The 'Dispatched' Week in Review'- 27 March

A powerful patient story was overshadowed by a mindset that expects patients to simplify their needs and accept delays. Some proposed reforms risk entrenching these problems, while claims of having a 'world-class system' gaslight patients and seek to shut down scrutiny. This is about power. Institutions hold it, and patients are expected to adapt, meaning they must not relent in their push for change.

Transcript

Paul 0:08

Hello and welcome to the Dispatched Podcast Week in Review. It's Friday, the 27th of March. My name is Paul Cross. I'm delighted to be joined by Felicity McNeil, PSM, Chair of Better Access Australia. Hi Felicity.

Speaker 3 0:21

Hi, Paul.

Paul 0:22

And for those of you tuning in for the first time, we talk a lot of things about healthcare and health policy. And we have a lot to talk about today. Felicity, did you walk here or did uh get a special car to drive you here?

Felicity 0:37

Tried to bumble lift with the senator. No.

Paul 0:41

Well, uh I went to an event at Parliament House yesterday, and at Parliament House it was like Central Station. There were so many events. It's turned into a sort of event venue. It's actually very good. I think the fact they host events there is really good. But I went to an event hosted by Novartis about early breast cancer. And it was really good. It was based on a report they put together about obviously there was an element of access to treatment, but there was also a lot about the cost, the secondary consequences for families. And there was a a patient there, a young mother. She shared her her personal experiences of having been diagnosed at 38 and having some suspicions and having to pay for her own mammogram because she didn't qualify for screening. And then having to undergo treatment and the impact that had on her family, the financial and emotional impact. And it was really, really powerful. And I thanked her afterwards because it can't be easy to share that story. And the assistant health minister Rebecca White spoke, and she was very respectful and courteous and relayed experience of a friend. But I don't know, it was derone. And I was it was well to say I was disappointed. It was classic institutional response. I mean how can I characterize it? I've written about it this morning along the lines of apparently the Ayatollahs to blame. The Iranian mullahs are to blame for that the government.

Felicity 2:47

Well they're anti-women, so that makes perfect sense at why you'd be offensive at a women's event, yes.

Paul 2:54

And that the proper response of patients is to moderate their demands, don't disagree with each other, present a you know and it's just that we've heard it all before.

Felicity 3:04

Sorry, does Senator O'Neill understand that she works in the Australian Parliament where everyone speaks with one voice and no one argues? Right, okay.

Paul 3:12

Well, as you would appreciate, it wasn't the first time this week that my inner age and my my blood was boiling, and I just thought, how dare you? We we've just and I the how I've characterised it this morning is hang on um, hang on up. Senator, you you are going to be picked up later today, driven to the airport in a government-funded chauffeur expensive car. You will sit at the pointy end of the plane, if you're flying, that is, you'll sit at the point end of the plane, having gone into the chairman's lounge. You'll then be greeted at your destination at a special point by a driver driver who's got an allocated car park which taxpayers fund. It's actually a designated area for comp cars. The driver will carry your bag, they will deliver you home or to your destination. If it's the home, you have a taxpayer-funded card with a fuel card. And you dare speak down to this patient who talked about the economic cost of having to access treatment, including car parking, driving, related childcare. I was absolutely mortified by it.

Felicity 4:19

I think you wrote in your article, Do as I say, not as I do. So uh, you know, it's a bit like watching this week in Parliament. Don't panic by, do panic by it. We're all upset, not all upset. Like you've rightfully pointed out, you know, someone tried to say let's do parliament on Zoom. Well, let's not be ridiculous. Um we've seen what happens when Parliament's on Zoom. It's it's suboptimal. But why on earth they're not all carpooling four MPs to a com car is beyond me. Yes. Um, you know, do as we say, try not to make waste of it. You know, do a do a you know how on Uber you can assign your I'll share pool, so three of us will get this Uber and we'll all go together.

Paul 4:57

Maybe maybe For those who don't know, on a Thursday afternoon when they're all heading to the airport, there is literally a hundred of these white com cars waiting around the exits of Parliament House, the Ministerial, the Reps and the Senate, to take those people to the airport.

Felicity 5:13

Individually to the airport.

Paul 5:14

Individually.

Felicity 5:15

And then they come back and get another one individually. Occasionally you get some people who go, oh, let's share. We can talk on the way. Awesome.

Speaker 3 5:21

Yeah.

Felicity 5:21

Um but that's not because of uh trying to save money for the taxpayer. But you know, this is why we've still got this problem with them using, you know, tax-free dollars to, you know, buy their own investment properties and uh not have to pay the money back and all those kind of things. So the the large S. I I'm with you. The look, we see it a lot. I remember being on what was it, uh a uh a conference with you a few years back online where um I'll name him, uh the now assistant treasurer Andrew Lee told patients that it's very important for you to be nice to us and to understand how much pressure we're under and to try and really, you know, align what you want with what we need. Yes.

Paul 6:04

And it's all about us.

