The 'Dispatched' Week in Review - 10 April

Australia’s health system is overly bureaucratic, opaque, and misaligned, with reforms like the HTA Review slowing access rather than improving it. Decision-making prioritises institutional processes over patients, who remain largely excluded despite bearing the consequences. The system is based on a transactional model, and without genuine patient-led change, core structural problems will continue.

Transcript

Paul 0:08

Hello and welcome to the Dispatch Podcast. It's Friday, 10 April. My name is Paul Cross. I'm delighted to be joined by Markhouse, Felicity McNeil, PSM, Chair of Better Access Australia, amongst other things. Hi Felicity.

Felicity 0:20

Hi, Paul. How's your week been?

Paul 0:21

Oh you know. Winter's coming.

Felicity 0:25

Yeah, football's over.

Paul 0:28

Don't.

Felicity 0:32

Not at the gather out.

Paul 0:33

Yeah. I I think Adelaide would be quite a fun place this weekend.

Felicity 0:37

Sorry, can I just can we take it back a moment? You're saying something cool about Adelaide.

Paul 0:43

Well They've attracted a lot of events and I'm convinced the Premier filled out the wrong form when he joined the Labour Party. But yeah, there's a lot of energy around that city this weekend because of the gather round, which I think is a really good idea. Really good concept.

Felicity 1:04

It is a good concept. So um I know it's up for negotiation that the Premier's saying these one-year deals just aren't going to work, and we've got the problem now of Tasmania, because we'll have uneven teams, so the pressures on the the South Australian teams to play two games. Yeah, uneven numbers.

Paul 1:33

Well, at least my team is over and done with Thursday night. I'm glad because it's a it's a bit like a execution. It's done now, I don't have to worry about it.

Felicity 1:41

Yeah, well, and and you said, you know, I shouldn't be worried because we're playing Essendon, and yet last time we had our butts handed to us to gather around was by Essenden. So um yeah.

Paul 1:51

Did you see the odds? Can I just say the odds are back. The the nanny state, we're gonna ban sort of betting odds on sporting websites.

Felicity 2:04

Yeah, we're we're gonna do that, and you're not allowed to advertise during the drive to and from school so that children don't grow up in a culture of gambling. But you know, that'll coincide nicely with the ACT proposal to not allow you to order alcohol.

Paul 2:18

Sort of says people just sit around the table and just invent new laws. The one in the ACT about alcohol deliveries is just absolute I mean, Nanny State doesn't describe it.

Felicity 2:30

The fact that you can't get so you're not allowed to order before 10am or after 10 p.m. And when you order, you need it's like you know going to an auction, you need a cooling off period. So for two hours you're allowed to order alcohol, but it mustn't be delivered within two hours of that order, so that you know you've got time to reflect on really whether you should be having the alcohol. And then if you order it with your meal and it's the the wine is worth more than 50% of the meal, or there's more than 1.5 litres, it must also be delayed by two hours. So it was quite funny listening. You you get home on a Friday and you order your dinner at six, and because it came with a bottle of alcohol, that'll be arriving at eight.

Paul 3:07

It's just just these whales are sort of trying to I mean, they these people they're just sort of looking for something to do after COVID. So they're just in d deciding or finding ways to invent new laws to make our lives less enjoyable.

Felicity 3:22

It it's it it was it was quite the curiosity. I think it's um amazing how much can actually go on in government, and we just aren't aware of it until you know it just appears. It just appears. And you know, I understand some of the comments are you know, the concerns about domestic violence and and the the things that you were trying to address, and and I understand there are problems in society with so many different things, but the speed with which regulatory reform happens without the community understanding. I mean it's a bit like I was reflecting on you know we were we went to a number of events at Parliament over the last few weeks while the parliament was sitting. And one of the things that really concerns me about that is you've got to be in the know. So there's nowhere on the Parliament House website that says these are the events that are being held this week in the Parliament. So I can see if there's a Senate committee inquiry into X or Y, that's all transparent as it should be. But where the Parliament gives access to individual groups or individual issues, that is not publicly available. So if you're if you're on the inner sanctum and you get an email, and I know you get a lot obviously from the health sector because they want uh the reporting and the awareness, there is nowhere I can go as a member of the community to understand which groups are having that greater engagement and opportunity with the parliament than others. And when I reflect on Senator Pocock's work over the last 12 months and the the lobbyists and the registers and the transparency with that, I think it actually needs to go slightly broader because you see I I have no problem with it at all, but I cannot see it. I, you know, when I when I read the the release of the FOI report on Pizzullo uh and how the findings that were made against him because we're all for transparency. Well, if there are 75 different organizations running sessions with parliamentarians up at Parliament that week because they managed to secure a spot and it's not publicly listed as to what events are going on, I have an issue with that.

Paul 5:29

Yeah, I think very few people in the public and the community would understand that Parliament House is like an events venue.

SPEAKER_01 5:34

Yeah.

Paul 5:35

And that I went to an event recently and I think I walked into the three events that were the wrong event, which I thought were the one was when I was attending before I got to the right one. That the committee rooms, there's a lot of function rooms, and it's a very good part of the Parliament's work is that organisations can hold these events and parliamentarians come along and other stakeholders come along. I I agree with you. There why why can't we list them? Now they're listed if you go to Parliament House.

SPEAKER_01 5:58

Yes.

Paul 5:59

There's like an event schedule, yeah. Uh, and there's a whole event infrastructure to manage these things. But I agree, I don't know why it can't be on the Parliament House website.

Felicity 6:09

Yeah, well it's something that we are gonna um talk to our local senator about and saying these are simple and transparent things because I think it would also give the community an opportunity to write to those friends of parliamentary committees who are sponsoring them or to the individual organizations and say, I'd like to be a part of this, because it becomes this, you know, hallowed turf of who can get an invite.

