The 'Dispatched' Podcast - Series 5, Ep .24

A very busy week with mostly relief for patients accessing PBS-funded multiple sclerosis medicines, but what does it really mean, and what is the opportunity? Reports and their questionable citations. The most cynical use of language in our health system.

Transcript

Paul 0:08

Hello and welcome to the Dispatch Podcast. My name's Paul Cross. I'm delighted to be joined by Mark Who Hurst, Felicity McNeil, PSM, Chair of Better Access Australia. Hi Felicity.

Felicity 0:17

Hi, Paul. Long week in politics.

Paul 0:19

You've had a busy week.

Felicity 0:21

Uh yeah.

Paul 0:22

Congratulations, by the way. I thought you were absolutely fantastic on the 730 report. And again this morning on the ABC News. You're the new go-to person for the ABC.

Felicity 0:34

You never thought you'd hear someone say that about me.

Paul 0:36

No, but I have to say, it was great and and really informative and thoughtful.

Felicity 0:43

Thank you. That's very kind to about you. And I know we're going to talk about MS and the broader PBS later. But um yeah, it's it's it's been a long week, and uh sometimes you've got to put yourself well and truly outside your comfort zone and do what's best for patients.

Paul 0:58

I know you don't like doing it.

Felicity 1:01

Uh no. How long did it take you to convince me to do a podcast?

Paul 1:07

But uh you did you did really, really well in breaking these issues down. And what I love the most most is that you didn't use the terms discount rate or comparator. Who knew that uh you could actually get traction without without arguing those things?

Felicity 1:24

Uh well, you know, like I said, I know we're gonna talk about it later. It's it's a really good example of where patients have explained what this all really means to them. And when the system overreaches, that's the greatest opportunity for organizations such as Better Access Australia because it's no longer the exception, it's the rule, and we can point to why we have a problem with it.

Paul 1:48

Yeah, we're definitely gonna be talking a bit about that. I wanted to start by talking about AI.

Felicity 1:55

My favourite topic. Well Well, actually, no, not this week. I mean, which one to choose?

Paul 2:01

Well, apparently the big the big the great idea we've got as a country is a new bureaucracy, an office of AI. I wonder if they're gonna have a commissioner.

Felicity 2:10

Well, I mean, I I've been reflecting back on former Deputy Prime Minister John Anderson and you know how he does those vodcasts. And Australia has the uh the proud achievement of you know the the greatest number of public servants per per capita in the world, and we were worried obviously that it was going to be taken over, so we created another institution. If we don't want to do something, we create an institution.

Paul 2:33

As I always say, if there is an agency for something, there's gonna be less of it. Absolutely. So so the idea that government can somehow establish a regulatory framework, national regulatory framework for AI, and that's gonna end well, is just absolute lunacy.

Felicity 2:50

Well, if it's any like the um housing agency.

Paul 2:53

Where there's less housing, skills, where there's fewer skills. You've only got to look at Europe, the difference between Europe and the US on AI. Yeah. And AI is just supercharging the American economy because to a very great extent, they're innovating and letting it run. And Europe, they're regulating it out of existence. And it's absolute madness is that we have to embrace it and it and it's a bit you know, and there's no better example than healthcare. And the minute I hear people talk about it's really critical that we have human oversight of it. Because I'm not really sure what that means. To me, that's like one of those discussion stoppers. No better example also than health technology assessment, where we should be using AI to get rid of process.

Felicity 3:40

If only we had patient oversight of HTA, we wouldn't be having the problems he had today.

Paul 3:45

That's right, because uh uh HTA generally does it its best best present best presentation of of looking like it's been developed by AI. But we should be thinking about replacing, not adding.

Felicity 4:00

Absolutely. Um and it'll it's the same the pricing conversations we've been having, but it is a real a real concern. And so those of us who use AI regularly in our work, whether it's voluntary, paid, it is a standard tool, even if it's not something that you use for your own research and uh collaboration. You need to understand how it works and the information it gives to the community and individuals. Um, Cube did a fantastic presentation at your conference.

Paul 4:29

Yeah, yeah, yeah. Bonnie, yeah.

Felicity 4:30

Bonnie, yes, and that analyzing how patients, how the system, how we are changing our education status with AI, and to actually say we're we're gonna set that aside and we we don't want to learn from it and we don't want to integrate it to expedite some of the basics. That's very short-sighted. You and I both know that we get out of AI what we put into it. It is a you know, large language model. It learns from us and we learn from them. And what does it help us do? Pull things together, analyze faster, read documents. You still have to have intellectual capability and subject matter knowledge to be able to really get down to the nitty-gritty of strong evidence that you want to for your positioning. But that's the core way of working today. And for a, you know, a government that always talks about, you know, being work ready and we want, you know, the jobs of the future. If you are not understanding how to use AI, it's basically the Encyclopedia Predia Botanica from 70 years ago when we used to all be taught how to read an encyclopedia and then find the information and go to the library and look it up on an old card and do it. That's what we're doing now. It it's doing it for us on our computer, it's putting it together, and then we need to teach people how to challenge that information, verify it's good, and then use the fact that you can do that in 24 hours, not 17 weeks, and get to it and outcome faster.

Paul 6:02

Well, yeah, but of course, there's so many vested interests in healthcare, and some of them are not the most obvious ones. There's so much vested interest that AIO is a risk to them. AI is a risk to everyone, it's a risk to my business. That's why I embraced it. Because my theory is that it's actually going to make good better and bad worse. So it's going to commoditize and mean that there's a lot more information out there, and the good information will be even better and more valuable.

unknown 6:31

Yes.

Paul 6:32

And if you're not, you know, if you're not able to produce that, then then you're then you you're you're at risk. And so I just the this the government's great idea is to create an office of AI. It's like, really? Like how how how long was the meeting that that led to that idea? We're going to create an office. I wonder if it's got a logo yet.

Felicity 6:54

Well, we'll have to get AI to develop that for us.

Paul 6:57

Look, the other the other thing, the other thing I wanted to talk about was you and I saw we just laughed, was that Jacinda are doing all these government agencies going to going to hear the former New Zealand Prime Minister who now lives in Australia apparently.

Felicity 7:09

Because she needed medicines access and couldn't get it in New Zealand.

