UNKNOWN: 0:03

you

SPEAKER_01: 0:09

Hello and welcome to the Dispatched podcast, Week in Review. It is Friday the 5th of September. Who can believe that it's September? My name is Paul Cross. I'm delighted to be joined by Mark Cahos, Felicity McNeill, PSM.

SPEAKER_02: 0:22

Hi, Felicity. Hi, Paul. You've had a busy week up on the hill. I missed you.

SPEAKER_01: 0:27

I know. It's like a socialising. I'm not used to it.

SPEAKER_02: 0:30

It's nice to be invited to things.

SPEAKER_01: 0:33

You should enjoy the moment. Well, at some point they're going to stop

SPEAKER_02: 0:37

inviting me. Oh, you've joined my team.

SPEAKER_01: 0:39

Yeah. I thought they were quite good. I thought the Rare Cancers Australia report launch was very good. I thought their CanForum was interesting. I thought they had a lot of really good patient perspectives there. One which I– I mean, all of the patient stories I feel very deeply.

SPEAKER_02: 1:02

But from what you told me about it– It was the same thing that we saw at Farmers in 2020 and 2021, which is without diagnosis, there is no treatment. Yeah. Before we even get to the lack of access to treatment.

SPEAKER_01: 1:17

Yeah. So the Rare Cancers, CanForum, there was a lot of conversation about issues with diagnosis and particularly women being put off. And that's obviously a problem. We had a fantastic presentation at the CanForum from a representative of genomics in And that was amazing what they're doing. And then we had the Genomics Australia presentation, which was an org chart. And look, I'm not being unkind to the commissioner. What a job title that is. They've got an agency and a commissioner. She's been given$30 million over four years, which…

SPEAKER_02: 2:01

Is less than we're paying Nauru to take convicted felons,

SPEAKER_01: 2:04

yes? Is nothing. And there's really… Nothing specific about... integrating genomics into the health system. I gather that's what they will do, create a framework for that. And it is challenging in Australia because of the constitutional split in the health system. And so the states do a lot of the service delivery.

SPEAKER_02: 2:28

Yeah, but once you put something on the NBS, everything works.

SPEAKER_01: 2:31

I'm not real– I don't know why we need an agency within an agency.

SPEAKER_02: 2:34

Well, we've had this– I mean, seriously, this stuff has been going on since 2008. So, yeah, look, we can have more process. And I think it's also that, like in the novel Technologies Inquiry, where everyone felt that they needed their own agency or their own body to therefore somehow bureaucratically represent them. And I get that. They see that if you have your own branding and your own badge, maybe somehow that gets you further up the food chain in respect of reform of the health system. But that's kind of really not how it works. And I think, and I know you want to talk about your experience at PharmOz, but you need to understand that there are these really strong HTA systems in place and you kind of got to attack those and having a separate body that sits three spaces out, just ask Cancer Australia and how their universal screening for lung cancer, which isn't WENT, a very well-funded, very influential body, body in the health system in Australia and couldn't get through MSAC and ended up with a diagnosis tool for people who've already been smoking for so long. It makes perfect sense to actually do a lung.

SPEAKER_01: 3:52

Yeah, next year's budget I presume is going to have to have a lung cancer screening awareness campaign because no one's going to have been, won't be used that much because it's very hard to qualify for. And look, to me it's a bit like one of those Russian dolls called, like the Matryoshka doll or something. The doll inside the doll. It's like when a federal government creates a specific agency focused on building skills or building houses. You know, there's going to be less skills and less houses. Yeah. The fact is that when it comes to genomics, there are some organizations just getting on with it, and you see that with Omico. And they have some funding, obviously, but they're just getting on with it. They are putting it together themselves. And yes, we need some kind of political leadership to make this happen. But they've had that in the UK for 10 years. And to me, the creation of an agency is when you want to give the appearance of doing something, much like an HTA review.

SPEAKER_02: 4:52

Yes, yes. Well, we didn't doubt.

SPEAKER_01: 4:55

I thought FarmOz– the horizon scanning thing– Yeah, okay. When it's

SPEAKER_02: 5:04

being read by the department, you know

SPEAKER_01: 5:06

where it's going. Pharma was interesting. I think that replaced the old dinner, which is the most boring night of the year.

SPEAKER_02: 5:16

Yeah, but I at least got an invite to that.

SPEAKER_01: 5:19

But yes. But Pharma itself I think is really interesting because the company is set up and they work with patient groups to set up these little stands where people go and you can go and get tested. And I think Roche had a really good one, had these– about macular degeneration that was interesting and AZ and I think Abbott Did the chronic kidney disease.

SPEAKER_02: 5:42

With AstraZeneca.

SPEAKER_01: 5:43

Yeah, urine testing. I thought that was interesting. So there's some good stuff. It was all really good. There was a big stuffed llama there from Argenix.

SPEAKER_02: 5:55

But I think that's really important. I mean, of one of the many things I think I said on the podcast last year, I think that was Kieran Schneemann from AstraZeneca at the time who started that first thing with actually lung cancer and bringing the actual lung foundation in to present the human path. patient focus, not he's big pharma selling their wares, humanising health, as they say, or actually genuinely putting the patient first and front and centre in the conversation, which I know you then want to go on and talk about is anything but which is happening. So there seems to be this great cavernous divide between what was obviously presented as a roadshow up at the parliament versus actually what's happening on the ground in the policy and and program development.

