The 'Dispatched' Week in Review'- 31 July (Series 5, Ep.26)

The events in the US this week surrounding a former public health leader raise some important questions in Australia about the accountability of 'independent experts'. Why we can't afford to muck up the AI opportunity as new evidence on its use emerges globally. Ongoing debate over access to medicines and the impact of global pricing.

Transcript

Paul 0:11

Hello and welcome to the Dispatched Podcast, kind of a week in review. Uh um my name's Paul Cross, my co-host is Felicity McNeil, PSM, chair of Bitter Access Australia. Hi, Felicity.

Felicity 0:24

Hi, Paul, big week.

Paul 0:27

Yeah, mega, mega, mega week. We've got a lot to talk about. I w I want to start with an indirect pass or something. A bit of a monologue.

SPEAKER_01 0:39

Go for it.

Paul 0:40

Uh I don't know whether you saw the Anthony Fauci news this week, his diaries. People sort of presented it as if he was a teenage girl writing his journal ever when he went home every day. That's not what it was. Uh, and his appearance before Congress this a couple of days ago. It was a staggering thing. I mean, he refused to answer questions about whether he or the organized organization he led funded the research in Wuhan. Uh his current view on the source of the virus, including whether it was a a lab leak, his role in the pandemic policy response and restricting personal liberties, and his obvious obsessions revealed in these notes of his with media awards and frankly self-aggrandizement. He previously said he had nothing to hide, but now in response to a 10-year pardon granted by President Biden, he's refusing to answer questions. He even refused to answer questions, as you're entitled to in the US. I think it's the Fifth Amendment. I don't know what day it was, what colour was a folder in front of him, these sorts of things. Uh his personal muses, which which, as I say, they weren't in a diary, as many have characterized them. They were type on his work devices. So they were notes, have revealed sort of a massive chasm between his public statements during the pandemic and his honest views. Uh even if uh as some have inexplicably inexplicably argued, his public statements are about the greater good, they reveal a public health mindset premise on the view that we know best, and it is essentially legitimate to manipulate the public based on what can only be described as willful and deliberate misinformation, which is a euphemism for lies. Uh his notes certainly revealed that he was lying. He knew that what he was saying was not accurate. The reality is that because of this, you know, there are real implications. Much of the broader imp population will never again trust public health advice. And we're already seeing that manifest in things like declining vaccine rates.

SPEAKER_03 2:53

Yeah.

Paul 2:55

So, yeah, uh Fauci was in the US. He had a global impact, obviously, including in Australia, because the Australian media loved him, or sections of the Australian media loved him as much as the American media. And we know he loved this because he kept talking about how the media loved him. But these are all equally important questions to be directed at Australian health officials. But we've been denied that because we've not held a Royal Commission.

Felicity 3:21

Despite it being an election commitment from the Prime Minister in 2022.

Paul 3:25

Yeah, instead we got an internal government review hosted within the bureaucracy. In a Royal Commission, the people behind the pandemic response in this country would not be able to avoid answering questions because they would they would be held in contempt. It's a judicial process. And I don't think it's unreasonable to say we've got a right to know. We were locked up. Certainly in Victoria, they were locked up for 18 months. Yes. Children were not allowed to go to school. People were arrested for going surfing or for a or for a walk in the park.

Felicity 3:53

People lost their jobs for refusing to have a vaccination.

Paul 3:56

Yeah. New Zealand is currently conducting two parallel Royal Commissions into their pandemic response. And for me, it's it's about accountability. And I I don't and and this is where sort of I want to land this, because I would draw parallels between our national failure to investigate the pandemic response and broader health decision making. We're denied accountability on the pandemic, just like we're denied accountability on so many other health funding decisions. We were told that people behind advice on lockdowns and mask mandates were independent experts and by implication beyond questioned. Just like we're told that HTA advisory committees like PBAC and MSAC are the independent experts and that their outcomes are beyond reproach. In in all of these cases, terms like independent experts are weaponized to avoid accountability. It's as simple as that.

Felicity 4:52

Look, I completely agree. Um better access has asked for the Royal Commission since well, uh, we supported the gu then opposition in calling for it as an election commitment alongside their newborn blood spot screening. So why should I be surprised? But it's been interesting also for me in that One Nation keeps calling for the Royal Commission that was was asked for, and that is used to denigrate uh One Nation and their policies and their concerns about vaccines. One of the things you and I have always talked about is that when you don't allow full transparency, when you don't allow robust debate, not just on the vaccines and the lockdowns, but the way we have destroyed our economy to actually cope with that, all those decisions, to disenfranchise people and take away their capacity to work. When you don't have that independent review, you allow conspiracy and fear to take hold. And the department doing its own internal review, a bit like the HTA review process, which is the the same people reviewing themselves and why we need more HTA. I can't believe I used that language. It's a very serious concern. And you've gone to the next step, which is this is something that permeates, in particular in Australia, our health system and our federal health system. I'd say more than our state system, to be honest, as someone who deals with both. And it's why, you know, better access, we've been calling for term limits, but also why are the decisions and the recommendations of these committees that are then enforced by a delegate not subject to challenge by the Australian people unless you're willing and got the money to go to the federal court?

Paul 6:38

So this idea of the independent expert being automatically absolved of accountability. I mean, we saw this writ large that the AAT, the Administrative Appeals Tribunal, which is now the Administrative Review Tribunal, with the now PVAC chair, who was MSAC chair at the time, along with officials, obfuscated on matters regarding transparency. Uh, Professor Ward asserted that committee members had stated they would resign if their personal input as submission discussants was made public, but she refused to identify those committee members. These are people who promote their membership of these committees and use it to advance their careers and professional interests. We have a right to know what they're saying in advance of these meetings and in these meetings and the attitudes they bring. They claim they would resign if their personal input is discussant, was disclosed, is in itself disqualifying. Professor Ward even admitted under cross-examination that she knows that the notes she makes during the meetings are taken by officials and destroyed. Why? These are official documents that under law are required to be retained. Now, the argument is, and I've had industry put this to me, that there is some sort of a cabinet solidarity. And it's absolute nonsense. In cabinet, we know that the health minister represents the health portfolio. We know that the defence minister represents the defence portfolio and the finance minister represents the finance portfolio. We know that when a health submission is considered by the cabinet, Mark Butler is representing the portfolio's view. Okay, we know that. Yes. That is not how HTA advisory committees work. Each member of the PBAC of the PBAC, even if they are appointed by a sector organization.

