The 'Dispatched' Week in Review'- 26 June

Congratulations to one of Australia's leading health journalists on a highly effective series of stories and commentaries that reveal the true extent of this country's challenge and the problems patients face in accessing medicines. A welcome hardening of the research-based industry's public position on the need for change, a very good report on a needed health technology, and another 'cheap' outcome for patients.

Transcript

Paul 0:08

Hello and welcome to the Dispatch Podcast. Week in review. It's Friday, 26th of June. End of financial year approaches. My name's Paul Cross. Delighted to be joined by my cohost, Felicity McNeil, PSM, Chair of Better Access Australia, amongst other things. How are you?

SPEAKER_01 0:24

Oh, look like you.

Felicity 0:26

End of financial year is looming. Another sitting week.

Paul 0:30

And one more sitting week before the winter recess.

Felicity 0:33

I know.

Paul 0:36

It's very foggy in Canberra this week. Yes. Lots of delayed flights.

Felicity 0:40

Flying the night before Peeps.

Paul 0:41

Yeah, flying the night before, because this time of year there's a lot of fog around in the morning. And and most mornings actually have fog, it's just that it lifts before people wake up.

Felicity 0:52

Yeah, but um I think that from where I sit because I can see out over the hills. Uh on Wednesday, it was still there at 11 days.

Paul 0:59

Well six four.

Felicity 1:01

Yes, we're auditioning for the bomb people.

Paul 1:04

The bureau, actually.

SPEAKER_01 1:05

No, I'm not calling the isn't that isn't that what they wanted to that's what you you may choose to identify as the bureau. I still see you as the bomb.

Paul 1:13

Yeah, because of course people are going to confuse the viewer of meteorology with Hamas. I mean, it's just crazy. It was a silly ninety-six million dollar spend. Did anyone lose their job over that?

Felicity 1:22

Uh no. Someone, yeah, they're both Oh, that was on um the sounding board where the people that did that obviously left anyway and got their payouts, and then the people in charge of then actually offering a contract again to that same company to spend a huge amount of money on the climate change version of the website. And to let's let's wait and see how much that one ends up costing. Just ask Chris Bowen. It might be like a battery and go from two billion to twelve.

Paul 1:50

I wonder if KPMG were involved. Oh yeah. Probably somewhere along the line. Hey, I've got to admit, I have to confess to an addiction.

Felicity 1:57

Yeah, well, I was gonna say I'm noticing my new uh setup here with my microphone.

Paul 2:03

Amazon. I've become addicted. I I actually struggle to go a day without buying something on Amazon. Not because I need it, because I've bought all sorts of rubbish, cables, Japanese rice rinse up, which is actually very good, by the way. All sorts of because I just love the delivery speed, the next day delivery. Same day delivery in some cases, and it just appears. I don't know who delivers this stuff, I don't know how it gets here, but it just arrives and it's sitting at my you know the front door.

SPEAKER_01 2:33

I know you are the mitch of modern fan.

Paul 2:36

It's an addiction.

SPEAKER_01 2:37

But it's good.

Felicity 2:38

I mean, you're you're happy and I've got a lot of useless things I don't need. I think I'm gonna surreptitiously encourage you to purchase some things that I might like uh during the the course of things.

Paul 2:49

High speed USB C cables. I bought I'm so addicted to it. In fact, I'm so addicted to it, I decided to change my bedside table setup because I had this very old sort of setup, and because my eyesight is so bad, I couldn't see the clock radio, so I thought I'm gonna get rid of the clock radio and use my phone. And so I bought I went shopping for a phone stand that I could use that was also a charger, high speed one, and Apple had one, but Amazon, it was only available on Apple, uh, and it wasn't available on Amazon. But but what I did, no, no, no, I still bought it, but I bought the I I paid a bit extra to get the rapid delivery, so I had still had that Amazon feeling. Because I didn't want to wait, Apple said it'd take three days under normal circumstances. I like how waf there it is. I want it today. I want it right now.

Felicity 3:43

I want it Amazon time, I want it Amazon time, so neither not yet sponsored by Amazon or Apple.

Paul 3:49

No, no, no, or Dan Murphy, which is the other group that do really, really quick deliveries, although they are trying to change that in the ACT.

SPEAKER_01 3:54

In the ACT, yes. You you need to just think for two hours before you really have that bottle of wine.

Paul 4:00

A group of people you would not invite to a dinner party or any event would be ACT government people. Because they're just they're just not funsters, right? I know, I know, you know what I mean. They're just not funsters.

Felicity 4:13

No, I think there's the the people that enjoy regulation. So I think there are those of us who work in in government in different forms at different times. And I mean, when you work in health, you you can't have ever imagined.

Paul 4:28

Can you imagine going out with those people? Can you imagine what it must be like? If they're gonna try and ban rapid home deliveries of alcohol, yeah. It's just the fun police.

Felicity 4:43

My favourite one is still the one where if you order, because you can get the takeaway and the wine delivered from the one place, but you can get your takeaway immediately, but you have to wait two hours for the bottles.

Paul 4:54

I know, honestly. Can you imagine the meeting at which that was discussed? I know we spent five minutes on this now, but but can you imagine the meeting where it was discussed? Did anyone actually put up their hand and say, This is why are we wasting our time? Why are we talking about this?

Felicity 5:07

Well, again, it's it's about the the policy, and I know you want to talk about what is policy. Yeah. The issue that this is supposed to be addressing is concerns about domestic violence in the ACT. Don't get me wrong, it is it is a serious problem here, as it is anywhere in the country or globally. This is something that you know women and children and men should feel safe in their homes. This has been extrapolated to this is the risk of um alcohol fuel, domestic violence. And so the way that we deal with that is to stop anyone being able to order alcohol. It's more important than they get in their car and drive to pick it up. And you know, maybe that's you your cool down period, your two hours, or to to stop it's a serious issue, not being taken seriously. And that's the point is what is the problem we are trying to solve? And it's again a bit like the issues we've had in the past when I've talked about the absurdity of how we're regulating access to paracetamols and the cost that has levied onto people with chronic pain because now because we're trying to prevent a minutia of the community from using paracetamol as a form of uh a cry for help with respect to suicide. And, you know, sorry to those who might find this distressing, but we're we've changed the landscape for everybody who uses that on a regular back basis, you know. So whether you have arthritic pain or general back pain or period pain or so many other forms of pain, and if you live with it on a chronic disease daily basis, we've made it six times more expensive for you to treat your condition. So we've for millions of people to have to pay more and to have smaller quantities available to achieve one particular outcome. And it's a really good example of where a system can be made to turn right and sort of looking left and go, oh, well, that's a that's a quick fix. That's what we'll do. This will solve this problem for this many people. And we don't stop and think about what are we actually doing to everybody? What is the price? And this is what you're supposed to understand in a democracy and rule of law. What am I giving up for the greater societal good? How how does it help? And anyone who's actually studied law or public policy knows that that's what you're supposed to be constantly evaluating.

