The Dispatched Podcast 'Week in Review' - 20 February

Australia’s system for deciding whether new health technologies are funded is too focused on contested models and not enough on real people and their needs. The lack of human consideration leads to long delays, avoidable suffering, and sometimes deaths, in a process where patient voices are 'summarised' into oblivion while insiders talk around the problem instead of fixing it quickly, openly, and based on our shared values.

Transcript

Paul 0:09

Hello and welcome to the Dispatched Podcast, Week in Review. It's Friday the 20th of February. My name is Paul Cross. I'm delighted to be joined by Felicity McNeil, PSM, Chair of Better Access Australia. Hi Felicity.

Felicity 0:21

Hi Paul, how's your week? Bit of a win there for Carlton. Oh, don't worry today.

Paul 0:29

Don't Andrew Wilson must be thrilled. Oh, what do you see? He looked absolutely amazing.

Felicity 0:33

But um in a perfectly professional evaluation of a sportsman's capability stance. That was that comment, right?

Paul 0:40

No, no, it's just he looked very fit. He looked very fit. And again, completely pretty hard to see all those uh ex-Calton players running around for other teams, but we did have a good win. But it has been a good week, interesting week.

Felicity 0:55

Yeah, the Bolsheviks and the Stalinists had a comeback.

Paul 0:57

Stalinist show trial. I had to put in a trigger warning for that people. I do want to talk about values because I think it's really the missing discussion. And it just strikes me that the basic premise is that any public health program, any public policy, should be based on a set of values. And I I I think it's fair to say that in Australia we have a we have a shared set of values. Our political leaders talk about them all the time. We see that with the ISIS Brides controversy at the moment. Can I just ask, what's the mental process you go through that leads you to say, you know what? I'm gonna follow my husband to the caliphate where they're beheading people. I'm gonna leave my cushy life in sin. What's the pro what's the mental process? I just hope I I'm you know, my view is I don't think it's great to be keeping Australian citizens out of Australia, so it's a very dangerous precedent. We should just bring them back and lock them up.

SPEAKER_02 1:57

Yeah.

Paul 1:58

They've obviously been party to terrible crimes.

Felicity 2:01

So Well, we do in Australia recognise accessory before, during, and after the facts. Yes.

Paul 2:08

Yes. Yeah.

Felicity 2:08

But people deserve a fair trial and then appropriate actions.

Paul 2:13

Absolutely. But they obviously don't share our values.

Felicity 2:16

Share our values, isn't that poll on the lead up to the.

Paul 2:20

Yes, I know it's a it's a vague term, but I I would characterize them as I think it we live in a value soup. We can't separate ourselves from the values that define us. I check on my neighbours regularly because they're elderly. I see someone who's doing it tough on the street and I feel bad. It's a caring response. It's a values response. And I think that characterizes a lot of what we do and how we interact with each other. And and that that's one of the first things you do as a parent, not that I would know, but is you you you you imbue this I am you imbue this these values unless you're a terrible parent in your in your children. That's really important. That's the one thing that no one that they can never give away or lose is the values that you give them. So I think it's really, really important. And this is my problem, and it's what I've been writing about this way, is the dogma of health technology assessment. I mean, setting aside the fact that it's just educator guesswork, its use has intentionally supplanted values in decision making. So if you are acting ethically according to this framework, and by ethically within the framework, I mean by its rules, you can knowingly and consciously and intentionally make decisions that are profoundly harmful to people and are even life-threatening. Now, for me, that's that's morally intolerable and contrary to our shared values. And it's akin to not caring about your elder elderly elderly neighbours or walking past a homeless person, in my in my view. Because that's that's the that's that's the intention of our of our system is to dehumanize the patient, and we do it at a population level through these contested economic models. We set aside those human values and considerations and replace it with economic models, which are just a proxy for price negotiation. I think we need to have a discussion about our values, and at its worst, and I wrote about this today, sort of the the pre-Copernican view. You know, Copernicus sort of worked out that the Earth orbits the Sun, not the other way around. And we have that ridiculous consumer addendum to the HTA review final report where HTA is put at the centre and patients orbit the HTA. And that that to me is just just wrong. So I I I I think the conversation that's missing in this system is the values conversation about how we care for each other and how we look after each other. We don't do that. In fact, the the institutional framework is designed to avoid that discussion, to avoid a discussion about values. And and that has that dehumanizing effect. It's very pernicious.

Felicity 5:26

It is, and I think it's interesting that you articulate that because as someone who regularly visits a residential aged care facility, and many of your listeners will as well too, on every lift, on every doorway, is the Charter of Aged Care Rights. And you know what? The person at the centre of all of that is the resident. And what you're articulating is that if you walk into a hospital and you see your rights, you'll find that the patient is at the centre of that Venn diagram. And this is the only part of the health system and the social services system that actually puts the patient as an afterthought in respect of this is our system, and we will tell you when you can play and how you can play. And it's actually not about you, it's about us. Um it's about us the glorious PBAC, us the glorious MSAC, us the glorious sub area that's of you know the independent hospital pricing authority. It's all it's all about us. Let us tell you how you can engage with us. And so whilst the rest of the system has moved on, and patient centricity or um constituent centricity or individual centricity in any parts of our social services systems has been standard of approach since 2018. This is the system that once again doubles down and says no. Everybody else in the the grown-up world has worked out how we actually should be operating and communicating and being with each other, except for us. And you know, just like you know, PBSC and we can talk about later, is you know, the the ultimate and pay for delay in Australia. In Australia, it's it's not drug companies or medical device companies that pay for delay. It's PBSE that makes patients pay for delay in this country, MSAC that makes patients pay for delay in this country. And as someone who's had to reread the MSAC, let's figure you know, set aside PBSC for a moment, the MSAC public summary documents on why they are very happy to let babies die of Pompeii disease, because at some point if they diagnose someone and they're going to be develop that between the ages of five and fifty-five, that's just something far too unfathomable for Pompeii. Only for Pompeii, because the other diseases that they recommended in that same meeting had that same risk of later thing. And on that we can tolerate it, but on your lot we can't. And so when you talk about a values-based system, the hardest thing I've had to do in the last four months is sit in the same room as the chair of the MSAC and actually pretend to give a shit about anything he told that room about what was important for health access in this country.