Felicity 8:24

Nominated.

Paul 8:25

Or nominated by a sector or nomin uh organization, including the industry nominated member, works to a single legal responsibility as defined by the National Health Act. The industry nominated member does not represent the industry.

Felicity 8:39

Correct.

Paul 8:40

It is just a lack of accountability and it's unacceptable. And it's deeply problematic that Professor Ward got away with this. In effect, she mimicked Fauci's approach at that congressional hearing. And it's the expertism that has sort of clouded so much decision making is that it puts them beyond reproach. And the thing is, I'm all for experts. But if you're an expert, if you actually know what you're doing, don't you embrace questioning? Don't you embrace scrutiny? And I think that the idea that people are allowed to go into these meetings, make decisions, and in some cases knowingly harm people, and that's what we're talking about, and avoid any accountability for that. And and I reject I reject the premise. We need accountability. And every time I hear the word independent expert, I know it is being used as an excuse to avoid accountability.

Felicity 9:36

It is, and here's the great irony. So as you know, we're asking for PBAC decisions to be appellable to the ART. And your listeners might be a bit confused right now saying, well, how did the PBAC chair end up in ART if they're not actually appellable? It wasn't about their decision making in MSAC. It was about an FOI request to get access to the emails that were sent to and fro between members of MSAC and the department with respect to writing the minutes, draft and then final of an application they had considered. So this is how it got into there through the FOI process. The company that challenged that did so on the basis that there is a very clear part of the FOI legislation that says you all have a right to confidentiality in drafts and various bits and pieces, but not if you're considered an expert. If your opinion is considered expertise under law, then the FOI Act says you do not have the right to those protections of draft and exclusion and reduction. You are supposed to make that available. If you are being employed for expert opinion, the FOI Act says, hand it over. Now, what was extraordinary in that case was first of all, the commissioner that heard it was so transparent he said to everybody up front, hey, just let you know, my dad used to be on MSAC at one point in time. Is everyone cool with that? And of course, everyone was like, yes, fine, no, no problems. Transparency, potential conflict of interest, wanted to be clear to all parties that you might have a concern with that, particularly with the person who was or the company that was challenging the FI being blocked by the FOI commissioner. Ironically. So we went through that process. We then listened to the obfuscation and the, you know, these poor independent experts who I note uh Professor Ward these days is very happy to express her opinions on MRFF funding in her new roles, uh, not so scared to tell everybody what her opinions are in that space. But that commissioner found that he could only draw the view that either the PBAC chair in the department were lying or incompetent. And he decided to err on incompetency because that was a more respect respectful finding to have of this organization.

Paul 12:03

That's not a characterization of what he said. That's what he said.

Felicity 12:05

That's what he said. And once again, we have this problem where a company has gone to that effort of challenging, and then to now challenge again, you would have to go to the federal court. But also we had no support from anywhere else in the industry sector, the main industry bodies going, hang on a minute. Why aren't we picking that up? Why aren't we going to the minister? Why aren't we challenging this and saying, we have an issue here, so are they incompetent or are they lying?

Paul 12:33

You recall at my conference last year or the year before, I raised this. And people actually said that patients would threaten these committee members if they were identified. The logical extension of that is that no decision maker in government should ever be identified. The ministers shouldn't be identified. That's the logical extension of that. I mean, it was a it's a it's a ridiculous, ridiculous argument. It's a straw man. My frustration, and and I suppose independent expert is the stupid phrase of the week, because it is used as an excuse to avoid accountability. Every time a minister says it, it's they're the independent experts. Now we know that these advisory committees are not independent, nor do they have any particular expertise. And you and I spoke at a company this week, AbVee. We can name it. We had a great uh meeting with them, and we I suppose we essentially did the podcast live for them, but I said out loud, there's nothing particularly expert about these people, and that got a laugh, but it's a statement of fact. There is no particular expertise amongst these committee members that doesn't exist outside it in much greater numbers. What they have is positional power, and the positional power obviously follows from that is a need for accountability. But what we get is this defense, the Fauci defense, and that's what I'm going to call it from now on. Because what's been revealed is this guy's got some issues based on his musings, and as I say, these weren't the diaries that you know that the daily journal of a teenage girl. They were the professional musings of the head of the CDC, the most influential public health figure in the world, besides the communists at the World Health Organization, I suppose. Just so everyone knows, Ted Ross is an ex-communist. But but they were the musings about how happy and excited he was to be speaking to Barbara Streisand and going around going around to uh mainstream media figures having dinner with them. And you sort of go, well, and he knew, and more importantly, I mean, I suppose that was the comedic side of these musings. Uh more importantly, he was admitting in these writings that what he was saying publicly was not his honest view.

SPEAKER_03 14:43

Yeah.

Paul 14:44

And now he appears at a congressional hearing and refuses to answer any questions, including the day of the week. Now, obviously, the decision of President Biden to give him a 10-year retrospective pardon was a sign of guilt because he didn't have to accept it. So he presumably knew something was coming. And then we get these articles in the Australian media of all places today talking about how mean the Republicans were to him. I'm sorry. All of these countries, US, Australia, other European countries, have indebted future generations in unsustainable ways. That's before you get to the mental health harm caused by lockdowns, which they knew they knew were not going to have an impact. The face mask mandates, they knew they were not going to have an impact. And I'm sorry, I'm pro-vaccine. I'm completely pro-vaccine. Me too. I am completely pro-public health, but I'm also pro-accountability. And we've been denied that systematically in our health system. We've been denied it on COVID, and we're denied it on a daily basis by a system that uses the term independent expert to avoid accountability and discussion.