SPEAKER_01: 6:42

Well, let's talk about this because the minister came and spoke and for the 24 hours leading up to this event, there was a lot of talk about he's going to announce something, he's going to announce something, he's going to announce something. Canforum the previous day, which would have been a better place to announce something until you found out what he announced. Because most of the people at Canforum were actually patients. We have to respect that. And on the experience of patients actually sharing their experience, we have to really respect that. Yes,

SPEAKER_02: 7:10

you

SPEAKER_01: 7:23

do. We're going to get a review of the PBAC guidelines. I don't know what they've been doing for the past three years with an initial focus on, guess what, the comparator and the discount rate. They reviewed the discount rate three years ago. That's what I wrote this morning. It was meant to be changed in July 2022. And the PBAC said no in 2022. So are they going to have a role this time? Surely not because clearly they've prejudiced the outcome with their previous view. And a review of the pathway for codependent technologies Now, the streamlined pathway for codependent technologies was just like 15 years ago, 2011. Yeah,

SPEAKER_02: 8:04

2010-11,

SPEAKER_01: 8:05

yeah. 2010-11. And it's been reviewed in 2016, 2018, 2021. And now, as a result of three and a half year HTR review, we have another review of it.

SPEAKER_00: 8:15

Yeah.

SPEAKER_01: 8:15

And I mean, does anyone wonder why we are so cynical? I mean, and honestly, when he said it, I literally burst out laughing. I'm pretty sure I won't get invited back because I was just going around to everyone saying, you've got a guideline review you must be so excited you've got a guideline review you must be so excited what the hell is so you've got an HTA review which was announced in 2021 it was established 12 months after it was announced remember they tried to put Peter Boxall

SPEAKER_02: 8:42

yes

SPEAKER_01: 8:44

on the review

SPEAKER_02: 8:45

the industry can thank us for that

SPEAKER_01: 8:46

one John Young

SPEAKER_02: 8:47

stopping it

SPEAKER_01: 8:48

formerly of Pfizer very senior global executive in Pfizer and the chair of medicines Australia many years ago was originally the industry's representative of the review now I'm I'm convinced he attended the first couple of meetings and just went–

SPEAKER_00: 9:01

Train

SPEAKER_01: 9:02

wreck. He checked on getting out of this. He stepped out. And they spent two years reviewing something. There's a final report and there was an options paper. The final report had 50 recommendations. And the first one's– to be implemented are reviews more reviews and more process so when I stand there and hear the minister announces that at the end of that review process plus six months of an implementation advisory group we get a series of new reviews of things that have been endlessly reviewed for years if not decades I'm not going to pretend it's a good outcome I'm not going to stand there and clap like I'm a circus monkey you know it's just absolutely ridiculous and thankfully there wasn't a lot of There wasn't a lot of clapping. I think most people shared my view. It's just that most are also polite to keep it to themselves. And I'm not. I've had enough of this. We had several days this week, during and before that announcement, where we heard patient stories. We had one young woman... who flew from Tasmania, who was diagnosed with an extremely aggressive form of cancer, had to pay initially for the treatment because it wasn't subsidized. The company is now providing it to her on a compassionate basis. She was there with her husband. She flew from Tasmania. Now, anyone who's tried to fly from Tasmania to Canberra knows that that is not easy. And then we had the next day at the actual CanForum event, a young lady lady who flew from Byron Bay, again, not easy, who is paying$8,000 out of pocket for a TGA approved medicine. I'm sorry, the lack of respect for their patient experience, for a minister to come and say, I'm going to announce a review of some technical inputs, which have been reviewed endlessly for the past 15 years. I'm not going to accept that. It is not a legitimate process. We have to start nailing these politicians and say, you know, you were a these people to die. You know, it's not suffering. You are basically saying that we are going to push these off into reviews whilst these people suffer and in many cases die needlessly because they are denied access to approved therapies because you are not getting a good deal for yourself. You treat our lives like we're a car. It's a car purchase or a house purchase. And I'm just not having it. And we have to stop pretending that this is acceptable because it is not

SPEAKER_02: 11:47

so welcome to the club of frustration and I'm saying that facetiously because you've been part of this club for a long time and it's interesting so I got a heap of text messages from people like you who are doing OMG and like tearing their hair out emojis and then I got a few things which is isn't this great and I was like what oh this is good we should you know we should be grateful for what delay like you're literally endorsing delay so I think it's a problem I think and I've said it many a time I go back to then Prime Minister Scott Morrison when he shut this whole country down and he pumped money into everything and he paid for people to stay home and he bought the most expensive things and he stood on the 730 reporter sat and said every life has to be saved Australia will agree with us nothing is too much to save a life and i think you and i were laughing about it at the time going sorry have you seen your hta system like that is so not what we do we do actually say that the purchase process and getting the best deal the cheapest deal the bargain basement you know deal is more important than the health care of the community it is more important you know i've got newborn blood spot screening you're talking about patients who are living with a terminal illness trying to fight for access you know again you talk about these stories it's Nicole Cooper for us over and over again a woman who fought with every fiber in her being to try and stay alive with a lack of a diagnosis and a lack of access to treatment and it's not just for cancer although cancer really focuses our minds because it is a matter of life and death that you know I want to talk about what's happening to RK Crosby this week and that's there is someone who is living with a debilitating chronic disease and sacrifices her personal privacy to try and advocate for change, not just for herself but for others, and is told by a health system that, you know, ironically the migraine's in your head and you just don't really need it and we don't really care that this stops you from working all the time and you can use something else and if you can't use that one, well, you can just pay for it yourself So someone that literally has to sit there and work out how many hours, and I kid you not, she works out how many hours do I have to work this week to buy my medicine. So when we've got a$25 copay, that's fantastic, but not if your medicine is not on it, not if your medicine is not available. And in chronic disease, it's even worse. I have greater hope that we might actually get a breakthrough in rare cancers because it's small populations. There is no excuse for the government not actually actually acquiescing on this and saying enough PBAC. I'd like to remind the minister, once a molecule is listed on the PBS, you do not require any further advice from the PBAC or anybody else to change that indication. Mark Butler could walk into there today and say, that PDL1 thing that was a train wreck, bugger it. I'm fixing it. I'm listing it. I don't believe that you should be doing it for non-ARTG indications at the moment because I think that's a right and a respect for both the safety of people in the community and actually a decision for companies. But if any of those drugs are listed for any of those indications, there is no excuse not to solve this tomorrow. And there's nothing like a minister saying enough, like he has on the women's health issue, like he has on the PBS deferrals. He needs to get bolshy with his committees and say, stop.