Felicity 6:05

Don't, you know, I'm I'm a very busy man as a backbencher not doing anything in opposition. So please, please, you know, r respect my staff, respect me. We'll know it's time to respect the people that elected you. And I think a lot of, you know, we see the anger and that the voting patterns in South Australia over the weekend to the the protest vote against all parties with respect to one nation. So one nation didn't just get um takeaway from the Liberal Party or from the Nationals, it took from the Greens, it took from the Labour. People called it a protest vote, which is we're really sick of the way you're treating us. Um and that's federal and state politics combining. It's a very long-winded way of me saying that what you listened to and observed is the danger of a a government that is so so comfortable in its mandate and s its majority, that it it breeds an arrogance that you could even think that was appropriate. So, as you said, we all have bad days, we've all done something like that. But for that kind of language to come out, and you've articulated to me a lot more that was actually said, that has to be something that is going through the party on a regular basis, your ability to push back, your ability to not have to consider people. You can consider those that you want to, but you can really ignore everybody else because um you you have such a powerful majority, as opposed to the great thing when the the parliament is on a knife's edge of you know, balance of power, both in the Senate and in the House, is that representatives have to start being representative and listening to the people in the community. So I know you want to go on and talk about how we shouldn't be surprised that a senator says this when the health institution also replicates it. So which was the chicken and which was the egg? Is she just actually reflecting our federal health system? Or is she reflecting a broader philosophical conversation that's going on in the government this week? And we know it's all been about don't don't blame the Prime Minister, blame the Ayatollah for everything that's going wrong with our economy and our our fuel supplies. But for you to be comfortable saying that in a health context, I I think you know the things you want to talk about further today, which is we have a health system and a health assessment system that very much says, you know, just just back off, guys.

Paul 8:35

Back off. Yes, so our institutional frameworks in healthcare deny people agency. It's a system of rationing where the system knows best. The institution knows best. So not only do you just have to accept our decisions, we don't even want you to advocate for what you want. It's very typical of Australia, though, I think, which is that government knows best. And we we caught up with someone this week and we were talking about how America is a country of negotiators, and many Australians struggle with that because the person we we caught up with, he and I were in the US at the same time, pretty much working on the same thing, but on different sides. And the negoti the culture of negotiation, everything is a negotiation in the US, and there's no discomfort or shame about it. It's how even their judicial system is a negotiation. I think there's a discomfort about it in Australia. So what we got yesterday was uh a politician acting in the way our institutional frameworks do. You just do what we want, don't make life uncomfortable for us. Essentially, she was saying to these patients, you have to minimize your ass before you even start talking to us. And I went up to someone afterwards who I've got a lot of respect for, was at the BCNA, and said, Don't you dare compromise. Don't compromise. She is telling you that you've got to concede all of your things before they even acknowledge that there's a problem. I said, That is absolutely ridiculous. You've got to treat it like a negotiation, and you are not in a negotiation yet. So you've got to get them to acknowledge that there's a problem, and that they're actually going to listen to you and talk to you. But we got the Ayatollah, and I always think back to The Simpsons, you know, when Homer had the Aetola Asahola t-shirt, and Marge wanted to throw it out, and Homer said, But it works for every Ayotolla Marge. And and the fact that we got the Iranian, I mean, we've heard some excuses over the years about not funding health technologies. I never thought I'd hear the AyToller.

Felicity 10:41

Well, you know, yay for inventive, you know, platforms. Uh look, it it it is very, very frustrating. You talked about how busy it was up at uh Parliament. Well, it's going to be, these are the last two sitting weeks before the budget, and a lot of people are up there genuinely thinking that they are influencing and changing a budget process right now, particularly in health. Um, we we peddle a lot of hope in people showing up this week and next week to say if we put something here in front of all these parliamentarians as we go through these final few weeks, you know, this this will swing the budget ask that we've had, this this will make it make an impact. Um I don't want to take hope away from people. There might be one or two that maybe do get that change. Uh, but it's also that hard thing that you're trying to encourage BCNA uh to contemplate. It is not a one-off submission and a one-off meeting to get the health system to move in particular is a constant barrage of making a government feel uncomfortable and recognizing there is a problem. I think as you were talking about the the negotiation and comfort with it. Um, look, you know, I hate having to go to Thailand and barter at the market. Sometimes I just want to pay a price and move on. I spend too much time negotiating. But I think the problem we have with our arrogance, you know, we have a universal health system and we have, you know, the world's best health system, and you know, shame on America and shame on everybody else. But the arrogance and the threatening that comes with that, which is how dare you ask. We give you universal health care. We're giving you bulk bill GPs. Could you stop asking for things, please? Because this is we have the world's best health system, so you will take what you're down will given. That's actually the way our system behaves.

Paul 12:38

That was the message.

Felicity 12:39

But it's actually how it happens all the time.

Paul 12:41

Yeah, patients have to fight other patients.