Felicity 15:53

And even though they're not independent. Yeah, it's it's the great irony in the system. Like I said, by calling themselves independent experts, everything they do is supposed to be transparent under the FOI Act. And so this is also the the dark art of bureaucracy and the lack of consistency in push from the sector and from patients to topple the system over. It's like I said, it's why I want PBSC and MSEC accountable to the ART. And, you know, that should appease Professor Ward and her scared, scaredy cat face about, you know, maybe a patient might be mean to her if she doesn't uh recommend something. If you give us a process, if you give us a right of accountability and review of independent review, because actually, do you know what? The ART actually is independent, not like the PBSA, they are independent. If you gave us as patients somewhere to go, other than begging and crying to ministers or our local MPs to get the form letter back from, you know, the the department going, oh, just so you know, we have an independent expert process and we cannot list something, blah, blah, blah. I don't care. Patients die. Uh, but I think also importantly, what you've been going after too, we've both had um long, long waits through the FOI commissioner for reviews of materials from the PBAC. You just trying to get a summary of the consumer property. Yeah, I know, and that's saying something. So it it is, you know, and and I know we're going to get to the Zolodex and the MS things that are going on right now and how hard it is to explain to mainstream media the absurdity of this system and its cloak and dagger. And it's funny that once you spend a whole lot of time with journalists explaining to them how it really works, they can't believe that it it really is that secretive and that punitive. And yet that's actually what we're living with. And so I I think it's quite funny. You're saying that um that uh Professor Ward copied vouchy. Well, obviously she did this six years ago, so maybe he took a bit of advice from her.

Paul 17:59

But I think I think the comparison is fair. I think the comparison is fair. And the idea that if a discussant who is using their position on these HTA advisory committees for professional advancement would resign if they are identified or their name was associated with certain discussant input. So what why would you be embarrassed by it? Like what are you saying if that's the case? What are you saying? If if that's the case, what are you putting? And and to me, it's all the more reason why it should be disclosed.

Felicity 18:36

Well, you should always be declaring your your conflicts or your interest areas. But also if you're, you know, for those and a lot of your listeners do know the PBSC process and the and the MSAC process, there are two lead discussants. And then the committee, the rest of the committee, discusses it, and then they make a decision. So just because you wild the discussants doesn't mean that that is exclusively your view, but we do have a right to know what is going on in this in these spaces when this is literally determining our access to healthcare. And I said this is uh my experience of the state system is that I can get more information and more transparency when it comes to access to certain uh services, technologies, etc. So I think this has got to this almost ethereal status.

Paul 19:28

Aaron Powell And the problem is when you raise people like Fauci in the pandemic and you start to question some of the actions and the responses, people think it's political. People think you're you know wearing the tinfoil hat. No, I'm not. You know me, I was a massive advocate for the vaccine and getting it to people as quickly as quickly as possible. But I also don't believe people should have been fired from their jobs for refusing to take a vaccine. No one gets fired from a job for refusing to take, you know, a particular treatment, for instance. Why was that so important? It was an incredible imposition on our civil liberties. We couldn't travel, we couldn't move, you couldn't sit in a park and have a can of coke or a drink. You know, there was all of these rules. You couldn't walk, you know, in the ACT, you could only walk one direction around the lake, and that was outside of lockdown. We have a right to scrutinize these decisions and the people who made them. We have a right. And the fact that we're all being denied that right is deeply problematic to me. So don't this is not political for me. And and that the the Fauci stuff this week has basically fallen on political lines, as everything does these days.

SPEAKER_03 20:30

Yeah.

Paul 20:31

But I'm sorry, you cannot look at what has happened with that guy and the revelations this week and his approach to that hearing and not go, something has gone really off-piste on this. His obsession with getting into the media, speaking to Barbara Streisand, going to Jake Tapper's house for dinner. It's it's quite demented. And more importantly, he knew that what he was saying publicly was not true. Now, he's probably going to be held in contempt, is my understanding. And so he should. And then we had the situation in Australia where the former Prime Minister Scott Morrison got up and said, Well, I know national cabinet is me. But basically, don't worry about what we say. Just whatever the chief health officer in each state and the chief medical officer of the Commonwealth says, just substitute that for national cabinet advice. Yes. Which is one of the most remarkable statements, appalling statements I've ever heard.

Felicity 21:31

Absolutely. And it's it's a bit like, you know, I remember when uh now Prime Minister Albanese was in uh opposition and we had the October budget and this huge amount of money. And I really thought he was going to take the stand that a lot of us needed, which is you've all agreed to these lockdowns, all these various things that we're doing, but we are about to saddle our future generations with a debt they will never crawl out from under. And so now when I You know, listening to Mark Butler, you know, being so offensive to older Australians right now with their private health insurance and, you know, oh gosh, look at all the money we have to sp you know spend on old people in aged care. And that is the tone that comes across. When you look at this whole where, you know, what's the other thing? There's no such thing as cheap, free, lazy money now, I think was his his comments today as well, too, because now we just take it from people. We went through all these processes. We did all these things as a country without consultation. I mean, Victoria even just shut down their parliament. So, you know, there were the delegated legislation committee in the Australian Parliament said, we are really worried about the way you're doing this. We will let you go, but this is this is not good government. We needed to review that because it does create fit conspiracy theories, but it does create some very important lessons in how you communicate in what is a complete failure and what you shouldn't do again, and what you should know not just from a health uh perspective, but an economic perspective. So I'm completely with you on that. And I just wish we had more thirds.

Paul 23:11

No one will ever trust public health advice again.

SPEAKER_03 23:14

No.