Paul 6:30

Yes.

Felicity 6:31

And I I don't think that was the intention. I'm a hundred percent for the events that are up there to raise awareness with parliamentarians as to what is going on in their broader community, whether their local constituency or the broader Australian community, and whether that's in mining or health or infrastructure or education, it's all important. But I think we've got to, if we want to talk about this transparency thing, I'd I'd like to see some change, please.

Paul 6:57

Can I just say on the mic was all I wish you, if they were going to start firing and publicly shaming public servants or secretaries for speculating with ministerial or prime ministerial advisors about potential ministerial appointments, there aren't going to be any secretaries left.

Felicity 7:11

Yeah, and removing his Australia Day on, like Oh, it's just utterly ridiculous. Yeah.

Paul 7:16

It's just over the top. He was having an informal casual conversation with someone who decided not to keep that conversation private. Which to me is a much bigger offence.

Felicity 7:27

Explains why the guy didn't have a security clearance, obviously.

Paul 7:30

Well, that's right, but I think it's entirely I I I think it's sort of the job of secretaries to speculate on those things. Surely, the secretaries have preferences for who should be appointed to the mission. There's absolutely nothing wrong with it. Neither of them had any role or contribution in making that appointment. So they were merely speculating about it. And as uh from my based on my own experience, if that's now going to become a sackable offence, there aren't going to be many secretaries left.

Felicity 7:56

Well, there shouldn't be any. But I think also, having read that and the the Klerkendagger secrecy around the robo debt investigations by the public service commissioner and the findings against some of those specific individuals. The the gravity and the extremity, I I don't think they were the same thing in respect of bringing the public service into disrepute and to um maladministration.

Paul 8:23

Yeah. Anyway, let's let's get into this. I want to revisit Mike Butler's address to the AFR Healthcare Summit. I've written about it a lot because I think it's a very significant address. Not a coincidence that it was delivered five weeks before a budget, six weeks before a budget. But not a coincidence that he goes up and said and said, I know that there's a broad agenda here, but I'm going to talk about this. He's never done that before. Certainly about the PBS, he's never done it to a non-medicines industry audience. So he was deliberately deliberately articulating something to a particular audience, presumably in the hope that they listen. Uh my only comment would be that it was very subtle, so not everyone has the understanding that you've got to read and read and read. You don't hear what you want to hear, you've got to go back and read it and read it. And I've encouraged people to go back and read it and read it and read it. Because he said some really profound things. The thing that I thought was very interesting, I wrote about this week, was where he said uh I've asked. Last year I said my immediate action on the HTA review was to ask the department to look at guidelines around those two technical inputs. They've now appointed the relevant experts, and they're going to they're going to engage in some targeted engagement, which I thought was a very precise use of language, and they'll update me mid-year. So that's why I wrote this morning that this thing is now so long.

Felicity 10:11

We could have got another constitution.

Paul 10:13

We could have and the states would have approved it. It's 1,700 days effectively since this was first announced. So it has this great complexity in all these different stages. I compared it to a Russian doll and the Artemis Mover rockets because of the the stages. We had the original review, then we had the implementation group to develop advice on the final report of the original group. And now we have another group established to look at the implementation advice on the original group's final report, and then the minister will get an update on that in the middle of this year. Obviously, this is all institutional. I do think it is incredibly ironic that a a review process that was designed to address the the lack of timeliness in funded access to health innovation has actually caught the virus.

Felicity 11:13

Yeah, that was funny.

Paul 11:17

No surprise there, I suppose, because it is the institution reviewing itself. But I went to the health department, I'll be writing about this on Monday, so I'm giving it away a little bit. I went to the health department, I said, What did the minister mean by targeted engagement? Because no point going to the minister's office on those points because I presume the department actually wrote the speech. And and uh they would flick it to the department anyway. So I just decided to cut out the middleman here and go straight to the department. I said, What does he mean by targeted engagement? Because that's not consultation, that's targeted engagement. And they've come back and give me a response. And what they've said is they've procured the relevant experts. That's the phrase they use. So what makes them relevant and what makes them expert? So it's gonna be one of those HTA groups somewhere in the world. We all know who they are. And they're going to assist with the development of materials to support consultation on PBSE guideline updates and streamline HTA assessment pathways. So let's just deconstruct that a little bit. So they're gonna develop materials. So I presume that's just new wording.

Felicity 12:31

Or it could be like we have we endured in newborn blood spot screening, where now Scroop developed these beautiful slideshows.

Paul 12:37

Well, it might be some boxes and arrows. I I don't know, but you know a good flowchart does one. I mean, I suppose the pre the relevant experts could be graphic artists because they are very keen on the design these days. You sent me something just for you and the developments. Maybe they've got a logo or something in mind, but so th they've essentially now admitted that it's a guideline update.

SPEAKER_01 12:56

Yes.

Paul 12:57

And streamlined HTA assessment pathways. So I so we've done a lot of streamlining pathways over the years, and they've streamlined it into more complexity and higher cost recovery fees. So the consultation, so they're using consultation. I think they've worked out that targeted engagement, which I took as what you're only gonna make people sign NDAs to be part of this. So the consultation will be led by the procured experts. They make these people like sound like slaves, like they've been procured.

Felicity 13:30

I assume it was an open tender process then?

Paul 13:32

Well, I don't, it's not on OstTender, because I went back to them last night and said, well, where is this on OstTender? And it is expected to include a range of key stakeholders, i.e. the consultation. So that to me suggests it is gonna be target, it is gonna be limited. It is gonna be limited. So whether it's on an on the you know the consultation hub, which is I should be renamed for honesty reasons, the informing hub.

