The 'Dispatched' Week in Review - 29 May

Powerful patient stories stand in contrast to a decision-making framework that explicitly dehumanises their lived experience. The need for 'decency and compassion'. Week one of Senate Estimates, the challenge of saying one thing publicly and something else privately, and a Budget that revealed so much about what is coming.

Transcript

Paul 0:11

Hello and welcome to the Dispatched Podcast, Fortnite in Review. My name is Paul Cross, and well, it's usually the week in review, but it's the Fortnite in Review, because it's the first time we've done in a fortnight.

Felicity 0:25

Yeah, that's my fault.

Paul 0:26

Uh delighted to be joined by Macca, who is Felicity McNeil PSM, Chair of Better Access Australia. Hi, Felicity.

Felicity 0:33

Hi, Paul. Have you recovered from your conference?

Paul 0:36

Physically, yes. Emotionally trying.

Felicity 0:40

In what way?

Paul 0:42

Well, it's always a draining day. I thought it was a good day. I really enjoyed it. Got some good feedback. I thought the patients at the start of the day were quite a harrowing story. I ha I've decided not to write about their stories directly out of respect for them. It's just terrible what they've been through, Katrina and Elise. I don't know, do you think it's a mistake not to write about it?

Felicity 1:16

Did they give you permission to?

Paul 1:18

Yeah. Yeah. Yeah. They they're very open about their stories, but you saw that they were not comfortable sharing. They were very they were very forthright and very articulate articulate in sharing their experiences, but also it was very emotional for them because for both it was terrible.

Felicity 1:38

So my counterfactual to that is that it was emotional, that it was difficult for them, that a patient hides from her workplace that she is ill and took a day off so that they didn't know what she was doing. And another patient who spends so much money in the health system to try and have the best opportunity at life for her, her partner, and their um uh those they care for and their their forthcoming children. They put it all out there. And I listened throughout the day as people said, you know, we really thank you and respect that. They talked about how until Patients Australia had contacted them Lisa, they didn't think anyone listened to them, that no one was really interested in their story. And I listened as the day went on and the industry very quickly fell into its usual cadence about what it's doing with the system and what it's going to negotiate with the government and about what the the struggles are and how the patient is important, and I think your um I think your commercial leads at the end were very good at actually bringing it back to being about the people.

SPEAKER_02 2:50

They were good, weren't they?

Felicity 2:51

And so I guess my reflection is that those two amazing individuals put themselves through great trauma to make sure their voice was heard, and it needs to keep being heard because my concern is that that room hears a lot of stories a lot of the time, and unless you're actually working day to day with patients, actually working with them as opposed to when you're engaging at a particular point of a reimbursement process, you can forget who you are genuinely working for. And you know, you are working for a shareholder and the money and the innovation, and that's all great. But my counterfactual is that they put themselves through hell to be there. And I'd like their story to be heard more than once, and not just because there was a room full of people who had the privilege. You have a readership and a listenership that is extraordinary and that is read in parliaments in the states and federally. And the reminder of that, the reminder to every member of PBAC who is still refused to expand access to biosimilars, they promised us that when the prices came down we would expand indications and make them more freely available. Instead, we introduced arrangements that would discourage the use of biosimilars. And even today, you know, we I know we're going to talk about the biosimilars announcement in the budget. And that that caught everyone off guard. But it's about initiation and moving to a biosimilar for first-time users. Where is the link on that? Where is the priority in what is about to be negotiated that says that patient should never have to jump through those hoops again that that particular mother had to go through to finally get access to a biological medicine? That mum who's fighting for her child with pediatric crones, how is what we're doing going to change that? And so, yes, I guess I passionately implore you to reconsider that decision and make sure that every parliamentarian and every electorate officer and every advisor or shadow advisor is a reading as they go into estimates next week why scrutiny of what is happening on the PBS matters.

Paul 5:10

Yes, I think that's fair, and I'll take that feedback. I'll just check in with them again. Well, we had one one of the patients who was uh had very bad experience with the health system in terms of their their dialogue with a particular treating clinician switched and has a more satisfactory situation now, but it took her a long time to get on the treatment that she actually needed, and she wasn't even informed about the process she was going through. So she felt very disempowered and very disrespected. Uh I don't know whether Yeah, I think disrespected is probably the right the right word. The other patient spends $35,000. She's just a young woman, and she spends $35,000 a year out of pocket and lives with her partner in a caravan because of the health system burden uh she lives with, or the burden the health system imposes on her. So there were harrowing stories, and I think I have to admit my contribution to taking taking it into the weeds. That's my comfort zone as much as it is anyone else's. I did constantly try and bring it back. That's why I had the patience on first. And again, thank you to Lisa Robbins from Patience Australia for organising that. She did a great just a great job, a great thing on that. And the survey that she presented was was a great survey, but very worrying results. Uh but overall the day was generally what I anticipated. Didn't get off to a great start.

Felicity 7:05

Was that because it was 460 days, 970 days, 620 days?

Paul 7:09

We we're going to get to that. Because these numbers are confusing. Yeah. But uh I was a little bit unhappy about something that happened. And I'm gonna leave it at that. I made my views known.

Felicity 7:22

No, and I know you know you're not gonna draw it, but th there's two things I want to add to that before you move on. The thing that I found disappointing about that is having worked with you the night before on how you were approaching the day, which was that you had intended that for every speaker that was coming up, you were going to ask them what it is to be a patient, their observation of being a patient or caring for patients in the system.

Paul 7:46

Yes, I spent hours preparing. Trevor Burrus, Jr.