Paul 7:36

Well, uh this is a really good example. As tragic as that particular story is, it hasn't really it's m it's made the large packs of paracetamol slightly less accessible.

SPEAKER_02 7:53

Yes.

Paul 7:54

So so I can go to a supermarket and I think it's two pack two pack limit, is it?

Felicity 8:00

I think it's a one-pack limit in the city.

Paul 8:02

Really, one pack limit, sixteen tabs, and it's seven or eight dollars. Yeah. I can go around the corner to my pharmacist and ask for the hundred pack and it's a couple of dollars. Probably not here, but behind the couch. I try to support my local pharmacist.

Felicity 8:16

Hi Rob.

Paul 8:17

Hi Robin here the other day. So so it's just to me, it's uh it's a sledgehammer. And the people who are suffering are the people who live with chronic pain. And once you get to well, my age, pain is a uh a daily lived experience. Mine is not acute, like a lot of people. I don't have things like back pain. I've got some issues from when I was younger, but and I also when I go into a pharmacy, I went to another pharmacy last week and asked for it. And they look you up and down when you ask for it. And that's that's me. So it worries me how it's impacting young women in particular.

Felicity 9:06

Well, yes, I know as someone who has young daughters and I do apologize to them for using them on the podcast without their permission, it is an issue for them when they walk into a pharmacy to ask for a higher pack of paracetamol because of the reason you know, they shouldn't have to disclose why they need the paracetamol or whether they're, you know, purchasing it for their parents or for themselves. Like pain is pain, and we we deal with it a lot, and I I appreciate the care, but yes, I I know that they would prefer that I get the um paracetamol than them because it now comes with stigma.

Paul 9:46

Yes. Uh let's talk about the series in the Australian This Way. Uh health editor editor Natasha Robinson has done, I think, a fantastic job. She's spoken to a lot of people. She interviewed both of us. I think my quotes might have been a bit spicy, to be honest. But but uh shocked. Yeah, yeah, yeah, yeah. You know, I can't help myself, but uh I think she quoted you extensively, particularly about patients being an afterthought, which I think is a really good characterization. But I want to congratulate her on the series. She's got a really broad voice, also some different voices, which which I think is really, really good. I thought Carl talking about migraine uh yesterday was fantastic. David Thomas talking about genomic profile and the impact on clinical trials, because of course there's no prospect of Australia ever being able to do through the PBS the sort of thing that he's doing with Omico. It's just not gonna happen, it'd have to be a separate program. But it's been a it's a really interesting series, and I I she's I know she's invested a lot of time in it and spoken to a lot of people, and I think she's done a great job.

Felicity 10:59

Yeah, look, she has an um it's really investigative journalism is something that is increasingly hard to invest in, I think, yeah. For for, you know, you would know that yourself. But making that time and and the commitment to it, and I I think there there is an opportunity, I think, with the Australian having set up this dedicated, you know, health team to try and look at things and to start to understand trends. You know, I suspect that Natasha is going to be cracking open the issues that we as patients have been trying to talk about and to to give it air much more than has been given in in the past in mainstream media because everyone gets caught in that that cycle of, you know, we want to have a a concern about the PBS, but then we welcome everything, and then we we think we have a concern, but then we welcome everything. And taking that time to make it not just one article that disappears in the 24-hour news cycle has been important. And it's it's what can patients do to build on that, and what can the industry do to build on that, and how can we hold the system to account? Because that is the thing that is so often devoid in in this area, which is that people cannot maintain the momentum. As someone who is still arguing about newborn blood spot screening into year five because it's not being done properly. If you don't keep going, the system just and moves on.

Paul 12:37

Yeah, it runs the clock. The system is incredibly good at running the clock. And my my admiration for what she's done is that she's taken invested an enormous amount of time, which as you rightly say, it's very difficult for news organizations in 2026, but she's invested an enormous amount of time in understanding the complexities because this system exists in the weeds, and that's its main defence mechanism, is the unnecessary complexity, which is why the people who sort of dominate it have dominated it for most of the century. And if you even go back into the distant history of this system, go back to the eighties and the nineties, it was a small cabal of people who drove its development, and to this day it's a small group of people who dominate its thinking.

SPEAKER_01 13:22

Yeah.

Paul 13:23

So kudos to her for for spending and investing the time to get her head around that, and then to be able to translate that in a really effective way. I think she's she's done a she's done a great job, and um hopefully it'll have an impact. Because the beauty of it is, of course, is you get the the standard bureaucratic lines. Well, you know, the and the migraine response was classic on this. I mean, you and I write in as responses 25 years ago. Well, you know, it's uh independent expert committee, which they're not, they're neither independent nor are they particularly expert. And I don't mean that as a negative reflection on the individuals, but that committee has no particular expertise that doesn't exist outside. What they have is positional power. That that is the basis of their authority, is that they have positional power. They're not independent, they don't administer themselves. The minister could sack them all tomorrow if he if he chose. And they have no budget, they don't set their own rules, even though they'd love to. And of course, as I always say, what does what does an advisory committee hate more than anything else? It's the word advisory. And we saw that through the HTA review, which I know I hate to mention. Come on, I was saying you weren't gonna I know I know we need to make it we need to make it like that scene in the oh no, I'm probably not allowed to talk about the in-betweeners anymore. Um when he mentions a girl every time he mentions the girl that he likes, how his friends respond. But but you know, I think this is really it's a it's a critical point in a sense, and this is why I wanted to talk about policy. People misunderstand the definition of policy because HTA is not a policy per se. HTA is the policy the government has decided on to make funding decisions. So the policy is we're gonna use HTA to guide our decision making on health technologies. That's the policy. The policy is not the comparators or the discount rates, the policy is the use of HTA. And the problem with the review, they call it a policy and methods review. Well, it was definitely a methods review, but it wasn't a policy review because the terms of reference state very clearly, oh, we're not gonna change the underpinning policy, which is the system's basic architecture, which is the primacy of HTA. So that that inevitably leads to the outcome we we have where everything these committees produce, the two key committees produce, is considered like it's a papal diktat. And and it's and it and they treat these meetings like it's a conclave. And and to me that is deeply problematic. And the maze with no exit example, the way I describe the system, is that once you get in it, I don't know, people something funny happens to them.