Felicity 12:43

Yeah, so it's like I was reading the the PBAC agenda, and there is an item on there for spinal muscular atrophy. The symptomatics SMA in patients 2 to 19 years of age with at least two defined symptoms of SMA in type 1, 2, or 3A, where those symptoms were prior to three years of age. Now, as someone who's been told to bugger off on uh newborn screening for Pompeii, because we would actually de diagnose the disease at birth for a version of the disease that wasn't infantile, that might that symptoms might appear between the ages of two and nineteen years of age. This this item can only be on there and can only be given effect because we have newborn blood spot screening for SMA, which diagnoses all forms of the disease at birth. It doesn't just do the severe type 4, it does all of them. And we all accept that and think it's wonderful. I have an MSAC and an MSAC chair who proudly tell us that for Pompeii, that's just information no one should have. That's just information that's too threatening. And yet this could not happen. This this listing could not even be contemplated because they're it without the diagnosis. Because the diagnosis is what allows you to know that a symptom that just looks like some other developmental delay that might make you eligible for the NDIS is actually a symptom related to spinal muscular atrophy. So I look at that and think, this is great. Pushing, fighting to get that listing, and we have to remember that again, MSAC did not want the diagnosis of SMA in newborns because it was costly, because more people would get treatment, because it was cheaper to actually not have a child than to actually treat a child. Yeah.

Paul 14:38

So how how that entire committee wasn't sacked on the spot for that recommendation?

Felicity 14:43

Yeah, well, that goes to leadership, doesn't it, and in government, and it's not there. And so when I looked at your papers from BCNA, which is you know early diagnosis. Without diagnosis, there is no treatment. And you talk about the journey of one particular patient who's paying for their own diagnoses. You know, for Pompeii, you you can't even really pay for it. So I I really I guess I I read the report and what everyone's trying to achieve and how important it is to push that forward. And I'm really glad that you know spoke to them and said you've you've got to keep fighting here because the system just wears you down. It uses its processes and its self-righteousness to say, patients, you you just back off. You did this. And by the way, they beguile and betwix the industry, so the individual suppliers who have to start who have to start playing the game. So they start going, yes, we'll be part of this, yes, we'll agree to this next process, yes, we will focus on the process, not the outcome or the patient, because that's what you tell us from a commercial point of view, is what we have to do to get something through the system. And I just I I hope that I think what Senator O'Neill, and I'll keep saying her name, Senator O'Neill said yesterday, is actually called to account by someone other than you and me because it's a bit like, and I know you want to talk about uh some of the listings that are going on and statements made by the the minister in the parliament this week. The man admitted three years ago that people were dying on his watch because of the failed HTA system in MSAC, and not one person other than you or I took him to task on that. Everyone just let it go through the weeds because, well, we've just got to cry and keep working through the system and it relies on patience to actually stand up and like you said, tell their stories. I mean, as someone who has to get chill mums whose children have died to do media to get a a government to try and listen, who then still just literally cast them aside as if that has no impact or measure, it's really important.

Paul 16:58

We're certainly going to talk about Mark Butler and the concession he made in 2023 and how it relates to something he said yesterday. I just want to add that, you know, in some ways, I'm glad Senator O'Neill said the quiet bit out loud.

Speaker 3 17:11

Yeah.

Paul 17:12

I'm glad she said it. I was enraged. I don't know how many other people in that room were enraged, but I tried to enrage them afterwards. I tried to get around to as many people as possible and say that is absolutely appalling, what she said. To look at that patient directly in the eye and say, you know, you've got to make it easy for me. That was the message between those. You know, I've just been in Poland on a defence delegation.

Speaker 3 17:35

Baby.

Paul 17:36

And I had to speak to the Ukrainian defense minister, and she was dressed impeccably. That's what she said. Because she's normally wearing fatigues, and they're spending 60% of their budget on defense. Yeah, because they're at war. We are not at war. We are not at war. Okay, so it's a ridiculous comparison. Yes, we have to spend more on defense. That just makes sense. But we also have to support these people, we have to give them agency. So, in some ways, I'm glad she said it. Uh I'm I'm I'm glad people had an opportunity to hear it. I don't want to take away from the event, and I don't want to take away from that patient story. But her experience triggered the truth, some truth telling about our system, and I hope we we we can use that going forward because I'm not going to be silenced about it, and I don't think anyone should be silenced about it. And I understand that's caused some caused some it's ruffled a few feathers this morning, and so it should. So it should, because it is do as I say, not as I do. As all these people get their chauffeur-driven cars, they're not worrying about the fuel price.

Felicity 18:35

No, they don't have to pay, you know, something.