Felicity 7:47

You had a link going through from so starting with the two patients who were courageous, to then actually ask every person that spoke on that stage to reflect before they launched into their narrative, from their position of employment, to what it's like to be a patient in the system, not what it's like to get their medicine subsidized, but what it's like to be a patient or a care of a patient in the system. And what transformed that was your notification of this report. And it derailed the patient-centricity narrative because that had to be addressed, because then speeches were now about things that weren't supposed to be. And I found that very disappointing. And one of the things that I want to pick up on with respect to the second patient and her extraordinary trauma of the system, we we talked about someone needing access to biological treatments for a musculoskeletal condition and the lack of access and the lack of willingness to help and having to change her riders. Let's be very clear that the second patient was being treated so badly and being refused treatments that she didn't even know were existed in surgeries, that she actually had to move from the public system to the private system to be delight delivered the standard of care for her condition because the public system wasn't going to give it to her, didn't value her enough to do that, didn't think that with everything else she she had on, she was worth it. And so she self-funded to go and get that treatment where the equality of care and the timeliness of care was there. And what I found interesting in the room that day, and this is why it was disappointing that you couldn't have these patient conversations with people on the the the stadium, the podiums, was everyone would then talk about how much they're paying out of pocket. An urgent care clinic did not help either of those patients on your stage.

SPEAKER_01 9:46

No.

Felicity 9:47

Having a Medicare card did not help those patients on your stage. And for 90% of people in the community, a Medicare card does not help guarantee you care. It has to be a combination of things. As I keep reminding people from the budget space and the defunding of chronic disease, urgent care clinics, which are getting all this money to try and stop people going to a hospital, emergency department, specifically preclude anyone from attending if you have a chronic disease. If you have need help with your chronic disease, this is not the clinic for you. So if you need a cut or a scratch or want to check whether your kid's got a broken arm, that's fine. But if you want consistency of care on the weekend or after 6 p.m. because you've got a chronic disease, you're not welcome. And I just think that was what I took away from that event. And I think that's a great conundrum that the industry is going to have to talk about. It's actually not just problems with access to medicines, it's access to everything. And the delays with access to to specialists, to to a GP and the out-of-pocket costs on so many things. And I think that is what I really harnessed and listened to. And that was the agitation that was created in the room. And so congratulations to you on that. But I do want to say I'm disappointed because um that planning that you had done, I think would have even been more effective at humanizing what it is that those who are in a privileged position to work within and advocate in this system must remember.

Paul 11:23

And that's that's I suppose the theme that I've been trying to push over the past really twelve or eighteen months, which is we need to humanize. And this week I talked about the fact that our system intentionally dehumanises. That's what it's designed to do. It's designed to subordinate human considerations. And I describe them as, you know, let's accept that they're subjective human considerations, but I think with a society like Australia where we all pretty much share the same values, common values, and the Prime Minister articulated these on election night 2022 when he declared his intention to lead a government of decency and compassion. Well, there's nothing decent or compassionate about health technology assessment because it's not designed for it. I used an analogy writing this week, and I and I sort of left the second half out, and I regret leaving the second half out, because of course I highlighted the health department video that compares extending life to buying extras on a car, you know, the scratch and dent insurance and pain to extend your life, it's the same thing, and it's an appalling dehumanizing comparison, but but it's a very honest one because that's actually what the system does, it tries to break our healthcare needs down into a discrete purchasing choice, and in order to do that, you do have to dehumanize us, and I don't like it, and I don't think any of us should like it because I don't think it's consistent with our values as a society, and it's certainly not consistent with the decency and compassion the Prime Minister talked about in 2022. It is, I think I use the equivalent of what how do these values manifest themselves? We care for our neighbours in this country, and that means when you walk past someone on the street doing it tough, you feel bad for them, you feel a sense of care and compassion, you wonder how they got into that situation, and sometimes you think about how you might help, and that might be as simple as giving them some money, unfortunately, you don't carry much cash these days, or going into the supermarket to buy something for them. I would just be blunt, our system of HTA walks past that person on the street says you're not worth spending money on and that actually us not spending money on you is in your best interest. That's it, that's actually what it does. And I don't like it. And of course people the the comparison makes people uncomfortable because it should. It should because the we'll only save you if it's worth it mindset. It's before you get to what they're doing in the ACT now with their citizen jury and whether or not the government can kill you or not. The discomfort it causes is because the way we make these decisions is not consistent with our values, with our moral code as a country. And the fact that that moral code is subordinate, and I know every single person, probably, on those HTA advisory committees shares our values and moral code as individuals. But once they get into that institution, that gets jettisoned in favor of this echo chamber of the hierarchy of the the subordination of patient. In a hierarchy, the the human aspects of decision making are subordinated to these ridiculous economic models, which are just arguments via spreadsheet, and it's just that one side of this argument has a lot more power than the other, and they exercise it, and unfortunately, it becomes like a sport. And I don't like it, I d I don't accept it, and I'm never going to accept it. And when I see 466 days, 600, like however many hundreds of days, to me it's meaningless. It's meaningless. Why is it one day? If if these products work, then patient patients should be able to access them. In principle, that should be the goal. And again, I know people hate me going on about the American health system, but it biases so strongly in favour of access.

Felicity 15:58

Yeah, look, it does, and nothing you're saying is without a hundred percent accuracy and justification. I think the issue and my frustration when when people get into discount rates and comparators and the 50 recommendations from the HTA review and where that's all going to be, to me, it is also an irrelevancy because we always talk about processes, how we entrap, and that's actually what leads to all these delays. No one could argue that the processes of today are faster and more efficacious than the pri the processes we were administering in 2010, 2012, 2015. Like speeds, time listings, you know, there was a reason that we had to hide the prioritization and secretly list and run through cabinet at crazy paces, because that priority we'd made previously to the industry about, you know, six weeks for this, twelve weeks for this, six months for that. There were KPIs. But reflecting two levels back on what you're talking about. If I am a patient walking into the Canberra Hospital, there is a patient charter of my rights and my expectations and the system's rights and expectations of me as a patient, which is mostly not to beat up and swear at the doctors and nurses. But for everything else, they have to listen to me. I have a right to be heard, I have a right to a second opinion, I have a special number to call if I think that I am in danger. All these things. If I walk into a pharmacy, there is a charter of rights for me as a patient, what I can expect and what the pharmacist expects from me in return. If I walk into a GP, if I walk into a physiotherapist, there is usually some form of these are your rights and expectations as a patient. We have none of that in the HTA system. In fact, we specifically say we put the patient outside the door. We do not think about the patient. We think at a population level and about the spreadsheet. And then we hide behind the cursory, well, the National Health Act says that we have to consider this. You've argued it before, and we at Better Access have have supported you in this regard. If I need to put a line in the National Health Act that says the PBAC is first and foremost there to ensure the improvement of access to health care and health outcomes for patients, full stop, it does this by using the following. I already changed the debate.