Paul 8:15

Yeah, well it's the missing bit is the is is the discussion about values. What what values do we want reflected in this system? And at the moment they're not particularly human because they they do lead to morally intolerable outcomes. So within this institutional framework, these advisory committees and whoever supports them make decisions knowing that people will be harmed.

Felicity 8:41

Yes, and it it goes even worse than that because I was talking to um a a a mum of some patients who've had to traverse the PBAC system, and the abject horror that she came to when she realized that when she put the time and effort in to explain the lived experience of her children and the need to access a particular medication, to be told that no, that full application, that full piece of information would not go to each member of the PBAC. Somebody else would take it, synthesise it, and summarise it and work out where to go for to it from there. And her point to me was was quite profound when I reflect on having sat in those committees and there's 400 pages with the the company's submission and then the economic evaluation and then the company's pre-dusk and esque responses, and then their post, then the esque and the dusk minutes, and then the company's right to put in a final pre-submission to the PBAC before they consider it. So there's like 500, 600 pages of gobbledygook. But apparently these incredible people couldn't cope with having to read a two-page lived experience from an individual consumer. So when 5,000 consumers try to tell you what's really good about this or why they need something, poor little PBAC darlings, they can't read it. And that is the disenfranchisement, that is the removal of values. In a hospital system, when an ethics committee has to decide what to do for an individual patient, they must read everything. They don't get to pick and choose and say to someone, could you give me an executive summary PowerPoint plan, please, of what you think consumers kind of think about this. And they're not consumers, they're patients.

Paul 10:22

Yes, and that example is a really good one because not only does the consumer input get synthesized, quote unquote, it's then not shared back to the consumer, to the patient.

Felicity 10:32

No.

Paul 10:33

So and it's not accessible via FLIs. They refuse to release it. So this is the dehumanizing. Now, people might think that I'm criticizing the individual committee members. That's not my intent, but if people want to take it as criticism of them, that's fine. I mean, in the end, the individuals on these committees have to take responsibility.

Felicity 10:56

They are your actions, you do get paid.

Paul 10:58

Yeah, yeah, you get paid. And I think these are intolerably bad outcomes. If we are making decisions that knowingly cause harm and in some cases death, then we have to have a conversation about that. And is that reflecting our our values as a society? Now, unfortunately, over several decades, the dehumanization of patients in this process has been square. Can you put the toothpaste back in the tube almost? I I'm not sure. So people have said to me this week, What do you used to want to get rid of the system altogether? Well, I want to have a conversation about it. I don't know why we have to have these overlords deciding whether we live or die. It's all very hunger games to me. And I'm not comfortable with it. And so I think we at least need to have a conversation. What values do we as a society want reflected in these decisions? And I'm sorry, these committees don't get to determine that.

Felicity 11:52

And I think when we watched estimates last week and delightfully watched the bureaucrats tie themselves in knots as a particular senator asked them questions about access to medicines for pediatric conditions. And the acceptance that this was probably, or it was, that access to these medicines worked very much for individual patients, but they had to stop and think about it at a population level because, you know, we've got to think about the broader population, which which is code for cost.

SPEAKER_02 12:25

Yes.

Felicity 12:26

It's, you know, normally we we can dehumanize the in the impact of our decisions because I have to look at it at a population level. And as someone who has been the decision maker and the delegate in that space, I get it. It is much easier for me to have to make those decisions saying, I know that in not proceeding with something, I know that patients are going to get sick and I know that some are going to die. And that is the reality of those decisions, and you should own them and you should hate them every single day. But you use the population level to say, well, how in the in the short term I do harm, so in the longer term I can give access to more people. But that requires stewardship. That requires also humanity and allowing the values and allowing the patients in to tell you what is happening and how far that that can go. And and PBAC is pay for delay. And that's the thing that we get here. We we I know we want to talk about MFN shortly, but as I commented in the papers last week, the things that come in and that we we go through the two or three iterations of the pricing and the discussions, patients suffer in that interim period, and this HTA review is not seeking to change any of the way that process works at the moment for the majority of applications and listings. And we have to actually have the confidence to say the system's swung too far. So that the system has swung far too far, and it's so dehumanized, so lacking in value, that we've created a generation of of committees that are comfortable with that. And yes, we need to start afresh.

Paul 13:58

We need to say and I say it is a good thing.

Felicity 14:01

Yeah, well, I've been saying for four years, let's just say you've got a hundred days from ARTG to medicine diagnostics or device access in this country. If you just said that's our new world order, then government and the industry would have to work out a new way to negotiate their price and sort things out. We all need to own the fact that HGAs you run about all the time. It's it's not a science, it's guesswork. It's economics, and we can make anything. There's lies, lies and damn statistics.

Paul 14:28

Well, if it was even close to accurate, why do we need postmarket reviews?

