The 'Dispatched' Podcast
BioPharmaDispatch - discussing the issues impacting the Australian biopharmaceutical and life sciences sectors with Paul Cross and Felicity McNeill.
The 'Dispatched' Podcast
The 'Dispatched' Podcast - 30 November
In this week’s Dispatched Podcast, we unpack the AI Health Summit and agree it revealed a gap between institutional caution and the real-world pace of its adoption. The practical reality of the proposed ban on genetic testing for life insurance, the self-limiting nature of Australia’s health reform processes, the status quo bias, and the absence of any genuine patient-centred purpose in current settings. We also discuss productivity, a critical roundtable, access inequities and the opportunity to broaden the discussion by not accepting the ‘framing’ of choices.
Hello and welcome to the Dispatched Podcast. My name is Paul Cross. I'm delighted to be joined by Mark Coo's Felicity McNeil, PSM, Chair of Better Access Australia. Hi Felicity.
Felicity:Hi, Paul. Thanks for giving me a couple of weeks of RR. I'm most grateful.
Paul:I know, and this is our second go at recording this.
Felicity:That is my punishment for because taking time of it.
Paul:Uh we're recording this on Sunday on a take two situation because of my technical shortcomings or failings. Oh good.
Felicity:So Which is a perfect segue into your first topic. Artificial intelligence.
Paul:Artificial intelligence, that's right. We before you went away, uh we had our AI summit.
Felicity:Yeah.
Paul:Which I thought was very interesting. I really enjoyed the day. It was very different to the events that we normally do in that we had formal presentations, which was great, and some mediated discussions. And they're all they're all very good and interesting in their own way, I thought.
Felicity:Yeah, it was um you're right, it's it was very different to your your usual conference, and I'd encourage people who didn't have the opportunity to attend to consider uh should you run one again, because a lot of the time your conferences are about a critique of what's going on and trying to No one leaves feeling good. Trying to encourage people to to to grow a backbone and some intelligence. So this was a really interesting one because as you've been talking on the podcast and even in your your writing, you are coming to AI, as you would say, perhaps later than some people, earlier than others. And so it was an a genuine opportunity for people to just understand what is going on, assumptions, relevancies. I thought your opening speaker from the UK, she was fantastic. Dr.
Paul:Andre Bates, yes, who's currently in Australia, and I'd encourage people to get in contact with her.
Felicity:Yeah, and making it she set the scene beautifully about what it's being used for in the different formats, in the different areas, whether it's drug development or tech development or research and analysis that the speed of time to areas of work and how it can be used and how it can also be uh a trap for people in respect of you you have to know what you're doing. You you need that base level of knowledge in your subject area to really get the most out of it and to to build not only improve time to access uh in whatever that may be, but to really strengthen your own analysis of things that are going on, which was the nice segue into your your other speakers who then spoke from the HDA perspective. And and I did find it interesting with Professor Ward and I know you want to talk about her work, but for me it was the the epitome of what you've been writing about recently, which is framing. So trying to hide behind the academic millennial approach, which is it's not me that's afraid of AI, it's you know it's the it's the kids I'm teaching.
Paul:Yeah, she she did provide some interesting stats on that.
Felicity:She did. And the the concern I have for that is that okay, so we all have to have a healthy skepticism. I don't think anyone in that room was just saying, hey, let me just get that particular app and just run with it. I mean, unless you're Deloitte, of course, in which you did, and we all know what goes wrong with that. But we it was a good opportunity to see how quickly an institution will batten down the hatches and use the artificial construct of protecting everybody and an institution as a reason to say no. And I know we've had in the last week the the government announced their the new centre for AI or the AI agency or something.
Paul:Government agency.
Felicity:Yeah, a bit like we used to have one for when we used to have to do websites and we had that same digital agency that was abolished. They've all got jobs again now. So I I did find that interesting to see how quickly some people are adapting it. I know you had some great presentations from the um health insurance providers and uh from individual companies. And I that's what I thought it was. It was the epitome of open learning, which is let's just talk about what we're doing.