Felicity 14:00

This is what we're going to do. You tell us how good we are.

Paul 14:03

Yes, this is what we're gonna do. So we're not really caring what you're gonna say. We're we're planning to do this, and but we do need to say we consulted on it.

Felicity 14:13

I'll I'll give a a pass-out card though to the TGA on that one. I think they are the an organization within the Department of Health that continually uses that transparently and openly to really get to the nub eye idea. So I I'm with you, as we've talked about so many times on the consultation hub, but I will give the TGA credit on it when they do a good job.

Paul 14:34

Yeah. Uh so interesting language. I mean, it's just another delaying tactic.

SPEAKER_01 14:44

Yeah.

Paul 14:45

Um but it does point to the fact that you know they they see this as an update to guidelines and a pathway.

Felicity 14:56

To increase fees.

Paul 14:57

To increase fees. So I think history on this suggests that when you see the word streamlined pathways, you should get very nervous.

Felicity 15:06

Yeah, you should. And as we often talk about, unfortunately, everybody who does read it thinks that it's going to help their individual product. So people go in with um looking at it as a great hope, but it's it's really, really not. So I think we've we've been talking about this has been bureaucracy at its best, which is the we you started with a an agreement with prices agreed up front, price cuts agreed up front, an industry that then tried to get something for that. The department's given the industry something that they've also committed to. If there's any change they have to fund in it. And they've managed to delay the outcome uh beautifully under the by linking individuals and organizations into it. So you've signed up to it, this is yours, we have to go slow and steady, we have to get this right, we have to consult, we have to do all these things, we have to make sure it's in the best interests, we have to make sure it works for your individual products or broader products, we we we can't just let other, you know, we can't just let this be about the me to's. They've done all the language and projection to those who are contributing to say, okay, this is exactly what you wanted. And it's, you know, well done to the department because what have they done? They've managed to delay reform for five years.

Paul 16:33

I think it's really important to look at the language and piece it together, which is somewhat of a weakness for a lot of people who engage with the government, is that the language has intent. You said to me many, many years ago, everything happens for a reason. At the GBMA summit, so let's just piece some of this together, which was w deserving of a much broader audience than it had. Um much larger audience. I mean, there was still a good crowd there, but it it it should have been a lot more. The minister said on this issue, I've asked the department to update the definitions of high unmet medical need and high added therapeutic value. There's your guideline update. We know there's going to be a guideline update on comparators, and based on the language that I've seen and heard, it's going to be the exception proving the rule. Which, if you're adding to language, it generally reduces flexibility. The streamline HTA assessment pathways is relevant here because it will be for the new newly defined high therapies with a high-edit therapeutic value for a high RME medical need. These are two or three things a year that make that category. And I know everyone thinks, and with all due respect to people, everyone thinks their new formulation is going to qualify for this, or their fifth in class therapy, it won't. It won't. We saw that the fantastic dermatitis therapy didn't qualify for that because of cyclosporin or whatever it was, a 50-year-old drug.

Felicity 18:07

There was no high on met clinical need.

Paul 18:09

Yeah. So uh if they have new definitions, the problem is it actually reduces the number of therapies that qualify for it. That would be my experience. And how will that people have to think about it, not what it looks like next year, but what it's going to look like in five or ten years. The next generation. Given that this review has consumed a generation. Effectively, there's no one on the Medicines Australia board who was there when this review was announced. I want you to think it's it consumed an entire generation. So I I I I it'd be good to think about that. So at the start of this process, it sounded like a guideline review.

Felicity 18:50

And in fact, when Professor Wilson, who was then chair of the PBAC, attended, I think, your 2021 or 2022 conference, he specifically said it was a guidelines review.

Paul 19:00

And he obviously got in trouble for that because he stopped saying it.

Felicity 19:03

Yes, he had some other members on your various panels who refuted that.

Paul 19:08

Yeah, so so I think He's always been an honest man. This this to me is really critical. So if at the start of this process, 1,700 days ago, the industry had been told you're gonna get a guideline update, would you have accepted that? That that's what you're going to get?

Felicity 19:30

Yeah, if you'd written that two strategic agreement.

Paul 19:33

Now, some people would say to me, Yeah, but Paul, this is how the system works. You know, if if we're gonna get change, it's got to be delivered through the guidelines. No, that's how the system works for the government.

SPEAKER_01 19:42

Yeah.

Paul 19:42

This doesn't work for patients.

SPEAKER_01 19:44

Nope.

Paul 19:45

It's gonna add to complexity. When I see the streamlined HTA assessment pathways, that's like some of these Orwellian terms, you know, like the Ministry of Truth. And and it will change over time. I don't know, is it people who are, you know, it would have done Animal Farm at School, you know, and they had the laws, the pigs had the laws, and they kept changing it. They kept changing it to suit themselves. Yeah. That's what these guidelines are going to be like. They're gonna constantly be changing them and updating them to suit themselves. Absolutely. We're all created equals just that, well, no, that then goes through well, everyone's created equal except that some are more equal than others.

Felicity 20:22

Well, it's like, you know, I I think one of the biggest ones that came through as a change, and no one really ever reacts to is you've got cost minimization and then you've got cost effectiveness. And then the PBAC started using cost minimization plus. So they didn't want to admit that it was cost effective, so they say it's cost minimization. But with a little, you know, I'll give you a little bit, baby, a little bit. And um how that's actually become an accepted turn of phrase and how that has become a way of um reducing the opportunity for cost effectiveness because companies have accepted that. Oh, well, it's not, you know, and what does it mean when you're cost minimization plus? You're cost minimized. So when something happens to your comparator, you're at risk. Those are really good examples of things that came through from the committee and from the last, you know, it wasn't even on the last guidelines review, it was it was something that sort of evolved in a way to get around um certain outcomes from not having to admit cost effectiveness. And if you think about the PBAC's advice on the GLP ones and their concern about, you know, if we we get in here too early, we might have to admit cost effectiveness on these other things. No, they don't. You've got this CMA thing, you'll you'll be fine. But it is a really important point that you're raising, and then and reading your article about Lisa uh Robbins from Patients Australia.