Felicity 14:32

Exactly. And again, post-market reviews that we use to delay access, such as the ODTP. Everything in this system right now is not about enabling access, it's making the community think that we have to wait. Because if we just have to wait because we do the right thing, eventually it will be ours. And we used the process as the justification for saving a couple of billion over the next few years to delay the impact on our budget bottom line. And we saw that with COVID, where the process was used to hide the fact that, oops, we were first in a queue of two because we missed the first queue of 60. And then because we had all sorts of problems going on in this country with how we were managing COVID and access to vaccines, we made stuff up. We stood there and watched as, you know, in my opinion, the then minister and uh officials talked about, well, we're not gonna fall for what you know the rest of the world for, but we're gonna thoroughly and riggle rigorously test these things and we're gonna make sure these things happen. However, we're gonna ignore PBOC because we need to get stuff out straight away.

SPEAKER_02 15:28

Yeah.

Felicity 15:29

So every time government wants to actually help the community, they ignore PBOC and MSAC.

Paul 15:35

Yes, because no one ever introduced HTA to make things easier and faster.

Felicity 15:41

No, in fact, we've all read the explanatory memorandum and that absolutely was not the reason.

Paul 15:47

But y you make really good points. This is this is frustrating for me because I see it. And today we published an article about preference falsification and the stalina show trials.

Felicity 16:02

Yes.

Paul 16:03

Where people so value participation in a process that they're willing to say things that they don't believe. Now, everyone that I speak to knows that the HTA review is a complete joke. I think some pretty people who are pretty close to it think it's a complete joke. And no one's willing to say it publicly because they fear the consequences. And that's that's the that's the preference falsification view of the world. So we have a King's New Clothes situation where everyone pretends the king looks absolutely brilliant, uh, and no one's willing to say, I'm sorry, I I'm calling this. Nothing in those documents produced by this review over four years, and I'm going to get to the timeline because there's intent in that timeline. None of that talks about values, none of it talks about caring and humanity and loving our neighbours and wanting the best for them. What it does through these ridiculous economic models is say, actually, it's in your interest not to get treatment because it's the greater good. And this argument started sort of 20 years ago when people said, Well, you know, this is gonna cost$20,000, it's only gonna give an extra four months of life. That's how it started. And it's at the time I was going, well, yeah, yeah, yeah. That's exactly right. It is, it is in some cases going to be a lot more than four months, in some cases it'll be less. But that's four months a person can spend with their family getting their affairs together. And it's not a huge amount of money given what the government what do they want to spend$90 billion on a train from what is it with Anthony Albanese and infrastructure projects?

Felicity 17:52

Oh well, I think it's because he wants to go straight to the University of Newcastle who are doing the HDA evaluations for him. They're the ones that probably did the economic models.

Paul 18:01

It's been going since Hawke was Prime Minister, but but and so the the defense and the framing of these discussions has become far more sophisticated. And none of it addresses the values issues of what are we doing to our neighbours? What are we doing? What and and why are we doing this? And that's the conversation that I want to have because I because I believe that our system is producing intolerable outcomes, immoral outcomes, knowingly, but no one wants to discuss it because it's easy to talk about comparatives and discount rates and new processes.

Felicity 18:36

Yeah, so Fessering, let me get up my hobby horse for a minute. So, yes, the Prime Minister does value trains more than babies, but equally I'd say to Newcastle and Sydney as someone who got a you know ironclad golden guarantee from the Prime Minister that he would give Australia world-class newborn blood spot screening and in particular for Pompeii disease, and has let the entire system walk away from that and reneg on a policy that he swore to in an election to save babies' lives. Um, good luck with your train. Although you're probably right, it's infrastructure and say we'll find the money, which is loose change down there.

Paul 19:08

But you know, they've given them six hundred million dollars. They're giving them six hundred million dollars for the business plan.

Felicity 19:14

Yep.

Paul 19:14

Who's doing this business plan? Beyonce?

Felicity 19:17

Well, no, she'd do it cheaper. And it would probably be more than a lot of people. Taylor Swift's Taylor Swift is gonna be. Again, Taylor TK is probably gonna be better at it too. But yes, that this is the this is the blythe, and this is the the thing that the industry often steps over from and I've argued this before, which is in infrastructure, I can make anything have a cost-benefit ratio of greater than one if I move the parameters. Just like in HTA, I can make anything not cost-effective or cost-effective. But what the problem is in this part of the health system is that the acceptance that somehow this data is just so extraordinarily accurate and that therefore when we when we recommend a medicine that's gone through all that process, that it has to meet a higher standard of evidentiary basis for funding. I want to be really clear right now:$600 million. Let's think about how many medicines that would have given us access to right now over the next couple of years, to particular vaccines, to particular cancer treatments, heaven forbid, to the chronic disease treatments that are not getting through. This government is willing to literally throw money off the edge of a building and say, here, spend it on a nice business plan, very rich consultants.

Paul 20:32

Nice videos.

Felicity 20:33

And patients. You know that HTA is good for you. You know that you just have to wait because we could not possibly consider spending one single cent on your healthcare unless we were sure that it had been through this rigorous two and a half year process that saw X number of people deleteriously adversely affected from their chronic disease with no way to actually recover from that point, or actually just die.

Paul 21:00

And look again, I don't want to be thought of as criticizing individuals. If people want to take it as criticism, that's your choice. But I do look at that patient addendum, consumer addendum to the HCA review's final report, and you know the circumstances of that. They were presented and given a couple of weeks to put that together.

Felicity 21:21

Yeah, over Christmas, above.