Paul 18:24

Yes.

Felicity 18:25

If I demand a charter of engagement between the health department and the HTA assessment bodies and a patient-a patient charter, I change the debate. If I demand that any decision of these bodies is appellable to the Administrative Review Tribunal, like anybody on social services, the NDIS, seeking migration or refugee status, I have a right to appeal a decision made by a group of people who are so frightened of their own decisions they won't actually put their names to them. And yet that is actually what you should be doing. So as everyone starts to talk about these days and times and and you know, like I said, I'm a big fan of KPIs. You know, we've been saying it for years, 100 days. What one day, sure, would be great. I was trying to be realistic about this display.

Paul 19:14

No, I just I argue it intellectually, which is a any delay is bad.

Felicity 19:18

I appreciate that. Any delay is bad. Um I just think it should be 100 for everything. Why? Because it was a good starting point to move everything backwards, but I agree the intellectual principle. But if I actually had a piece of legislation that said this is actually the job of the PBSC, which is first and foremost to improve access to medicines and the health outcomes for the Australian community, they do this by. We lost that, and that needs to be acted. Now, I am a strong believer that the system had a lot more flexibility in it 15 years ago. And I understand why we've lost a lot of that, and some of that's been under my watch and some of it hasn't. And that's what that's what happens. But you need stewardship and you need moral compasses saying we can't do this or we can't do that. We've lost it. We used to make a lot of flexible decision making. And if people in the system genuinely don't believe that they are empowered or legally authorized to think about things differently, to move in the gray more, to do better risk shares, to be a bit more flexible in pricing, to try and push something through because it's important, then fine, we legislate and say, well, this is what you have to think first. And it is very important because I have seen some of the people that work in the system over the time go straight to price. And you often have to say them, no, no, no, no, no. Does it clinically work? Does it improve things for patients? If it does, then let us sort that out.

Paul 20:44

So it's a misunderstanding of what this system is. And I wrote it this week about, and I've said it a lot recently, I'm sure people are sick of me saying it. It's not a technical framework, it's an ideological framework with a technical implementation. So it's always striving for HTA perfection. That's its ultimate goal. It's the Icarus metaphor, is that it's flying closer and closer to the sun. You know, the wax on its fake wings are going to melt and it's and like Icarus, it fall into the sea. But the the difference is that in this case, Icarus are patients. And you see this in the Delphi surveys, you see it in the HTA outcome, review outcome where, and you see it in the responses of the two advisory committees to the final report. It's all yes, but, but it's also striving for this perfection, models, process, systems. It's trying to make it better and better and better. So, what they're proposing to do now is to add more complexity and more process. And we're getting the streamlined processes again. We're only five years into the last streamlining of the processes. And guys, streamlined processes mean Higher cost recovery fees. It's why what's required here is an intellectual debate about the sin of this system, is the dehumanizing of the lived experience of patients. And what I was trying to get at in planning for the meeting last week was I don't want you to talk to me as an industry executive. I want you to talk to me as a patient or a carer or the family member of a patient and how it makes you feel. And I lost that through a bit of frustration by him. I sort of lost that opportunity. I got a bit sideswiped on that. That said, uh it was still still a good day. I thought Owen's address was very good. I thought the I did I really like the executives at the end too. That was a real tip of the spear discussion. I thought I thought that was that that was though that they were really good. But but it's it's my frustration that we just it the debate constantly devolves into stakeholders being forced to attack this castle at its strongest point, which is the keep. And you just have absolutely no hope, so you've got to attack it at its most vulnerable. So 466 days is fine, but what does that mean in terms of human suffering and death? This is what this is what we have to talk about, is and that's what we heard from Katrina and Annalise on the day, and I think that's what the industry needs to talk about, particularly but patients need to talk about. When I see people on social media platforms, and you know I find social media platforms very difficult at the moment, but promoting that uh draft HTA patient engagement framework, which has to be one of the worst ris most risable documents I've ever seen.

Felicity 23:49

I just want you to know that Paul's making a heart emoji with his hands towards me and I'm not happy, Jan.

Paul 23:55

I've I've never seen in all my years a more pathetic, malevolent document in my time. Because it's so cruel. It is so cruel. How do you know we love patients? Because we've got a love heart emoji in it. And they released that the day before they sent out this targeted consultation through these ridiculous Delphi surveys, and so you're gonna lose this. Anyone who wants meaningful change, this is no way to deliver it. What you're gonna get is more process because that's what this system, it's what it's I you this is Icarus getting closer to the sun, and that may very likely means less asset access. Remember that the HTA review final report said, well, for those therapies that meet the new definitions of high added therapy value and high unmet medical need, we hope to fund if they don't go through the uh parallel TGA process, and most don't, uh, we hope to fund those within 12 months. So they hope to reduce the time to listing by around three months. Although we need to talk about the whole time to listing thing because this this it's you know, the the Department of Health said 22 months, 630 something days in its incoming government proof. The industry says 466, but now it's saying something a little bit different based on that access denied report. The ABPI or the FPI, I don't know, someone in the UK in Europe has done a report and that actually shows Australia's doing pretty well compared to Europe. So I just I I think that is just the easiest thing to defeat.

Felicity 25:40

It is like as a former bureaucrat, I'm sitting here going, well, this has me sorted, um, and I can be beguiled and confused by the statistics that the industry is putting out in the public domain when I can see other things, and apparently we're not doing too badly. But, you know, what what's the point in time? You know, this report says, you know, France takes this long, the next one says it's something different. This says us, you know, we were quite honest, Senator. You know, we've told you it's 662 days, and we appreciate why we can also talk about you know what that means as to why that's actually happening, and that's not all us. Thank you very much, Senator.