Paul 21:42

Um what a crazy concept that was.

Felicity 21:44

Wonderful woman. But it is, but I mean, this is the stupidity of it. So patients who wrote in during the original novel Technology Inquiry, and I know I'm banging on about BAA itself, but the specific thing we said is we want a 100 day target, like a KPI, that just says from ART. Do registration to subsidy, whether it's PBS, MBS, a diagnostic, a therapeutic, you name it, technology, 100 days. Because until you actually say this is what patients want, we expect if if the if the TGA tells me something is safe and works, which is actually their job, then it should take no more than three months for the government and the provider to work out a deal that says, now this is how I will access it on whichever particular scheme that is subsidized through, or in the end to agree within 100 days, no, it's just not something that we're going to make available. I I don't even mind if that's in the end, but 100 days and we have an answer. But no one has taken that request by patients seriously. Instead, the purchaser and the provider have continued on the additional model, which is look, it's about us to sort out how we commercially operate together, and you'll be the recipients. And what Lisa was rightly saying is that if the industry put genuinely put the patient first, if you let us sit there and say, this is what we want from our PBS, this is how you are going to actually negotiate the future agreement. I'm telling you right now, there'd be no more, you know, guidelines reviews, there'd be no more, yet you're right, we would actually recommend some price cuts, and we would also recommend a completely different way to the way this system operates, and we would set you deadlines for how you do it. But what you're going to do is exactly what happened in 2018, where you agreed to new pathway processes, you codified them in the cost recovery regulations, and senior executives of the department got up and said basically the things that many patients wanted were considered so low down the feud chain they were never going to make to be made happen because it wasn't a new molecule first in class. So many people, particularly in chronic disease, are waiting for an extension on an indication or a new formulation of something that actually makes their life better in the management of diabetes or musculoskeletal or gastrointestinal issues or skin conditions. And it's chronic disease where we continually, continually miss out, and you're going to go and negotiate it, and it's not going to help one patient in that high area of need. And as Mark Butler says, we don't do chronic disease anymore, quote unquote.

Paul 24:17

Well, that was effectively what he said. It was quite a shocking statement. I mean, he sort of used technology as the excuse, which I don't think is accurate. It's more a policy decision in a way that reflected the reality that they don't want to fund large patient populations anymore because it costs a lot of money. And we're going to see that on GLP ones where the people who are going to get them first are basically dead.

Felicity 24:46

Yeah, and the the great frustration for me, because of the the lack of strategy in the broader health portfolio, is we are spending our fortune on the national health reform agreements because acute care hospitalization is the pointy end of healthcare in Australia. But if you read AIHW data on possible preventable hospitalizations and the areas of diabetes, cardiothoracics, immunisations, all the basic chronic diseases that lead someone to end up at the hospital. We can't build the hosp the hospitals and beds that we need based on the way that we are not adequately attacking primary healthcare. It's not about bulk billing access to a GP, it's about the access to the medicines and the technologies that allows a patient to manage their condition far more effectively to live a not longer, healthier life, a full participatory life, and not end up at the emergency department because of poorly controlled diabetes, poorly controlled blood pressure, poorly controlled viral loading because you're not accessing certain things that should have been made available on the PBS or the NIP. And until the health department and the health minister actually understands that every time you negotiate a health reform agreement exclusive of the primary care, I mean, the health minister should have been saying, you know what, I'll fund CGM, I'll fund migraine medications, and I'll fund these things. But what I do, I expect you to see an X percent reduction in the number of hospitalizations based on this. And if we don't see that, then we have to work together and say, why are we not getting that health outcome? Because that would be a genuine strategic way to approach our health system, but nobody does that. Because what we do is we sit down, we argue the dollars on this and the dollars on that. And yet the greatest opportunity for making better use of our acute care system would be to empower patients to have access to the technology, medicines, and diagnostics they need to be cared for in the primary care system.

Paul 26:51

There's a lot of myths. There's a lot of mythology around the health system. And we see that with the government's claims about bulk billing. All you need is your little green Medicare card.

Felicity 27:00

Yeah.

Paul 27:01

And we even see that with the PBS. It's a universal program. Well, it's not at all a universal, it's a universal rationing program. It biases away from access towards delay rationing. A third of prescriptions in Australia, so 130 million or so, are dispensed effectively outside the PBS because they have no subsidy associated with them. Patients cover the full cost. And that obviously leads to a lot of issues. People use their medicine sparingly, they're not filling all of their scripts, they might do half dosing. At the CGM event in Parliament House a couple of weeks ago, we heard from Jody the patient who said, I just use it when I can afford it, and then I try and understand my patterns.

Felicity 27:52

And she's never as well and confident when she's not using it.

Paul 27:56

Yeah, so so let's just set aside this idea that we have this wonderful health system. It it it it has it has points of achievement and excellence. But it has a lot of gaps in it. And I think for us to pretend that the PBS is somehow this wonderful program I I think this is just it's a complete myth to me. It's it's it's it's a deeply flawed system based on rationing. And effectively the minister in his address two weeks ago was boasting about the success of that rationing.

SPEAKER_01 28:37

Yes.

