulated by senior health department officials was unfortunately, you guys haven't understood what you need to do so that you can accept what the PBAC says. So we're gonna make it easier for you to understand. And once you do that, everything's gonna be like Smurf Village. And everyone's gonna be picking Smurf berries. Yeah. That's what it's gonna be like. And until you get your head around that, there's gonna be a lot of disappointment and a lot of wasted energy directed at the wrong things.
SPEAKER_02:Yeah, because when I talk to people in the industry, it's not comparative arrangement and discount rates, you know, it's a contributing factor. It's risk share arrangements that don't acknowledge that there's a genuine population level that needs treatment and the absurdity of those risk share arrangements. It's about for me as a patient, that being an inhibitor to listings. It's for me as a patient that this system can just go through this dance and this go slow of submission churn of hundreds upon hundreds of days of access waiting. Whereas we can be in other countries where once it's here, it's happening, and we we have KPIs and we're like one way or the other, we're sorting this within a hundred days or whatever people want to do, or one day in Japan, etc. But I I've I'm I'm flabbergasted that that's the conversation. Surely to me, the conversation is risk share arrangements. If you're going to pick a micro-level issue, wouldn't it be the biggest one in town? The one that creates all the problems with your invoicing, the one that creates all the problems with pharmacy, the one that creates the problems with people not even listing or threatening to delist. I mean, I would have picked something slightly more, I don't know, something that could actually change the decisions that proceed with a listing.
SPEAKER_00:Yeah, but the risk shoes are symptomatic of a power framework. It's very one-sided, right?
SPEAKER_02:I completely agree.
SPEAKER_00:Yeah. Uh okay, so that's yeah, estimates. Um, we have Big Event New Zealand this week, the Value in Life event hosted by Medicines New Zealand in Wellington, two-day event. Put on a great show. New Zealand is a classic example of the solution, actually, it's pretty simple. If you invest more money, you know, so if you take more money to the supermarket, you can tend to afford more groceries. And on New Zealand put that$600 million in, that additional$600 million in last year, that was spent pretty quickly, but it did lead to 40-50 new funding decisions. So it's not complicated. If you free up these systems in a way that's responsive to patient demand, they can be incredibly responsive. Now, unfortunately in New Zealand, while they've done a lot of work on you know, sort of that one-time injection and done a lot of work on the culture, they need more they now need more money. They're in that situation where more money is required.
SPEAKER_02:And I think that's the difference for us in Australia, which is if you can get through the system, we will give you the money.
SPEAKER_00:Yes.
SPEAKER_02:Whereas New Zealand was get through the system, still no guarantee. And so it's a different tension point. So once you get through all the hurdles, we will give you the money. But that's why we make the hurdles so hard and we make it go so slow. Because we know you have to hand over the money at the end. And we have a far more robust economy, we have greater sources of revenue than New Zealand has. We can spend, we can invest in health, and we can make it easier to make prevention of hospitalization easier for the community. So while everyone's negotiating negotiating their national health reform agreements and how much money we're going to put into the hospital system, we could be putting more into the primary care system, which is preventing people ending up in hospital. As like you've said before, that magic thing about, you know, medic medicine misadventure and hospitalization in Australia was not about the fact that you were using too many medicines or the wrong medicine. It was the fact that you didn't have any medicines.
SPEAKER_00:The the greatest adverse event, you know, though I took it, that was a classic example of why you need to look at the footnotes, because the the worst the single greatest adverse event in medicines is not taking medicines.
SPEAKER_02:Well, at least it was a real footnote as opposed to um Deloitte's and their um fake reports.
SPEAKER_00:So yeah, so I the NHRI stuff is just I mean, so so everyone knows. So all the premiers and chief ministers are doing tag team in their local press, beating up on the federal government. I get it. This is not you.
unknown:No.
SPEAKER_00:This happens every few years. It's been happening since the 1990s. Ever since who I can't remember which government was decided, well, let's let's negotiate five-year funding agreements. So it set these things up in those terms.
SPEAKER_02:And so this is certainly not new, but it uh But the industry could learn a lot from how premieres conduct this.
SPEAKER_00:That's right.
SPEAKER_02:They take no prisoners in order to get the best outcome for their treasury, for their people, so they've got the money to spend some money.
SPEAKER_00:They have that massive baseball bat called the NDIS.
SPEAKER_02:Yeah.
SPEAKER_00:And which is obviously going to dominate Mike Butler's life for the foreseeable future. For the foreseeable future. But thank you, Felicity McNeil, PSM. I know for those of you when we were preparing for this podcast, I was desperately trying to convince Felicity to introduce herself with her honorific. And she didn't tell me she wasn't going to do it, so I'm a bit grumpy about that. But because I was trying to set it, join the new standard that we have in the Senate now, which is that people introduce themselves with their honorifics.
SPEAKER_02:I hold myself to a highest answer, thank you, Paul.
SPEAKER_00:Uh thanks, Felicity, and thanks everyone, and good luck to uh the Medicines New Zealand and their event this week. They've got Malcolm there, Rachel, Smalley, people who I I admire just incredibly.
SPEAKER_02:They've got you there, haven't they, Paul?
SPEAKER_00:And everyone knows that New Zealanders love nothing more than Australians telling them how to do things. So that's going to go really well. And so that will be interesting. And I just also want to give a shout out uh to some people who sent me some very kind messages uh this week following Yom Kippur and some things I said on last week's podcast. I got some very thoughtful messages, uh, which was a real departure from the knowledge. And uh I just want to thank those people for that. I won't name them, but they they know who they are, and I just wanted to let them know that it was very well received and appreciated. And well, and let's see what's going to happen over the next 48 hours. Be fair to say, I'm, as you know, I'm not particularly confident, but but we will see. But thank you, everyone, and thank you, Felicity.
SPEAKER_02:Thanks, Paul.
SPEAKER_00:PSM.