Paul 21:23

Do you not understand why that's a problem? So it was just given to you as an afterthought, and then they came up with that diagram, which was HD out the middle and patients on the outside. And I just thought, what was the discussion that led you to agree to that? Did anyone put their hand up and say, I'm not agreeing to that? That is absolutely ridiculous. There's no way we can put a contested guesswork in the middle and patience on the outside.

Felicity 21:55

I think you said everyone's so grateful to be at the table, and it doesn't surprise me anymore because. Because I've watched patient groups welcome MSAC rejecting consideration of newborn screening and actually rejecting even officials not even letting it go to MSAC. So I'm not surprised anymore because it's those who are actually so embedded in the system that the reason you want throughput, the reason the Novel Technology Inquiry recommended six-year terms, not just for consumers, but it really should be for everyone on there, is because if you look at uh ASIC guidance and standards for governance on boards, you really shouldn't be there between one, sixth, and ten years.

Paul 22:36

Certainly not 25.

Felicity 22:37

Yeah, because the reason is, you know, and and we want what we want to talk about diversity and equity and inclusion, and that's a conversation that we're going to come to in a couple of weeks, I suspect. Diversity, equity, inclusion isn't about race, age, and profile. It's actually about skills and throughput and changing people in the system. If someone has been on there for 20 years, if you've got a group with a collective expertise and that there is now greater than 10 years, you have groupthink. You have to actually break things up. You should welcome new people. Why do we all love employing graduates when we're in you know big firms? Because they bring new ideas and fresh thinking and an opinion. And why do you like it when you're on a recruitment process and someone comes from a different sector or a different area? Because they see things differently. It's it's the old school of, you know, if you want to go back to the de Bono hats, it's the De Bono hats. But it's just we have a system that is so entrenched in itself. And I had a very interesting conversation with um some parliamentarians' officers this week who actually questioned where do patients fit in the PBS. You get them that's shine the diagram. I I did actually I I said it's funny you should mention that. But I think that's a really interesting point is that you know we've we had this in I remember a particular individual used to call for a Royal Commission of PBAC, and so that's that's not the way to go about the change. I'm I'm starting to question whether sometimes you need it. But we had a a Royal Commission interrupted to age care, uh, to disability and to suicide uh in our return service and servicemen and women. And we did it, and it was the thing that needed to make the system actually stop behaving the way it was behaving and reflect on itself and change because externally it suddenly lets everybody in to have that conversation and say this is wrong. The dramatic age care reforms that are going on, which are hard for the sector, like they're happening so quickly, and so you know, we can talk about the administration. But everything that we're doing now to try and you know ensure there's better food, ensure there's better, you know, a social time, ensure there's more listening to the resident rather than telling the resident, you know, they're not they're not in hospital, they're not um in prison. This is their life. That effort has come about because of a royal commission. And meanwhile, we allow this part of the system, which literally determines life and death for too many people in this country, and we need to own that, or permanent disability for people in this country because they're not getting timely access to chronic disease medicines. We let them review themselves, talk to themselves, then even write back to the committees about themselves to say.

Paul 25:21

So they're world class.

Felicity 25:22

We are world class, and by the way, that review you didn't know, you didn't really need to do that. So we have got to this point, and it's hard for someone for me who was in the system to to always feel like she's like punching at it a bit. But I also think it's my responsibility to Well, someone's got to punch at it. We've we've got to do better, and it's time that this was not actually done. That's why we call for it. Like, you know, if you're not gonna independently review it, then let it go to the Administrative Appeals Tribunal.

Paul 25:50

Remember when the HCA review was described as independent?

Felicity 25:54

Yeah.

Paul 25:55

We were laughing about that as a independent PBAC. The reference committee has the senior official administrative programme on it. It's the definition of not independent.

Felicity 26:05

Exactly.

Paul 26:06

It's administered by their team and they're on the reference committee.

Felicity 26:10

And members of the PBAC are on the review.

Paul 26:13

And then the PBAC basically got to red light, green light. Go no go, the recommendation. But anyway, look, look, I I've got you know, I always say that if you want to get an understanding of the mindset here, you've got to watch Yes Minister. I know it's a very but it remains relevant in 2026, just as when it was made in the late 70s and early 80s, because the language hasn't changed. It's still the same. And I I could I it's the sort of it's a can I call it, and the HTTP review is a classic example of this, as all PBS stuff is consent and evade. So the minister would have said, Well, we need to review this, obviously. You know, there's obviously some issues with it. And they would they would have said, absolutely, Minister, you need to review this program. It's more a question of you know, ideally we'd like to do it quickly, of course we'd like to do it quickly, but we also have to consult with stakeholders, engage and consult stakeholders, otherwise they may not support the outcome, and that would be that would be very unhelpful. So consultation is going to be absolutely critical to doing this process. Of course, that takes a bit of time, and so they're constantly consenting to what the minister says, but then evading by bringing in all bringing in all of these straw men. And ultimately, and you get it with the HTA review, we saw it at estimates. Well, you know, it's stakeholders demanded they be consulted. This is why it's taking so long. Stakeholders ultimately get to blame, and they squeeze the life out of out of um out of these processes. And that's it's it's deeply cynical. But as you and I have been saying for four years or five years now, since this was announced, this was always going to happen. They squeeze the life out of these processes.