Paul 28:37

And we set up these HTA advisory committees as if they're papal conclaves that are infallible and incapable of making errors. When in fact they make errors and poor decisions all the time. And there seems to be this reluctance to say it. And then Elisa came along at that event last week and said said the quiet bit out loud. Well, surely patients should if there's going to be this negotiation about a public health programme, surely it should be guided by patient wishes. I mean, it's a crazy idea. I mean, who would have thought? But we know that NDAs are already flying around the industry. I mean, the public position and the private positions are completely at odds with each other. So we need to get real about that. And I just I think the idea that we're going to have another example of where the institution locks the door and has a conversation with one group of people having a conversation with another group of people, completely disconnected from the day-to-day reality of patients. Industry, when has that ever worked for you? When has that ever led to a positive outcome? It hasn't. And I think there's a much deeper obligation here. The institution reflexively protects itself and defends its own interests. And that that includes the people who've been in it for 25 years.

Felicity 30:01

Yeah, and you know I do remember that the strategic agreement only managed to put the word consumers in at the last minute because everyone we remembered, oops, we're supposed to pretend it's about the patient. We couldn't use the P word, so we used the C word. Um but you do you and I have also had a conversation about why pharmacy does so much better. And pharmacy right now is transforming primary care because they identified a need individually with state governments who were feeling the pressure on their acute care system and worked out that this is a really important way to try and stop that queuing at the door for an emergency department. Now, I know uh Canberra emergency departments got cues at the best of time, but having to take uh family members to the emergency department in Sydney at 10:30 in the morning and the cues there were phenomenal, and a lot of that is because people are getting basic primary care treatment. So pharmacy worked out there's a common goal between what the state system is struggling with and how we can actually help on that. It's a win-win for everybody. It's also why pharmacy does really well, because their goals and a patient goal are aligned. If a consumer, a patient isn't happy in pharmacy, then the pharmacist misses out. Their business suffers. So people can say it's a bit smart and smarmy, but it's not. It's because their outcomes are aligned, because they are the business, because their relationship is in the end with the customer, the patient. They design what they ask for with the patient in mind. And it's not because they place greater weight on the patient necessarily, it's because they are aligned. Whereas the problem we have with the medicine sector is that that is not aligned. They see the customer as the government. And that is the problem. So even though pharmacy is paid, most of its money, you know, in the the subsidy system comes from the government. They see the patient as the customer and they design their models accordingly. And until the medicine sector actually takes that step away, and a lot of that's uh true for the case for the medical device sector too. They see the the government as the the customer, and they don't see the patient as the customer, which is why I think we see a lot of the the struggling in private health, where uh the arguments that are going on between the private health associations and the government are about, oh, this is all costing us money. And it's like, well, hello, I'm a patient, and it's kind of ironic for me that I can get a better source of med tech in a public system than a private system. So what's going on?

Paul 32:46

Everyone's more regulated. Everyone in across the health sector, everyone wants more regulation.

Felicity 32:51

Yeah.

Paul 32:52

And I don't get it. We want more government intervention.

Felicity 32:56

Yeah, and how's that working for us on the PBS guys? Well we're missing out.

Paul 33:01

Well, I I hear some of these groups argue for it. I say, you know, if you give the government more power, don't be surprised when they use it. And they're not going to use it. There's no history of them using it in the way that you would like them to use it.

SPEAKER_01 33:16

No.

Paul 33:17

So I I'm I'm rather confused by it. On on the PBS, there has been a conversational continuum for a quarter of a century. And would anyone argue that that conversation has been going well in terms of outcomes? I think it would be very hard to argue that. I think government's been very up and down on this. The government, the way that the program is administered in 2026 is very different to what it was 10, 15, 20 years ago. I I think there was a notion of stewardship in the administration of this program that was far more aligned to what was in the national interest, and by that I mean patient interest. Uh I think the idea of stewardship now is uh mostly a fiscal consideration. Uh every time I drive past the Department of Finance, which yeah you have to admit is a way over the top building.

Felicity 34:22

It's extreme.

Paul 34:23

It looks like it belongs in Dubai. So that's obviously not cost effective.

Felicity 34:27

But paleo bread.

Paul 34:28

But that's but that's sorry. He's gonna go and watch the YouTube video about the Department of Finance recruitment video, uh, where the secretary couldn't have me bothered learning the lines. Um but but it's a fiscal sense of stewardship. And I'm not saying that fiscal considerations aren't important, but there was an element of, and I'm just gonna say it out loud, officials used to protect the industry from their own stupid decisions.

unknown 34:59

Yeah.

Paul 35:00

There was an element of that that because of the commercial drivers of companies, sometimes they agree to things they shouldn't agree to. That sense of stewardship and system protection I think is less apparent now. And as industry groups prepare to go into another negotiation, uh obviously the government is setting up the HTA review as the basis for its negotiating position.

SPEAKER_01 35:37

Uh yeah.

Paul 35:39

Uh there are gonna have to be conversations about biosimilars, there are gonna have to be conversations about supply, all of those things. It would be nice that Lisa's out-of-the-box suggestion that they actually consult patients first and what that what what they think the priority should be. Because I think patients would give a very balanced perspective. Government's got to get a good deal, but they've also got to consider these other things. Because I can remember when she said I went, oh that's a crazy idea. But if you're the industry, I think you should think about the prospect of a conversation that's effectively identical to the one that you had five or six years ago, ten years ago, eight years, like all of the ones you've had, whether they really worked for you, and maybe there's a need to take a different approach, and that yeah, if you want to talk about comparators and discount rate, that's fine. Just understand the government's gonna be more than happy to have that conversation because they're gonna say, yeah, but we've had that conversation about comparators, we've just had this five-year review, and fantastically, you were part of it, you're part of every stage. We consulted 120, 130 different groups multiple times. We've just done another consultation with the procured expert, whatever that means. And so this is your idea. This was your process, you were part of it. This is the process you wanted. So we're gonna now implement it. Oh, by the way, that's gonna cost two billion dollars.