Paul 23:14

That's that's the reality. And it's well, that's not true. A significant proportion of the population will never trust public health advice again, or they'll at the very least question it. And you know what? That's a completely rational response based on what based on what we know and the lack of scrutiny of what happened. Those daily press conferences, the ridiculous prime ministerial courtyard press conferences, our thanks, PM, and the absence of scrutiny of what was going on. And as you rightly say, and you pointed out at the time, all of this this decision making, all of these lockdowns were being done outside the parliamentary process.

SPEAKER_03 23:47

Yeah.

Paul 23:48

And and unfortunately, the Biosecurity Act gives the health minister the powers of a medieval king.

SPEAKER_03 23:53

Yep.

Paul 23:54

And I wrote that at the time. You've got to look that. Not only can they prevent us from doing things, they can require us to do other things. And and I know I know at the time, because I spoke to Greg Hunt's office, that the legal advice was he could exercise that power verbally. Literally, King Edward III stuff.

SPEAKER_03 24:14

Yeah.

Paul 24:16

You know, it was a shrebuchet through the northern France, right? And it was, and it was to me, it's it's worrying that there's been a lack of scrutiny on it. And then what we get is what was the advice of the independent experts. It's like, well, so what? So that what so there can't be a cannibal when we don't have a right to question them?

Felicity 24:33

Yes, and and I think the other thing I was uh talking at that uh event yesterday, and um thank you very much uh to Nat McNeil and um others for for hosting us to have a bit of a like you said podcast chat was it was fun, wasn't it? It was lovely, lovely, lovely uh group of people and lovely company with great ideas. One of the things that I talked about was that when Australia, and this is my patient perspective on why I'm you know taking on the PBAC and MSAC again, when Australia was frightened and we needed access to things immediately, the government did not trust the PBAC or MSAC to help them in. They they ignored MSAC for telehealth, they ignored PBAC for the vaccines, and they ignored PBAC for the treatments in the short term until they needed to actually move them from the national medical stockpile until they're not notionally put on the PBS on the back of an envelope submission. And as I said to some of the people in that room yesterday, I was very disappointed that it didn't go through the PBAC and MSEC for all those things because I wanted to prove that our system doesn't work, that when I need access to healthcare, there was no way PBAC was going to agree to those vaccines or those uh treatments. And so they would have had to say no, and we would have seen, see, this is the problem with our health system. Alternatively, they would have had to capitulate a little bit and understand that you know what, we're going a little bit too hard here. We need to actually have a moderated view of what clinical effectiveness and cost effectiveness means in this country, and we have to change slightly about how we apply that dreaded acronym, HTA, to decide if something's worth listing in our country. Either way, it would have been such a powerful moment for patients, and we lost it. And so now we're six years down the track, and we're looking with a minister hiding behind a HTA review outcome process that he thinks, you know, this is what I'm definitely going to seriously look at, and you know, people coming up with some great ideas. That's what I got out of it. And that was again one of the biggest flaws in the system. And if we had a Royal Commission, I'd be able to ask uh a judicial representative, why? Why did why did we do that that way? What would you have found?

Paul 26:52

What's no one is saying anyone needs to be attacked? We just we just have a right to know. We want to learn. Yeah, and and in Australia, the beauty of it was while Fauci was taking the fifth, uh, you don't have that right in Australia. You'd be held in contempt in a Royal Commissioner if you if you refused to answer. And I think we've got a right to know on what basis did you decide these stay-at-home mandates? On what basis? What was the evidence you used? Well, we and we know in Victoria, Brett Sutton on the school thing basically said there was no evidence to keep the school kids at home. And so you had parents for two years in Victoria having to educate their kids, which is just a ridiculous proposition, because the logical extension of that is that, well, we don't need teachers, obviously, which is a ridiculous statement. But that was that was the logical extension. So all I want is just the truth. And the truth, let the sunlight in, it's the best disinfectant, but it would also rebuild confidence in public health.

Felicity 27:44

Absolutely.

Paul 27:44

And that's just why these vaccine rates are falling. But let's let's move on to AI. Uh because I think Australia as a country is at a serious risk of flobbing this one. Uh there is an emerging, you know, because the but the basically the great scare is that it's going to cost jobs. It's going to cost jobs. There's going to be just this bloodbath of jobs in white-collar employment. But the emerging evidence in the US is that's not the case. So there is a there is a there's a whole uh uh body of academic research now looking at the actual effect and likely future effect of AI. And I was actually looking at it this week, and there was a couple, there was a couple of things. One was a recent article in the New York Times about software development. And the idea is that because some software companies, including in Australia, have made mass layoffs of coders, and the actual coders in these startups in I think it was Google or Amazon or startups as well, sorry, uh in the Silicon Valley is that no, no, no, no, no, no, no, no. Because all of that assumes that there is a fixed number of good ideas that we're working on, but there's actually a massive amount of really good ideas that we never get to. So what AI is enabling us to do is to get to those ideas we were never able to get to. And in fact, the argument in the New York Times was that by these coders was that there's actually going to be an increased demand for coding. And then I was reading a great paper, and I think I sent it to you from uh Professor uh Eldar Maximov at the Arizona State University. He's gone back to the 1860s and the the coal uh industry, the massive increase in the supply of coal, and people thought this is gonna basically destroy the coal. No, no, no, no, no, no. It created new uses for it. And he said that's the lesson of history. It's the lesson of computing, it's a lesson of the internet, and his view is that the smart companies now on AI will be holding firm on headcount. His argument is that a lot of people, a lot of these companies are laying people off to please investors. But the reality is they're degrading their future capability to identify the new uses for AI. So that made me think HTA. Now, a lot of people are using or talking about AI as additive to this HTA ossified framework, and you know that as better than I do that any anything additive to HDA is adding uncertainty.

Felicity 30:15

Yes.