SPEAKER_01: 15:37

Yeah, but even– No,

SPEAKER_02: 15:39

let's have a guidelines review.

SPEAKER_01: 15:41

A guideline review. Now, your experience of this would be more racing than mine, but if he wanted to change the discount rate, he could do it tomorrow. He wouldn't even need to– I mean, that's just a guideline decision, isn't it? Yeah,

SPEAKER_02: 15:53

it's not PBAC's rules.

SPEAKER_01: 15:54

Yeah, but he wouldn't even need to go to Cabinet or anything on that because it doesn't have any cost impact.

SPEAKER_02: 16:00

Well, it does, but it doesn't in respect to that PBAC said if you change that, you have to change something else. Yeah. So if there's a potential risk, but it is just a guidelines review. It's a guidelines review. Now, the department and finance will argue that in changing the discount rate, you're going to make medicines more expensive, which is therefore going to have a fiscal impact and so therefore it needs strategic policy approval. And PBAC said no. But it didn't say no. It just said if we do this, you have to change something else to equal it out. And why

SPEAKER_01: 16:30

are they being asked in the first place is my question because they're not independent to operate as they see fit.

SPEAKER_02: 16:39

No, well, the whole idea of a minister representing the community is to actually send that message to his committees. These are the priorities for our health system, for our community. And I think he's sending very mixed messages. So when he cracks a wobbly about the PPS deferrals, because we all get a petition going and he realises, oops, the community's upset, he turns around to them and says, no, I'm not taking your stupid advice. You will change. You will do this. and you will do this because you work for me. Yeah. And that's fair. But on something like this with the PDL1s and like getting up and saying, well, I hope that the next one in September, you know, we get a better outcome. Well, actually, no. Bang their heads together and say, that's actually not good enough for me. And I'm actually choosing, I'm of a mind to do this. So you tell me how to do it. Because ministers can do that.

SPEAKER_01: 17:28

Yeah, of course. You and I have seen it up close as ministers calling PBOC chairs and saying, what's going on? Yeah. And that's generally all a minister needs to do, right? Because PBO are not independent the ministers are unhappy with them they can get rid of them tomorrow they can get rid of them today in some ways I think the minister has it's fair for him to be a little bit confused Okay, so I understand that the industry met with him prior to his announcement at PharmOz on Wednesday. Did anyone in that room say, you're announcing more reviews, Minister? I think you're probably better off saying nothing if that's your plan because you're only going to antagonize people. And the patient groups I spoke to, particularly a couple, were absolutely furious because they felt a little bit put off too at the Camp Forum event when he said, I'll announce something more significant at the medicine Australia tomorrow. It's effectively what he said. No, but it's...

SPEAKER_02: 18:25

No, but what a disrespect for patients. And this is the frustration, which is then it's also, we are as patients reliant on the industry who have incredible access and influence, which is why I want to talk about Senator Pocock's push at the moment, to give that feedback. They could have given that feedback saying, do not do this. This is harm. You know, that audience should not have clapped. You should have all just gone dead set quiet because at the moment when patients are feeling disenfranchised and missed out because you've got a seat at the table because you've got the access we get the crumbs of whatever you agree to and that has to stop because as patients we are not happy with this system this is a system that can reject the drug I've got no right of appeal to it because it's not covered by the ART like I said I can appeal an NDIS decision a social services decision even an immigration decision but I can't appeal the fact that MSAC and PBAC say that babies shouldn't be treated or your cancer is not worth treating. I don't get to say, sorry, can you review this and the basis on which you made the decision? I just get told, sorry, that's between us, customer and client, and you just get to see what you get in the hotel later on. It's really wrong. And if patients are feeling upset about that, then they should.

SPEAKER_01: 19:45

Well, you know my analogy, right? We don't need HTA reform. We need institutional reform. The system is amazed with no exit. When you and I were talking this week, I sort of described it. It's like your Qantas status.

SPEAKER_02: 19:58

Yes, I think this is a good analogy.

SPEAKER_01: 19:59

Yeah, so sometimes you make irrational decisions to maintain your status with Qantas. So for those of you, you know, I try and travel. I like travel. And so when I fly to Europe… You

SPEAKER_02: 20:20

don't sit at the back of the plane.

SPEAKER_01: 20:23

Anyway, there is no rational choice that leads you to choose Qantas.

SPEAKER_00: 20:30

Correct.

SPEAKER_01: 20:30

Because it is absolutely terrible. Correct. It is terrible. But their lounge is quite nice. Correct. And they've struck on this, particularly the international, the first one in Sydney. It's nice. It's lush. Yeah, it's lush. So you have this sort of– I don't know if they were the first to do it, but these airlines strike on this– status thing and you work hard to maintain it even when it leads to irrational choices like choosing Qantas when virtually any other airline

SPEAKER_02: 21:06

is cheaper

SPEAKER_01: 21:06

and better and it's a bit like that with our institutional HTA framework is participation is such a privilege People are willing to pay any price to get in that maze with no exit. Yeah. And it leads them to say things. Now, LinkedIn, I think it's LinkedIn should be LinkedIn AI. I'm pretty sure people are using ChatGP to write most of their posts on LinkedIn these days. But some of the crap that people post, you sort of go, were you at the same event as I? Did you? And like I said, I was very loud, like talking down what the minister announced because people Everyone knows it. Let's not be North Korea, guys, and just sort of clap. Everyone wants to be sure that they're seen to clap. It's a terrible announcement. It was absolutely deplorable and it was really disrespectful to the patients who travelled to Canberra this week, many of whom are fighting for their lives.