Felicity 16:21

Yeah, like you said, it's it becomes a a religion rather than a tool. And so I was talking to someone earlier this morning about that capture and the importance of bringing in you people to challenge. So I mean I remember as a graduate and it was they um the history of the public service, and we did interviews and videos for two years that my kids got to go and watch and laugh. And I was taught in my very first few weeks when the public service was downsizing, was that you were here because you don't know. So challenge, challenge, challenge, ask, ask, ask. Unfortunately, that's the video they put up, so my children thought that was a great idea that you could do forever. Challenge, challenge, challenge, ask, but it's an important point. And one of the great things about moving and doing different jobs and coming into something, it's intimidating and it's it's almost scary because you're surrounded by experts and everyone knows the system. But the importance is that you just sit there and look at it and go, why? It's the power to ask why. It's the power to say, don't tell me no, tell me how. Then I'll decide if it's why. That's not the way the system is these days. It it defends itself against anyone. Anyone who wants a different outcome is is somehow um like of of an alternative view that's not welcome. And it's you're you're you're saying that we're not the best, you're saying we're not doing this, we we know this better than anybody. And it's not true. And the problem is that if you're actually going to review policy, if you that review was not policy, and if you're going to do it, you actually do need fully independent people or people who've been outside the system for a little while, who can actually, yes, by all means understand what you're trying to do, but also understand where it's going. So what why, and when we have the Royal Commission that's going on at the moment, and I know we're not going to talk about that, but there is a reason that a Royal Commission is staffed by a huge number of people who are not experts in the area, who look at it dispassionately and objectively, to then try and understand the basis by which things are done, the emotional and the psychological decision-making that comes to being and the processes that government is using, and are they appropriate or not? And you need that constant reinvigoration, you need change. Yes, you need some, you know, consistency for for for remembering past and future, but you can't be captured by your past. You have to learn from it and you have to be open to new ways of doing things from those who actually are the people that you're supposed to help in the system. And I don't think we are there at all.

Paul 19:21

Yes, we we we have a system where institutional capture is a requirement.

Felicity 19:27

In this area of health, particularly. Yeah, yeah.

Paul 19:29

You you have to fully buy into this. Yes. Otherwise, you're not going to be part of it anymore. And that that's that is one of the reasons it's deeply problematic, is that that inevitably leads to a situation where people occupy appointments in these on these committees for over 20 years, 20, 25 years. And that's not a recent thing. That was a problem that that we identified in the late 1990s. There was someone who'd been on the PBSC since it was established in the 1950s, and that was and that was in in the late 1990s that becomes a problem. So they get institutionalized, and that's not symptomatic of anything other than a a demand the institution makes. You have to toe the line.

Felicity 20:17

Yes, and it's uh I I saw some comments by Brian Shaw online this week, and uh kudos to him for saying them. But it's it's a behavioral economics thing, which is when you keep putting good money after bad because you want to prove you're right. And no, I can't give up now because this is what we've always been doing. And what I think has happened here is we've hit a tipping point and the system doubles down as opposed to saying, you know, it's okay, we we can be stewards, we can pull back. So, you know, a lot of what I was talking to Natasha about is this absurdity that what the PBAC says is gospel and that's it.

Paul 20:54

Yes, it never makes mistakes.

Felicity 20:56

It never makes mistakes, and you know, it's absolute. And the department says to industry and to patient, well, you know, oh no, well, I the risk share says it has to be 90% rebates and only 10,000 patients. And you know, at this price, and they're saying, well, we can't afford that, it needs to be 60% rebate and 15th. Oh, well, we can't do that. The PBAC will have you have to go back to them, you know. Oh, we want this differentiation. Oh, we can't extend that the PBAC, you know, that's not beyond our remit. That's codswallop. The advisory, and I say this to patients all the time: a molecule, yes, the first time the molecule is listed on the PBS, it requires the advice of the PBAC. Thereafter, a ministry could do whatever they like. Okay, they they choose not to. They choose to use it with the guidance and the advice of the PBAC. But let's be really clear 15 years ago, 10 years ago, we were not saying to industry it's it's this or nothing. The the department exercised as delegates, as they should, a delegate is supposed to think and make decisions. About, well, the PBAC has recommended this versus that. And the the supplier, the industry is telling me, you know, I I can't quite do that, but we could do this, do that, and trying to find negotiate a compromise. That's your job.

Paul 22:14

Well, that was the PBPA did that all those years ago.

Felicity 22:16

They didn't even need that. Like I'm saying, we were even doing that without that.

Paul 22:19

No, but they've it they've they've invested so much authority in the PBAC, is it's it's become, you know, as I as I described it this week, it's like watching an elephant or a unicycle. It's it's crazy, is that they're constantly twisting themselves inside out. And we saw this yesterday in Natasha's piece about migraine and chronic conditions, where the department said, Well, of course, if the companies would like to make a submission, because Carl was making the obvious criticism that these are third line, and I've got to have migraine for over 15 days a month. So I've got to be completely incapacitated effectively for most of the month in order to qualify for these therapies. And I have to have failed three other things, many of which are 30 years old and don't work. And the department go, well, we would welcome a submission. I mean, we all know and we all know that's BS because the companies are acting completely rationally, particularly in an area like migraine, where the agreements are so appalling.

Felicity 23:15

Yeah, and that's what we saw with um uh moderate to severe dematitis and eczema, etc., with uh the the companies there. And it was only because they threatened to delist that in the end we saw some changes in that area. But it's it's this absolutism of, well, you know, you're welcome to do this. Like, okay, but then actually understand the system. But like I said, I'm far more concerned and and I'm grateful that Natasha did go and explore a lot of chronic disease. Because I I appreciate that people who are living with cancer and and rare cancers are very concerned about their access, and that's great. Um, I find that because it's small populations, they tend to get outcomes faster than chronic disease populations. Because as the minister said himself, we don't do chronic anymore.