Paul 30:16

So the risk is that AI just gives gives them a whole new excuse to dismiss, to create uncertainty. My view is that AI has to replace, but it also is a massive opportunity to democratize the process, to open it up, to open it up. So just as AI is creating new opportunities in software development and other areas of the economy, how can we use it in HTA? How can we use it in decision making? Not in these discreet ways during the evaluation process of people protecting their little fiefdoms, but open it up. Boehringer Ingelheim recently launched this AI platform that enables patients to develop their input. Great, good start. My view is that no, no, no, no, no, no, no, no. Why aren't we using AI or thinking about AI to allow more people to do submissions so that we can do more? The new uses we can use it for, that to me is the opportunity is that let's democratize the process because a submission costs over a quarter of a million dollars. Setting aside the costs that actually related to putting the submission together, which is at least that all over again. If the actual cost of evaluating that submission is a quarter of a million dollars, if that's true, and I doubt it is, but if it's true, maybe Beyonce is doing it, I don't know, Taylor Swift might be involved in the process somewhere. If that is true, then that is evidence of the problem. And I think the opportunity for AI is to basically make it more affordable and more accessible. So the people who've never had access to these processes and submission pro submission evaluation processes before, because they've been too expensive, they've been too technical. What is the opportunity for AI to give these people access to it? That to me is the opportunity, the massive opportunity we should be talking about. Not making it additive.

Felicity 32:19

I think it's a it's a very good point. Um you know, uh in my time in PBSC and older PBS, had two applications from community groups to uh try and pursue listings. Uh the travesty of the national or the newborn blood spot screening program between 2015 and 2022 was if you could get them to even consider it, they'd say, well, hey, patient group, you you you want us to do something? You go, you go and write something. Um, because it was used as a barrier. And I watched patient groups try and find a researcher or a doctor that might try and help them write something to prove an evidence-based case for why we should have a diagnostic in the health system. It was so offensive. What you're proposing is is a bit a particular opportunity. I I I think it it goes even further than that, because if we accept that safety and efficacy is evaluated by the therapeutic goods administration. So by the time something's listed for market access here in Australia, whether it's a medicine device or a technology, it's been reviewed. Then the only thing should be is that me as a patient or anybody should be able to say, I would like this. This is what I want, this is how I see it, these are the criteria of the information you need to give to me, and I put it forward. And I can see how the system will try and say, Well, yes, but we've got this PBSE process and this MSAT process, and we've got this process and we've got that process. But we don't need those processes. If we actually have those materials and that information, because when we talk about the independent experts, let's be really clear. They're reading a summary from a university that was paid an awful lot of money to review a submission written by somebody else for another company. So by the time everything comes, you're right. To to go through 500 pages worth of submission evaluation for ESC, evaluation for Dusk, you know, the the three different reports, yeah, there's a lot. But let's be really clear, the PBAC members are actually just expert at reading their particular submissions about how to read that GOF. If we actually step our way back from that and say, well, these are the listings, these are the patients that want it, these are the prices that are going on, here's here's my submission, then all it really should be about is looking at where that sits in the health system and and do we need that? Yeah, that's thanks very much. We'll take that.

Paul 34:54

Yeah, because what the health system is doing now, and we see it uh in a lot of different areas, that it's putting up the walls to AI. Yeah. And it's risks are a massive lost opportunity to simplify and make health decision making far more accessible for more people. But it's so cynical and expected, whereas the vested interest basically acts to protect their you know, their their their part of the pie. So I I think it's a it's a massive opportunity, and and really, you know, the idea that there's going to be mass job losses as a result of AI, I think the US is already moving on on this, and that the emerging body of research, and it's not just in the US, there's the paper that I found at the University of Arizona, there's the uh research done by the LSE in London, the US Fed has done research. Uh Scott Galloway, who's the NYU economic business professor, basically said a much bigger impact on employment has been work from home because companies have realized that we don't need all these people that are working from home. So AI is a huge opportunity to boost productivity. So the research shows that people are saving about one day a week of what they used to do. So as these coders told the New York Times, well, that means that means we can get to ideas that we were never able to get to before. So for me, the opportunity is to say, well, let's not think about AI and its potential in health decision making within the existing frameworks. Let's think about replacing the existing frameworks with something that opens up decision making to more and more people, make it more accessible, democratize it. I would love for someone to argue against that with me, that that would be a wrong, but I guarantee you there are. And I wrote this week that what we hear all the time is that it's got to be human-centered decision making. Yeah, because the humans in this system have done such a great job. I'm trying not to swear on this podcast. These are the humans that have constructed such a process, it costs over a quarter of a million dollars to make a submission. These are the humans that have constructed and overseen a process that it takes two to three years to achieve reimbursement in this country. So these are the humans who are now have put the HDA review now in its fifth year and are going through a trial-approved, protocol-approved Delphi survey to construct some kind of meaningless agreements on the wording of technical inputs. The humans have not done such a great job that their role needs to be protected. And frankly, if we need a robot to take over, hey, I don't think it can get any worse. Than what the robot is. So this to me is that we've got to stop thinking defensively. We've got an AI event in November putting together a really interesting agenda. I guarantee you, by then, more of this research is going to come out of the US about how it is massively boosting productivity. And of course there are winners and losers. But there need to be some losers in our health decision making because they've done such a bloody awful job.

unknown 38:17

I was trying not to sort of.

Felicity 38:18

That's a half swear, that's not a full swear. Yeah.

Paul 38:22

But but but but although when I said it AV yesterday, I do swear on the podcast, everyone knows that got cheered, so that was good. Swear Just Danny. There was a lot of sympathy. But but but I do I do think by November there's going to be more of this research showing that there are more winners than there are losers. And I think the opportunity for us in health decision making is to make the end user more of a winner. Because at the moment, and we see this all the time. Oh, well, we insiders have constructed this process. I suppose we better uh get some patience to input now.

Felicity 38:54

Yeah, thanks for the afterthought.

Paul 38:56

Yeah.

Felicity 38:56

Um, yeah, look, I I think it'll be great and exciting for you. The um, you know, you talk about the innovators, one of the most innovative, reformative countries in the world who are so forward-thinking in their circumstances, Singapore.

SPEAKER_03 39:14

Yeah.