SPEAKER_02: 22:10

Yeah, and so we're going to delay something for another two years so that, you know, on them.

SPEAKER_01: 22:15

We're going to review something that's probably been more reviewed Let's talk about those reviews. Why don't we try something easier? Let's try Middle East Peace maybe because that's probably easier to negotiate than what this industry has been trying to transact through this system for all these years.

SPEAKER_02: 22:33

Yeah, and this is why I'm going to get to the RK thing again, but you're right. People see the goal is to participate. The goal is to be invited. The goal is to be in the room. The goal is to not upset. How many times of people tell me, oh, we don't want to make the minister upset because, you know, we might need something. And I get that from patients and I get it from industry. And I'm like, seriously, who cares? Like, if you are trying to make a point and you are actually fighting and advocating for patients, then my job is to make you uncomfortable sometimes. And I fully respect the minister on this because I make him uncomfortable sometimes and sometimes I actually support him. He doesn't, you know, take any umbrage with me. He doesn't knows that's the agitation and that's needed. If we aren't canaries in mind canes, if we don't tell a minister not good enough, then they assume it is good enough. And we should be very comfortable in calling out behaviour. And so that's why I want to also talk about what's happening with RK.

SPEAKER_01: 23:33

Oh my goodness, that's one of the most disgraceful things I've ever seen. So you describe it, what happens.

SPEAKER_02: 23:38

So RK is calling for a Royal Commission on the PBC and the PBS about just how everything is broken, that the delays, the hidden risk shares that are actually effectively plummeting the prices, which stop people having access. Do you know what? She's actually calling for everything that people are worried about and concerned about in the health system. She said, I want a Royal Commission. Now, that's her solution to it. And I've got to say, after being told that the best announcement this week in Parliament was a review, I think she's probably on the right track, because if it's that indoctrinated, then something needs to be blown up. But it's In doing that, she's then within the first 24 hours being given feedback from a CEO of the patient group saying, can you please withdraw this because the department doesn't like it and we've got some grants funding in the process and we don't want to jeopardise that and we're all worried if there's a Royal Commission, we'll lose our funding. Now, let's talk about the lack of ethics in one patient group trying to pressure another patient group's right to free speech about what is worrying them about their healthcare. That's appalling. Second of all, if those are the messages that the department is giving, and I fully suspect they are, as someone who's worked with people in the rare cancers, sorry, rare diseases space, my apologies, where patients have said to me, we're frightened to say something because we've been told, well, you know, it might jeopardise your access to the medicine. I mean, that's coercion at best. It's corruption at worst. Like, how dare you?

SPEAKER_01: 25:08

What's both?

SPEAKER_02: 25:10

Yes. But we have a system here where patients are turning on patients for fighting for their rights to act For patients who are being denied access to a medicine now for almost a decade, for patients that were actually, you know... Wow. Wow. is broken and it needs massive reform. And she's right. You've just done a three-year HTA review, now into the fourth year of it, and where has it got anyone? Nowhere. No patient, no drug company has got anywhere. So why shouldn't she ask for that? And why is another patient group telling another patient group to stop talking?

SPEAKER_01: 26:19

Well, it's the Faustian Pact, which euphemistically could be described as a deal with the devil. And there's all those ridiculous things to go on in our system. Like lobbyists telling companies not to lobby because they're going to upset the ministers. Okay, that's expensive advice to do nothing. People, if our system is truly that punitive, first let me say that when government tells you that media and activism doesn't work, they're saying that because it does. Yeah. Because it does. They want you to stop doing it because it makes their job difficult because they might have to actually do something. Don't assume that that these officials are acting in the best interest of the system. They have a vested interest like everyone else. Yes. And they see what's in their interest very differently to how you might expect or how you might think.

SPEAKER_02: 27:09

They hate scrutiny.

SPEAKER_01: 27:10

Yeah, they don't like scrutiny. We should talk about the disgraceful new FOI laws.

SPEAKER_00: 27:15

Mm-hmm.

SPEAKER_01: 27:17

I mean, because FOI, talk about broken. But I think if we truly live in a system where organisations are going to lose their grants because of scrutiny, or patients are going to lose access to a medicine because of scrutiny, then everyone, we've got a much bigger problem than you think. If our system is truly punitive like that, then we have a massive problem. We have an absolutely massive problem. My frustration this week is the complete disconnect between the institutional discussion where reviews of things that have been endlessly reviewed for years, just going around in circles, the maze with no exit, is considered a positive outcome. And as I said, in fairness to Mark Butler, he's probably been told that it was really good. And he probably expected to get cheered. I mean, I may have been the only one who was laughing out loud going, oh, guideline review. I was going around and everyone was saying, you must be so excited you're getting a guideline review. What have they been doing for the past three years? I mean, why can't he just reduce the discount rate?

SPEAKER_00: 28:20

Now,

SPEAKER_01: 28:22

the problem he's going to have is that the PBIC will ignore him. But the These are massive issues. It's frustrating. It's all related to the same thing where we all have to stand there like circus clowns or circus monkeys and clap, you know, the monkey with the, you know, the symbols.

SPEAKER_00: 28:40

Yeah.

SPEAKER_01: 28:40

We all have to pretend that a bad outcome is good and I'm just not going to do it.

SPEAKER_02: 28:45

Well, it's why I so enjoy working in the NDIS space because that's not what participants do at all. So at the same time as the guidelines reviews have been announced for the at PBAC, which I'm sure will flow through to MSAC, we had the announcement of all the new advisory committees that will evaluate products and services on the NDIS. We've got like about 12 different sub-evaluation committees going on there.