Paul 7:13

It's absolutely infuriating.

Felicity 7:16

Well, I think when we were talking about this, I remind you we had this conversation 12 months ago w about the Women Unlimited in Canberra, where uh Hillary Clinton and former Prime Minister Julia Gillard were speaking. The same thing, paying $3,300 for a ticket. And the same marketing model. I mean, to those who run conferences, we've worked it all out. So what you do is you get a couple of big high flyers in, and then you ask a couple of senior public servants to join them on the stage and be speaking at that conference, and suddenly what do they do? They buy a shitload of tickets. And you know, oh, it's about investing in my staff, and it's about leadership. It is it is extraordinary. So it's not only the money that they are paying for the tickets, it's the time that they're spending to go and listen to their own boss talk to them. If you haven't been listening to your CEO by now, I mean it's a bit late. And then all the time and effort that is going on within that agency for that CEO, that secretary, to prepare a speech, to spend the day at I mean it's a networking opportunity, Felicity.

Paul 8:21

Come on.

Felicity 8:21

I know it's networking, because imagine in leaders like Jacinda Adoon. We don't go into work.

Paul 8:25

Dame Jacinda Adoon, sorry. I think she's a dame now. I mean, just watch the Netflix series on her. I mean, the fact that they I mean, people like how reviled she was in New Zealand when she finally stepped down.

Felicity 8:37

And I want to make it very clear, this is not about her being a woman. This is about her leadership. As he's always said, whether you're a man or a woman or a they or a them, your inability to do good policy and your ability to make really bad decisions is gender neutral.

Paul 8:53

Well, well, I you know what I always say is that the the the emergence of female leaders, which is obviously uh a a very positive thing, but it's proven that women are every bit as hopeless as men.

Felicity 9:02

Well, they can be. And that's the thing, it it's not about her gender. It is about let's have a grown-up conversation about what we learnt from that. And you and I have both been to New Zealand uh to the patient forum uh with respect to their lack of access and the the despair I have with that because they sit there and go, Oh, we just want to be Australia. And obviously that's why Disney has moved here, but more importantly, I'm like, you do realize how sucky our system is right now. That's not true. But when you're coming off such a low base, and if you look at the economic challenges in that country and the health challenges in that country, and the complete disrespect they had for health, they had respect for COVID. If only they'd had that much respect for every other disease and risk in in New Zealand under her leadership. But yeah, why are we spending this money? I mean, 28 staff going from Australian Signals Directorate? I mean, are they just going to be winking at each other, going, I know who you are, but don't they have more important things to be working on? Isn't that what look I'm all for?

Paul 10:11

Did you say 28 are going? Yeah, yeah, from the Defence Signals Directorate.

Felicity 10:15

Yeah. So I mean, I'm I'm all for development and lean and learning and listening to different people with different perspectives. It's really important. And in fact, it's one of the weaknesses in our bureaucracy and in our PBSE system, which that it's got so siloed and only is its own echo chamber that we have the crisis that we have right now. But I do also want to look at the fact this is taxpayers' money and there is that. And what is the best investment? And is it really sitting in a in a room listening to this, or are there other ways that we could do it, or are there slightly cheaper conferences you could go to to equally hear people of profound uh knowledge, experience, and the lived experience of being at the hands of your decision making?

Paul 11:04

Adurn, she was working at the UN, wasn't she? A vile anti-Semitic institution.

Felicity 11:11

Uh yes. There's there's a lot of interesting things going on. And and I I do hope someone in the in the room will have the bold discussion, which is so the ultimate privilege I would expect is to lead your country, to be the elected leader of your country. I mean, I can imagine no greater um bestowing of privilege and humility. So why the hell have you left it?

SPEAKER_00 11:38

Yeah, that's what that's like they sold the house, too. So they've moved. They've actually departed New Zealand.

Felicity 11:46

It's very um Kevin Rad, very boutros, boutros, Kevin, which we all knew that his um time as PM was just his uh audition for the UN and it failed.

Paul 11:54

All right. Uh let's let's get on to the issue du jour, which is MS medicines. Yeah. Uh well we have we have uh an outcome, which is and I I pending outcome, yeah. Yes, I've said to people that this this is this is not a system that that that ever gives unconditional surrenders. You're never gonna get the guy on the top hat in Tokyo Bo Bay signing the the unconditional surrender. It's just it's just not how this system works. So it's bought a bit of time. And my advice to the companies is this is what winning looks like in this system, but given the amount of money, and I understand it is a lot of money basically, they're gonna come at you through this review process and the and the industry agreement negotiations.

Felicity 12:50

Oh, absolutely, and I think as you were talking on uh ABC this morning, uh we won a battle, but we haven't won the war as patients. And it's a great first step, and everyone can say, Great, they're still gonna be listed, they're still at that price, so life continues. But the minister could have just said, enough's enough here, peeps. Like, all right, you say it's all right to be listed, then let's just list it. This this post-market review, as you've like rightly said, is the way the system begrudgingly says, we don't want to do this, so we'll we'll hold back and um we'll we'll have one last go at it, whether it's you know try transitioning to what you know what medicines can be prescribed first or second, or even just to take the six months to make it look like they didn't back down on something that they they agreed to. And it does worry me because we're still putting patients through the ringer. Oh no, here you go, contribute again. Oh, here you go, companies, contribute again. We we're evaluating the same pieces of information that we have evaluated uh when this new listing uh occurred on 1 January when it was uh a PBSE submission, and it's the same information we've been looking at since 2022 when more of these long-term medicines were listed. So, you know, sometimes the system could just give in with good grace, but uh it doesn't. And as someone well, I think when we first saw this, we we laughed at better access because it was a bit like in opiate dependence treatments when we'd found and we got the parliament to agree that if this was ever taken to court, they expected the court would find that the way the government insisted pharmacy charge for ODTP would be unlawful. And there was a lot going wrong there. So what does the system do? It can't ever admit that it actually did the wrong thing. So we had a post-market review uh to delay for two years the inevitable that which they would have to fix the law. On this one, you can see where it's coming because if if the PBAC and if the department really backs down on this issue, they're they're concerned about what it means going forward. And Minister is also concerned that he doesn't want to give away his, you know, uh protective mechanism, which is the PBAC, which is, you know, oh I can't do anything until PBAC says something.