Felicity 27:53

But even more so, this was the review that small G government wanted because there's more that they want to do with cost recovery, there's more that they want to do with you know, submission churn. We just like, you know, money in, you know, one last chart. Remember? One one go. Yes, you get one go. You get one go. That was how it is. So that's a really good example of where they're also willing, they they get a double whammy of this. A, we slow it down, b, we actually get what we want out of it, and we can already see you know what's going to be to be linked in that and some of the things that they will process more quickly than others. And I always contrast that to the National Medicines Policy Review, which was you know consulted with a select group of stakeholders on the terms of reference. Then COVID hit and we're all too busy and too worried to do that. Then suddenly we bring it back on again, and you know, patients can have two weeks to be consulted on the new National Medicines Policy Review, and so we have to fight like anything in this world to get that extended. And so then that is done, and then when we ask for those submissions to be shared so that we can see what was actually given input, we're told no, that's just far too confidential. So we have to actually start our own rebel website for people to post their stuff to share information. Also, then we decide we will release these things, and then we decide that you know the final one you'll you'll all get a couple of weeks and again patients and bless Nicole Cooper, who was, you know, leading the charge in that while undergoing treatment for cancer, and joining with us saying, I I need a bit more time in between treatment, I need to respond to these things. There was a really good example of something that wasn't wanted by the department that was begrudgingly done, and so they did everything they can not to consult, and that anything that actually consumers put in and patients put in was, you know, given a I guess. And what what did they pick up? So they went on the environmental course so that they could blame patients for wanting medicines because that's a cost to the environment and the carbon footprint, which of course, as you later deconstructed, wasn't true, and they went for disinvestment.

Paul 29:49

That was about the shoddiest piece of work I've ever seen. Yeah. The carbon footprint claim, which is just based specifically on spend. The logical extension of which is that when a pr a product goes off patent and the price drops 25%, its carbon footprint drops 25%. Even though its utilisation probably goes up.

Felicity 30:06

Yeah. So um look, you know, it it's always it's always funny to watch. You can tell when then, you know, all but like I said, the post-market review of the opiate dependence treatment. What happens when you get in trouble and you realise you might be about to have to do something? Well, we should de uh ministers called a review the day before we had pre-readestima.

Paul 30:26

I thought it was the morning of the Yeah, I think they released it the night before and they it was announced in the morning. Yeah, yeah, this is I I can and this is where it's tough being a minister, especially when you're nationalising general practice one urgent care clinic at a time. I still can't understand how the doctors are allowing this to happen. Yeah.

Felicity 30:42

But but show them what to do, show them what to do.

Paul 30:48

Can you take over those doctor groups? You can have a foresee a situation, or imagine a situation where the minister says to the department, can you give me a list of possible things that the HTR review might consider? Like, so I think we should start from scratch. So let's let's start from the perspective of let's just put everything on the table and then we'll sort of green light, red light those things. Give me the things that you think we can do without. And the department would sort of go away, busily walk away, work away, and then come back and say, Well, Minister, we've comprehensively reviewed this. Uh, and we've identified a couple of things that I think we can really do to improve this system. Oh, fantastic. What can we do? Well, we definitely need a path to disinvestment. And we definitely need to think about high cost recovery fees. And a minister dealing with a hundred rolling disasters, which is what the health portfolio is, it's I think it gets to a point where it just it just wears you down. And and I wonder whether Mark Butler is in this situation with the HTA review where it's basically it's consent and of oh yes, minister, we're absolutely working on it, we're absolutely working on it, and they're just pushing it out, pushing it out, pushing it out, pushing it out. And the stakeholders aren't speaking out. It's not like it's not like he's getting in trouble. I mean, Ann Rustin kicked up at estimates I thought very effective last week, but the industry not saying anything about it that I can see.

Felicity 32:13

No, because they said there's something coming, and I think also that I mean but if you think about it as an industry, I mean maybe they're not kicking up because is there actually anything in there that you really think is going to do you any good? Or actually, heaven forbid, do patients any good. So I think it's also I I do feel sorry for some in the sector, because you're damned if you do and you're damned if you don't right now, which is if you agitate and say, well, we should be trying to sort some of this out, you're accepting the premise of everything that's gone into that and the suboptimal recommendations that come from it. But if you don't agitate for it, then it seems like you're disinterested. And I get that. I get that's a difficult tension. The the industry needs to liberate itself and say, you know what? We're done with this too.

Paul 32:59

Yeah, we're done with it.

Felicity 33:00

The the things that we wanted was this, this, and this. We we wanted faster access to things, and we would just want to start again. Like we just this this is just incrementalism. It's stuff that is going to be linked to it.

Paul 33:14

Remember that thing Labour put out in the 1990s or whenever it was? The network and Barry Jones put it out. It's just this and they call it noodle nation. All the connectivity between all the different processes, and it's like it's they've got to start thinking about post-review world because this review, Mark Butler has very effectively used this for four years as an excuse not to do anything.

SPEAKER_02 33:37

Yep.

Paul 33:37

He's intervened intermittently, which, as I argued this week, is a sign of a much deeper problem.

Felicity 33:43

Correct.

Paul 33:43

That is he has to intervene in order to get things through the system. That should be taken as a problem, but he's not getting he's not under any political pressure, and he's allowed to come out and say, Well, the HCA review is absolutely critical. It's imperative that we review and we get things going a bit a little bit better. I've asked the uh department uh to consider the guideline review on a rolling basis, a submission guideline review, and that part of that is redefining high unmet need and high added therapeutic value. Like what are you what are you talking about?