SPEAKER_01: 29:12

More wins for consultants.

SPEAKER_02: 29:14

Yeah, more wins for academics.

SPEAKER_01: 29:18

I did see the list. A couple of people I really admire. And I'm not saying I don't admire

SPEAKER_02: 29:22

them, but what I'm saying is that the participant group is demanding to know what does this mean and how does it work and where does it fit in for our access to support services. So what I'm trying to highlight here is that that's been done with full consultation. That's been done where the participant community has a healthy scepticism and challenges the system, challenges it to demonstrate evidence-based. The evidence-based is the flip. So in the health system, everyone's got to try and put stuff in and then the health system decides if this is what we'll do but the way the nds started and you know it does need reform it really does need good sustainable reform but they are held accountable to the participants in the way our health system is not held accountable to us and i think we need to learn more from that so if that had been an ndis event and the minister had tried to say that a riot would have started because they would have just openly said this is codswallop this is not good enough and i think that we need to learn that more because the NDIS is emboldened and it is participant-led, not industry-led. And when you actually allow patients to speak freely, to ask for a royal commission and not threaten them, that's a good thing.

SPEAKER_01: 30:44

Well, yeah, well, there are cultural issues within our HTA institutional framework. Yes. Because people, it's like a cult. It's like Jonestown. Everyone stands there and they go up and drink out of the Kool-Aid barrel. Have you seen my cup of water? It's that bad. Everyone pretends the system is really good. I'm sorry. You only had to sit through these patient presentations this week to know that, no, it's not. It's not good enough. Now, obviously, the NDIS needs reform. But culturally, it doesn't. It's about the participants. Now, I know you look at the board of the NDIA and there's a few more ex-finance officials than there used to be. And they're putting economists and everything in there. And I get it, right? Obviously... It raced off pretty hard to put the– I know I've used this ad nauseum. It's very hard to put the toothpaste back in the tube. And they're not really going to be able to do that, but Mark Rutler's got obviously a lot of work to do there. But they'll get there. And I just think this mass gaslighting of patient organisations around our health system, they're meant to think that we're going to do a review of the codependent technology,

SPEAKER_02: 31:56

by the way. What? What? I'm so excited. What?

SPEAKER_01: 31:58

I feel like this is back to the future. Have we gone back to a speech in 2010? Well,

SPEAKER_02: 32:03

it is like a bottom drop. We've done this

SPEAKER_01: 32:06

before. We've done this before. But that is exactly what's happening is that we're just going to keep everyone busy. I described it on Tuesday night. The people was like, oh, well, he's like feeding the chooks. He's just keeping everyone interested and engaged.

SPEAKER_02: 32:18

Well, it's a bit like when the National Medicines Policy Review was delayed, delayed, delayed and then started and we at Better Access again partnered with Nicole Cooper about the fact that there was an inner sanctum that worked on it, worked on it and then they spat something out and said, and now in January, you guys have got two weeks to respond to this. But that's what they did on the HTO review final report, remember? Yeah, but I'm saying when they did that and we actually got very vocal and said, right now there are seven different things out of health department alone that require us as patients, volunteers, to respond to, to try and shape what is happening to our health system, because to not participate could be catastrophic for our access. And you've added this on knowing that we simply don't have the time and effort. Now, full respect to the then minister, when we raised that issue, he insisted that the department extend the timeframe and understand that. So again, when patients actually say something, things happen, but it's this constancy of being seen to consult. And here's the pro and this is what you'll get to do. And if you're in part of the bigger inner sanctum of we're working on this with the department, you get a little more visibility, but usually you're not allowed to share anything. But meanwhile, the patients who are then waiting for the moment to participate get absolutely inundated with, you know, you've got time to consult, you've got time to this. You know, one of the few good things that we have, at least from MSAC, is actually better at than PBOC is the amount of time that they consult with the consumers and how much information they give you to allow you to consult, that's one of the few things I'd ever say positively about them. But they do at least try to do that, to personally reach out to individual patient groups and say, this is here, would you like to contribute? Here's some information, what can we do? They do that very well as opposed to the PBOC process, which is good luck, there's a three-line

SPEAKER_01: 34:22

sentence there. Senator, we have a consultation hub and we... That consultation hub is an absolute abomination. But if you think about all through this process, it's just been farcical. Greg Hunt's last decision as health minister was to attempt to appoint Peter Boxall to chair the HTA review as Scott Morrison was driving to Government House to call the election. Why was he doing it? Because he knew. Well, Medicines Australia accepted it for some reason until a few people decided that you have no right to accept This is absolutely atrocious disappointment. And then when they shared the draft terms of reference to a small number of select patient groups on a confidential basis,

SPEAKER_02: 35:08

and

SPEAKER_01: 35:09

even when the final report came out, they had some kind of consumer group, organizations, they allowed them, they gave them some ridiculous amount of time over Christmas and New Year to respond to it. And of course, they created one of the greatest charts I've ever seen, which put the role of consumers is to make HTA, enhance HTA. What? I mean, it's just to me, I just can't, I can't accept any of this. But expectations are now so low that the minister believes, fairly to him, that he can stand on a stage and say, I'm going to rapidly initiate new reviews of of PBC guidelines with an initial focus on comparators and the fucking discount rate. I'm sorry. Oopsies. Oh, no. I'm just– I'm sorry to swear, but– Swear, Justin. Swear, Justin. Yeah, it is literally a dire situation. What was that from Cracker Jack?

SPEAKER_02: 36:14

All those in favour of voting the situation dire. Yeah,

SPEAKER_01: 36:17

I second that. We'll set up a committee. Jeez. That's one of those funny movies. But it's just– I just can't handle it.