Felicity 37:14

As a starter.

Paul 37:15

As a starter. So that's you can see that's what they're doing. Yeah, that's what they're doing. So uh my advice to the industry, you need to start extracting yourself from that from that process. Are they gonna be prepared to be critical? I mean, someone said to me during the week that, well, Paul, we're just not gonna accept that on the outcome on comparatives. And I just kind of went, well, what does that look like, not accepting it? Because the government's just gonna shrug their shoulders and say, Oh, okay. Well, we're doing it. And you were part of the process at every step of the way. Including agreeing to call the system world class, yeah. Not dissenting on the final report, being part of the implementation advisory group, having all sorts of people directly involved in this process. The government's got every right to say, Well, hang on a minute. It's your review. Your review. When I when I announced the the minister would say in last last September at that meeting, when I announced my immediate response, which was a guideline review, a review of a review, you all clapped. Except for that idiot Paul Cross who just started laughing over everyone. Which is true.

Felicity 38:27

Yes, I did get the feedback.

Paul 38:29

That's it. It's so what's the problem? You welcomed it. You issued a press release welcoming my review of a review.

Felicity 38:37

They were issue press releases all the time, welcoming something that took nine years, ten years.

Paul 38:42

Yeah, so I don't know what the what what the issue is. So this is this is a huge strategic challenge. And I don't envy the people who are gonna have to come up with the industry's position on this. Because when they say we want more action on comparators, the government's gonna say, What are you talking about? We just had the longest He said it. It's the longest review. This review took longer than it did to draft the constitution and get the states to individually endorse it.

Felicity 39:10

Yeah, it's so funny.

Paul 39:12

The process is effectively the longest such process in the history of the Commonwealth. I literally could not find anything. The only thing that beat it was a Royal Commission, institutional child sex abuse. But this is about to go racing past that.

Felicity 39:26

And let's be fair, that one had thousands of witnesses, transparent information, complex, yeah.

Paul 39:34

It was a long, it was a multi-year judicial process that led to a lot of change.

Felicity 39:40

Very important change.

Paul 39:42

This is a long, nonjudicial non-judicial process, closed process that is going to lead to virtually no change. And you've been part of it every step of the way.

Felicity 39:55

Yeah.

Paul 39:56

But anyway, at some point, see, I feel like I've sort of walked in this trap, this sandpit of uh you know, because obviously this is the thing the beauty of these agreements for government is that they get to say, why are you raising these issues? Well, we're gonna have to we'll consider that in the next agreement. We can't really talk about it because it falls out of the scope of the current agreement. So the HCA review becomes this is it a cesspit? I'm not sure what the proper description of it is. I'm sure George Orwell would have had something some way to describe it.

Felicity 40:39

But I'm sure you'll look it up over the weekends.

Paul 40:42

I will find, I will find, I'll find something, you know, but it's it's yeah. Anyway, it's it's very frustrating because I can see that this is this continuum. This is why I was so supportive of Owen Smith when he came out and said we've got to work out what we're doing here. What are we doing? That's the first conversation. What are we trying to do? Because the significance of Mark Butler, Mark Butler's address is because it's it's kind of the it's either a full stop or a semicolon. I'm not quite sure. But he he was that that speech could have been written by me for my minister 25 years ago. Once they start using the word sustainability, I would argue that the industry needs to take over that language because the program is not sustainable on its current path, and government's tendency will be to double down and do some really crazy stuff. So, you know, because you get in the history of these programs, you get these moments of ratcheting down. These moments of significant change. You had F1, F2, that was quite positive, but then you had the statutory price cuts in F1.

Felicity 41:50

Yeah, and they said that would never happen.

Paul 41:52

It was a red line.

Felicity 41:54

It was a red line.

Paul 41:55

It was like Barack Obama's red line in Syria. The Syrians walk right across that red line.

Felicity 42:02

But it's but it's an important point, and I think you know, you and I have talked about, you know, this week you we're watching the government start to spoon feed information out, you know, like the budget rules that say that each you know agency portfolio needs to come forward with you know targets of five percent budget cuts. Um and I I think a lot of people will falsely take shelter behind the NDIS because it's part of the portfolio, and they need to remember that the administration of the program is separate to the actual policy overview of um the the scheme itself. So, you know, you have an NGIA and we we need to I and I do, I really think a lot of people go, Oh, that's cool because now it's one big portfolio, it's so much easier for the minister to find funds.

Paul 42:51

Whereas That's actually a very good point you're making.

Felicity 42:54

The reality is that it's not the the NDIS has its own targets, let alone the fact that as a broader portfolio, that's not necessarily the money to save. And I think Oh, I encourage patients, and I still do, to fight hard for being at the centre of these conversations because the evolution of that group in the department from you know being an access group to a financing group to now a benefits group makes it about the transactional widgets in a way that no other areas of the health portfolio, health disability and aging portfolio treat people. Um and you know, listening to Senator Austin and Senator Poe on on the work that they're doing with respect to the support at home packages and uh the disaster that that is at the moment. And so many other we we have a different approach, but this area is just really seen as this is. A transactional issue, and you should be grateful I give you a benefit. Um and I think we need to be very careful.

Paul 44:08

You're making a really good point because whilst it's in the name disability of the department, in a legal sense they're very different. And also in a political sense, the minister is the minister for disability in the NDIS. Yes. And then on a separate line, he's the Minister for Health and Aging. So they are politically and around Department House treated as two separate portfolios, effectively.

Felicity 44:38

So particularly when the NDIA is a separate agency, it has its own statutorily appointed board.