Paul 18:37

The BMW EVs and everything the government spent tens of millions of dollars on to buy for these comp cars. I I I I I hope it does cause some discomfort and an opportunity to reflect. Let's talk about because you raised it in question time yesterday. At the end, it was the final question in question time, Dorothy Dixon. For those of you don't know, ministers that it's a very formal process. I presume Labour handled it the way all governments handle it, they have tactical meetings and ministers submit questions. And I presume Mark Butler's office submitted a question about blood cancer treatments. And he got up and he talked about a couple of J and J products and a Pfizer product. And he said the J and J product was listed first line late last year. Five years after it was registered for it. Two years after it was first rejected. He talked about a Pfizer product that sounds like it's going to be listed next week, I presume. Over two years. And he talked about pending agreement with states and territories on the car T therapy that was the subject of the interview in May 2023, where he said, Yeah, I have to acknowledge the system is responsible for preventable deaths. So I don't this is implied criticism of him, obviously. But I don't want to focus on that. I want to focus on the fact one, he felt comfortable saying that.

Felicity 20:17

Back then.

Paul 20:19

Well, he was Neil Mitchell kind of forced him to admit it. And he hasn't said it since. And the failure to say it since is a confession because he knows the power of it.

Felicity 20:29

Yeah, well, I think the fact that you're saying that Neil had to coerce it out of him, he wouldn't let him go, it was great journalism. He would not let him go until he had a big thing.

Paul 20:36

He he's an old hand, you know. You and I grew up with him effectively. He's been around for that long. And to me So we often hear the figure 466 days. Well, none of these are gonna be funded. Well, two of them aren't even funded yet, and one was funded in something like 1200 days or 1500 days. So 466 days, but to me, this is an indicator of how the system has got a lot worse, how quickly it's deteriorated. And I wrote early this week that this has all happened during the HTA review. So if you went to a market access person or more like their general manager and said, Would you prefer the system in 2021 compared to 2026? They would obviously say yes. And in fact, at the start of the HTA review, I said, Well, the best thing you can hope for is status quo. And that's that's we are now well past a 2021 status quo. And the July PBAC agenda came out this week, and there are six submissions of companies seeking to seeking revisions. Now, we are now in the ridiculous situation where I think you're better off getting a rejection in some cases than a recommendation.

Felicity 21:55

What's your basis of that?

Paul 21:58

Because if you get a rejection. You can get a quick pathway back.

Felicity 22:02

An early re-entry. An early reentry, yeah. If you're designated.

Paul 22:05

Yeah, if you're designated, right. Whereas if you get a recommendation, you've got to go away and go through all of the process of informing the institution that I'm sorry, we can't we can't accept this.

Felicity 22:17

Yeah, I think there's been a big change. I remember you and I have always had uh differences of opinion on what is a conditional recommendation.

Paul 22:26

Well mine's the one that's consistent with the legal obligation.

Felicity 22:31

I don't think I As someone who is still in court, I don't think I have any problems with my legal interpretations of things. Thank you. Um But what I the reasoning for them is not about how you interpret what a conditional recommendation is versus a recommendation that's not consistent with what I see them differently. A company asks for something and they get a recommendation that is not consistent with what they asked for. Right, has different terms. And one of the reasons there was quite a strong interest in that in the early between 2011 to 2015, when you think about it, we were you know had prioritizations, we had offset policies, but it was to stop submission channel, which is if we can see this and it's important, we can tell you up front what would we we we recommend, you know, the the committee's recommending it here and now based on this. I know that's not what you asked for, but here you go. Um and that was then a point of negotiation. And it was in the good old days where PBSC was a recommendation and advice, and the department would actually work within some of those parameters and actually come to a final agreement. It was not usually exactly what the PBSC had put forward. Sometimes it was, sometimes it wasn't. Everyone understood the gray and that it was advisory and we had some leeway to do things. Ever since uh the 2018 and the pricing pathways and the absolutism and the codification to be able to charge a fee for even just showing up to a meeting, quite literally, or planning to schedule a meeting, the system has artificially conveyed the absolutism of PBOC recommendations. And so it doesn't become a tool with which to finalise a negotiation and expedital listing. It becomes a source of absolutism, prioritization of where you sit from A to D. And if you're at category D, and by the time you get to the doorstep and you say you can't do this, they go, Well, you know, that's PBOC. They said, you know, 100% rebates and you know, population of only 2% above actually our numbers, not your numbers. And if you don't like it, you've got to go back. Now that is also where the system is going beyond its power. But the interlocutors are accepting that and going, well, that's the way we have to do it. So the only other time we see a change on that is when Mark Butler intervenes. And, you know, it's I've been reflecting on his women's health stuff, and it's great. He listed medicines that were off-patent for over 20 years to do that catch-up, and that's fantastic. But most of the women's health reforms have actually been in programs that don't require HDA assessment, the endometriosis, clinics, etc. He can shove money into something, and no, you know, expert advisory committee, independent, can tell him what to do. So I look at what's happening these days and say, how is something being used? And if you go back to the source of power and you, you know, and you want to talk about what the act says, I can see why you would say it's better to get a rejection. Because unless you're a category A for the pathway of quick negotiation, can't be done, might no, you don't agree with your risk share arrangement or this, then you're going to get, you might get early re-entry, even if you are recommended. But if your category D is sitting for nine, twelve months and the time is ticking. But I think it's again when we have processes that are trying to achieve something, and then the objective of that process is actually changed, where where is the call out on that? And that's again not picked up in the HTR reviews or anything like that. That's a principles-based issue that no one's calling out saying, I'm sorry, the department, that the delegate has complete, in fact, it's actually ultra virus to turn around and say, if I was in court and they said, Well, Ms. McNeil, this was recommended with 100% rebate on this and this patient population. Um, what did you or did you not give consideration to? If I said, well, I couldn't do anything because the PBAC told me that, so I sent it back, I would actually be found deficient in my execution of admin law. The court would find me deficient because that is actually not what you're supposed to do. And so what we've got into now is this process of using that as absolutism. And no one is challenging the department and the minister on saying, mate, it's either advisory or not. If you actually want to do it, then you might as well set up Farmac. If that's actually what you really believe, that if PBAC says 100% rebate and only cost minimized, then why are you even bothering being part of the system?