Paul 24:03

Yeah, and you're on these drugs for a short period of time.

Felicity 24:05

Yes, and it becomes a a real it it it is a greater challenge than what actually occurs in in the rare disease or the rare cancer or just general cancer sectors because of the number of patients being treated can be very tightly controlled. You know, the productivity commissioner talks about it all the time about the prevalence of chronic disease is younger, it's starting much younger in uh Australians, you know, in their 20s now, it used to be sort of really in your 40s, it's happening younger, the multiplicity of them is rap rapidly rising, and yet that is the thing that we are walking away from. And I get, I get it's expensive. But because the system isn't linked, because the system says, here's an extra, you know, X number of billion to keep the hospital doors and the ramping up, but we'll we'll give you the money on that, which doesn't solve the problem, but we won't give you the money for the the medicines and the devices that might actually keep you out of hospital in the first place. We'll we'll just keep it going and keep it going slow. And so I was very grateful that she did seek out patients who live with chronic disease and what that means, because that is that is a a silent suffering because we don't, you know, you you can see it all the time. We what we would we draw attention to in the the crisis of immediate life and death, we focus on it the slow erosion of your quality of life over decades, the slow anguish of a system that says, I want you on your knees, I want you broken before I will help you. Well, that is what this system says.

Paul 25:43

Yeah, and if you think about migraine, where the PBSC were always very skeptical because it's not a the the diagnosis involves a conversation between a patient and clinician, they hate that because they don't trust it. And so for me, this is pretty simple. The system was designed in the 1980s, debated in the old Parliament House, which is insane.

Felicity 26:06

Yeah, hundred-year anniversary.

Paul 26:07

W when you think about it, a building opened in nineteen twenty-seven by the future K King George the Sixth, and that that that building is now a museum. And frankly, I think the framework which it legislated for us so many years ago belongs in a museum as well. Well one of the my m one of my core critic cr criticisms is that the PBAC has expanded its role intentionally and through natural evolution, but the accountabilities have have not altered. In fact, I would argue that it's probably become less accountable over the years as ministers have tended to step back. So so I I believe that it it's not just a case of really needing to wind back what it does, it's also a case of having to make them more accountable and and we need them to be more accountable because they're not transparent. Uh we don't know who the discussions are, for example, and the argument against that is just utterly pathetic and non-transparent. We don't even know how consumer comments, how patient comments are presented because they've I've been denied access to them by FOI. So it's not just that the decision-making architecture is bad, the lack of accountability is bad, and I I believe has contributed to this very strange culture where this committee is for some reason, both of the committees really, yes. Are seen as infallible.

Felicity 27:40

Yeah, look, and I read, and you know, I'm a huge fan of Professor Wilson and read his comments uh which were quite balanced about the tensions and things. One of the things that I was concerned about was that the PBSC needs more resources because it's being asked to do so much. I'm like, no, it actually doesn't. Like perhaps you could do a bit less. Um the way you're doing that and you're comp complicating things. Like I said, the fact that everything goes back to PBSC as opposed to a delegate um meeting their obligations under um the Judicial Review Act, which is to actually think about what's there and actually make a decision and see it for what it is. It's guidance, it's not absolute, uh, is is a big problem. It's also why, as we at BAA remind people, and and I talked to Natasha about it, which is if this is the way it's going to keep going, then the legislation does have to change. And like I said last week, it has to be about that the PBAC's role is to make you know medicines, vaccines uh, and other things available to the to the community to improve their health outcomes. That should be their primary role. The method by which they do that, by all means make that secondary, but you have to put prima facie, their job is actually to care for patients.

Paul 28:54

Yeah, we've got to change that. Change the decision-making criteria.

Felicity 28:57

The second thing is these and you know, when your advisory body is becoming pseudo-decision-making and absolute in its power, you have to make that appellable by the general community to the administrative review tribunal. I have to have the right. And the fact that the MSAC and the PBAC are exempt from uh challenge in that area is a disgrace. So that has to change. Those two quick legal changes would help and empower patients. And I tell you what, once 1,500 patients start doing what we do on the NGIS and actually appealing decisions, by golly, don't you see a change in behaviour and a rational approach because the law turns around and says, What?

Paul 29:43

Let's be but let's be blunt about this. Illegal immigrants have more rights than patients in Australia.

Felicity 29:48

Correct.

Paul 29:49

Because they have access to appeal mechanisms. Yes. Convicted criminals have more rights than patients in Australia. In fact, you made the and and I and I've got to credit you for it because I wrote about it on Monday. The fact that the PBS website does mention there's no patients category.

SPEAKER_02 30:06

Yeah.

Paul 30:07

So I think you may have missed something here, babes. It's no patients category. Because all these people were licking themselves. Sorry. Sorry, I've got to get away from this.

SPEAKER_01 30:15

You've got to stop saying that it really just you know distresses.

Paul 30:18

You know, they're like cats, right? But but saying, Oh, how great they you know, the great the website redesign is, it's really useful. Well, who's the website for? I mean, surely it's for patients. Isn't that the primary purpose? If you go to the NDIS website, the whole front page is about your rights as a patient. If you go to Medicare, the Medicare website, and PBS is technically part of Medicare, if you go to Medic the Medicare website, you there's more, there's more information there about patient rights than than you get on the PBS website. You might stumble across some stuff about copos, but if you want to know about you know what what the what the PBS was doing 15 years ago, the PBS website is for you. Is for you. If you want to understand what the process for a post-market review is, the PBS website is for you. If you're writing a submission, yeah, it's for you. It's for you. But there's this sort of fairly significant oversight in the absence of any reference to patients. But of course, patients have no rights.

Felicity 31:19

No, we don't.

Paul 31:21

Yeah, have no rights. There's no commitment, there's no charter. As you say, when you walk into an aged care facility, there's a whole description of what your rights are. We have no rights. And the thing is, I I could I I and when I when I spoke to Natasha, I talked about this as being in this is a national interest thing. Like defense, it's a strategic capability. So we can go down the New Zealand path, which can't defend itself or fun medicines.

SPEAKER_01 31:44

But they're gonna give them timely. Well, we'll get to that.