Felicity 39:14

They've already got one of the first countries in the world to have all ready-to-go governance structures for AI.

SPEAKER_01 39:20

The Prime Minister said we're leading the world on this for the city. What are you talking about? Well, we've we've got I don't know whether they've got a logo yet, but we've got an A Office of AI.

Paul 39:29

They've probably got their own little part of the PM and C down there in Canberra.

Felicity 39:33

Probably. They're recruiting chatbot. But um logo. There is, like I said, Singapore, a country with no natural resources, which has one of the healthiest GDPs in the world and uh has transformed their country over 50, 60 years. So the fact that they've got in early and you know dealt with this. Yeah. Um, I think we we could learn a lot from them.

Paul 39:58

We can. Let's talk about the conversation.

Felicity 40:01

Yeah. The never-ending story.

Paul 40:03

It's actually every time I speak to people about it, the the anger about that article.

Felicity 40:08

Yeah. Yeah. Which it should be. So um, as you know, we at Better Access lodged a formal complaint with the editorial staff about a my the selective quoting of me, and then B, using Australia's gross expenditure per person on medicines as the proof that there was no charity in Australia. And so we did write back to them and say that you shouldn't be using OECD numbers, which include vitamins, condoms, band-aids, and personal uh expenditure on medicines and all sorts of other healthcare, as the comparable issue, which is what was I being asked about and what was the headline for this conversation? It was about um how drug companies are playing hardball with Australia's PBS. So that article is about the PBS, not about band-aids and condoms. We went in and it said, look, can we just cite the actual facts to you, which is the PBS expenditure report, you know, gross expenditure, 19.1 billion. Table two shows you that actually after you take out rebate rebates, it's 12.557 billion. Then if you take out pharmacy and dispensing fees, another 4.8 billion. And then if you take out the wholesale markup of 617 million, table 48 for those who don't know the the pro the um what is it? Publication, um, you get down to 10.13 billion. And in a population of 28 million, that's $361.82 that the PBS spends, the federal government spends on medicines, which is 71% lower than the figure that um Professor Barbara cited. We also tried to explain to them how a risk share works and actually sent them to our website where we have a this is how a risk share works and how when you don't include all the patient numbers. We picked up a bit like you on the IP and theft of IP. About um and what that might mean in a research institution or or an organization such as the conversation. We went to a lot of effort. This is what one of my fellow board members got in response. Thanks for bringing this matter to our attention. I have reviewed the concerns in consultation with the article's editor and lead author, oh dear, and I'm satisfied that no amendment to the published version is warranted. The article does not state that the figures in the paragraph following the quote from Miss McNeil refer specifically to PBS funding, even though the entire article is about that. In line with our editorial policies, so excited, sent me a hyperlink. Yay! We only amend articles after publication in cases where there is a clear factual error that requires correction and not for issues of interpretation or perceived omission.

Paul 42:51

So because the figure they cited was actually misleading, but they didn't explain it, it's fine.

Felicity 42:57

It's fine. So I would like to thank my fellow board member David, who wrote, Hello, Michael, your reading of the article is very convenient, if incredibly flawed. How surprising from government-funded academics that you attack BAA's chair using incorrect data and then decide that incorrect data is fine as it supports your political biases. So we will be continuing to post and argue on that one in BAA and it's pathetic.

Paul 43:20

It's it's because the their argument is that because we didn't identify what that number was, the fact that it is misleading is beside the point.

Felicity 43:28

Yes.

Paul 43:28

That's that's the defense. I mean, that is the ABC defense writ large.

Felicity 43:32

Yeah. Well, I'm I'm just looking forward to writing to Michael going, hey mate, what are you going to do about the whole charity from Zolodex and AstraZeneca this week? You know, how is that another charity case? But it goes to the insidious nature of when patients are trying to have a grown up conversation and a desperate conversation about access. And then it is the experience of from academia and got. Government that misrepresents our concerns as being big pharma trying to take money out of the system, big pharma trying to beat up the PBS, or big Australia is big and rich. And we're not. If we're spending that amount of money on medicines, we're not. And we're not even arguing what that final number should be, but we're telling you we don't get the access. We're telling you that things are being delisted. And we're not saying pay top dollar. We're saying pay fair dollar, pay something so that we can have the access.

Paul 44:32

Yeah. Yeah. Yeah. That's it was an embarrassing defense, but that's a defense that starts with a decision that we're not going to amend the article. And how can we defend it? And as I said, the defense is basically that because we didn't identify the number, the fact that it's misleading doesn't make it wrong.

unknown 44:50

Yeah.

Paul 44:50

That's their that's their defense.

Felicity 44:52

They forgot to discount for uncertainty.

Paul 44:54

So that's so let's let's let's let's well it's a risable response, but I wouldn't expect anything else to be honest. But uh yeah. Well, on issues like uh, you know, and these have been knocking on for a while now. I suppose the minister has bought a bit of time on the multiple sclerosis drug.

SPEAKER_03 45:15

Mm-hmm.

Paul 45:15

It's gonna come back across his desk in at Christmas time. Good luck with that. Uh the breast cancer drug kicked, and I was interviewed about it this week.

Felicity 45:25

I know it was your turn on the ABC.

Paul 45:28

I know, it was interesting. I got a couple of I I I did the interview, and basically I said, look, you've got to understand the complexity of how global pricing works. There's lots of different levers, there's lots of different ways that they do it. And they didn't include in the art in the in the actual recording where I said, look, Australia's spent the last 30 years going around the world lecturing other countries about they should do what we are doing on pricing.

SPEAKER_01 45:52

We're world leaders.