Paul 27:20

It's a really good point. Really good point that clinical advice, which was regularly set aside, has become religious dogma. And people need to think about this, and we can go forward to the issue of technical imports. Comparators, as you know, are something that triggers in me an inner rage and discount rates. And I want people to think about this in an institutional framework that treats HDI advisory committees, PBAC in particular, like a papal conclave. How is it gonna work? So what we're getting is new definitions and wording on these things. But people everyone needs to go back to the response of the PBAC to the requested advice on the discount rate, and even the the the response to the HTA review final report of the HTA advisory committee chairs, these things are really important because we live in an environment now where the advice of these committees is considered virtually absolute. I mean, you know, I worked for a minister who ignored it constantly.

Felicity 28:43

You wrote about it this week.

Paul 28:44

Yeah. So how is it gonna work? So what did what did PBAC say on the discount rate? Minister, we don't think you should reduce it. This this is but Greek this was advice to Greek Hunt, by the way. This is how long ago it is. But I would recommend people go back and say it. See it, read it. Minister, we don't think you should reduce the discount rate. They basically disregarded all of the industry's arguments. They then said, but if you do want to reduce the discount rate, don't reduce it very much. Reduce it for a small number of technologies like vaccines and gene therapies. Oh, by the way, if you do reduce it, we're just gonna make adjustments to all the other technical inputs to make sure it has no net effect. So in a world where these advisory committees are considered Well their advice is considered absolute. Even if the government decides to make some changes around those things, they're just gonna do workarounds. They're not gonna do it. And we know that this is how it works, because look at what happened to the shadow pricing clause on comparators in 2017. It was just ignored.

Speaker 3 30:03

Yes.

Paul 30:03

These the institution is so arrogant that it just ignores its minister.

Felicity 30:10

So do I recall correctly that you were saying that one of the solutions being put forward is codifying the PBSC guidelines?

Paul 30:17

Yeah, well, that's that's that's a podium finish for dumb ideas.

Felicity 30:21

Yeah, and I want to explain why it's a dumb idea, because like I said, at the moment, what is going on in the system doesn't have a legal basis. We only have to look at what has happened with the codification of the pricing pathways into the cost recovery regulations that says you must put a submission, you know, you must notify before you do this. And if you don't notify, you can't go to the next stage. And if you don't do this, you can't do that, so we can price everything. We literally disempowered patients and said, if PBSC decides that you are category A, you get expedited. If they decide you're not in your category D, then you can just sit and wait. We codified away the flexibility of the system. Now I know when it first came in, people all laughed that a category C was getting faster than a category A because then Minister Hunt was starting to intervene a bit, going, whoops, that's not kind of what I anticipated. So codification further disempowers patients. We get told where we sit in the system, and it's it's so regimented. If you codify the PBAC guidelines, they're not going to be look at them right now. There is no must. There is no under law you must do this. It's what PBAC would like. And the number of times you'll read a PBAC outcome or a public summary document, they'll go, Well, we asked for this particular modelling and the company didn't do it, so we're going to whinge about it for four pages, but we've still had to recommend it. So there is no space. If you codify, if that is what you think is your solution, is to give greater legal power to these things. If you want to make them something, I would, you know, they wouldn't become a disallowable instrument, they'd be a notifiable instrument. You know, look at the problems that we are having in aged care reform right now with access to dose administration aids and CGM for people for the new support at home packages versus aged care packages, because the department is not properly administering delegated legislation. If you if you give those powers over, it's they're not going to be used the way you think. No, it's not because you think you're smarter than the system. And the system says the best thing that can ever happen to us is when you put it into law. When you codify it, I eliminate discretion and you all just have to, you know, deal with it. And with your points about the comparator, I I always get frustrated on these issues, like the discount rates, or all the various um thinking that a technical input is a solution or codifying a technical input in the the legislation or something to, you know, PBSC must consider this or do consider that. You're all going to a point of you you're actually playing that game. Yes. So my issue has always been, and it will continue to be since we we put this forward in 2020, is that if government simply said, and I know everyone else wants 60, but I'll stick with what we always ask for, we want 100 days from ART registration to an outcome of subsidization for medicines, devices, tests, everything. If you set that as the gold standard parameter, this is how our HTA system or our subsidy financing system works, let's not pretend it's anything, it's just financing system, then the whole system has to flip on its head. And it's irrelevant what comparator you use, it's irrelevant what your discount rate is. What becomes the principal issue is how do I make that available in that period of time. And post-listing, what do I have to do to consider that that continues to be value for money? Because what we have empowered in the system right now is we will go to the nth degree to find a nuance that justifies not listing because we just want the cheaper price. And I think you know you pointed out last week on the GLP ones. Please don't list them because they're at prices we might have to pay higher prices later. Goodness gracious me.