Paul 31:48

We'll get to that. That is well, because we do have crazy wording, the the weekly crazy phrase, and we're gonna point to Farmac on this, but we're as guilty as it as they are. But but I just yeah, I I think patients absolutely have to have rights. And part of the right, part of a patient right has to be a right to agency and a and a right to care.

Felicity 32:13

Yes. Instead of getting a uh writing a letter to a minister, which is then shoved down the line to an ELT to reply to, saying, the minister's asked me to reply and it's and those letters haven't changed since I was reviewing them.

Paul 32:24

I know. Um Medicines Australia. Speaking of change, they have definitely sharpened their language. They've gone from stronger PBS, and unfortunately their billboard is still at the airport, to we need to save the PBS. And I I I believe it's a good change. Uh I think if they'd done it three or four years ago, it would have been a little bit harder, but they've been so committed to the process and supportive of it. I think in a way, the tougher language they've earned the right to be able to say, Well, Minister, we've given you every chance. We gave you the benefit of the doubt. We've given you the benefit of the doubt for four years, and this is where it's got us Delphi surveys to build a consensus where there is absolutely zero consensus based on what I've heard. Uh so surprise, surprise, someone's gonna have to make a decision. So I I I welcome it on that. I I I do hope they've done the underlying preparation, which is the government's probably gonna act very negatively or respond very negatively, because this government is a vengeful god. They don't take criticism well at all, and we've seen that you know, we saw it with 60 day dispensing.

Felicity 33:44

We've seen it with the whole CGT thing.

Paul 33:46

We've seen it with the changes this week that we're legislated this this week. So throw a punch by all means. Throw a punch by all means, but you've got to be prepared to get one back. And I and I hope the work has been done by an industry that is generally dominated by really nice people who who don't don't necessarily do confrontation and conflict all that well, but they need to be prepared for that the gum will come at them at some point.

Felicity 34:15

Yeah, look, um I I I take your view on that and stuff. I there's been a lot of from it from a patient perspective, the the last six to eight weeks and the messaging changes, which have been happening sort of every two weeks, uh, are interesting. So by all means, if this is what you're going with now, then make it clear to us as patients, like what the end game is here again, because we've gone from you know, just wait for the HTR review, welcoming um expanded listing, welcoming this, then welcoming the budget, then not welcoming the budget, then access denied. Now we're on to to save the PBS. So I reflect that back to you saying you you gotta take the community along with you. Natasha's done a great job of trying to build that narrative for you, I think. But you have to make this clearer to patients about what you're doing and why because what you do tend to do is start somewhere and then like leave us in the lurch again. So just be really clear on your communications. Will the system the government push back? Yeah, that's that's the job. As you and I would say, I I would love to be loved, but I'm not the best I can hope for is to be respected. And my job is to take the hit over and over again for patients. That is the job. So I don't care if you're all nice people. I mean you are, but suit up because at the moment patients are missing out. And we actually have some really good ideas on how to fix the system, and not from the usual people that you talk to. That's very important, which is you need people who are not captured by the system, who are not so intrinsically entrenched in it these days. And I find that sad because I know that there's a lot of those groups that think that they are making a difference and making a great contribution to the system, but you're actually enabling it, and you kind of need to let some other people take a swing with the two by four to allow you to have the conversation that is needed.

Paul 36:15

You're not going to fix this system with another discussion about streamlined processes because as I've consistently said, these processes have had the shit streamlined out of them for the past 20 years, and things have got worse. In fact, I don't think patients can afford any more streamlining, to be honest.

SPEAKER_01 36:29

No, we can't.

Paul 36:30

So uh let's let's get ready, let's think about this and let's argue for this about what's in the national interest. Because that's that's my belief. That's my belief. It's it's hard that it's it's whilst whilst we maintain this obsession with price, which is the obvious lever to accelerate access, whilst we refuse to address that and we just refuse to talk about it, the situation's gonna get worse and worse and worse. And you know, my view is that the PBAC operates with within a legal framework, but it's also a vibe. It's a vibe. So if if they're getting the sense that the government's got no money and doesn't really want to spend money on new medicines or health technologies, they respond. Even if it's not intentional, they get the vibe. It's a Dennis Denudo thing.

Felicity 37:21

It is very true. And um, as someone who used to run that area of the department, and every now and then the PBAC would know. I mean, you know me, I was obviously in Deferro's offsetting, you know, anything that it was there was a very strong vibe there. And I think one of the most important things when the committee asked me, do you need us to do X, Y, and Z? And I said, No, that is not your job. Your job is to tell me what medicines I need. And then it is my job to go and have that conversation and to have that fight. Don't don't do this, don't select, don't, you know, that the pricing, it's is this needed? First. Second of all, give me some guidelines on price. Third, leave me to do my job to work with my minister. My minister decides what is his or her priority. My minister decides what we will and won't go forward with and in what time frame. That's important.

Paul 38:16

I just don't think officials would tell on that to back off these days.

Felicity 38:19

Well, I don't think they do. I think it's actually kind of ingrained now in the like you said, if you've been in a system for a long while and everyone comes in, we always use that, you know, the the gorilla example they used to use about why you know why they stopped trying to, or even fireflies with the lid on for all. Everyone just learns. And you've got to keep challenging.

Paul 38:37

And they're lazy because they've learned that they can just hide behind this committee. And the committee doesn't understand that ultimately that's that's going to undermine your legitimacy. This is this is the thing that they don't realise that there you know. My my takeout from the ser from the Tasha series in the Australia, and I know other people have worked with her on it, but she's obviously done all most of the work, the vast majority of the work.

SPEAKER_01 38:56

But yeah, Penny did a lot of things.

Paul 38:58

Yeah, yeah, is that these advisory committees need to understand that they're losing legitimacy. And they're and when I say they're losing legitimacy, the community doesn't trust them. And that's the patient community.

Felicity 39:15

Yeah, and the problem but the problem is the only time we get to articulate that is when a Natasha writes something or when you write something or someone writes something about, you know, delays in access. This is why the legislation change needs to happen, both including patients in Section 101 of the National Health Act, making us prime primary, prima phase. And second of all, we need access to the ART because the moment you allow patients to do something more than send a ministerial, like, you know, I I've sent one in on aged care, and I didn't even get it from the minister. I just get it from some working group who doesn't even sign it. That's how little this minister cares about patients. And if you don't give us power, what why why does the NDIS, why does Services Australia, why does the migration um determinants in different parts of the system in the general government sector understand what their community thinks because they have a right of appeal? And ha being able to write a ministerial to a letter is not a right of appeal. We need that, and I swear you did that, and within six months the list of it.