Paul 26:15

Well, that's that's right, because there's two sides to this coin. And look, in fairness, I think the industry has got a bit of traction over the time, too. The challenge is it now has to land change through a deeply flawed review process, which everyone accepts. Everyone has been accepting privately for most of the process that it was not going to do anything. So now the industry has to close the private language with the public language, and I feel it doing that. Uh, it's got this pending negotiation. You know, I wrote today that you don't know what Mark Butler's on the hook for. If you agree to savings, there's going to be a lot of claims to that money. A lot of claims to that money.

Felicity 27:02

Assuming it's not already spent.

Paul 27:04

Yeah, and it's quite possible it is already spent. And that's that's a real challenge. So if they put a savings on target, you know, and they'll come and do what they do in those negotiations. But you know from first hand experience that how that savings target can grow in a very short space of time.

Felicity 27:25

I do, I do, I I do. It's you know, 30 days is a long day.

Paul 27:30

Um at a billion dollars a week there for one, I think.

Felicity 27:33

It was, it it was it was brutal. Um look, and I guess as as I talked to you about after your conference, I sat and talked to patients afterwards. And how quickly the debate becomes about what we as the industry are going to ask for, what we as the industry need, what we as the industry are telling you. And as the patients who are actually the owners of the system, they're sitting there saying, Who asked you to go and negotiate this for us? Like, why can't you like perhaps if we all told you what we want, we want a hundred days to access, we want this, we want better X, Y, and Z, or we, you know, have concerns about chronic disease, Mark Butler, not as much about some other things. That very quick disassociation and moving away to this is our you know, purchase a provider conversation as opposed to a health system discussion. And I know why it happens and it's and it's all fine. But I I don't need more HTA reform. I actually want principles-based reform. I want everyone saying that I I want a hundred days. I want from ARTG to the day it's available on the MBS or the PBS or the NDSS or the NIP based on the you know, whatever that's a diagnostic, a vaccine, a genetic therapy, a you name it. I want it available. I want it. And so you need to then retrospectively push all your processes backwards. And I understand that there are problems with pricing and rebates, and whether those rebates are because of capped uh patient numbers, which are not reflective of the genuine community need, or whether it's because of the high rebates on the published versus effective pricing. I know that stuff is all there and needs to be discussed. I know there is pressure in those pricing regimes. But if if you're concerned, you know, I'm I sort of look at something and go, well, if I look at the majority of PSDs over the last few years and cost minimization plus seems to be the new thing, well, go in and define it for them and say, fine, you want to give me cost minimization plus, it starts at 10%, 20%, 30%. Perhaps stop trying to argue a discount rate and at this rate, perhaps actually swing the system on its head and say, well, this is where you want to go. Perhaps you should all go back to saying, hey, we we want CPI. We want annual growth. Open up the conversation, have a different conversation. If you want to energize it, because what do I understand as a patient? I understand cost of living. I understand that that medicine and the supply costs have now gone. If if my basic milk delivery, you know, at um at Woolworth's has gone, I understand that a medicine that's being manufactured in one country and transported in a you know at cost of living crisis costs more. There are things that you can do to actually bring me as a patient along on this journey, if if that's what the issue is, not just the reference pricing things. There are things that you can do.

Paul 30:35

Well, the conversation is to change because there's no historic example of where conversation which it within this overton window, which is the formal framing of discussions, has delivered anything like you would consider or you would describe as meaningful reform. You've got to move the overton window, and and that means changing the conversation.

Felicity 30:58

Big time.

Paul 30:59

And and moving away from this incessant focus on technical inputs and processes. And I know it makes that's people are comfortable talking in those things because there's sort of you know that's the whole industry around them. Yeah, there's they shouldn't talk about big pharma, they should talk about big HTA.

Felicity 31:17

100%.

Paul 31:18

But but that needs to be broken, and part of that means trying to sideline the HTA institution itself. This is why having a conversation about decency and compassion in decision making does that. It sidelines them completely. I have no particular personal gripe with the people in the institution. I think they're institutionalized. And as I wrote this week, if you can't see that there's a problem here, that's a diagnosis, you're institutionalized. And that's and that's what we have to get away from. We need new voices, we need new conversation, and we need new subjects. And as I think I said on the day of my conference, I'm as guilty of this as anyone, of getting down into the weeds. But part of my objective is to try and challenge the merits of that discussion. If you want to talk about HTA technical inputs and process, the government's going to have that conversation all day, every day, like they've been having for the last 30 years.

Felicity 32:23

Yeah.

Paul 32:23

Because it's where they're it's where they're incredibly comfortable. I think there is a role for HTA. I just think it needs to be subordinated. But but this institution is so entrenched.

Felicity 32:36

But I think maybe even it's about taking down the shiverlift of that term and phrase. Because basically what you're all all we're doing here is you've got a product to offer. I've got these existing products, and Paul, you're telling me that this one's better. And therefore I should pay a bit more for it. And so you're saying I've got these, you know, I've done all these random control trials that show that it's safe and efficacious, and I think it's improving outcomes by X, Y, and Z. And you think, Paul, that's it doing it by A, B, and C. And so all we're really sitting here doing is saying, what price are we going to pay? And so we're putting this complexity and as you've always talked about, we both do. E economics isn't a science.

Paul 33:25

No, no, no, no.

Felicity 33:26

It's how we can move something. Everyone can move something in those models and show outliers and change it. Oh, look, if I change this number, the outcome changes. Yes. Yes, it does. And so do I need a really complex thing called health technology assessment and all the craziness that goes with it to sit down and have a conversation with you about whether I want to buy this because it helps patients? Or do I want the principles of you've shown me it works, here are your pricing offers, and now I'm going to look and say, well, this is what I want to do. Because we're using that HTA and all those Kaplan Maya curves as if that proves why we pay a particular price. But in the end, it is a negotiation. Because if you take away the absolutism of HTA, and I'm like I said, let's start using different language for it. Let's challenge the chivalrous, let's let's call it um, you know, the health, you know, the health technology negotiating arrangement or something, like something, but stop um elevating HTA as if the be-all and end-all of how we make a decision. I remind people all the time I was the head of the organ and tissue authority. I would not, and nobody would get an organ or tissue transplant in this country if it was based on a HTA assessment, because it cannot be justified.