Paul 45:53

We're world leaders. So if they start doing it, we can't really complain, but apparently we can. So that that that to me I find amusing. But also the idea, and there is a naivety amongst the advocates for sort of the sort of the the pharma is is too wealthy argument. This idea that, well, if pricing was just lower in the US, the world will be better. Nothing else in the world would change. So if they just lowered the price in the US, the rest of the world wouldn't be impacted. I'm sorry, that's not how globalization of the economy works. And so there is a certain naivety about that. I mean, I was having discussions with some uh media this week where they would say to me, Yeah, but the industry is very profitable, isn't it? Well, yeah. So what? There's a lot of profitable industries around the world. They're under no moral obligation to supply their product to Australia on a compassionate basis. I hate to say this. I think there is an argument that they shouldn't. Absolutely. There is an argument that they shouldn't because it lets the government off the hook. Uh, I don't want my country to be a charity case. We are a very, very wealthy country. We can afford to pay and we should pay. And so that that frustrates me a little. Uh but the question was, and it's the question I left the interview with, because there was a lot of there was a lot of they were saying, Yeah, but they can supply for nothing, but they can't sell it. Yeah, you've got to understand how it works, it's complicated. But I would even get to, I was speaking to somewhere at ABC in Melbourne, and they would say, Yeah, the PBS is not a billion dollars, and no, it's not. No, it's not yeah, it's much less than that because the companies repay over six billion dollars, plus the share that goes to pharmacy, plus the share that goes to wholesales. And they said, What do you mean they pay six billion? I said, when the government in the budget said, and this is the industry's got to get its head around this because no one knows this, and I don't understand why no work has been done on this. When the government says in the 26-27 budget that they've invested six billion dollars in medicine, it's probably actually closer to one. Once you, once you account for rebates, maybe one between one and two, I don't know.

Felicity 48:01

I'd say yeah, two to two point eight.

Paul 48:03

Yeah, but there's not not a lot, right? So, well, it's a lot closer to one than it is to six. Oh, 100%. Yeah. So so that to me is just a massive open door for the industry to start educating people. Because I explained in my interview that Australia has been dealing with international reference pricing for 15 or 20 years. And one way that we've been doing it is by higher published prices and a lower net price through all of these levers. That has worked. It has worked where the countries using international reference pricing, Taiwan, Korea, comparable markets in terms of size. When it's China and the US, and the US are saying to companies, like your published price, that's great. You're gonna give us the net price, which they legally can get out of companies. Yep. Then that creates all sorts of complications. And then for us, it means that we are going to have to respond with some new pricing strategies. So what? And that was my argument. It's like, well, in some cases that means we're gonna have to pay more. So like pay more. Like where's the controversy? Because the alternative is that we don't get the medicine. Does anyone want that? Does anyone say now some of the crazies out there I think they actually would prefer patient suffering over paying more for medicines? Because they never address that point. Like the conversation article didn't address the alternative, didn't address the consequence of their position.

Felicity 49:25

No, it's procurement before patients.

Paul 49:27

Yeah.

Felicity 49:28

And it it it's an im it's an important point. And I think, you know, um, I'm gonna say, and as I said yesterday, I am very disappointed that AstraZeneca is giving away their product for free. I appreciate it could provide some relief in the short term for the women who are really frightened, and I understand that. But even if you read the articles, they're like, well, why is it for free now? Why did you take it away? I don't understand like what's going on and how long do I get it for free? And what do you mean?

Paul 49:56

And I think it's indefinite, right?

Felicity 49:57

It it is indefinite, but for me it's problematic on two levels because we as patients were finally getting some trashing to explain to the system that this is not tenable. And then giving away the medicine for free indefinitely because it either works for you in the way that you you do your basket of pricing, because a free product isn't therefore counted. But you've actually taken away our right of concern as patients when which product is next? Which one is next? Will they come under the same pressure to make it available for free while we all have an argument? When what what about the products that aren't even coming here at all? And I just it's created so much confusion. And I'm a bit like you when journalists are ringing and saying, well, this is okay, because now we get it for free. So it's proof they were just ripping us off in the first place. And I'm like, well, do you work for free? Now, look as a patient advocate, I 100% work for free. But when I'm actually doing my own work, I charge and I try to make a profit out of that so that then I can actually also have a reasonable like lifestyle and also actually do my volunteer work. What is the problem that we have here and why are we selling this our products for free? And I guess I get very concern concerned about it, which is how long before the US and China also once again listen to Australia that says you should follow us. Because you know what we do on price disclosure? On price disclosure and the F2 medicines, if you offer a discount on any other medicine, or you offer any product for free, or you give a TV or you know, free syringes and gloves for um a particular product, we count that in what the real cost of your medicine is, the real price you are selling it for. So this might work in the short term, if this is the magic way to get around um basket comparisons. But if we have educated the US and China the way we think we have, they will be looking at that and going, where two now?

Paul 51:58

Yeah, that that's you always say to me, it's a very good way of describing it that for every action there's a reaction. So if we do workarounds, then we're gonna have to expect other countries to do workarounds. And and the cr the the the silliness of it is that if we're just going to refuse to have a conversation about the need to pay more, then the workarounds, we're gonna be do doing workarounds every few months for the next few years to deal with it because I don't think it ends with the breast cancer implant or the or the MS drugs. I mean the MS drugs isn't even finished. This is the you know, we we need an honest conversation about, and I don't it's not about HTA, it's not about discount rates, it's not about comparisons. Mark Butler's response on the article that I was in this week was to point to the HTA review. So which of the 50 recommendations in the HTA review would have resolved global pricing and global pricing benchmarks? Like which one exactly? There's not one. And I know it's a reflex response. He probably didn't even see it before it was issued to the OBC. I don't I don't know. I don't know how his office works, but we need to have a sensible conversation about if we need to pay more, let's let's let's pay more. No one is arguing for tens of billions of dollars, but I think a sensible in investment. Well, we've seen it with Act in New Zealand, where they've said we are way behind international benchmarks. We can't catch up in one year. We're going to catch up if we are re-elected and we get our coalition partners to agree to it. We commit to catching up over seven years. Now, Australia is not really something to aspire to, but when you're in New Zealand, I suppose it is on medicines. So I respect that. There's a statement of intent, of commitment to resolve or help resolve a pretty deplorable situation in that country. Our statement of intent is a bowl of nothing.