Paul 40:20

It would completely well, that's just what people don't understand. The problem is not the discount rate or comparative, the problem is the system's architecture, the thing that successive governments have refused to touch, and they refuse to touch it because it's it's you know, they they get to set the rules and umpire them, and so they don't they don't want to change that. And that that to me is the problem, and it's the thing to argue, and as I say, I believe it's a national interest question. Speaking of uh national interest, let's talk about CGM. Oh yeah. I thought Abbott did some great work with their report this way, an actual policy document, which was great. Uh yeah, it was really, really um well constructed. And I think you went to event an event. Did you go to it?

Felicity 41:00

Yeah, look, I I did get to go, which was off because um, and I want to thank Abbott for inviting me because they have been supporting better access in our fight against uh access to CGM being removed from the support at home packages. And we can talk about that later another week. But it was good. Uh they it was very effective because they had the haves and the have nots in the room. Those people who have access to CGM for for type 1 or type 2 diabetes, and those with uh type 2 diabetes who do not. And you also use insulin. And what what is you know, the the report's great, it's got all the things in there that government needs and uh MSEC needs, which is, you know, the the qualities, quality of life you gained, and the disability average life you gained, and the you know, avoidable hospitalizations, all the money that says, you know, if you spend this money, it it it's actually in the long term cheaper for the health system. But um, I'll give Melissa Macintosh uh a shout out because she stood up, these events are non-political. You are not supposed to do politics in this room. Thankfully there was a division. So she just said, Look, I'm not being political, but what I do want to say that I thought it was wrong that the government released its response to the 2024 inquiry on the alternative budget.

Paul 42:19

Yes.

Felicity 42:19

And it got lost in everything. No one knew what was there. And that's wrong because this is actually a really important issue, the entirety of diabetes care, not just what we were there to talk about, which is uh better access to CGM, sorry, continuous glucose monitoring for patients on the NDSS. And I don't think it was interesting talking to patients. And I'm like, well, who have you spoken to and who will speak to? And it's amazing how much local NPs and uh ministers just brush patients off. Like it's so hard within TikTok. Again, people were very respective of uh Melissa McIntosh, who makes time, and I appreciate she's an opposition, but makes time to hear and to listen to people in the community and what's going on. And the reality is that this was a recommendation from 2024. It's been in MSAC since February 2025, and it is going round and round and round. You know, it wasn't rejected, it was deferred, Paul. It was deferred. So it's not like we said no. We just, you know, we need more information. And it's even harder for medical devices to get subsidy in Australia than it is for medicines, and that's really saying something.

Paul 43:38

Well, the truth remains that w type one diabetics only have access to CGM, and it is an amazing technology. Because I I tried it last year. I'm not a diabetic, but I decided I wanted to try it. Uh they only have access to it, funded access to it, because of a bipartisan political commitment.

Felicity 43:56

Yeah, an election commitment.

Paul 43:57

MSAC have never recommended it. No. They didn't recommend it prior to that political commitment.

Felicity 44:03

No, and when you read the public summary documents from their consideration of CGM from like the submissions from February 2025, they again do that whole we do know that we haven't actually ever recommended this for even type one. So we're just not sure.

Paul 44:18

So one of those passive aggressive very passive aggressive.

Felicity 44:21

Like Kim Riot Minister said, if we don't recommend something.

Paul 44:24

Yeah, so we're going to give it to those two three-year-old children. Yeah.

Felicity 44:28

Um yes, there's nothing like a uh an advisory committee that's actually asked to advise.

Paul 44:32

Um they don't like the word advisory. They'd like to be decision-making.

Felicity 44:37

No, it's terrible when a minister says, I want your advice, and so you know, my my favourite moment I was talking about the other week was when remember when PBAC and the department just decided to defer all those submissions because it was a busy agenda, and so they just said we'll put them off till the July or perhaps later, we'll just work it all through. Um I love it. And many thanks to Minister Butler on that one for hear hearing our call on that.

SPEAKER_01 44:59

And he went, uh no, no, no. You're my committee and you will be meeting doing an extra meeting and you will consider all of this stuff.

Paul 45:05

Yeah, well, they weren't independent to refuse that request, were they? No. This is the stupid thing about independence. If they were independent, they could have refused. They obviously could have refused this pressure on oral contraceptives and uh uh women's hormone therapy. So anyway.

Felicity 45:21

Can I just say about that? Did I watching uh some of the question time on Wednesday when uh Senator Pocock raised the issue of the unjust application of the CGT reforms to people who have who are divorced or uh people who have lost their partner, and so you have to transfer the property, and so then it would become subject to all these CTT hits. And bless Minister Gallagher, Minister for Finance, Minister for Women, because Senator Pocott was saying that this will particularly disproportionately affect women. So she started off with a whole, you know, we love women, we've listed these contraceptives and we're gonna be.

Paul 46:13

What else is in there that we don't know about yet?

Felicity 46:15

People don't know and understand because a majority of it can now be done by, you know, delegated legislation at some point. But not having the time to think something through properly, these are the ramifications.

Paul 46:26

Yes. Well, I I I I obviously a lot of these ministers are not across the detail of the of these of this of these tax changes. So it does make you wonder well, what else is going to be revealed? And as as I completely agree with you, we you can't rush this. And it goes to the whole environment we have around health technologies and PBAC in in Australia, where that was a fourth order item legislated in a bill primarily about pharmacy remuneration. It was a badly constructed law rushed.

Felicity 46:57

Maybe the one thing that uh officials and and government could learn from our PBAC processes is look how long thorough, robust deferral actually gets to the bottom of something to get you that better outcome. Perhaps if you spent 18 months reviewing this bill instead of rushing it in two weeks, imagine if a medicine was considered this quickly. Well, that's right.

Paul 47:18

But you're you're so right when you're saying people really struggle with this because they don't really understand the importance of the system's architecture, that if you did change the dynamic and the obligations so that it wasn't like price and and and I would I would characterize the process as like pushing something through a sieve. You know, that the longer it takes, the better it is almost, you know, and and that that to me is is the issue where if you change the obligations on these committees, they would have to completely change their behaviour. Uh it might take some time because I think there are cultural issues, but but that to me would be completely the change to make. You've got to change the architecture.