Paul 44:45

Yes. So it operates really differently under a very different legal framework. So whilst it's the Department for Health, Disability and Aging, they are for all intent and purposes separate portfolios. And so the idea that they can take savings out of the NDIS and put them in the PBS, that's not very that's not a very neat way of looking at it. And I don't think they're looking at I don't know this. They're not looking at disability and they're not they're not looking at it that way, is what I can tell and basically what what what you read about it, but we'll I suppose we'll hear more about that uh in the in the in the budget, but it's a big focus for him. But you're right, there's cultural and legal differences and the PBS is lead you know the it's a transactional widget program now. And if you're going to talk about your products as if they are widgets, don't be surprised when the government treats them that way. So there's that opportunity, and I say to people you've got to intellectualise this. And I think that starts by, as Lisa Robinson, hey, why don't we just get the patients to say what they want and then you go away and deliver it.

Felicity 46:12

We need to remember what what has really been lost in calling it finances and benefits and all that kind of stuff. It's actually supposed to be healthcare. And uh because it has become so transactional and become a purchaser provider arrangement, we've lost health care. It is health benefits. And think about what that means. Think about the psychology of when we use the term benefits in the social broader social services sector. We talk about your, you know, disability benefits, we talk about your unemployment benefits, we talk about your um support care benefits. We we use benefits to be we give you a certain amount of money and you should be grateful because we're trying to tarde you through something. As opposed to healthcare. Healthcare is also still based, and it's a bit why our private health is so stuck in the 1970s version of what it meant to ensure for your health. But we still look at healthcare as if it's an acute episode.

Paul 47:15

Mm-hmm a car crash.

Felicity 47:16

Yeah. It's it's this moment in time where you need something and then you back out again. You need something and you back out again. And you're right, if you're a general patient and you're very healthy and you're and you need antibiotics once a year, or you know, you go to, you know, you've fallen over and need to get an x-ray to check that you didn't, you know, fracture your wrist. Yeah. But healthcare, in the way that the society is evolving, both with chronic disease and with mental health, that we continue to give an elevated platform to is a concern in healthcare. We we've changed what healthcare means in this country, but we are not changing the way we talk about it, and we're not changing what inputs actually go into that. And so we see healthcare as a program that provides you with a support service somewhere in the system or access to an individual clinician, as opposed to recognizing that the other inputs to genuine healthcare are the widgets that you've dehumanized in respect of medicines, devices, diagnostics. And until you actually break through that conversation, because that's what a patient sees, we don't see your widget. We see I have this chronic disease and I rely on five medicines, three devices, two specialists, one GP, and three allied health professionals. That is my health care. That is the upside of the NDIS. The NDIS actually looks at you as a person and what do you need for your entire life, not just the individual programs that may or may not be allowed to contribute to your better care. And so whilst we're all focused at the moment on the affordability of the NDIS, and I know it's it's getting a lot of media attraction, I encourage people to think about what equally should the healthcare system be learning from the disability support system that says, I see you as an entire person and everything you need, not just disease by disease state. And I encourage the medicines industry to let the patient in to talk about their experiences, the jodies of this world who are dealing with so many issues with respect to their own health care and that of their children's. If you let us tell you how we need the system to work, if you're genuinely patient-centric, and I know you don't like that term, but if you put me at the centre of that, my healthcare would not be the way it is today. It's a hard thing to move, but you do have to start it starts to break down this issue of the PBS and the MBS and the devices sector being completely disaggregated and set aside from me in what I need for my healthcare.

Paul 49:50

It's a cultural thing in healthcare, which is this idea that we're all passive recipients of expert brilliance.

unknown 49:57

Yeah.

Paul 49:58

Even in the department's response to me on that question, we've procured the relevant experts. Well, what what makes them particularly expert?

Felicity 50:04

They're expert at consulting or doing flow charts?

Paul 50:06

The expert on flow charts, right? And writing guidelines, submission guidelines. I'm not interested in that. Have we really run this is the best we can do as a country over what virtually five or six years.

Felicity 50:17

Well, remember, we're still getting regular feedback from you know, this is how you write a better submission to PBSC so you can be heard as a patient.

Paul 50:24

Squeeze me. Yeah, squeeze me. That's right. It's and that and that that to me is the problem. It's a cultural problem. It's not a problem of guidelines, it's attitude and culture. It's this idea that patients, you're too stupid to really know what's good for you. So you you just need to sit there, be quiet, and we'll tell you what's right for you. It's the whole advertising ban, the ridiculousness of that. Because it denies it denies it denies agency. It denies agency, but it denies the existence of this crazy thing called the internet. And because they have to deny the existence of the internet and the impact of that. Because to admit that that's a reality that we have to live with, then they have to admit that, well, we're gonna have to accept the patients have some agency in this.

Felicity 51:10

And that was a really scary session at um the most recent estimates hearings because the TGA were very proud of their stalking and tracking of you know, people inappropriately accessing US websites and calling companies into practice. And most disturbingly, one of the um liberal senators was all for this, you know, this this information and making money, you know, these billion-dollar pharmaceutical companies, you know, manipulating us all and making us want something.

Paul 51:38

These idiots who haven't heard of VPNs.

Felicity 51:41

Yeah, but even just but I find it also so offensive about why can't I research what might be in the best interests of my children? So, you know, why can't I research? I'm allowed to research what clinical trials are on because hey, the government won't pay for that, so I'll be asking the company for a freebie. So they're all good with that. But they don't want me researching medicines that may or may not be appropriate for my children or for my family, or devices that may help us actually like get some better health outcomes for ourselves.