Paul 15:08

Yeah, so they retreat to the tunnels, re-arm, and then they'll reappear through this through this review process. So for the companies it's a win. This is what winning looks like, but it's a it's a slow, it's a slow moving process. When we have spoken about this, we we knew it was never going to be an absolute outcome because institutionally it doesn't do that. I do I do I don't think we should look at this issue in isolation. And that was kind of the point that I heard you making on the ABC this morning was that this is a much broader issue. And when I was thinking about it you know, the system I think there's often a mistake. People think these these sorts of issues full stops. Full stops don't don't really happen, and you you've really got to think about it as a continuum. So whether it's MS medicines, whether it's the post-market review, whether it's the breast cancer medicine, whether it's the HTA review itself, is that you've got to see these things as a bit of a soup, I think, and that they're all together and how they all how they all relate to each other. So the HTA review, for example, and I hate to mention it. But but it was never going to be a start and a finish, and everyone goes, right, the system's better now, it's ever all our problems are solved. It was never going to be that. Uh and in fact, ultimately, the most important role it may play is as evidence of a system that's suffering pretty severe paralysis, very s severe paralysis. And evidence of that is the focus on these technical inputs. That to me is evidence of a system that is having completely the wrong conversation, and we're all too too too comfortable about that. So to me, I think we've got to think about it in in really in really, really simple terms uh and in moral and ethical terms for me. So do we think do we think that the system and its institutional frameworks are moral and ethical? Uh do we think that they are operating in good faith? And and I don't think we can say that it always is operating in good faith, morally or ethically. If you believe it that it does, then that's that's fine, that's your position. Uh I don't believe they are, and so the question is what are we going to do about it? What are we going to do about the paralysis? That's so obvious. It's so clear that this system is suffering a paralysis, and the people who sort of are in the middle of it, are in this soup, who sort of run it and sort of make these daily life and death decisions. I don't think they can see it either. Because I think m most of them have sort of been in it too long and they're institutionalized. So, how are we going to create the space to have a meaningful discussion? I think that's the sole question that we need to be asking is that how can we how can we create the space to have a conversation about whether this system is actually making people's lives better? Because I don't think we can say that it is. Uh and and as you said on the ABC this morning, that's actually not its role.

Felicity 18:27

No, and that's why um, as you're aware, better access is actually already put on our site what we are going to be asking for, and we'll be sending it to the minister uh over the weekend in his negotiations on a strategic agreement, and we've just said we don't care about pricing. The most important thing to us right now is that you don't have a system that allows you to focus on the patient. Now, you've done it in the past, but you're increasingly just focused on where you've got to today. So we want to open it up. We want the legislation changed to say that, uh, and we've put some draft wording together to say the PBSE's first consideration has to be the patient and what this disease and what access to this treatment might mean. So the patient first, the pricing second. We also think that it can't just be a one-line statement. We see a lot in various areas of the system that statements of expectation from ministers, annual statements to his advisory committees. And let's remember, unlike that, what the ABC said today, it's not independent. It's an advisory committee, can be completely ignored if it wants to. Ministers need to start saying annually, hey, this is my expectations over the coming three years for medicines access in Australia. These are the other crises I'm dealing with, like, you know, the potential preventable hospitalizations that are costing me a fortune each year. These are the disease areas we think are a concern. This is what we're concerned about in preventive health in chronic disease versus that. He needs to actually start being clear and not having to do it as a reaction to loss of a medicine. The third thing that we need is uh a patient of charter rights. So at the moment, the system, we are an afterthought. We are please put in a consumer form and try to put it in a way that we like it, and then we'll give you a one-paragraph summary of where you are. That's not a charter of patients' rights. I get a charter of patient rights when I see a pharmacy, when I see a doctor, when I'm in a hospital, when I'm in a pathology clinic, when I'm in aged care, it says what I can expect from you. To be clear right now, I can expect nothing from the PBAC. Anything they give me is because they're, you know, tokenistically being nice and feel that they should do something, but they should be legally complied to do something. And then the final thing we are really pushing for once again is that this is the only part of our social services system where someone gives advice, a delegate makes a decision, and I have no right of appeal as an independ individual in this country to say, sorry, Administrative Appeals Tribunal or Review Tribunal, this has a negative impact for me, and I don't think they've made the right decision. I want it reviewed.

Paul 21:17

Yeah, I I mean But isn't it isn't it absolute lunacy that in this system there is no legal obligation on these advisory committees to consider the human consequences of their decisions?

SPEAKER_03 21:29

Yeah.

Paul 21:30

We're gonna get to the phrase of the week because it sort of revolves around this issue, but but to me that's that's that's not that's not even a discussion that that that we are really seriously having as a country. And so so the critical question is how can we create the space for that discussion? So coming out of this MS issue where the minister four or five times stated publicly, I'm not having it. He basically directed that the Committee to deliver the outcome that he wanted, they've done they've done the absolute minimum in that really passive, aggressive way that they behave towards their minister. And that's certainly not I've seen it up close, and you've seen it up close. They do not like it when those things happen. And how can we take this experience and evolve that into a conversation about well, hang on a moment, hang on a moment, wait, wait, wait. So in this system, it took the public direction of the minister clearly set up to get anything close to a sensible outcome for patients on this. How did it come to that? And as you said on the ABC, this is the one we know about.