Felicity 48:02

Yeah. And so as someone who's, you know, why why do I support CGM so strongly? As you know, I have a mother who now is in a residential aged care facility because she lost her leg to diabetes because of poorly controlled diabetes and not having things like CGM. So it's really important when we we have to be front and center with governments who are so busy focused on the CGT, NGIS, um batteries and climate change. Why are you focusing on that? Could you understand how much patients are suffering and so much of what patients need is not available in an urgent care clinic and it's not available in a hospital setting. What we need in primary care and some of the most basic, empowering, health literate things that patients can do for themselves, you're precluding us access to.

Paul 48:52

Yeah. So speaking of access, let's get to the dumb phrase of the week.

SPEAKER_02 48:59

Oh yeah.

Paul 49:00

Timely access. Now I did get some uh, you know, we did value of innovation last week. Someone actually sent me an email, a communications person, and said, I apologize because we are using the term of innovation. So it's a trigger warning.

Felicity 49:14

Well, I did notice that the PBSC used it in their minutes on Friday. That's the definition. Oh yes, hi added.

Paul 49:22

Yes, yeah, capital H, capital A, capital T, capital V. So why are we redefining them? Um let's talk about timely access because our friends at Farmac in New Zealand have released their new values. And there's four pillars to the values, and one of them is timely access.

Felicity 49:42

Now so if that's a four-legged stool, that stool is falling over.

Paul 49:45

Now, how do we know that there are problems with medicines access in New Zealand? Because it's a day ending with why. I mean, you saw the Medicines New Zealand report they did with ICUVIA this week. Graham did the report and issued it. It's actually a really interesting report. They are such an outline globally. We get 25% of medicines, they get 5%. And it takes six years. So timely, timely is of course one of those words because we use it in Australia as well. It can mean virtually anything.

Felicity 50:22

Well, we say timely and affordable access at a at a price the system and patients can afford.

Paul 50:27

Yeah. So they're they're all just such passive subjective terms, all of them.

Felicity 50:34

Yes.

Paul 50:35

All of them. And they can be interpreted any way. Which, of course, if you if if you were actually if ac if if the speed of access was an issue, you'd call it fast access. We're committed to fast access. But of course, neither of those systems are. And so we use these obtuse, subjective, ill-defined terms that enables anyone to think whatever they like. Like value of innovation. Well, I value it according to what matters to me. And timely access, well, it's timely based on what we consider to be timely. And so the nomenclature, this is uh the whole part of the this institutional framework which has evolved is the complete abuse of the English language.

Felicity 51:14

Yes. And love heart emojis. But yes, it is it far out. Just because it says it doesn't mean it's true. And you know, one of the things we're when we were at that event in New Zealand last year, and one of the things that I found really distressing as a patient advocate in Australia was everyone in New Zealand can't go, you know, but we could be in Australia and it'd be so much better. I'm like, you need to stop pumping us.

Paul 51:42

Yeah, I said I said you need to get a bit more ambitious, Scott.

Felicity 51:44

We're we're really not, and also what you don't understand is New Zealanders, is New Zealand is weaponized against us as Australians, which is you know, you could be in New Zealand where you don't get this at all, so just be grateful that you're not in New Zealand. And I'm like, Well, I'm not gonna say that about New Zealand, there's some lovely aspects about it. Medicine access, obviously, not one of them, but that's that's not the yardstick I want to be measured by.

Paul 52:09

No, they shouldn't be. They need to raise their ambitions, and you know, I said that to them. That and and and the reality is that there are New Zealanders in Australia who relocate to Australia.

Felicity 52:19

Oh yeah, like the former Prime Minister.

Paul 52:22

Yeah.

Felicity 52:23

But I know what you're talking about is people who actually relocate here for their medicines access.

SPEAKER_01 52:28

I'm not convinced she hasn't done that, by the way, anyway.

Paul 52:31

Yeah, so that that that to me is deeply problematic. So the the timely access is like we need to ban, we need to have a list of phrases, so Orwellian Newspeak phrases. You know, so so Animal Pharmacy is my favorite, probably my favorite read ever. But he is just such a brilliant writer. But Newspeak is and the Ministry of Truth, another one of his great great works, um in 1984. But the language, the nomenclature, is just such an abuse of the English language and we need to call it.

unknown 53:11

Yeah.

Paul 53:11

And timely access, the fact that Pharmac can actually claim that as one of its fet like core principles, its values, like Did anyone actually say I I think that's a stretch?

Felicity 53:27

Is is that an ambition target? Like, you know, the uh AEC has a they want 98% of people in Australia who are eligible for enrollment, enrollment. And they admit that it's a stretch target because they don't think they can ever reach it, but they mustn't stop trying. Is this just a whole league? If we put the words in, do you think we we're focusing on it now? So we just leave us alone? I'm not sure.

Paul 53:46

Yeah, so if we say it, if we assert it, then that we'll get measured. I mean, that's that's the thing. You can measure them against this now. But it's it's obviously an organization that doesn't take value seriously. And I mean, I suppose, as you say, we have we don't have timely access per se. We have timely and affordable access and again it's ridiculously complicated.

Felicity 54:10

It used to be a lot more timely than it is, and you know, it's we always that uh in Australia uh the the industry literally, in thinking they would get something faster, made everything so much slower for the majority of patients. And speaking of that, I want to talk about the outcomes from PBSC last week. Oh yes, not just high added therapeutic value being defined for us all, good to know. But I want to I want to call out the hoodwinking of patients who were waiting for the outcome on adolemimab and fliximab for pediatric treatment of moderate to severe um Corinne's disease. And I know you originally looked at it and said to me, Oh, there's a typo.

Paul 54:52

Yes, I've missed one.