Paul 34:47

Because all the private jets singing around Australia.

Felicity 34:50

It's it's everything about it, and it's been the opportunity cost and all the things that they take into account. The only one that can ever slightly be codified in a HTA assessment and survive is renal, because you know, if I'm if I'm replacing your kidneys, you've probably been on dialysis and that's 96,000 bucks a year and that's expensive, so a transplant might be value for money. But we don't make that decision. In fact, so often in our health system, I do not make a decision to treat you because a HTA economic model told me it was worth it. You're in front of me as a patient. Like, let's think about me. I'm I'm in a hospital and I'm having an anaphylactic reaction. It is cheaper to let me die. But they don't. They pull out the adrenaline, they pump me through it, they put me things, I have all the tests, I have the ECGs, they spend a lot of money on me and they decide they treat me in front of me right then and there.

Paul 35:46

But this is th they they dehumanize us through the models, but also the language.

Felicity 35:51

Yes.

Paul 35:52

Because that's what it's designed to do. Yes. That's its explicit purpose, as the parliamentary debate showed, as the legislation clearly reveals. I I I completely agree that we need to try and change the language, and you and I banging away on this, trying to get people to think about this differently, which is why I was invoking the Prime Minister's language around decency and compassion. Well, what's the where's the decency and compassion in this system? There it's just it's it's not there. And in fact, uh the language would make George Orwell proud. And and I find it, I find it incredibly frustrating when the advocates for change, when I see them on a social media platform like LinkedIn, shilling for this fake science. HTA is about saying no. And it's about attaching some fake science to the saying no. And I think it's brutally dehumanising.

Felicity 36:57

I guess the link for me was that I don't want to see the agreement going on and talking about the HTML. You talk about the public and the private. And I've been watching a bit of estimates this week while I while I can. And uh shout out to Senator Pocock, who noticed in all of those 18 uh responses to parliamentary inquiries, one that he was interested in in respect to gambling, came back with all 20 something recommendations with just noted. Um and they weren't rejected, Senator.

Paul 37:28

They weren't rejected.

Felicity 37:28

No, they weren't rejected, they were noted. Nothing was supported, not even supported in principle, which made the diabetes inquiry run look positively like Stella. But also the concern I had was was the misrepresentation of it. So, oh well, you know, this is a government document, Senator. I couldn't possibly comment. I'm just a humble public servant. Like, you drafted it. Like we all know that the agency's drafted and it goes through the processes and it goes to ministers.

Paul 37:56

Are you telling me that the minister's not sitting at their desk in Parliament House typing up the government response?

Felicity 38:01

Well, I'm I want to congratulate Mark Butler on a stellar write-up for the diabetes inquiry. Perhaps that's why he forgot to mention that CGN was in MSAC at the moment as part of his, you know, 30-page response. But it was a really good example for me where our actions and our words have to align. And one of the things that I found quite shocking was how many organizations and patient groups, for example, welcomed the diabetes inquiry response, which was just it was devastating if you care about insulin pumps or devastating if you care about um you know access to various treatments. And I've seen this week that one of the treatments that you know they all talked about in the inquiry is heading into PBAC. Um, I I did notice that, you know, unless you've actually got newborn screening for type 1 diabetes, you're probably not going to be able to use this too.

Paul 38:52

What's the what's the point? And I'm sure that will be the one of the excuses.

Felicity 38:56

Amongst many. Um, but I think we have to be careful. And so when you keep changing your line of end, you know, this week up at Parliament, I heard a lot more about people saying, Oh, well, when they welcomed the re inquiry response, actually now they're not really welcoming it. Like they wanted to say something publicly nicely and then privately they'll now start arguing. Well, it kind of doesn't work like that. And I in the health agenda, in look at what we've got going on with CGT and negative gearing, uh, the NGIS, there is so much happening in this parliament right now. So much happening. If you are not absolutely clear on what you think of something and why you support it or you don't support it, and the actions that you want, and they are simple to understand and easy to action from a political perspective, you are going to get lost in the mayhem. And I guess I'm encouraging people to be really clear in your language. Public and private must align. And being very specific in a world like you said, in the next month, we've already seen what is it, CGT is going to a Senate inquiry that, whoops, we didn't realise we were accidentally sending it to a Senate inquiry. Love that one. But think about where it is and think for turning back to the medicines industry for a moment. Yes, you're about to go and do these negotiations. Just think how much bandwidth is going on everything else at the moment. And think how much bandwidth for patients that we're going with. The same mum who's got a child with diabetes is also fighting the NDIS right now in what it may or may not mean for them. It could be good, it might not be. And the ADHD medications and their physio and their speech pathologist. You are about to, if you go on too much of a technical issues, we're drowning as carers. We're drowning as patient groups. So really think as you all go forward, and this is not just for medicines, it's for everybody advocating in the health system right now. Public and private must match and be very clear what you need changed.

Paul 40:56

As you make a really good point about bandwidth, is that there's a hundred different organizations, many of which represent multiple companies walking around Parliament House at a given time. So getting any room in the bandwidth is really, really difficult. Really difficult. Uh complex messages obviously make that more difficult. Ones that don't fit with sort of current issues and prevailing narrative, because obviously these tax changes are going to dominate this country for the rest of the year, at least. And we'll see a lot of that in the next month or two. Uh and that makes it all the more important for people to be really clear when they say it. So I have heard the same with with you, because I was very surprised at some of the responses to the diabetes review. Having seen it, there's nothing in there that's positive that I could see. And people I mean, I suppose you welcome the tabling of the review, maybe.