Paul 34:08

Codification is bad.

Felicity 34:10

It is so dangerous.

Paul 34:11

And because governments codify things to make it more difficult. It's like the idea that, well, well, how many times does the industry need to suffer the harsh consequences of misunderstanding the motivations of government? And that government always implements things in its own favour.

Felicity 34:32

Yeah, and you're not the guild. And so the I think what people think in their mind is, oh, it's like, you know, you know how the guild's got their their place in the National Health Act where you know we have to negotiate with the the organization that represents the majority of um of pharmacy or pharmacists. As if, well, look, that's just what we need. We just need to get into the codification, we'll sort this PBAC thing out. It's a completely different process, opportunity, and area of of work. And if you think because you have experience with the way pharmacy location rules work and the pharmacy application processes and the appeals processes, if you think that is what you're going to be doing for medicines, then not only are you going to slow down access to medicines in this country, but you're missing the point. You are completely missing the point, which is right now, if in a public hospital, if I need a particular medicine or device, they can actually make that decision then and there. They actually can within their budgets and make, you know, they're tough decisions, but they can do them.

Paul 35:35

Well, let's be clear, right? If you if you codified referen I don't know how you would do it, if you codified reference to the guidelines, I mean I mean the comparator the comparator issue dates back to this act's the creation of this in 1987, I think it was eventually passed in 1989, implemented in 1993. The interpretation has always been the same. It's never deviated. The application of that interpretation may have changed. They show flexibility when they want to, like when the minister put his foot on the system out about oral contraceptives. If you further codify it, it will reduce the possibility for that because that's why they would agree to codify it.

Felicity 36:23

Yes.

Paul 36:24

Because they want less flexibility, not more. And to compound that what what do you think the guidelines are going to look like if they're referenced in in the act? Do you think they're going to say what you think what you want them to say?

Felicity 36:41

And I think also, I mean, uh, what was the one that you were talking about? Oh, during the HDA review and National Medicines Policy Review as well, too. The the concept of the PPSE was really keen on being able to, you know, make a minister delist something.

Paul 36:57

Well we'll we'll decide that's what we have the power to force the minister to dis to delist.

Speaker 3 37:03

Yeah.

Paul 37:04

These people are not normal. This is this is because there is nothing they hate more than the term advisory. They want to compel them to I mean, can you imagine a situation where an HCA advisory committee can compel a minister to exercise their power?

Felicity 37:21

Well, it's basically Farmac. But then also, you know, to even write that kind of legislation, well then don't bother being elected.

Paul 37:26

You couldn't, I don't think you could, could you?

Felicity 37:28

No, you couldn't. You can't really actually ask um, you know, representative of the crown special.

Paul 37:34

Exercise of power in a particular way. You'd have to give the power to PBAC. And that's and that's Farmac.

Felicity 37:39

And that's the thing. You actually that's what I'm saying. You you create your own independent statutory agency that does its own certain thing and that's it.

Paul 37:46

Yeah, and I can imagine there are some people out there who would argue that that's a good thing. And those people need to be silenced some way. But I just I just I I this this goes back to to the question of what are we trying to do here? We're trying to get isn't the objective here, and this isn't the the people should be arguing, and it's and it's w the discussion yesterday, and it should always be the discussion. What's the high-level goal? The high-level goal is to get treatment to people humanity. Okay. Is the system we currently have capable of doing that? Well, no. And not only is it not capable of doing it, it virtually makes a virtue. It's a boast that it doesn't. And that to me is deeply problematic. And that's the argument. That's the argument. If you if you get down in the weeds of technical inputs, they'll give you technical inputs, they'll give you more detail, and the submission pathways, that should be that was that was the big thing. That was that was that was the thing that was going to change everything. The submission pathways. And you and I both know, because we can read budget papers, that it was a justification for high fees. Because finance gave health an extra pot of money to administer the PBS, but it had to be cost recovered. Well, how are we going to cost recover it? Well, let's just create this noodle notion of complexity.

Felicity 39:16

And we'll make the industry think that this is actually because we're going to prioritize you. Everyone who negotiated it went, I'll definitely be part category eight.