SPEAKER_02: 36:25

But I think that the issue– You've been quite exercised about this since you came back from the function. And I think it's because you and I have been articulating this for seven years, five years, four years, three years, two years. And the disrespect, let's be clear. So the minister's made that announcement based on the advice of the department. The disrespect that the department has for this sector and therefore by default the patients that are relying on an outcome from this sector is clear and proven this is an area that they can just keep pushing back on and pushing back on and you take it and the problem is that the patients are suffering in the process and so you and I will get on a rant on this thing and you know I got the feedback that they really like the sort of interjection of some of the funny stuff last week so we better find some stuff to talk about now because there's isn't going well in the negative space but I think and even some others you've just realized how much you've been played and how much the the systems the keepers of the system the bureaucracy is going to lock and load against you and with all the other trade stuff and things that's going on you're entering into a stealth war and you don't even realize it but maybe some people did and I know you certainly noticed it on Wednesday night this is this is the culmination of of where your influence and your capacity to drive change sits. And so unless you do something really different, we as patients are going to be sitting on that treadmill and waiting the two years and our lives will not improve, our access will not improve and lives will be lost and quality of life and capacity to work will continue to diminish because this will be acceptable.

SPEAKER_01: 38:23

Well, I hate to say I told you so. No. Not you. Oh, I know. But when this review was announced in 2021 and everyone was so excited. We lost our minds. They don't do reviews. What? Why would you think this is good? And it has gone, well, even worse than I thought. It's gone actually worse than I thought. And that's saying something. Yeah. But the bureaucracy are very smart.

SPEAKER_02: 38:48

Yeah.

SPEAKER_01: 38:49

Very smart.

SPEAKER_02: 38:50

It's a dark art.

SPEAKER_01: 38:51

They squeeze. I use the analogy today. It's like squeezing the juice out of a lemon. They run the clock through these reviews. to squeeze the life out of your ass. That's what they've done. And you've got to respect the bureaucrats, you know. People say, oh, they're not very impressive. They didn't really say anything. Yeah, exactly.

SPEAKER_02: 39:07

Yeah.

SPEAKER_01: 39:09

Exactly. Exactly. I cite that scene out of Wolf of Wall Street when the main character, the DiCaprio character is sitting with his lawyer and his lawyer says, this is really simple. You're dumb and they're smart. And I hate to say it to people, you've got to start respecting– that being a bureaucrat is a profession. And they are using this process. Like this advice to the minister. Oh, minister, they will definitely welcome this. You know, this is a real priority for the industry. They'll appreciate the rapid action. You know,

SPEAKER_02: 39:40

they've always been talking about the discount rate and the comparator. We can actually do something

SPEAKER_01: 39:45

about that. This is, you know, we'll do a review. The PBIC will do it through the guidelines. Like I can tell you what the outcome is going to be. The comparator thing will be the language change. and they'll say, well, you know, the PBAC retains the right to select the appropriate comparator and they have the full blah, blah, blah. And on the discount rate, it'll be the PBAC retains the right to select an appropriate discount rate.

SPEAKER_02: 40:07

But it will, of course, then also tie in. I mean, the timing is perfect because, as we all know, on 1 July 2026, under the strategic agreement, officially, you're allowed to start talking about the next round of savings and next round of policy reforms. So you start this review, it goes through the now MIEFO budget process, and we're going to have a whole heap of things kicking out of there. And nothing is without design. It's all going to land together at the same time. Yeah. It's completely, yeah.

SPEAKER_01: 40:38

And you've got to pay for the CPA, yeah? Yeah. That's all to come. But you wanted to talk about David Pocock's lobbying code?

SPEAKER_02: 40:47

Yeah. So I was up at Parliament yesterday morning. We actually sat and watched him debate it with himself because no one wanted to talk about it and the government and would just wax lyrical about stuff they'd done on the ruggies. But his point of view is sound and I really support it because someone who signs a register gets escorted through the parliament to try and talk to a senator or a member about a patient issue. He's saying there's nothing wrong with access to this building. In fact, the parliament should hear from all people on all issues at all times. That's actually how it continues to be the people's house. Okay, it's supposed to represent the people. What he's saying is that there are a multitude of companies and lobbyists walking around with the beautiful orange passes and they have a right of access all the time. So, you know, we went to a breakfast for Abel celebrating 40 years of harm reduction, which is a really important issue in Australia. But We're all escorted, you know, can't move, no more than 10 in a group at a time. Meanwhile, there are all these people walking in and out and in and out. And the senator's objections are we should just be transparent about who we sponsor and people should know who has access to our parliament. And the government's hiding behind, oh, it's a privacy issue. It's a privacy issue for someone to know that you have a pass to parliament house. Really? It's a privacy issue for a senator and member to disclose this. A few of them are actually starting to do it. So Senator Pocock's done an Allegra spend Senator McDonald is publishing who they sponsor and why.

SPEAKER_01: 42:28

What's the privacy

SPEAKER_02: 42:30

issue? The government's hiding behind privacy. It's privacy for me to disclose that you have a pass

SPEAKER_01: 42:35

to Parliament House. A legal privacy issue or just a principle?

SPEAKER_02: 42:39

Well, let's see. It sounds like an excuse. It is an excuse. And we've got a code already and it's great. And we were the ones that introduced the lobbying register and things. But it's a bit like I know patient groups that have lodged complaints under the code for the lobbying bill. because um they there were lobbyists who weren't declaring themselves as lobbyists and pretending to represent particular patients and they lodged a complaint they never get told they don't know what happened i mean meanwhile they still can't get access to parliament house but meanwhile the lobbyist continue obviously continues on their merry way so i i i would encourage the sector to support him and lead the charge if you've all got passes own it like support the fact that I have no problems with any companies and organisations having access to the parliament and I think a lot of patient groups should also have access and I think a lot of community groups should but it is actually a fair and transparent thing to say well we just want to know who is walking in and out all the time with free access and it goes to this issue of it was a bit like going to the Aval presentation and one of the co-chairs was talking about this is your house and you know it's your thing and you should feel welcome I'm like yeah but you just charge this patient group all this money to actually host the event. So it's your house except you've got to pay for

SPEAKER_01: 43:59

it. Oh, and the catering is just bad beyond

SPEAKER_02: 44:01

belief. But it's not that. It's the concept.