Felicity 42:06

Better let them never.

Paul 42:07

But but if I was Mark Butler and I was uh if I was a health department official, I'm asked about it at estimates next week, I'll be saying, Well, I do note the comments from X, Y, and Z welcoming the government's response.

Felicity 42:19

We're very excited and we've got all these things going on at the moment.

Paul 42:22

Yes, I but official X uh the organization told me something different. Well, that I I I can only take what they say in public, Senator. So that's that just cruels advocacy straight away.

Felicity 42:37

It does.

Paul 42:38

Straight away. And you let the government off the hook, in a sense. And I I thought Senator Pocock was very good on that this week because he's got this very sort of almost it's not monotone, but it's very dry sarcasm.

Felicity 42:53

Oh yes. I don't think they realize half the time how sarcastic he's very sarcastic.

Paul 42:58

So which of these noted are you progressing? Oh well, well, Senator Um None of them are actually rejected. None of them are rejected. But what does noting mean if the government's noted them? And but I And it's noted them really hard.

Felicity 43:14

But I thought it was also really instructive because people need to understand how that language in nomenclature is changing, and that's what he was pointing out. He said, What happened to agreed, rejected, supported? Like you've changed the language, and there has. And if you go back and read the 18 that were tabled uh on Budget Day, there's a lot of shifting of language and you know how how we're maneuvering things. And we we as advocates or participants in the system need to be very mindful of that. Language is changing, you and I always say nomenclature matters, and the fact that they are changing in writing in particular ways is something we have to be alert to. I think it's as you've rightfully pointed out, you're seeing a pattern of behavior in this government. Which is that they literally lob it on you and then say, right, now try and argue it back.

Paul 44:07

Yeah, that's well, they did it to pharmacy on 60 days, and they uh they've now done it to investors and other people. And done it on the NGIS. They've done it on the NDIS and then they negotiate. Uh now you can get away with that when you've got a comfortable majority. And maybe they've made the calculation that we can get away with it this term and it may be a bit more difficult next time around. But if stakeholders will eventually see it coming. And this is why it's important, I suppose, to note to the pharmaceutical industry. You don't think they'll do that to you? I I is walking away from a negotiation with a s with government on new agreements a a workable strategy? I I suspect it's not. I suspect it's not, but I don't know. I don't know everything that they know, but I I I think the government will say we're gonna do it anyway. So this is it's it's it's complex and they're gonna need to really think it through.

Felicity 45:08

Yeah, and um you can also see other sides of things, which is when does government think its interlocutor might cause its problems to start with that would be difficult to overcome, so therefore it announces first a negoti and then goes on a journey together, versus when does it think, well, my interlocutor is mostly going to go on the journey anyway, so we can do this in a different way. It it it looks like a partnership rather than um a war.

Paul 45:37

Yeah, and the industry has a history of coming to the table.

Felicity 45:40

Yeah, I think they're already declaring that they're ready to partner. So, you know, you can see those different things happening, but we we've talked in the past about the various um things that are probably already decided or already, you know, need to be stepped through and and done, and that's all fine. But I I did just think it was interesting to watch how the parliament is changing and to just be people need to really think about how you're putting your time and effort in and the consistency of the message and and keeping it keeping it tight. We're keeping it clear what you stand for and what you want changed.

Paul 46:11

Yeah, we're getting a it's it's a it's we haven't seen anything in this political environment for some time where you've got a government proposing reforms that have upset a lot of people, and an opposition saying not only will we not endorse those reforms, we've got our got our own. And so they've taken two very different policy paths. Now we haven't seen that well, for ten years, or probably since twenty fourteen, I would suspect. And so it's going to be very difficult, as you say, for anyone else to get a look in in an environment that certainly in recent works has become far more visceral. So, how is that going to change the government's behaviour? The government is obviously incredibly emboldened. Now, how long is that going to last and what will the consequences of that be? I would I would encourage the industry, and I did say this, I really liked Alan Smith's address uh at our conference, the BMS general manager. My only my only takeout from it, which is a note of caution, is that all of the problems he described, the industry agreed to. All of the statutory price cuts, the catch-up in 2023, the industry agreed to all of that. So I think part of the process, in order to position itself going forward, the industry needs to say we got some of that wrong, and we acknowledge our part in that. And that then actually enables you to flip. Now, now, does that mean you know, it looks humble, and and you've got to look humble if you if you believe you've got you've you did it wrong, because otherwise the government's just gonna be saying, bang on, you agree to all of that.

Felicity 47:41

Yeah, but I think you've also got to if if you believe it's not working, then you have to own it.

Paul 47:46

Yeah, you've got to own it, and that's and no one's gonna criticise you for that. It's fine, right? Everyone, but it it actually then creates the platform for you to work forward. But also in a very visceral political environment, Mark Butler obviously changed his tone to the industry a few weeks ago, but I think that's part of a broader change within government, is that they're they know they know they're entering a pretty challenging period, and so they're muscling up for it. I don't know if maybe there's a better way to say it than muscling up, I don't I don't know.

Felicity 48:13

That's non-gender specific.

Paul 48:14

That's non-gender specific, but you've seen it at estimates this this week, and the the rubber hits the road in estimates next week, but and not just because health have got three days, but because you've got treasury and and that's going to be really, really interesting. But the early signs this week is that it's pretty willing, and that's going to become more so, I suspect, uh, over the next, you know. Can I just say I thought Phil Corey in the AFR when he wrote about the people who voted for the tears?

Felicity 48:48

Oh yeah, they're now the party, aren't they? Not the party, the party that's sort of holding.

Paul 48:52

All those old liberal seats that they're full of people with family trusts and big capital gains discounts. And now they've got no one to defend them.

Felicity 49:00

Well, yeah, I thought I thought it was funny the the the news yesterday of uh Allegra Spender who actually was doing all those TikToks on why we needed CGT reform was now being told by one of her main corporate donors that no, that's not the reform we need, and now she's she's she's winding it wit back, which was um Yeah, but this is a government and really the the experience with 60 days was so pressing.