Felicity 22:47

Yeah. And we've seen it on breast cancer, and we saw it when we had uh medicines insulin delisted uh after the catch-up price arrangements. We've seen it on a few other medicines where they've just disappeared by the wayside and and it hasn't had the opportunity. I mean, we're fortunate enough that this was in an area of unfortunately significant chronic disease in this country that affects working women, women raising families predominantly. It touched so many families, and it had such a strong patient group to actually stand up and say, Well, we're not having this, that we saw it happen and we had a response to it. But I I am concerned. That's why we're saying I this system started to provide patient access to medicines. That was its, you know, originally it was, you know, life-saving or disease preventing, and it evolved. But it was about access. And then when we, I think our forefathers introduced the cost-effectiveness criteria and everyone cheered, there was still a balance. And I know when I certainly joined the system, there was still a pragmatic stewardship, which is that is a tool of access. Access is still the important thing here. What we saw, and all sides of government can take responsibility for this, the uh the deferrals, the offsetting at times of listing, everything we did, that the dramatic price cuts and seeing medicines as a widget where you could save money rather than just spend money. And the the obsession with how much money was taken out of the system during uh the the patent cliff that was of benefit to the system. It then became a sport. We then changed the risk shares. The risk shares became extreme. The system realized that it didn't just have to um say, well, it's only if you exceed the total patient numbers. They worked out if they just, you know, cut those patient numbers short to begin with, they could get industry to pay for medicines that actually the government should be paying for. We've lost the moral compass, as you've rightly said, we've lost the stewardship and it's become about the procurement and not the patient. And I would have I think no greater example of that is the negotiation of the 2022 agreement where everyone remembered at the last minute that they hadn't once mentioned a patient or consumer, and then a HTA review that predominantly focused on the process and not the patient, that gave consumers the chance to comment on it over Christmas because we had nothing better to do. So I don't trust the system to sort itself out, which is why I'm saying I I want to give you the tools that make you rethink your positioning, both you as government, you as PBSC, and you as industry. I want it legislated because that seems to be the only way we can start redirecting this system and equalizing access with pricing.

Paul 25:47

Yeah, and the thing that frustrates me more than anything is when I see people in the industry, other stakeholder groups, but patient groups basically cheering for the system.

SPEAKER_03 25:55

Yeah.

Paul 25:57

When I see them saying things like, well, if we just had changes on discount rate and changes on comparators, I say I I you don't really believe the nonsense that's coming out of your mouth, do you? You can't actually believe that. But the way the way HTA is presented as a catechism and that people buy into it, and I have to say, all of you, you're you're the problem. You're the problem. And if you can't if you can't get your head around the fact that you are you are basically perpetuating the problem in some of this advocacy, then that's there's a there's a real need for change around who is advocating. Yes. In in in my view. So when I see patient groups advocating for HTA I I just begged belief to me. I I don't I don't get it because because HTA is the mortal enemy of patients. Don't they understand this? It's not an enabler, it's a disabler, it's a denier.

Felicity 27:02

It's it's it's how we delay. Yes, it's how we delay access, we'll not give it at all. And it, you know, I agree with you, and as you said, I I hate all this public speaking and appearance on things, but I I do understand that my capacity to say some things I've got right in the system when I ran it and some things I got wrong. Is I'm on the public record on ODTP. We were doing something I didn't realise was the wrong thing to do. And I spent three years as a patient advocate trying to fix it.

Paul 27:32

And well the fact that it took three years.

Felicity 27:35

Yeah, but but I guess my broader point is that we can all understand that with the best of intentions, we can get something wrong, or we might need to change the way we do things. And I'm not saying it's easy, it's actually really hard. But most people who are in this system, if you if you stop and think about why did you join, it was because you want to make a difference. How many people say to me, um I work for this NFP because I want to make a difference, or I work for this drug company because I want to make a difference, or I work for the department or the bureaucracy because I want to make a difference, then make a difference for good, not bad. And sometimes that means you have to say what I've been doing so far hasn't been working, and it's time to stop. So, you know, we at BAA, we we are, we do not want to have another conversation about the H2 review. I do not care about it. I want to go back to the first principle, which is where the heck is the patient in this system? And until I get that fixed legally, then I can't stop.

Paul 28:31

Well, there's nothing in the HTA review that's gonna make make any contribution to addressing the sort of issue that's impacted these MS patients.

Felicity 28:39

No, it's not.

Paul 28:40

In fact, one of the options, the first options paper said cost reduction listings, not cost minimization. So it actually proposed to make it worse because they've obviously just decided to implement their policy.

Felicity 28:51

But this was the implementation of that policy. This is this is what um and and talking to ABSC, they hadn't understood is that this listing came about from a medicine that was found to be you know the same as roughly medicines that were already listed. The PBSC didn't recommend that they should cut the price at that point, they just said it should list at this area. What happens when you're a newbie in the system is that the system took advantage of them and said, hey, or the list, you you need to do X, Y, and Z and you should offer this price, or you should buy out some of this risk share, or you know, they're very good at that. They're very good at uh capturing someone. And that was started, and then the flow on consequences were huge. They were absolutely huge to the system. And that is what concerns me is that that is the raison d'etre of everything at the moment. We go for that, we chase that, and yet we ironically, we should have been able to, if I was a patient or if I was a company, because you know they genuinely believe they can't dispute a positive recommendation. You can, guys, by the way. If you had gone to that and said, hang on a minute, but you said it's the same as the medicines already listed. Those medicines are listed at this price, that's what should have been done.

Paul 30:07

Yeah, well yes, there's an element of naivety.

Felicity 30:12

And manipulation of that.

Paul 30:14

Yes. Uh let's talk about the Grattan Institute.

Felicity 30:20

I have to declare a conflict of interest. I've been on the receiving end of there many a time.

Paul 30:25

Well, if there's one thing I've learned over the years from this government-funded think tank, is that you've got to check their sources. So their model is they produce these reports in healthcare and the PBS, but in other areas as well, where they make these sweeping assertions and they completely overload the document with citations. Which I think is I think is partly an effort to make them look credible.

SPEAKER_03 30:49

Yeah.

Paul 30:50

And what I learned early on was you've got to check their citations. You gotta check you gotta check the citations. You've got to check citations in all documents. It's a bit like the one that some organization did on adverse events, and it just didn't read right.

Felicity 31:04

Oh, adverse events in medicine.

Paul 31:06

From poly from polypharmacy, from polypharmacy. And actually, the the the most the biggest contributor to hospitalizations from polypharmacy are people not taking medicines.

Felicity 31:16

Yeah. From medic what is it, medicine misadventure, they can call it.

Paul 31:19

Yes. So but in this one, I just had a look at some of the sources and it was just it was it was infuriating but also comedic.

SPEAKER_03 31:27

Yeah.

Paul 31:28

Because one may have this weird obsession with Scandinavia.

Felicity 31:32

And they'd obviously been watching the World Cup.