SPEAKER_01: 44:02

Well, it matters to me.

SPEAKER_02: 44:03

Well, I know it matters to you, but what I'm trying to say is that as the people's house and this is your house and you should feel welcome, but we're going to charge you to come and talk to us and to have an event to do it. And 40 years of harm reduction is very important. Australia took a very early lead on we need a war on drugs, but we also need to reduce the harm that drugs do in the community, whether it's alcohol or other drugs. And we need to tackle that together. And I think it's important to stop and reflect on that as you build all your, you know, the national strategies and where the money is or isn't and the fights between states and territories and the feds. But it reminded me watching that, that it's just, there are some things that are about transparency and it's a bit like, you know, the whole doubling down on the FOI Act. We shouldn't be afraid of afraid of the sunlight. You know, Lindsay Tanner, my former finance minister, and Senator Faulkner, my former special minister of state, always talked about Operation Sunlight. If you can see, we kind of just do a little bit better and we just think about what we do and how we do it and why we do it. And it's a bit like, you know, we want it in the HTA processes, we want consumers in. I really, I wish the industry would support the concept of let's

SPEAKER_01: 45:23

let I don't know. Transparency on this issue seems a no-brainer to me. And it will be a relatively small group of people, probably in the hundreds, who have those orange passes. We should know who they are, who they represent, because they're given a privileged access point to parliament. I don't know how easy the ministerial wing is to access these days. Can they use those? Yeah, they can use those to get in it. So if they're able to walk past the cabinet room and the prime minister's, the entrance to the two entrances to the Prime Minister's office because you've got the front one and the one around the side where the servants go, also known as advisers. Then, because for those of you who don't know, the official entrance to the Prime Minister's office is quite grand. It's across from the Cabinet room. But I think we should know and we should know who's approving those.

SPEAKER_02: 46:14

And they want it extended to not just be lobbyists but for in-house companies. Yes, of course. And I agree with that because, you know, fair's fair that a lot of the funders pharmaceutical sector and the device sector all have passes. I don't think they would care. I don't think they wouldn't mind. They wouldn't mind. But I don't think they would mind because it's also consistent with their ethos about wanting transparency about what's going on in the system with respect to HJC can lead by example. There are some people that really need your help. Most

SPEAKER_01: 46:42

parliamentarians are happy to sign those forms because they're mostly nice people. And if you work for a pharmaceutical company or another healthcare organisation and you say, oh, Senator such and such, can you sign my I think they need two. Yeah, you need two. Two to get their orange pass. I think people are inclined to say, yeah, yeah, of course.

SPEAKER_02: 47:01

Because

SPEAKER_01: 47:02

they're nice people.

SPEAKER_02: 47:02

They are. And the other thing they're asking for, which is where we're so retrograde here in the feds, is the publishing of the ministerial diaries. So Queensland already does it. New South Wales does it. Victoria does it, which is– it's just standard process. Again, the government's going, oh, no, we couldn't possibly do that. It's privacy. It's this, it's that. It's like, come

SPEAKER_01: 47:20

on, guys. Well, just redact the bits. Mike Butler's– his is released for FOY it's half redacted because it's all cabinet and everything so and it shows that he meets with a lot of patient groups and

SPEAKER_00: 47:32

a lot of

SPEAKER_01: 47:33

corporations but no I completely agree with you I mean of course part of the reason that senators and MPs sign these forms is because it's a real pain in the butt to go and collect people and bring them in so for those of you who don't know if you don't have one of those passes you've got to be escorted around Parliament House and the membership and the senators and the staff don't want to do that. So if you're going and meeting them on a particular issue, it can be a bit of a pain. And look, there's so much security around Parliament House now. I mean, when I worked there, there was virtually no security. It was unbelievable. And they put the bollards in, the Mary Manane bollards. And a former health department deputy secretary parked on top of one of the bollards that goes up and it went up.

SPEAKER_02: 48:23

That's what Estimates does

SPEAKER_01: 48:24

to you, Paul. It really stresses the brain out. Absolutely hilarious. But all these color-coded passes. You've got the orange one for the lobbyists. You've got the yellow one for the press gallery. You've got the green one.

SPEAKER_02: 48:34

That's departmental.

SPEAKER_01: 48:36

Departmental.

SPEAKER_02: 48:37

For people like me.

SPEAKER_01: 48:39

Blue one for the ministerial. The ministerial wing. Makes you feel pretty special. Yeah, so on the harm reduction, originally a Neil Blewett thing– And Michael Walker, who's my old minister, you know, you can imagine in the Howard government it was a pretty hard road on harm reduction, but he was very committed to it. And it's pretty much been a bipartisan thing and it's just a shame that it took 30 years to fix the ODP.