Paul 39:23

Because they treat their drugs like they're children. And and I and I get it right. I get it right. But sometimes little Johnny should be told he's got a crap voice and he shouldn't be on Australian Idol, right? I mean, that that's like he's just talentless, right? Sometimes parents have have to be honest. And and there's a and there's a there's a there's a challenge in that. Codification. Like, how is I mean the the the the bit of the part of the National Health Act that actually governs PBOC is tiny. It's a few paragraphs, certainly in relation to PBS, and then it's doubled because it applies to the NIP. Speaking of which, I mean, how did that go? Do you think we're better off with vaccines now than we were 20 years ago? And now that Atari's been moved into the crazy agency, into the financing unit. Yeah, yeah, that I mean good look good farewell, Atari. It's been nice knowing you. But it but it's to me, it's if you anything that gives that process, that advisory committee and its guidelines more power in law is absolute lunacy. It's absolute lunacy. I don't know why we would do that. At the moment, the minister can do all sorts of things with them. Why would you minimize that? Because of course the department wants the minister to have less power. Because they don't see the minister as part of the institutional framework.

Felicity 40:43

Because do you know the first thing, you know, one of the things we always talk about is the misunderstanding of the national health age. The minister cannot list a medicine until it's first recommended by the PBAC. But that's just the first time that the molecule is done. Thereafter, even doesn't even have to be that indication. They could do actually do whatever they like. Um and that's sometimes why, you know, ministers don't actually come out and do it, but that's why you see Mark Butler putting his his pressure on, or we saw Greg Hunt do it uh in MSEC, even though that wasn't a PBAC matter. But the first thing you do in codification is to say there could be no changes, no nothing to the PBS unless these Daned demigods. I don't know, they just probably think they're gods, uh tell us it's okay.

Paul 41:30

Because people are people are so you know, you you get this all the time. You and I have been on the other side of these discussions. We're people who don't really understand government go and they meet with officials, and the officials don't say much. They present the officials with a report, and the officials go, Yeah, that okay, yeah, yeah, that's that's an interesting idea. We certainly give some consideration to that. And then they go and have the discussion with the minister's office, and the minister's office goes, Yeah, yeah, well, you know, this is a very interesting issue. We'd certainly be interested in it. We were very focused on this issue, and this is something we're definitely going to consider. And people go, Well, that's absolutely amazing. You know, that was that was that was really, really good. That was very positive. Not realizing that they've been told absolutely nothing. Because I don't understand that in government, that's the first thing they teach you. That's part of the graduate program. How to meet with people and not actually say anything, but give the impression of we're definitely going to think about giving this some thought at some point in the future.

Felicity 42:22

But I think also people don't understand is that you and I, in our respective roles, talk both before and after those two lots of meetings. So, what did they say? Well, this is what I said, well, what did you say? Well, this is what we said, well, this is what we're doing. Okay, that's all good.

Paul 42:35

Yeah, and the minister's office goes goes to the stakeholder, yeah, you know, the minister's very frustrated with the department on this issue. You know, it's very hard. It's very hard. But people don't understand that the the relationship between the minister and and the department, because the minister has absolute power. The department does not tell the minister what to do, it doesn't work like that. Someone told me that this week, and I just went, no, no, no, no, no, that's not how it works. It's far more subtle than that. Of course, if the department has a particular view, and they always bring a particular view, and that reflects their own internal discussions, the influence of the central agencies, their wider considerations, they will share that with the minister. But if the minister says, no, this is what I want, then the health department, in my experience, maybe it's changed, but in my experience, officials go, right, that's what the minister wants. That's what we're doing. That's what we're doing. The critical thing is whether the minister says, I want it or not. I just suspect that often the minister says, I don't think this can be a priority. And then that gets filtered through the communication, the political communication machine, which is yeah, the minister's definitely focused on this. Obviously, we have to take it through, you know, decision making. The department's not very supportive, and like all of that gets spat out and and gives the stakeholders the impression of action. It's a skill. It's a skill that you learn in government, but it's also that as a as an industry or as a stakeholder crew, it's a skill that you have to understand and learn. And to close the circle with yesterday's meeting, when Senator O'Neill came in and said you've got to simplify your request, you've got to clarify your quest, you've got to make it easy for us. The important thing there is to understand she's basically saying we're not going to do anything unless you make it easy for us.