Felicity 53:55

Yeah, and and it's a different problem. So as Todd Stevenson's nicely articulated, and uh David Seymour, isn't it?

SPEAKER_03 54:05

Yeah.

Felicity 54:06

They've got a whole list of stuff they want to list that's been recommended through an arduous process through Farmac, but they don't have the budget for it because it's a fixed budget. Australia has the reverse. Australia says that we will list anything if it's recommended by the PBOC, no probes. But we make the process in front of it so arduous that by the time we get to that listing process, much harm has been done. And so that's the other thing we have to remember in all of this is that we can't fix it the way New Zealand is going to fix it because we literally, every time something is recommended, we fund it. If the company chooses to proceed with the recommendation as it is.

SPEAKER_03 54:47

Yeah.

Felicity 54:48

That is not our problem in Australia. Our problem in Australia is that we are going through a process that is so arduous. We are not fully paying for the patients that are eligible, and we use that as a secondary price cut. That is our particular problem. And the argument about what do we think the value of innovation is. We are now also facing, and this is actually where the traction is for patients, we have a much greater say and influence on the government when we look like losing something we already have. We put up 2,000 brands of medicines from 50 cents to $4 because we were worried about supply, because they were generic. Yet we have things that are newly listed on the PBS in the innovative sector, and we're constantly trying to hit that price down for opportunities and efficiencies. Yet, as I always remind people, milk's gone up 80%, bread's gone up 70% in the last five years, and the medicine prices will be we we put them down. And sometimes that's okay, and sometimes it's not. So it's not an absolutism about everything must go up or everything must go down or everything must be, you know, an automated, we're going to pay 15-20% more on a listing price than we first go there. It's not that simple and absolute. We have taken all the nuance out. The problem we've got is because PBAC and the department are absolutists. You're in or you're out. It's this price or no price. As I said to someone yesterday, PBAC's advice is advice. You know, the department weaponizes that to say, oh, you've got a thousand patients, but you recommended, but you think it's 1,200. Well, no, you've got to go back to PBAC and do a new submission. Oh, you've got a recommendation to list, but you think the drug's worth $1,500, not $1,300. Well, you come back. We used to, as delegates, take the advice of the PBAC and find a point that was in the best interests of the system and the patient and represented good value for money, still based on the principles. And that's what PBAC needs to remember. You give us the principles of a decision. You do not give us the decision. And until the industry fights back on that and the department stops taking them as being the, you know, judge-jury, we've got a problem.

SPEAKER_01 57:07

But Felicity, they're the independent experts. Not independent, not expert.

Paul 57:12

No, and I it's like people don't can't, they get really uncomfortable when I say there's nothing particularly expert about this group of people. They're just a group of people with positional power. And for some reason, over the past 10 years, they've been given this sort of standing as a papal conclave, you know. So submission, you know, the white smoke comes out from above the Vatican when there's a recommendation, and basically that's it. We have to take it as as fact. That that has never been the case. And in an era where and this goes to the Fauci defense. And I know people saying, oh, you know, it's like, well, well, no. And I feel the need to say this, I'm very pro-vaccine. I have every vaccine that I can possibly get.

Felicity 57:56

You said it four times, we got to do it. I try to do it.

Paul 57:59

But the craziness in the response to Fauci's evidence this way has split down political lines. Nothing I'm saying is political. What I'm saying is that look at what he did, look at the publication of it. It is not a diary that was released. They are his professional notes that he did on his devices. Entirely legitimate to release them. Read those where not only he knew that what he was saying publicly was not true, he attacked, publicly attacked other independent experts, other scientists, other experts, because they were publicly disagreeing with him based on the evidence. Now, take that experience in the US, take how he acted this week and apply it to Australia and see the similarities. Independent expert is a terrible, terrible term that is designed, has a deliberate intent of obfuscating proper debate and scrutiny. That is why it's used. It is why ministers have deployed it since I was a minister, since before I was a ministerial advisor. There is nothing independent about these people. They're certainly not independent of their own views, but but they're not formally independent like ASIC or CASA.

Felicity 59:12

Or the AEC.

Paul 59:13

Or the or the AEC. They work to the minister's legal framework and whatever regulation they impose.

Felicity 59:23

And that is why we want the minister to change the framework to actually include patients in it.

Paul 59:28

And as I said in that room at ABVI yesterday, there is nothing particularly expert about that group. In fact, there is as much expertise in that room at ABVI yesterday as there is when the PBAC meets. And people might get upset at that. I could not care less because it is the truth. They have positional power. And the the the the reality of that positional power is why there needs to be accountability. There needs to be public accountability. And we don't have that.

Felicity 59:56

Nope.

Paul 59:56

Okay.

Felicity 59:57

So support our request for change, please.

Paul 1:00:01

All right, Felicity, thank you.

Felicity 1:00:03

Thank you.

Paul 1:00:03

Uh again, congratulations to Abby. I think we had a pretty good time.

Felicity 1:00:07

It was great to uh yesterday. Just to meet and talk to a lot of people and Yeah, and to I mean it's it's nice to to do the like you said, effectively, the podcast in a different room with different questions. Um your listeners tend to be a little bit um slow on the whole setting things. Can you ask this? Can you ask that? It was nice in the room to just have people be able to to challenge um or reflect on what we were saying. So, but I really do want to thank um the team for doing that. So it was was good.

Paul 1:00:38

Yeah, it was great. Uh unfortunately, they're moving from that office. Because as an aviation buff, as you know, as an aviation geek, I would just sit in that office all day looking at the plates.

Felicity 1:00:50

Hence the references to Corbin, yes.

Paul 1:00:53

So that was uh that but they're moving into the city, so like everyone else, but that was good, but it was great, and thank you for that. And thanks everyone for the ongoing engagement, keep it coming. So this week's crazy term was independent expert. Uh, keep the suggestions coming in, and uh, we look forward to chatting to you next week. Thanks, Paul.