Felicity 34:19

Yeah, it's all gobbledyge. It's all gobbledyge, and you know, like I said, it was it was a lovely off-the-cuff speech he he gave at the GBMA, and he he can roll this off because it's all it's all patter. It's all it's all so embedded and entrenched. And you know, for for a minister that now has disability as well in his portfolio, there are so many more urgent things and things that uh communities demand attention to. And this is the the medicine system and the the HTA system has it's almost shackled patients and patient groups and industry because this is what we do. This is what we do. What I love about being part of broader sectors in social services, aged care, uh, disability is there is no shackling. There is freedom, there is anger in advocacy, there is respect, there is patient centricity, residence centricity, participant centricity. Every meeting I'm engaged in with respect to the NDIS is about the individual and how the system is responding to it, good or bad. It can be about, you know, how do we afford this or the new plans or but recognizing the individual, actually, you don't have to explain that. It is actually taken for granted. You can take it for granted that people are seen that way. I'm not saying the systems are perfect, but I'm saying that the way that they consider their roles, the way that they allow for engagement and advocacy and consultation, and the way that they seek to reform is actually based on the individual, which is why when Anne Ruston was really going in on the whole home care packages and the delays on that, and you know, 100% thanks to her for doing that, because most people don't realise what's going on with the once again, it's the bureaucracy's inability to keep pace with the evolution of um access. So, you know, I've been to a number of uh functions now where the health minister, who's also the minister for aging, alongside uh Minister Ray, talked about, you know, in the next 20 years, this is what's gonna hit us with the aging population. We've been talking about an aging population since I entered the bureaucracy, so that's pretty scary. And this whole it's now suddenly here, and oh, suddenly we don't know what to do, and suddenly we're gonna need this many, you know, residential aged care facilities in the next 20 years to deal with an aging population. This isn't this isn't about the community and our failures. This is about the bureaucracy and its failures to plan and to listen. And part of the problem is because in the previous decades, when we were slow to respond to what needed to be done in aged care, which was what triggered the need for the Royal Commission, now we're catching up. But it's because when a system and a process is slow talking to itself, it won't change.

Paul 37:20

Let's no. Uh let's talk about MFN, most favoured nation pricing. Uh I just want to remind people that okay, if you want to work on potential solutions, okay. But does the government recognise it has a problem? So I would have thought that the first priority would be to convince the government that this is a problem by showing them credible evidence and then identifying or planning for or trying to find a viable pathway to a negotiated outcome. Because I can't see that yet. The government have been very smart in how they deal with this. They say, well, of course we're concerned, we're talking about it all the time. They're not actually doing anything about it, they're waiting to see. So as I understand it, the industry is talking a lot about potential solutions to it, but I they're not you're not even close to a negotiation yet. The government hasn't acknowledged or or admitted or expressed a view that there's a problem. So providing evidence of that is really critical.

SPEAKER_02 38:26

Correct.

Paul 38:27

So what we're hearing a lot, and we saw it in the pharma uh submission to the 301 process where they wanted to put all the guilty countries, the the identified countries, including Australia, on the priority watch list, and that may happen, it doesn't actually mean anything. But the claim is that Australia only re-embut versus 24 of the medicines that are proved in the US. Okay, it's interesting. Probably historically may not have been much higher than that. The US market is not really comparable, it's much bigger, it's far more dynamic, it has different incentives. Some of those medicines, unfortunately, are therapies developed and commercialized by Australian companies who don't bother with Australia. I can think of a couple of examples of those.

SPEAKER_02 39:09

Yeah.

Paul 39:10

So so for me, my question is so what's the potential impact of MFN on that? Is it going to go to 22%, 21%? What's in the 76%? What's in it? What are they? The industry's never been very good at this, and I can remember from my time in the US asking for a list of medicines that aren't available in Australia. We've got a bunch of anti-hypertensives, third-in-class drugs, anti-infectives, stuff that we didn't end up sharing because it wasn't very helpful. So I think we need to understand what that 76% is. How many of those does the Australian government actually want or are they happy not to have? Uh medicines that an Australian government wants, there's some fairly recent examples. They tend to get through the process pretty quick pretty quickly and easily because it shows flexibility. I would just encourage people, don't go straight into tactical thinking on potential solutions when the government hasn't yet accepted that there's a problem. Or let alone agree to negotiate any sort of settlement or not.

Felicity 40:26

I agree with you. I think there was an the system was alert and slightly alarmed last year when uh President Trump was talking about MFN and what that meant. And you could see the government and the system worried. The problem became that everyone sort of watched and waited, including the sector. We're not quite sure, we're not quite sure. And now, like you said, there's the the information coming through and saying, well, now we think it's a problem. But there's been kind of a dearth of understanding, and everyone's kind of got comfortable. This thing's probably gonna be alright. This thing's probably gonna we we're gonna be a few percentages of of a total bucket or something, so we're all gonna be alright. And you know, I think you make a really important point is that it's good to understand that only 24% of new molecules have come to Australia in the last ten years compared to the 460 that were released globally. But if you don't unpack that for us and explain to us genuinely what we're missing and create that sense of fear and certainty in the community and an alertness, which gives the minister a problem, then this is just the same thing. It's no different than, you know, well, we can only do something if a submission comes forward and you know, only if the company agrees the price. The department can very much the process. And they're ready for it. And that's that's a tale as old as time, and it's a tactic as old as time. So you have to confound. And I completely agree with you, there is no there is no to quote the minister, sense of high unmet clinical need.

Paul 42:09

I accept that there could be a problem.

Felicity 42:13

Yes.