SPEAKER_02: 49:12

Yeah, and there's still an awful lot to go there. And I think also what they were trying to talk about was it's become a bit more rhetoric rather than action, so where the funding goes and, again, patient groups that are and aren't funded, which is a challenge. But it also made me reflect on that. I talk to people that when you play with the system, when you push and pull on some things, things pop out and you have to deal with that. If you're not thinking, sometimes you think strategically and you still miss it and sometimes you just didn't even think about it. So, you know, I know we're waiting on the outcomes of the diabetes inquiry. We have a national diabetes services game because we made needles and syringes free to reduce the harms of injecting drug users and the risk of communicable diseases. And the realisation that when trying to help one group in the community prevent harm, you were charging another group in the community who had no choice. They needed to do this to stay alive with their insulin. And the NDSS was born. And I always think that that's an interesting moment. We have a program now, we have all the work that we're trying to look at in diabetes and stigma. You know, don't get me wrong, people with type 2 diabetes feel that they're particularly stigmatized and caught into a particular, you know, or if you just ate more lettuce, you'd be fine, to quote a couple of senators. But this is, yeah, I know. But this is an important issue because the stigma, suddenly everyone focuses on it, but these are still some of the most stigmatized groups in the community. So one of the things that I always find shocking is that people are so frightened of their own GPs and the stigma that they will go to one doctor to get their ODTP treatment and then go back to their usual doctor, their family doctor, and not let them know because they're a mum that's, you know, had some difficult teenage years and doesn't want to risk being seen as an unfit mother and losing access to her kids or being reported if something goes wrong. There's stigma that people split their healthcare because it's so ingrained because most GPs aren't obliged to care and treat this as a mental health disease and for most people addiction is very strongly related to a mental health condition we have so far to break things down to just have a quality of access to health care so it's one that I think the saddest parts of my job at Better Access is listening to the differing parts of the community and the stigma that they all deal with whether it's because you have an addiction whether that's alcohol gambling drugs whether it's you've got type 2 diabetes and people assume it's all your own fault and you don't deserve health care or you've got lung cancer and everyone assumes you smoke too much we are a very judgmental society and I think what we see and you talked about it in some of your articles in the way that our PBIC and MSAC are quite judgmental too about what is quality of life, about what is worth paying for, about what some things are more important than others and they don't stress test that enough with the community about what do we want and because I said if you asked us we'd be saying we need something different.

SPEAKER_01: 52:39

Yeah, no I think that's a point well made. I mean obviously the ADTP reform, in the end it might actually be remembered as Mark Butler's greatest contribution, he may not think that but I don't think we can underestimate the impact it's having on people, the financial impact. The worry is, of course, that doctors aren't prescribing.

SPEAKER_02: 53:00

They

SPEAKER_01: 53:01

refuse to treat these patients, which is just terrible.

SPEAKER_02: 53:04

Well, you know, Assistant Minister White and the Parliamentary Co-Chair made a big song and dance about, hey, we've got the ODP, and thanks to that and our great work on that, you know, 47,000 people are accessing it. And I'm like, yeah, but you know what? There's 170,000 people not because they can't get into the program. because there's nowhere to prescribe, no one to actually access the system itself. So just because something is available, we have all these different parts of the system. And I'm not saying everything's an easy fix, but we've got people who can't get their medicine on the PBS because PBS won't recommend it. And then we've got people where we've got medicines on the PBS and they can't get anyone to prescribe it. So I think we do need to take a big grown-up look at ourselves. And again, the There are some principles behind our health access system that, you know, in our case, they're going, I want a royal commission. Whether it's a royal commission, whether it's a different review, at least a royal commission gets responded to better than a parliamentary inquiry, which, you know, we know what happened with the novel technologies inquiry. Lots of recommendations that go nowhere. What did they say about the

SPEAKER_01: 54:14

discount rate? Hey, did you see the Trump administration's version of harm reduction?

SPEAKER_02: 54:22

No. No?

SPEAKER_01: 54:24

They just blew up that ship carrying drugs to the US. Did you see that? No, I didn't. Yeah, there was a– they effectively launched a war against Venezuela because they see the Maduro regime, wonderful latest example of socialism, how well it goes, of basically being a narco-terrorist, a bit like North Korea was a few years ago. So there was a ship with 11 people on it, this fast boat that was taking drugs into the US Drone strike. Oh. Yeah, that was the version of our production.

SPEAKER_02: 55:00

There are a lot of very happy

SPEAKER_01: 55:01

fish right now going, hey, this is good, man. I was like, whoa, that was amazing. And did you see, I suppose we've been going for a while, did you see Dan Andrews at the military parade in China? What an absolute disgrace.

SPEAKER_02: 55:17

Yeah. Talk

SPEAKER_01: 55:19

about ahistorical. The Chinese Communist Party didn't lift a finger in World War II. It was a nationalist led by Chiang Kai-shek they actually they didn't fight deliberately because they thought that the Japanese would wear out and weaken the nationalists and then at the war's end they could then take advantage of that which is exactly what they did and for China the Chinese Communist Party to be somehow be claiming victory over Japan I'm sorry the victory over Japan was mostly won by 17 and 18 year old young American men in the South Pacific

SPEAKER_02: 55:49

yeah

SPEAKER_01: 55:49

and the pilot the B-29 pilots

SPEAKER_02: 55:52

absolutely

SPEAKER_01: 55:52

yeah

SPEAKER_02: 55:53

I just am assuming that He went over there. This has paid back for their reciprocity to him for locking up Victoria for two years saying this thing's really bad. You thought Wuhan was bad. We can be

SPEAKER_01: 56:03

worse. Standing there next to all those despots. Oh, goodness me. That was not a good thing. And apologies to the listeners. You may have heard a buzzing sound in the background. That is drone wash. That sounds very sophisticated because they clean the outside of the building and they clean the upper house. But as it turns out. out it's just a hose strapped to a drone so it does make a bit of noise so apologies if that's in the background

SPEAKER_02: 56:30

I know I'd have preferred the F1 Monza

SPEAKER_01: 56:32

oh yeah that's okay yeah yeah F1 yeah yeah thanks

SPEAKER_02: 56:36

Paul now I

SPEAKER_01: 56:37

know how you feel about it thanks Felicity and thanks everyone keep the feedback coming in great feedback at the events this week and really appreciate the listening and please bring forward your suggestions we'd be happy to talk about it see you Felicity bye