Felicity 44:36

Yeah, and going back to that point, you particularly in the HTA system, there is, particularly from the supplier side, listening, wanting to hear that positivity, not wanting to rock the boat, oh we've always got to be nice, you've got to be nice, you've got to be respectful, we've got to be nice. It's about the relationship, not the outcome. Whereas for a patient, it's the outcome, not the relationship. So, you know, do I enjoy being cranky about newborn blood spot screening and you know having to read this again going, well, we have to lift our game and keep fighting? I have to be difficult. I have to, until I make the minister so uncomfortable that he feels he has to do something, I know for a fact he is just waiting for us all to bugger off and go away and not have to worry about this again. So when he talks about the priorities, which I know newborn babies aren't to him, I have to make him feel so uncomfortable that he has to go, right, she's just not going to back down. Those patients are not going to back down, those mums who've lost their babies are not going to back down. I have to lift this in my priorities. And that unfortunately is the tough space for the suppliers who are part of the vendor relationship and the people who are actually the owners of the system and who use the system, which is the patient. And so again, the until we stop pretending that this we have the best health system in the world and you know the fastest HDA system in the world, and the better access than anybody else in the world, until we own the fact that our health system is failing us on multiple levels, whether it's in the primary or acute area, whether it's uh termin potentially terminal diagnosis or chronic d disease diagnosis, until we turn around and go, actually, this 1970s system isn't working anymore. Until we can do that, patients just get pushed as an afterthought, asked to sort of sort out your view. And could you just go as um as a lovely Pompeii patient once said and and it was at your conference, could you just go away quietly and die, please?

Paul 46:42

Yes. It's all about power. It's not about technical inputs and process, it is about power. If you give them more power, don't be surprised when they use it. And don't be surprised, and your experience should tell you this, when they use it in ways that you don't like, they will move into all sorts of different areas if you give them the ability.

Speaker 3 47:03

Yes.

Paul 47:03

Because that's culturally how they're how they're built. If they can make life more difficult for their minister, they're not doing it because they don't like their minister, they're just doing it because they have an ideological view of those things and and they will look at it look at it as a vehicle. You've got to get the high-level issue right, which is around the intent, bring it back to that. Doesn't mean you can't, as we write this week, it doesn't mean you can't make progress in bite-sized chunks. But you've got to look at those things over long timelines. Every time you treat these things as a discrete process, so the comparative change in 2017 to 2020 was a was was was should never have been conceded. They didn't implement it. So the proper response was, we'll start implementing it.

Felicity 47:47

I think they only did it for two or three, and then the senior executive worked out that actually junior officers were actually implementing the MOU as intended or strategic agreement at that time, and told them to stop.

Paul 47:57

Then we have the HTA review, and that's seen as an entirely discrete process. You've got to link them all and build it over time, which is what pharmacy, and I know people get sick of me referencing pharmacy, but they've got a winning culture, and they've had a lot of success, and on service growth, they've built momentum where now it's accelerating quickly and it can't be reversed. I know they're all called pilots, but come on, they're not gonna reverse those. So it can't be reversed, and it's gonna build more and more momentum, and they've been very consistent, and that's what you've got to do. So if you want change on comparators and we're gonna get a wording change, okay, don't be disappointed when it basically makes things worse or doesn't make anything better. Think about planning for that scenario now. Okay, so what's the next process we can use? This is why the once in generation language is so bad. Because there's only a matter of time before Mark Butler starts using the term once generation. I think he already has used it a couple of times. Yeah, and he's gonna use that to disarm calls for another review, or to do any type of different reform.

Felicity 49:00

Well, I've got to do the ones that were once in a turn.

Paul 49:02

Yeah, we've got to give it, we've got to give it a chance to bed down, you know, we consult it all, you know, so there's all all of that. So just I'm not saying don't be hopeful, I'm just saying be realistic and plan for every scenario. And some of those scenarios are not going to be good. Nope. But but you can you can be defensive about it, and that's and that and that's fine, and that's fine.

Felicity 49:24

Now I know we're about to finish, but I had to put an interesting question to you.

Paul 49:28

Oh goodness, I know he's looking really nervous.

Felicity 49:30

I love when I do this. I had the funniest thing this week.

Paul 49:33

Which was?

Felicity 49:34

But apparently you have a private jet and you never take me anywhere on it.

Paul 49:38

No, I gotta kill that room a stone dead. It's like I do not have a private jet. I just think I I I I mean, don't get me wrong, I'd love a golf stream, but I don't have chemist warehouse money.

Speaker 1 49:54

I thought that was a stereo golf. I've you know, you're like, oh my gosh, I definitely have to ask that one few of this so that we can the only headsets we wear together are these ones.

Paul 50:02

Yeah, well, if I had a private jet, I wouldn't need my uh publication. No, my headset. Well, I wouldn't, yeah, I wouldn't I wouldn't be doing this, let me tell you. Oh no, I probably would, you know. I I I do love it, but yes. No, that was uh that was not a good one. Well, that was a good one. That was a good good chat. I really enjoyed it. I've been to a lot of events at Parliament House this week, and even though the thing that was said yesterday was said, it was still a very good event because we had the privilege of listening to a patient share their life experience, and that is something we should never take for granted because the things she shared were just heroin. GoFundMe pages. We need to keep an eye on that in our health system. Access to superannuation, we need to be monitoring that because that to me that's the canary in the in the mineshaft.

Felicity 50:49

One of many, Felicity.

Paul 50:51

Thank you. I'm just about to head to the airport now. Will you pay my way and getting on my private jet?

Felicity 50:54

So giving Senator O'Neill a look.

Paul 50:57

Thanks, Felicity.

Felicity 50:58

Thanks, Paul.