Paul 31:34

And so so some of the sources were just bizarro. So deregulating pharmacy. Oh well, they did it in Iceland. Right. And so I had let's have a look at the source. Well, they increased the number of pharmacies in Iceland from like 50 to 70. And the actual cited report, the source of that claim that argued that Grattan used to argue uh proved the merits of deregulation, actually said it was a completely failed policy. Uh another one was a Portuguese study which looked at the wider availability and retail of five pharmacy medicines, one of which was a mouthwash, another one was like, and they're mostly just very basic painkillers, which are available in Australia petrol stations, by the way. So and then then they talked about allowing supermarkets to pharmacy, but strangely, use the UK as an example where the policy has been an abject failure.

SPEAKER_03 32:39

Yes.

Paul 32:39

An abject failure to the point that Sainsbury shut down their 250 pharmacies in their supermarkets, which is which was a quarter of all in supermarket pharmacies. But they didn't use the US, where 20% of pharmacies are located inside supermarkets or large retailers, they didn't use the US, which I thought was odd but unsurprising because obviously you're not allowed in this country to basically say anything positive about the US healthcare system, which is incredibly dynamic and responsive. And if you do go in, having lived in the US, if you do go into one of those large retail outlets or supermarkets, they're much larger. Australian supermarkets are getting smaller. American supermarkets are absolutely huge, and they have optometrists, insurance counters, yes, pharmacies. They've got all sorts of banks, they've got all sorts of things in there. And yeah, it's super, super convenient. It's not practical in Australia, it's completely unnecessary.

Felicity 33:36

But also, I think the important point about the ones in the US, they're still owned by a pharmacy. It's actually still an expert pharmacy, not just random. They are a pharmacy. Yeah, look, I I mean, you and I approach it from two different ways, as as someone, like I said, who's been on the receiving end of the uh inspirational advice of the Gratton Institute on pricing of medicines.

Paul 34:00

Yeah, that we should link our prices to New Zealand.

Felicity 34:03

Yeah, and oh my my favorite was when they said that you know the U you should do it the way the UK was, and we sat there uh in estimates and read out the top 50, which were costing more in the UK than Australia, and I said, Is that what you would like me to do? So look, there's a couple of things. There is a real dogma in the Grattan, and that tends to therefore define their recommendations and their search for evidence to justify their anger at the system. Some of the things I found more frustrating from a patient perspective was the accusation that, you know, there's a sweet deal and that, you know, they negotiate just directly with the guild. And I'm like, sorry, you do realize that I'm here arguing that the government should stop negotiating my pricing outcomes in a five-year agreement exclusively with Medicines Australia and the generics industry. Like, is it's not the only place this happens. In fact, it happens everywhere else. And in fact, I've very rarely seen you know the RACGP and the AMA say, hey, let's let's everyone in and have a contribution to this. So in their desire to uh show you know big powerful, you know, pharmacy guild and you know, everyone else is just you know complicit and compliant, it was not true. Second of all, they were talking about you know, nowhere else in the system does, you know, everything else has to go to, you know, MSAC and the MBS and they have to put forward new submissions to get new items, etc. And I'm like, yeah, but so does the pharmacy guild. They're still putting in new applications, but more importantly, the accusation you're making about the increase in dispensing fees and the increases in uh other service fees is the same thing that the government does when it puts in uh indexation on the MBS, uh urgent care clinics. So in trying to demonize, you've actually lost sight of the fact that the um the system does this for every other group too. It's just that this is a discrete, defined five-year term. Um I think one of the other things they then started to go into all these issues about you know making price disclosure faster and you know shortening patient, you know, payment terms. I'm like, well, they're already seven days and price disclosure, we've just deliberately ceased that for everything under $4 because the system was worried about supply shortages. So what's the balance that you're trying to achieve here? But I I because my own personal one is that for all of the citations they did, and they talked about the review by the ANAO of the fifth community pharmacy agreement and you know, some you know, scathing recommendations, they didn't bother to cite that the ANAO came in to look at our negotiation of the sixth community pharmacy agreement. And we got told we did pretty okay. We consulted everybody, we did the right thing. We were accused of not keeping formal minutes from five meetings between the guild, the secretary, the prime minister, and the health minister, and we did try and explain that none of us were there. Um, but it it goes to this whole not looking at the system as a whole, not looking at how things are actually done because you're so obsessed about attacking one part of the system.

Paul 37:22

That's what it was. It was just a screwed against the pharmacy guild.

Felicity 37:25

I'm I'm all for better access to medicines. That's why we obviously fighting on the PBS at the moment, but also why we support pharmacy prescribing, why we support nurse prescribing. So, can we have a grown-up conversation about this instead of bringing out the same tropes of the last 20 years? I want a conversation about where is this going? There are definitely some conversations that need to be had in the future about how we ensure pharmacy prescribing is PBS subsidized and some changes that will probably have to be made to dispensing and clinical consultation fees. Everybody knows that. And if you keep putting out reports like this, we cannot have that grown-up conversation.

Paul 38:09

Well, it was just it was just a you know the monotronic 5,000 whinging about the so-called influence of the pharmacy lobby. And to me, it was like really that some some of the lines in there and the arguments were so pure. I mean, the supermarket thing has been around for years. I'm sorry, there are there is a large retail presence in community pharmacy in Australia. It's called West Farmers who own what Bunnings, right? That's their their big business.

Felicity 38:35

You are actually a sponsor of the Grant Institute.

Paul 38:38

Yeah, well, hopefully they're having it taking a look at that. But but you've also got Chemist Warehouse.

SPEAKER_03 38:44

Yeah.

Paul 38:44

And so so to me, it's like it was just an odd, it was just this, okay, we're gonna criticize the guild, say how are we gonna do it? That's kind of the discussion they had. Um the bit where they said, you know, pharmacy is almost too accessible now because people, you know, they're just going in there for minor ailments when if they just stayed at home, they'd resolve themselves. Like, are you like who wrote that line? Yeah, who actually wrote that line? And they cited some Spanish report, some Spanish study that claimed, they claimed it found that they weren't very effective at resolving minor ailments. It actually found the opposite of that, yeah. And it was a Spanish report based on interviews with 12 pharmacists in French-speaking Switzerland.

Felicity 39:34

Oh, okay. I couldn't resolve it because we spoke a different language.