Paul 42:15

But there needs to be evidence of it. It's not enough to assert. The industry over the years has done a lot of asserting and governments have found it very easy to defeat. If companies are not bringing medicines to Australia because of the more assertive US position, and I'm completely with sympathetic with the US on this, they're simply doing what Australia and countries like Australia have been doing for decades, so we can't really complain. But and I don't think talk about values, I don't think we should value being a global charity case on those things. We should pay our fair share. Do we pay our fair share? Probably not. We've got away with it because no one cares. Well, now people care. And if there is evidence of that, it involves companies being willing to put it forward. So I think sitting in a room and brainstorming ideas about potential solutions, that's fine. But you've got to really plan for a path forward towards avoid to get governments seated on the other side of the table talking about, well, how do we resolve this? And part of that is providing evidence of the problem. If companies are not bringing medicines to Australia or they're not getting approval, then you need to start talking about it. It's not enough to use florid language. You have to actually provide evidence because the government's not going to move otherwise. I think Mark Butler has made that very clear.

SPEAKER_02 43:35

Yes.

Paul 43:35

He certainly did at the GBMA summit where he said, yes, I I am concerned about it, but I'm not changing the architecture of the PBS, which is an insane view, in my view, in my opinion, because he's saying, Okay, so you're just gonna let us go because of some weird adherence to this stupid system.

Felicity 43:55

It's a dogma.

Paul 43:56

It's a dogma, it's a dogma. But but he's saying that as a negotiating position. He's just putting that out there saying that.

Felicity 44:01

He's doing a Trump.

Paul 44:02

He's just negotiating. And so and but I think see, the industry aren't good negotiators. When I started working in the system many, many years ago, the head of pricing in the health department said, I said to him His name was Alan, I won't say his last name. His daughter actually works in the industry.

Felicity 44:21

Everyone's gonna Google now.

Paul 44:22

No, no, no, no, no, no, no, there's no way, because the internet didn't exist basically back then. But he he was a great guy. And I said, geez, I said, just a lot of companies who complain about pricing. I don't want to he said and he literally said F them in this country for their price takers. And he's and he's right, you don't really negotiate, and it's it's not people talk about negotiation as if it's like buying a house or a car, where you've got a willing buyer and a willing seller. Here you've got a willing seller, a very enthusiastic seller, and someone who is only willing to buy under certain circumstances that are very strongly in their favour. I mean, people sort of laugh about Trump's very assertive global position on things. Well, that's pretty much the PBS. It's very assertive and it leverages its power very aggressively, just like the US is doing at the moment. So they don't know really when they're in a negotiation and when they're not, because they don't do a lot of negotiating. I know that the industry's leadership over the years has done a lot of negotiation training. Doesn't seem to have I know he's been doing this training back to 2015 and even in 2020, they did they got these negotiation trainers in. Like, did the trainers say to give up everything before you're actually in a negotiation to agree to the price cuts up front? I find it hard to believe. So they're not really, they don't understand when they are and when they are not in it in a negotiation. And I think that's that's the first thing is you've got to treat this thing like we're not conceding anything. So to be wandering around Canberra and briefing health department officials on potential solutions, which has happened, is a shocking sign of ill discipline. It's the second week I've gone on about this. But the history of this system is there's only one example of the industry securing really beneficial outcomes in any negotiation, and it was because the US government were leading the negotiation. And if there's an opportunity to get that dynamic going again where Australia has to concede something in order to get something or at least retain it, then the critical thing, the critical thing is to not concede anything until you're in the room. And you're not even close to being in the room because the government, the Australian government, doesn't accept it has to concede anything.

Felicity 46:39

Correct. And and I think you're talking about things that have been shared with um officials, and I can tell you right now that on the hill that is very clearly known and that there's actually a pretty simple solution, and so there is really is nothing to see here.

Paul 46:58

So it's a technical bureaucratic solution, is what what is what is being proposed.

Felicity 47:02

And people have, oh, that's pretty simple. Okay, we'll sort that out, no problems. There isn't actually a problem. And it's go coming across as if there's if this actually does turn out to actually really be a problem, which people don't believe at the moment, then there's this really simple doesn't cost us anything solution that's around and ready to go. So what are we all worried about? I need to focus on something else. There are actually so many other things that are more um fractured and at risk in the health system or social services or you know, taxing you know, taxes, etc. That yeah.

Paul 47:40

Yeah, well, it's you look what the US accepted from the UK, which was an agreed increase in the cost-effectiveness threshold used by Nice. Now, I'm sure Nice aren't very happy with it, but I don't think anyone believes that's gonna make a material difference.

SPEAKER_02 47:52

Yeah.

Paul 47:53

Because they'll just get it back using the 50 other levers they've got, and Nice is just the precursor to a price negotiation. So they're just gonna wait around, wait around, like these systems do. Is that if you're not willing to attack the institutional framework, which goes back to where we started, with a values-based discussion, but unfortunately values morality is really hard because you can't put in a spreadsheet and it doesn't fit an economic m economic model, which is exactly why it's so powerful.

Felicity 48:20

Yes.

Paul 48:21

Because spreadsheet discussions tend to just lead to more spreadsheets.

Felicity 48:27

Well, you know, and we saw that with uh women's health, which is that the spreadsheet discussion had denied access to uh 30-year-old contraceptives because the 50-year-old ones were more just just fine, ladies. Just fine.

Paul 48:42

But then it was the company's fault because they weren't submitting quality of life data. Apparently, yes. How can you even say that was straight face?