Paul 49:25

Now you and I both uh believe that Mark Butler took sp your bad advice on that. Yeah. But in the end, what did they do? They dropped it on them, started a fight, they got some bruises, cut some bruises in that, and the pharmacy guild was punished with several billion dollars in compensation.

Felicity 49:43

And the Department of Finance was punished with uh alongside the Department of Health with failing to actually achieve the savings forecast.

Paul 49:50

Well, and that's okay, okay. So is there a shortfall that's got to be picked up somewhere along the line here? I mean there's all this. Yeah, so there's all sorts of this is this is why if if the industry is going into this negotiation thinking that if we get two or three billion dollars in savings, that can all be set aside for the PBS. I think you gotta understand that it's quite possible that that's already been banked and committed elsewhere. That is eminently possible. And that's it wouldn't be the first time it's happened.

Felicity 50:23

No, no, it wouldn't. And and look as I've been talking to you and you know, and talking in my work the last couple of weeks, watching the budget papers just really show us so much about a system that is pouring money into the acute care setting and ripping money from other parts of the system to do it. And people are so focused on their individual area that they can't see other parts of the system that are suffering in the process. And the industry has to remember it has one of the most privileged positions in the country. It has bipartisan support for listing every recommendation.

Paul 51:02

Yeah, it gets a recommendation that it gets listed.

Felicity 51:04

And the money is found one way or the other. At some point in time, they always find the money, uh, whether it's coming from savings from this or savings down the line or at the Medicines Australia butt breakfast, Mark Butler said you're not offsetting the cost of new listings at the moment. No. No.

Paul 51:21

And you you know even better than I do that's not true. They haven't been for a long time.

Felicity 51:26

And so I guess that's also when you're going into these negotiations. There is plenty of funding, actually, because you have bipartisan support. So what is the problem that you're trying to fix? And I think as I've said to and been reported in other media, that there is mutual self-assured destruction on these delays at the moment. And both parties have to take accountability for that. Some of this is government and some of this is industry, and some changes need to happen. And providing the environment in which to do that is going to be very important.

Paul 52:03

Yeah, this is the Overton window that needs to shift, but I completely agree with you. Funding is not a problem because it's it's a long-standing bipartisan political commitment that we find the funds.

Felicity 52:14

It's why even in my long ago history being in the Department of Finance, so we used to roll our eyes going, Oh, these guys just get to list everything. Any recommendation we had to find the money.

Paul 52:24

And we used to say it was going to cost 9.9 million and it cost 109 million.

SPEAKER_01 52:29

So this today is all your fault, Paul.

Paul 52:32

Just saying, No, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no. That's funny. Uh one last thing you're gonna get one of those Ferrari EVs that everyone's loving.

Felicity 52:42

Oh, you sent me that.

Paul 52:43

Well, I That looks like a Nissan Leaf.

Felicity 52:45

Well, but you know what I thought was that actually Ferrari should have gone to the PBAC and had a HTA assessment, and it's like me going going, here's my statin and here's my biologic, here's my $20,000 car, and here's my $100,000 car.

Paul 52:59

$900,000.

Felicity 53:00

$900,000. Yeah, here's my $20,000 NIS and leaf, and here's my $900,000 Ferrari that looks like a NIS and leaf, has the same colour as a Nissan leaf, has the same body as a NIS and leaf, and it's an electric vehicle like a little leaf. And to take that advice, I watched that um online session on explaining how to how an HTA process works. I don't think Ferrari is gonna get listed.

Paul 53:23

I'm not I didn't name the narrator, but the one where so it was it was even better. Remember that chart you did on the H the post-market review process, which you obviously did on the morning of estimates, and someone had a box and an arrow, and then a box, and then an arrow, and then a box, and then an arrow. That's how they did that.

Felicity 53:42

Sorry, I'm gonna correct the record there for you, just because I have never misled the Senate. Never, ever, ever. I have never misled the Senate. And my point is, we did that. We got it signed off by the AMWG Working Group. That that flow chart was what they wanted, and that we were putting it online. But I have a theory about that.

Paul 54:02

Yes, yes, I have a I have a theory about that Ferrari EV. Have you heard that Lamborghini said we're not doing that? And Porsche pulled right back. I reckon it's Ferrari saying, We didn't EV, no one wanted it.

Felicity 54:15

Yeah, it's part of your environmental branding.

Paul 54:17

Yes, like we did one. Like, what are you talking about? No one bought it, so like what are we gonna do? We can't build a car that no one wants.

Felicity 54:23

Maybe that's secretly what F1's been up to. They did these crazy rules that show that it's like Mario Kart and the cars don't work and they said, Look, we tried it.

Paul 54:29

If but nobody wanted it. People haven't seen the Ferrari EV. It must be one of the ugly. It's that you would not recognise it as a Ferrari. It is one of the ugliest cars. It's like it's been designed by a five-year-old child, and it is deliberately ugly. It is weird that weird blue colour.

Felicity 54:48

Yes, so that you don't confuse it with a Ferrari.

Paul 54:50

Yes, they don't ruin their access.

Felicity 54:53

And that's the thing. There's two ways to this. You know, when Prius started with all those electric vehicles, they got in a lot of trouble, hybrids, because people wanted to, they wanted to value signal. I'm driving a hybrid. Whereas I think anyone who owns a Ferrari and AMWG or a Porsche says, I do not want anybody to think that my car is anything other than an actual Ferrari or an actual Mercedes or an actual Porsche.

Paul 55:16

Yeah, they they I'm I'm convinced they're doing it deliberately. They're doing they they've done this to say, oh, we tried. What are you talking about?

Felicity 55:25

Nailed that break.

Paul 55:26

Their share price dropped 8% or something. The Italian industry minister came out and said, What are you doing? They've tried to get the Pope. Did you see them put the photo of the Pope? The Pope we issued that weird thing this week where he talked about AI. Government needs to take over AI because government's always guided guided and been behind innovation. Can someone give me one example of where in human history government has guided and been behind in innovation? Like, give give give me one. Give me one. Maybe I don't know, the atomic bomb.