Paul 39:39

And you sort of go really so the sources were just weird. They didn't really support most of the claims they made. And it kind of like are we like besides just whinging about the fact that the pharmacy guild is incredibly engaged politically, which is kind of their job. I don't know, I really don't, I don't, I don't get it.

Felicity 40:01

But who isn't engaged politically, whether it's you know, through fiscal or just being present, everybody is. I mean, that's that's the system that we have. And I I did find that ailment, you know, to stay at home. It's like, have you seen how much money the government's ploughing into urgent care clinics? Because people stay at home till after five o'clock and they go, oops. Once I've got a problem, I better go to the the hospital. So it's it's incongruous with the rest of our our healthcare system. And again, it's it's because it's uh uh an inherent bias, so it's a conscious bias or an unconscious bias. I don't know. About you know, pharmacy guild bad, everybody else good. Everybody in our health system who delivers services with you know the exception of a handful of volunteers, is paid to deliver healthcare in this country.

Paul 40:50

No one's working for free except you basically.

Felicity 40:52

I think Yeah, we're free, but um but that's the point. And it doesn't further a debate and a conversation, it's it's a distraction. Look, yes, we need to look at the the AHI and you know the the lack of understanding on that. The the reason that was introduced was to break the relationship between uh the price cuts on medicines so that the guild wasn't actually always having to support from our perspective as government medicines Australia. If we wanted to keep you know doing negotiations on pricing, we needed to not always have that flow through immediately to another um major stakeholder so that we could have separate conversations about the separate parts of the system. I I just yeah.

Paul 41:39

That they do frustrate me a little bit, but um well they've got too much money and and too much of that too much money comes from government for a think tank.

Felicity 41:49

Yeah, it is, and and we we do see those biases, which is that where do you where do you take your money from? And I I know that there's uh some uh surveys starting to to go around the system at the moment trying to say that you know, unless it's only noble and pure if you take money from government and anybody else takes money from anywhere else, there's obviously something wrong with you.

Paul 42:10

Patient group, if there's some academic who's contacting you seeking information on your funding, ignore it or tell them to get lost. You're under no obligation to answer any of that nonsense. And and I can absolutely 100% guarantee you that it'll be used against you. And the Consumers Health Forum, you're an absolute joke. You're an absolute joke. Supporting research into your member organizations effectively, that'll be weaponised against them. That is absolutely pathetic. Absolutely pathetic. And all the patient groups out there, because of course the consumer health forum is just a government service provider.

Felicity 42:47

Yeah, most of its money comes from there.

Paul 42:49

Yeah, they're the patient group equivalent of KPMG, as far as I'm concerned. And so so they they uh patient groups, you're under no obligation. Uh speaking of patients, phrase of the week.

Felicity 43:02

Yeah.

Paul 43:03

Consumer input. Consumer input. And when we were talking about this a couple of days ago, I said, I don't think this system can handle any more consumer input.

Felicity 43:13

You did when I was saying, I want to put this in.

Paul 43:15

No, it's just like we can't handle it anymore because the this system has never had more consumer input than it has today.

Felicity 43:23

Yes, it's just the way that it does it.

Paul 43:26

There is a direct relationship between the increase in consumer input and the increase in delays. And I'm not I'm not saying this to have a go at consumer input per se. I'm I'm saying it because it is so cynical the way it is used.

Felicity 43:40

So I think you need to explain to listeners what you mean by that consumer input leading to delay. Okay. And what type of consumer input you're talking about.

Paul 43:47

So let's get let's go back in history here. Let's go back in history. When the the the the framework for this system, the HTA framework was established, there was no such thing as consumer input. In fact, it was incredibly anti consumer and anti patient.

unknown 43:59

That was

Paul 44:01

The whole point of it. There wasn't a consumer rep even on the PBAC until 2000, a formal consumer rep. And then you added a second one in 2015. But the fact is, there's nothing in the institutional framework that obligates or in the legal framework that obligates an HDA advisory committee, whether it be PBAC or MSAC, to do anything other than, well, we've got to get the best price. That's their sole legal oblig statutory obligation, it's to get the best price.

SPEAKER_00 44:28

Yes.

Paul 44:28

And so they use they they use consumer input. We don't know how they use it. We don't know how they use it because they deny, they don't publish it. They kind of say in the PSDs, well, we note the input. Because, you know, every single time they note patient and clinician input, it's always in support of a submission. But they don't kind of say, it doesn't seem to have any impact. It seems to have zero impact. So so to me, to me when we're not when we hear about the enhanced patient engagement framework in the HTA review, because if they're not changing the legal framework, it's just going to be ignored as it always is. It's completely ignored. And you look at the bread, you look at whether it be Pompeii patients or newborn screening, you look at you look at um the breast cancer issue last year, where where patients basically said, we want to have this treatment. I think it was an adjuvant setting because of the stress involved in waiting for the recurrence. And and the and the PBIC said, uh, we'll wait until it's metastatic. Wait until you're basically dead or close to dead, and then we'll treat you with this. And I just kind of went. Well and the and the problem is it is so cynical, it is so cynical because they then say, Oh, but we know we have consumer consultation and we have the consumer hub. They can make submissions to the process. And stakeholder meetings. And you know, it apps we have stakeholder meetings, and it's just it makes absolutely no difference. It's weaponized in the most cynical way at things like Senate estimates or by ministers or other bureaucrats who say, Well, Senator, we have um obviously patients are able to submit as part of the submission process, and we have two consumer representatives on the PBSC, and they collate that information and present it. It's so cynical. So cynical, unless, as you described earlier in the pod, unless they change the legal framework and put some legal obligations on them. This consumer input is this wasting everyone's time, completely wasting everyone's time.