Felicity 54:53

They've missed one. And I read it and said, No, there's not a typo. And this this is the system at its worst, and this is this is the game playing that can go on. So this is something that's been considered by the PBSE since 2023. Senator Pocock has asked uh a swathe of questions on uh the the trauma that children are being put through to access biologics for moderate to severe Crohn's disease and making the go through some very toxic drugs, methotrexate, salizopyrene, lufalinomide, before they're allowed to access it. And we watched a, and you know, it's the jazz hands performance of officials at the table to say, yeah, no, we take it really seriously, but yeah, but no but, yeah, we're definitely looking at this soon. Yeah, we've been talking to people, yeah, but no, but we watched it suddenly appear at the last minute, then before the February estimates on an agenda for consideration at the March PBAC meeting. We then got an outcome at the March PBAC meeting that said that we were of a mind to actually ask the PBAC itself again. So the PBAC recommended that it should ask itself again about these drugs. I agreed it definitely should seriously think about it. And then patients got excited last Friday because they thought they had a recommendation. And they don't. They have a recommendation for inflixiumab, and the recommendation is entirely silent on adulumab. And the language is about price, because they have highlighted the need for a higher weighted dosing in children compared to age, because you know, need a stronger, it's you need sometimes more drug to get a therapeutic response. But they've been very clear to say that they think that even having to do that inflixiumab, which is about a you know, a third of the price of adolymumab on the PBS, is cost effective at that additional. And you know what that is. That's a weaponization to say we're going to give you this part, which is in hospital. Uh so you know if you need inflict inflixiumab, it's an infusion treatment. Yeah, it's not subconscious. It's not self-injectable. Um the RNA will be able to do cancer self-injectables treatment, but we'll make babies and children go into hospital and do an infusion. And this is the system at its worst. This is a system that has lied surreptitiously by using nomenclature and language to make patients think that they were going to get an outcome that benefit all children. Some children will need infliction map. A lot of children will be fine on at a limbimab. But this recommendation is silent on an at a limbimab for a reason, as in they've gone for inflictionab, they don't even discuss it. But but the way they presented it, this is what we considered and we recommended it. They didn't even have the courtesy to let those mums who have been advocating to this to say to be explicit, because apparently, isn't it all about the consumer? And this is so that consumers can understand what's happening. They didn't say, by the way, this doesn't include adolemmaids coming back. They were silent.

Paul 57:46

Deliberately. Isn't it them just having a little hissy fit because they've been drag kicking and screaming to it?

Felicity 57:51

Yeah.

Paul 57:52

So they do the they do the absolute minimum.

Felicity 57:55

But it's not just that, it's surprising.

Paul 57:57

Yeah, because it's cheaper.

Felicity 57:58

It's cheaper.

Paul 57:59

And less convenient for patients.

Felicity 58:00

Yes. And it's and it's cheaper. So it's just let's do it again, it's cheaper. It's it's about like a it's a third of the price.

Paul 58:07

Yeah.

Felicity 58:08

And there's a reason for that.

Paul 58:09

But I I I you know it's the the classic passive aggressive outcome. Where we're doing this because we have to do it. We're being so we're gonna do the absolute minimum. Yeah, and without considering the needs of actual families and children.

Felicity 58:24

Yeah, and the and the children that and the the sponsors of Adelimimab, which I understand there are a few, who will then be asked to, you know, front up and and will they agree to the prices? And and you we all know in the pricing infrastructure that is in place right now, that has all sorts of ramifications for the sponsors of those brands of Adalimimab. So what what on earth is gonna happen here? But I just it's just typical though. But it really upset me because as you know it upset me. The patients thought they had a victory and finally it was over. Now all they had to do was wait for it to be implemented. But they thought they were getting Adalimimab as well. And you know, I don't appreciate having to explain that.

SPEAKER_02 59:08

Yeah.

Felicity 59:09

You know, have have the courage of your convictions. If you're gonna be this mean and nasty, then put it in writing so that patients understand it. Don't let them live with false hope for three or four days until some person comes in and explains what that means.

Paul 59:21

Well it's a little hissy fit. But this is the app. We don't like the pressure because I know they don't. They they they're constantly moaning about the criticism they get. Well, call me crazy, but maybe maybe our response to criticism is actually to listen to it. I mean, that's I mean, I know it's left field. I know. Left field that maybe some of the criticism is well directed. They don't like the criticism, they don't like that this was raised at Senate estimates, they don't like the fact that the patient was speaking politically, i.e. to politicians, I know, about the impact on her children. And it's a terrible stor. It is a terrible story.

Felicity 59:59

And they don't like that, you know, two senators caught them out on their testimony.

Paul 1:00:04

Yeah, and so we're gonna do we're gonna we're gonna address the political problem and do the absolute minimum that we have to do. We're not gonna actually think about the human consideration here. We're gonna do the absolute minimum of what we have to do. And I just think, well, further evidence.

Felicity 1:00:22

I think that that to me was the you know what? Sometimes you can go too far. I for this one for me is the one where you've actually gone too far. So if you think about all the media that's come out, the Natasha Robinson stuff over the the last four or five days, and you're trying to say that no, we're not actually that bad. Sometimes you let the air out of the tar a bit to go, look, look what we did. We just did something wonderful. No, you doubled down.

Paul 1:00:46

You know what? It's an in it's an i intrinsically political outcome.

SPEAKER_01 1:00:51

And but not political in the way that people think.

Paul 1:00:54

No, no.

SPEAKER_01 1:00:55

So all right. Well, um, good chat, Felicity.

Paul 1:01:01

Congratulations to Natasha again.

Felicity 1:01:03

Yeah. I just want to put one final shout out.

Paul 1:01:06

Yes.

Felicity 1:01:06

I want to I notice that you advertise it anyway, but uh anyone who's thinking of nominating patients, clinicians, etc., for the patients Australia.

Paul 1:01:14

Oh yes, yeah.

Felicity 1:01:15

Uh nominations close this Sunday. So if there's someone that you have engagement with that you really think needs to be recognized, please do, because it's those people right now who are the ones that will fight and make the system better.

Paul 1:01:27

Yeah, well, well said. I am uh gonna do my best not to order anything from Amazon today.

Felicity 1:01:33

We know that's not gonna happen.

Paul 1:01:34

I can't make any promises. Because now they're sending me emails about you might be interested in this. So yes, I do need another high-speed USB-C cable.

SPEAKER_01 1:01:43

Your listeners are starting to understand how to get into your side.

Paul 1:01:46

I definitely I definitely do need one of those. Uh thanks, Felicity. I hope everyone has a has a good weekend and we'll be back next week. Keep the ideas coming about crazy terms of the week.

SPEAKER_02 1:01:56

Definitely.

Paul 1:01:57

Uh, because Farmac is obviously a great source, so is our own system, but the audience is a fantastic source too. Thanks, Felicity.

SPEAKER_01 1:02:05

Thanks, Paul.