SPEAKER_02 55:58

Yeah.

Paul 56:00

Maybe. I mean, you people might say the moon landings, but that was all private sectors.

Felicity 56:04

I was gonna say, I think the thing is that what I think sometimes, and perhaps the Pope gets confused, where government might invest in public-private partnership kind of things where you're allowing the private sector to do the innovation. And this is, you know, what does the pharmaceutical industry do all the time? For every you innovative you invest and you research and you trial and you fail until you find something that gets right. But we've got to say to ourselves, Australia's record, for example, on commercialising anything that it comes up with has been pretty low. And I think that's where people confuse, where governments invest um particularly in in research. And I really hope we can have a good chat about that next week, where uh investment in research is being used as a pseudo-investment in healthcare, and it's not it's an investment in the education and and real job sector of um our institutions as opposed to immediate health care for the community when our primary care system is is breaking.

Paul 57:02

Can I just end on policy incoherence and the issue of commercialising medical technologies discovered in Australia that one of the changes they're making is to limit the duration a company can claim the cash component, the RD tax incentive to 10 years.

Felicity 57:17

Yeah.

Paul 57:17

This is a massive issue for the biotech sector because most of these companies are pre-revenue for around 15 years.

Felicity 57:24

Yeah, I know.

Paul 57:25

And so after after 10 years, it becomes a not non-cash benefit, which is virtually no benefit. The beauty of the RD tax incentive, and it's why so many, so many early stage companies actually read domicile to Australia, including from Hong Kong, Israel is a big one. They they come here to access the RD tax incentive because it's non-diluting capital. So rather than having to do constant capital raises and diluting your existing shareholders, you can actually use that RD tax incentive to fund it. These are companies with market caps of five, six, seven, eight, nine million dollars for a long time. And these innovations they end up being T-Lex, they end up being urine. And this this to me is a massive sleeper issue.

Felicity 58:08

Uh and again, going to get caught in everything else that's going on.

Paul 58:12

Plus, that's before you get to the CGT changes, which are gonna massively gonna impact people who put their absolute lives on the line in these early startups in biotech, which I have to say is traditionally really not a great investment. If it pays off, it pays off big time. But most of the time it's grinding hard work for year after year after year. To say that after ten years you no longer get that's just gonna that's just gonna create a massive valley, a ditch for these companies in an environment where the the the the government's talking about the importance of commercialisation and translation.

Felicity 58:46

Yeah.

SPEAKER_02 58:47

It makes zero sense.

Felicity 58:49

So before we finish up, there's two things I want to comment also that have happened at estimates this week, and it's great for the country to be having a debate about um women and men having their own safe spaces. And well done, uh Senator Cash, for stepping through the issues and how the law is doing harm to women and their right to be able to have their own safe places and spaces, and some of the concerns that were raised with the domestic violence, refuges, etc., and how the law can be a real ass and desperately needs to be fixed. So I want to thank her work in prosecuting that, and you can look at the drama of it, but there is an important legal issue here that needs to be in place to protect everybody. The second thing I want to call out is uh Senator Henderson and her extraordinary prosecution that she continues, and I encourage people to read it or watch it to calling out the permeation of anti-Semitism in so much and what is going on in this country. And again, Paul, my apologies to what I can say is happening to you online again. But we have to listen to those senators who are saying both can exist, you can have free speech and you can call out racism because anti-Semitism is racism, and we have to stop conflating and we have to stop pretending that only one can exist above the other. Free speech does not give you a right to be racist, it does not give you a right to be anti-Semitic, but we've also watching what is going on in these Royal Commission statements, and it is everywhere. It is absolutely in everything, in everywhere. And we, as the silent majority who don't believe in this and don't believe it is right, we have to take a public stand. We have to be more assertive in saying this is not good enough. We have to support senators calling out the behaviour, and we have to ourselves make submissions to the Royal Commission to say this is not good enough. This is not about Jewish community having to defend themselves. This is about the Australian community demanding something that is better and fairer for everybody who lives here.

Paul 1:01:06

Yeah, um Yeah, very well said, and thank you for saying that. Um I think I'd be speaking for a lot of Jewish people to say that their relationship, our relationship with this country is pretty broken at the moment. And you only need to watch the hearings at the Royal Commission and read what has subsequently happened to the witnesses for confirmation of the urgent need. So all those people who are mocking people calling for a Royal Commission a few months ago. Senator Cash was quite extraordinary in that exchange and obviously a very good lawyer because she deconstructed the human rights commissioner over that issue in five or ten five or ten minutes. And yeah, it was amazing to watch. And it was shocking. The answers that the commissioner was being forced to give were shocking, I have to say.

Felicity 1:02:08

Because that is the law, and so something has to change.

Paul 1:02:11

Yeah.

Felicity 1:02:12

Um, so yes to to those people that sent me the the clips on that to read. I thank you very a watch. I thank you very, very much.

Paul 1:02:18

Alright, so you're gonna rush out and get your Ferrari EV, drive it off a cliff, which is where it belongs at the bottom of a ditch.

Felicity 1:02:27

I think I'll just call an Uber, thanks, Paul.

Paul 1:02:29

Sorry, well, I'll probably be Uber will probably be using them soon. Just the ugliest car, but when you're getting the pipe out to try and promote it, like there's no prayer in the world that's gonna get this car for Shira. So anyway, thank you, Felicity, and uh it's been a couple of weeks, as always. I really enjoy it, really enjoy the conversation. The listenership is just really growing, and that's that's that's fantastic. Keep the feedback coming. We are gonna be doing some video.

Felicity 1:02:59

Are we?

Paul 1:03:00

Yeah, yeah, yeah.

Felicity 1:03:00

So who are you doing that with? You've already agreed. I have not agreed. I'm I I'm a good advocate too. You can't verbal with me.

Paul 1:03:10

All right, okay. Well, we'll talk about it later. Thanks for listening. Thanks everyone for listening.