Felicity 46:39

It's false hope. And it's cruel. It is cruel. And you know, I see this in uh Medical Services Advisory Committee too, and I know we'll talk about it some other time, but we have really lost the blot on this, and uh it's it it is time to just really shake it up because I don't believe that we can rely on the goodwill or the uh pragmatic policy solutions that they don't work, and so that's what I'm saying. We have to legislate this, we have to legislate change, and we have to actually we have to actually break the system a little bit and say this is not what we as taxpayers pay for. This is not the deal. This is not the deal anymore, and I don't want to put another three-page thing in that you ignore. I I want to actually see that you have to be accountable to me as a patient about what you did and why. And as one patient said to me uh about something, they put in a huge amount of information, personal stories, uh, evidence from other people about what it was like to live without or live with a particular treatment. They don't even get an acknowledgement. They don't even get a thank you. They don't even get a this is how we used it, this is what we considered. That's how little we think of a patient that we don't even acknowledge the value that they have given us in considering their information in a health system. And that is a bloody disgrace, which is again, it's legislator bust as far as I'm concerned, and that's all we're going to be asking for. Do that, and then we can change.

Paul 48:20

There is precisely zero evidence, zero evidence that enhancing patient or consumer input to this decision-making framework has any beneficial effect. There's there's zero evidence, and in fact, if you map the delays, yeah, there will be a close line between increasing consumer input and delays. And I say that is not to criticize. That is not criticizing the actual input.

Felicity 48:46

It's that it's being weaponized.

Paul 48:48

It's being weaponized and it's so cruel. And and I think I think patients should start saying, you know, it's like signing joint letters calling for this and that on the HTA review, you've got to be shrooming if you think that's gonna have an impact. If you think the discount rate and all of that nonsense is gonna have any sort of beneficial impact, if you're getting an opportunity to comment, is gonna have an it's not, it is not going to help at all. It's gonna be used against you as an excuse because of the intransigence, the cultural intransigence, and the and the fact that this system, the foundational element of this system, is a disdain for the patient experience. I call it the original sin. It is the original sin of this system. And I don't know how many times I've got to refer to the parliamentary debate. Yeah, that that is that is how this system was built. This that is the mindset that will that will that led to its creation, and until that is addressed, until it is cleansed from this system have enhancing input and in patient engagement frameworks about making HTA better and emoji love hearts aren't going to make two shits of difference, basically.

Felicity 49:58

It is, and and when you talk about weaponizing it, and sometimes patients or individuals don't understand the problem with it is is that they take that information and they use that to say I did consider it, but I'm still not listing it.

SPEAKER_03 50:13

So they are That's generally what they're saying.

Felicity 50:15

That's actually how they're using it to say, yeah, we've considered all that, but that's still not enough. And that's my point about its pricing, not patients. Whereas if you had to consider what would access mean for these patients, and that language by the health minister overnight was very clear about what quality it delivered to patients, which is something that we virtually never ever get uh from the PBAC. That that was the you know, you can see a system saying, crumbs, we are being given a statement of expectation here by the minister who does recognize that we're on the advisory. And how do we deliver the outcome he wants by still holding true to something? We've suddenly worked out there's you know more important quality on this than we've never ever previously considered. And so what you've got to think about as patients is whatever made them decide to do it, what excuse they used to proceed with the pricing, and I'm so grateful for it. Nay had discounted and ignored that for the previous 10 years.

Paul 51:16

Well, isn't isn't the critical point about what's happened on MS issues is the campaign that patients had to fight to keep what they already have?

Felicity 51:26

Yeah, and and that's my point. That's what I'm saying is that it it is there that the minister's done the direction because the the community has stood up and he does re represent patients when he is minister. He is our elected representative and it is his system to say, I'm you know, and he did say it, I'm keeping them, and so grateful to the patients. But when you're trying to explain to patients why this feels like an enathma, but I'm giving them all this feedback, it is because it's weaponized because this same feedback was given to them for the past 10, 11 years.

Paul 51:57

Yeah, and I I I I I think patients have to be pragmatic about it. They're they're they're but they're being used. They they are being used, and I think it it it it's it's got to a point where they need to say uh not going to involve ourselves in this unless there are some upfront guarantees about what the outcome is going to be. Because as I say, the system can't handle any more consumer input, but as far as I can tell, because of the the lack of any relationship to outcome. And when I see people say, and this absolutely makes my blood boil, well, you know, you've got to shape your patient input and a walk in a way that makes it relevant and impactful to the PBAC. Swearjar Stan, fuck off. I'm sorry. I'm sorry, that is utter, utter horseshit. These are very That is an absolute outrage to me that patients have been told that.

Felicity 53:03

Well, I mean, let's have a laugh about that. So we we don't, you know, cycle through PBSE members often enough because apparently it's such complex information that only they can understand, and yet apparently they can't understand human interaction on this is what this drug means for me. And I think what you're calling for is difficult for patients to contemplate and patient groups because what they get scared of, and rightfully so, is that if we don't submit to this process, if we ignore it, then the PBSC will look and say, oh, well, patients don't really have a need for no one's really interested in this drug, so it's okay to say no. And I think that's the the horrific tension for them, which is they're being forced to put into a system in a way that the system tells them they can put information in. And yet if they choose to take a stand against it, they're terrified that the system will then look and say, Well, you obviously don't really need this or want this medicine, so we can focus on something else.

Paul 54:02

When they do that, when they just ignore the input anyway.

Felicity 54:05

Yes, but patients are scared that if they don't input, that if it's on the borderline of so do we recommend or not recommend, if we don't put in, then we won't get it at all. And I I understand that fear, and that's a hard one to defeat at the moment. Um again, hence why I'm saying uh we just got to legislate for this because it's not gonna change without it.

Paul 54:25

No, until the law changes, the system's not really gonna change. I mean, that's the the first lesson of history is that the sis the system we have is is a combination of two things, a legal framework and an institution who's incapable of um imagining a world outside its little maze with no exit. And people who've been in it for way too long.

Felicity 54:47

Well, you will have seen our uh the other part of our legislating for a patient's first PBS was we want to follow the Lynelle Briggs advice and um Former APS Commissioner. Former APS Commissioner and most of her department official too.

Paul 55:02

She was a DEPSEC, I think.

Felicity 55:04

She was. I first met her when I was at finance.

Paul 55:06

Yeah.

Felicity 55:06

Um she had a great cut teapot. Um the things that stick in your mind. But what she we've what she has recommended is what we have called for, which is maximum terms on the PVAC of 10 years. So uh four years. Maximum of ten at four and a maximum of six years on their subcommittees. Because we are not getting I I appreciate it, it's very complex. But we have capture when the people who are the predominant leaders, chairs, deputy chairs, and you know all these committees have been in them for 20 to 30 years and cycle through the different committees. Subcommittees and around PBAC and then run MSAC.