Felicity 48:53

I agree, and I guess it's a very good example of where the human concept, the value construct of what it means to be the patient that's told no, what it means to be the patient that is paying for that out-of-pocket every month, what it means to be the patient that can't afford the menopausal or perenmenopausal treatment, or actually just can't afford the contraception and is relying on the morning after pill because that's that's the price that we were paying, because the basic 50-year-old medication did unfathomable, you know, harm to women and the the lack of poor um hormonal balance. It gives well it's a bit of a technical discussion there, but the reality is that's why something that's outside the spreadsheet matters, because it took a clear government policy to say, you know what, women in the health system are getting a really, really raw deal right now because you are not valuing what it means. You are actually valuing it as a number and uh a Kaplan Meyer curve economic model as opposed to this is the lived experience, and we've all had enough, thank you very much. So you find a way. And you know, as I I remind a lot of people at the moment that the department can make a bit of carry-on, as we saw at estimates about oh, you know, it's an independent process, and we don't, you know, put in, and as you reminded everyone last week, we'll we don't tell them what to do, but oh yeah, we do give them advice, you know.

Paul 50:17

It was quite we don't provide an opinion.

Felicity 50:18

We don't provide an opinion.

Paul 50:20

But we do.

Felicity 50:20

But you know, PBOC is not independent, PBOC is an advisor to the minister, and we have better access to women's health care medications because the minister directed his committee to say, you find a way to make this work because this is a priority and a need in the community. And it's we only got that because a minister talked about that value proposition, talked about the fact that this was not acceptable for the health care of women from the ages of 16 to 60 in this country. That was values-based, that was not economics-based.

Paul 50:57

Yeah, and that's that's why the intervention we it would be good if the minister actually thought about this more broadly. But that some pressure needs to be applied. Hey, the health department has just released the evaluation of the Medicare Urgent Care Clinics, interim evaluation report number two.

Felicity 51:13

Oh, one that Senator Rustom was waiting for.

Paul 51:15

Oh, I know you just know this is gonna say it's brilliant. It's great, it's brilliant.

Felicity 51:20

Please read me announcement.

Paul 51:21

We need we need we need more. We need more. Really? We need more. It's 170 pages. Right. Oh dear. Well, it was actually so Senator Rustman was asking for this last vote. She was. It was delivered on the 2nd of December last year. And they've released it the week after estimates. What a coincidence. Maybe it's not so positive, who knows? But the graphics are good, you know, they do go big on the infographics.

Felicity 51:47

Whoever's doing their crazy team a hundred percent. Every penny.

unknown 51:51

Every penny.

Paul 51:52

Oh, guess guess which which guess which cons consultant did the uh did the review.

Felicity 52:02

Tell me.

Paul 52:03

Now screwed.

Felicity 52:04

Oh no.

Paul 52:06

They are the consultant du jour at the moment. I suppose they can't use the law or any of those.

Felicity 52:12

But it's also because they employed all the former deputy secretaries from health that were let go and suddenly they all work at NALS.

Paul 52:19

Yes.

Felicity 52:20

Well I come up. I'm just saying.

Paul 52:26

Yeah. Well, I'll I'll have to have a look at this. Okay, Felicity. Well, you know we're close to launching our new website.

Felicity 52:32

I know, it's very exciting.

Paul 52:33

I showed it to you today. What did you think? It's pretty good.

Felicity 52:35

It's very impressive. Um it's very impressive. It uh it thinks. It actually doesn't just sort, it thinks. Yes. And that's what you're looking for, and it responds very well to what the user is seeking.

Paul 52:52

It's uh well at the moment we have sixteen thousand articles and over six million words uh sitting on the website, and they're largely useless. So yeah, but that it takes time. This is going to really change that. I was looking at it sort of a couple of days ago thinking we are weeks off being able to launch this. But the team in the US did some fixes and today it's coming. It's really good.

Felicity 53:25

To your listeners, Paul is actually really, really excited as someone who's seen him go living the ups and downs of this at the moment. It's the first time I've seen him actually really smiling and bubbly with enthusiasm.

Paul 53:36

Yeah, it's it's I think it's going to completely change the business, to be honest, but uh we'll we'll see. Alrighty. Well, I hope everyone has a good weekend. Hey, isn't your favourite TV show? Is that when does that start? Drive to Survive? When's that going? Oh, not till the 28th. Oh.

Felicity 53:54

It's not that I know.

Paul 53:55

What time?

Felicity 53:57

Sorry. I've been watching all I know. The exciting part this week was that um Bahrain Week 2 of testing is actually live for the full eight hours, so I'm good.

Paul 54:05

Did you watch the maths dinner party?

Felicity 54:07

I don't do maths.

Paul 54:08

I don't watch all the weddings in early because they're too schmalky. I only watch the dinner party. I would love to be a producer on this show. Because all they do is say, what are we gonna do this week? Well, my daughter off just let him let's get them drunk.

Felicity 54:19

If if you're on Stan Plus or Binge or whatever it is, where you can watch the the unseen footage.

Paul 54:24

Yes, the unseen footage. It's a great product extension.

Felicity 54:27

It was wild.

Paul 54:28

I mean, they're just terrible human beings. They're just terrible human beings. In my humble opinion. But it was just yeah. I've never seen anything like it, to be honest.

Felicity 54:44

I think I think there's a there's enough sadness in it in the world for me that it lets me down to not have to watch that.

Paul 54:51

It was, yeah, it was uh just some very angry people, and then you they get a couple of prosecco's in them, because I'm 100% sure it's prosecco.

Felicity 54:58

It's not good.

Paul 54:59

Bit of Pinot Grigio.

Felicity 55:01

I heard there's only one Lou.

unknown 55:08

Really?

Paul 55:09

Yeah, God, that'd be like a long haul flight in economy, wouldn't it?

Felicity 55:14

Not something you'd know about, but anyway.

Paul 55:16

Steady, steady. All right, everyone. Have a great weekend. See you, Fisty.

Felicity 55:22

Bye, Paul.