Paul 52:12

I to me it's it's farcical. And I, you know, I've been on about this for years. The uh the ban on companies, health technology companies communicating with patients directly is is is not just dumb because of the the reality of 21st century technology, it it's counterproductive and it's dangerous. It also denies individual agency. The the reality is, and you know, I had an academic paper on this, the fact is that people do not consume information passively. We are not passive recipients of information. So when the the PBOC issue those diktats every couple of months, oh, this is what we've just done, and we're so busy and uh how hard it is for us. People people are not taking from that what they think they are taking from it. People don't consume information that way, you know. It's like when it's like when the Prime Minister said, Don't go and fuel your car. There's no need to, because we've got all the fuel, we've got all the fuel that we need, no need to panic. All they hear is the word panic.

Felicity 53:21

Why are you even bothering to do this?

Paul 53:23

Yeah, why if you're telling me I don't have to worry, they focus on the words, on the negative words. And so that's why people went and filled jerry cans, because the Prime Minister said they didn't have to. Because they don't trust him. Yes, people don't consume information the way people think they do. And so when someone goes online and looks at information about a particular medicine, I mean, how many people get a prescription and walk back to their car and and search information on that medicine? And because of the power of AI now, it's not like an old Google search where you just get links and you know you got all these links relevant based on relevance or whatever. The AI platforms will now tell you everything you need to know about that medicine.

Felicity 54:06

Don't tell the TGA they'll be going after Chat GPT.

Paul 54:09

Well, good luck with that. They'll be telling them where it's registered and where they can get it. And if it's not subsidized, though they will tell you, well, you can get it privately through X, Y, or Z. And that to me is the stupidity of this law. So, TGA, you can knock it, you can you can employ a hundred thousand people tomorrow to try and stop people doing this. Probably better off coming into the world of the reality, and actually controlling the information, giving, empowering people. Like, like, you know, because you know what they'll do, they'll say, Oh yes, but you know, that's the credible, you need to go to the credible source.

Felicity 54:42

Oh, the NPS.

Paul 54:43

The now abolished NPS. I can't even remember the name of the organization that does QM these days.

Felicity 54:49

Isn't the Safety and Quality Commission or something?

Paul 54:51

Yeah, yeah. But no, no, you should come to the TGA website and you can look at the CMI. Yeah, okay.

Felicity 54:56

Or you can go to Health Direct or you can and I'm fine with that. But you you can't just say that only government curated information is the best information there is. Because, you know, we were first in a queue of two, um, and we weren't going to be so, you know, we weren't gonna put people's lives at risk by just racing out and having vaccinations, and we weren't gonna do this and we weren't gonna do that.

Paul 55:20

So And then we did.

Felicity 55:21

And then we did.

Paul 55:22

Uh so yeah, I just it it it amuses me nowhere in those conversations because there are these, you know, these sort of fake conversations where the TGA officials know that they're talking absolute nonsense. But they know they've got to say it. And it would be far better. Can can we at some point have the intellectual conversation and say, Senator, I understand why you're saying that, but in the 21st century and in the quickly, fast emerging world of AI, I mean on our AI platform, we're getting 650 queries a day. A day. And that's behind the paywall. So people are using it because it's very helpful and it's convenient. And I encourage people to use it. Because it it also makes it better. So people can access the information they want to access, and they're gonna trust that just as much as they trust anything else.

Felicity 56:13

And I think the government needs to realise that during COVID we changed, we endorsed and changed the behavior. So people didn't say that I've had my COVID vaccine and say, Did you get an Astra, a Pfizer, or a Moderna?

Paul 56:24

Like, well, until the governor of Queensland, now governor of Queensland destroyed the Astra vaccine.

Felicity 56:29

Yeah, exactly. But you know, and we can go into those conversations. But the point is we actually watched the government talk about getting information, encourage people to understand it, through information at them, said you've got to trust us, you've got to trust this, you've got to trust that. Part of the reason we have senators who are highly skeptical these days about the vaccines is because, you know, I wish we'd had the Royal Commission because there are some things we got right and there are some things we got wrong, and you just need to own it. But we are in constantly in a defensive position, and we're we're seeing all that problem now with reservations about immunisation for flu shots and everything this week. And you know, that here it comes again. It's like, yeah, people are jaded by what we did. But again, we raised the threshold. We as a community let the government say this is what we're gonna do, and this is why medicines work, and this is what vaccines say, and this is how it's all gonna work, and we we got everyone into brand names and we told you which brand you could have versus what your your indication were.

Paul 57:28

You and the TGA was fine. Yeah, and they were fine. They they advertise it. They they they let it through.

Felicity 57:34

Yeah. So you can't have it both ways.

Paul 57:37

Well, apparently we can.

Felicity 57:38

That's that's true.

Paul 57:41

Just to finish on, had we actually had the COVID Rule Commission, I would bet anything that would have been it would be over. Faster than the HCA review.

Felicity 57:55

Definitely.

Paul 57:57

So on that note, thank you, Felicity. I am getting so I'm getting my flu shot next week. I'm definitely getting a flu shot because I didn't know what the flu. I was I had a press release during the week about how terrible Australians are this year.

Felicity 58:09

So I'm not Yeah, just for your listeners, he has been really worried about it ever since he got the press release.

Paul 58:14

So marketing work is don't tell the TGA. Yeah, don't tell the TGA. All right, thanks, Felicity, and thanks everyone everyone. Keep using the AI platform. The more you use, the better it gets. But it's it's basically changing and evolving every single day. Like I said, we're getting 650 queries. It is fantastic if you're looking for information. We only search our database. So some company security systems freak out a little bit, but we don't go outside. We don't currently allow people to upload documents, but but we do use it to construct narratives on our 16,000, 17,000 article database, and people are using it really cleverly, which is which is great. Uh, but so keep using it. Thanks for listening. Have a great weekend, everyone.