Paul 55:49

So well isn't that isn't that the problem when when the likely source of a new PAC meeting, PBAC member is MSAC, and the likely source of an MSAC member is PBAC.

Felicity 55:59

Yeah. And so they just cycle through them. They do. And you know, you can't get new thinking and you can't challenge the process if you don't cycle through the information. It's people. So I respect that people think it's a complex area and I'm willing to give people the benefit of the doubt on that one.

Paul 56:14

By design, it's complex.

Felicity 56:15

I've worked in the system, I did okay. Um, but I don't think I needed to be there for 10 years. So to to to make a contribution, but that has to change. We have to stop that because it has also become about who's in the know and who knows who. Um, you know, I think more broadly we should be looking at who's allowed to nominate and not nominate, but we haven't started with that. But we do have to start by time-limiting terms.

Paul 56:39

Yeah, well let's ask a simple question. You know, I I there's a there's a there's a small group of elite who consider themselves the vanguard in this system, and they've dominated it for too long. And we need some new ideas, some new people, some people who sort of were born after the Vietnam War. And yeah, yeah, I just fear and we need we do need some younger energy and new ideas in this system, and that may mean that people like you and I aren't the right ones for it, and and I completely get that, I completely understand it, but but I think it's fair to say that this system has been the same people having the same conversation for too long, and and that has led to this intransigence and a mindset that the only solutions are the ones that we've talked about for the past 25 years, and this is where it gets to paralysis and a conversation is about about technical inputs and oh, we're gonna have a new process, and when you see sort of patient groups signing up to more technical inputs and a process, and you kind of go what I'm sorry, it's it's not it's not working, it's not working, and so to me the moral question, so my question, and we'll finish momentarily, but the the question for Mark Butler is you intervened on multiple sclerosis medicines and you took a moral tone about the benefits that these provide to patients, and that you essentially directed the PBAC to give you a particular outcome. Okay, so this can't just be happening to MS patients, Minister. So is there a broader contemplation here? And you can imagine the advice the minister would have got, oh minister, you know, it's really important for the integrity of PBS decision making plus our relationship with the Department of Finance that we deliver this price reduction and all of all of that would have because all of all of that sort of advice was written when you and I were in the system by people like you and I, and we were cynical about it at the time and we're equally cynical about it now. There's nothing particularly pure or intellectually forceful about what the system does, it is it is in some ways a very malevolent system in the way it weaponizes consumer input and evidence to achieve what is a pricing-based outcome. And I don't think there's a lot of integrity in that, to be honest. I don't think there's any integrity in what they're doing to patients at the moment, and I'm not talking about the MS patients specifically, I'm talking about the patient groups and the way they've been gaslit, and when other patient groups gaslight other patient groups and people who claim to represent the interests of patients, I'm sorry, there is no natural relationship between patients and health technology assessment.

SPEAKER_03 59:57

Correct.

Paul 59:57

Health technology assessment is the mortal enemy, literally, of patient needs.

SPEAKER_03 1:00:04

Yes.

Paul 1:00:04

Because our system of HTA condescends to patients to say, well, look, not only we're not going to fund your treatment, it's in your interests that we don't fund it. Because it's better for everyone.

Felicity 1:00:15

It's much better if you get sicker.

Paul 1:00:17

Yeah, it's much better. We'll see it's much better.

Felicity 1:00:20

I think it's a a really good note to kind of finish on, but this we have to take advantage of this tipping point. Like as as as an industry, as a patient area of healthcare, we we've kind of got this. The the biggest risk in this is that everyone says, yay, we got this price increase or price sustaining for a while. And then something else happens. The minister's got to hope that PBAC still plays ball in December. Um anything could come out of that. And I think also as patients, we need to be aware that the strategic agreements are being negotiated now. And so there's a very easy way as a former bureaucrat for me to say, yeah, Fine Minister, we'll get this done, and yeah, we'll even let the December review go through, not a problem, because we're going to catch these things on one July next year, and the conversation starts again, which is why it's better access. We are begging patient groups to stop, to stop and say, Nope, let's legalize our role in this system and actually use this opportunity to say you you've got to do better, government, and you've got to give a little bit. Not like I said, don't start paying the world's highest prices, but could you just calm down a little bit and give a little bit so that we have um surety of supply? Because right now, it was MS today, it was breast cancer last week. Who's next?

Paul 1:01:44

Yeah, who's next?

Felicity 1:01:45

Who's next?

Paul 1:01:46

And if it's you, like I said, there's no be careful. There's no full stops in this system, and it's a vengeful system. And so they've, as I said, they've gone back into their tunnels. They will come back out, and they'll be coming back out at a time that's that suits them. People can say whatever they like about that reference, they know what I'm talking about. They know what I'm talking about, and and they're gonna they're going to come back at these companies. I thought the company responses were very thoughtful.

SPEAKER_00 1:02:15

Yes.

Paul 1:02:15

They kind of said, Well, yeah, but Yeah, it's a big yeah, but because they know that they've they've had a win, and this is what winning looks like in the system, but they're gonna come back at them.

Felicity 1:02:24

Like I said, they've won the battle, not the war.

Paul 1:02:26

Yeah, so they need to they need they need to keep be very vigilant. I saw the patient group was very happy. I would be be very careful.

Felicity 1:02:38

Yeah, which is what we said this morning. Like, please, this is enjoy this moment, but you've still got six months of fighting.

Paul 1:02:45

Yes, yeah. All right, Felicity. Sorry for my bad language.

Felicity 1:02:49

Swear jail stand. One of my ever movies.

Paul 1:02:52

But it does, it does. That grinds my gears more than anything. It's just, oh, you've got to shape so it's you know, basically most useful to them. Like, how dare you? How how dare you condescend to patients in that way? That you've got to change your input so that it's more readily understandable to us. And and in our HTA ridiculous language.

SPEAKER_03 1:03:13

Yeah.

Paul 1:03:15

Thanks everyone. Keep the uh phrase of the week coming in, and uh, we all hope everyone has a great weekend.

Felicity 1:03:21

Have one. Woo hoo.