Paul:It was a great day in that respect, the learning opportunity. I see I I honestly I I decided to hold that day somewhat selfishly because I want to learn what everyone is doing. The company presentations were really interesting. We had the the company case study of Synofi, we had Amgen, we had our Gen X, they're all at different levels of adopting AI. Some very, very sophisticated. I thought Liz from Synofi and Gabby from Amgen were really interesting in how they talked about the expectation of global leadership around their use of AI as leaders and how it needs to go through the organization. That was interesting. Uh Catherine from Argenic, she was interesting from a small company perspective, small company growing very quickly about how they're using it. I thought prospection, their data approach, that was a very interesting case study. HCF, interesting, Catholic Health Australia. Catherine Bassett from Catholic Health Australia was giving us those clinical case studies. So it was a fantastic day. Of course I'm biased, but it was a really interesting day from a learning opportunity.
Felicity:Yeah, and and that's the feedback that people I had an opportunity to chat to at the end of the days were were quick to articulate. So well done.
Paul:Big gap though between that institutional presentation of AI. We had the formal presentation from the chair of the HTA Review Implementation Advisory Group, Professor Andrew Wilson, who talked about piloting the use of AI and HTA processes in two or three years' time. I don't want to be unfair in that presentation.
Felicity:Oh, but look, can you hey, that's still going to be faster than consumer comments, which are being done through the MRFF and aren't going to be available as an integrated concept idea until 2031.
Paul:Well, and then you had Professor Ward obviously talking about it really from her Monash University perspective, the high use of AI and them allowing students to use AI, but as you say, she sort of said, Oh, yes, but they're very sceptical about it or uncomfortable using it. I'm not quite sure. I think your your perspective, and that's probably right. I think I agree with that. To me, there was that gap between the institutional perspective and the reality of what's actually happening. We had these very progressive examples of companies not just making use of AI, but their expectation of its use. And I kind of said it's still not clear to me, I still don't have a really comprehensive understanding of what AI is, and I suspect I'm not sure who it was who said on the day, we probably won't be calling it AI in a few years. Maybe it was Bronwyn from Ant Health. We may not be calling it AI, we may have broken it down into those individual components. I thought that that was interesting, but it is a disruptive platform, undoubtedly. So so I think if the institution wants to put up guardrails and try and try and control it in that traditional public health way, good luck. It's it's not it's not going to work. Meanwhile, the government is sort of doing what it traditionally does, is thinking about it in terms of guardrails. And that's certainly the language that was used last week by the minister, I think it's Tim Ayers, who's the responsible minister, talking about it as an opportunity, but then highlighting all the risks. And when governments do that, in my experience, when they're when they use the word risk, really what they're talking about is risk.
Felicity:Yeah, and you know, to to quote Mark Butler, who often talks about the fact that the majority of out of fax machines still used in Australia are by clinicians. And if you think about it took until 2012-13 for you being able to sort of email in a PBAC submission alongside with a a duplicate of the of the hard copies. Yeah, yeah. When I started there in 2010, we were still travelling with, you know, 40 kilos of paperwork to to all of the meetings. And you know, you think about the online, you know, we have to be careful because this is a department that designed a a product portal that will save the industry, what, 250, 300 million holes?
Paul:$150 million a year.
Felicity:Sorry to exaggerate. 150 million a year from being able to lodge online. Um it's never mind how they actually then use that and manage that system. So it is traditionally uh a sort of recalcitrant area of change. And and I do see that you know, this is an industry that, you know, particularly in HTA, is nervous because there's a lot of people employed in this sector. It's a big industry that um can actually harness it rather than be frightened of it or um concerned about it. But I really hope that you know, one of the for for next year, one of the organizations I'd like to see at your summit if you do that again is the Digital Health Agency. Because my interactions with them, they are so far ahead on this thinking and how they use digital health and intelligence areas. So it's a good suggestion. I think that that juxtaposition of old world versus those who are deliberately in the space already looking at this.
Paul:Well, we're already talking about our event in May, and I suspect we might have a bit of an AI focus there because I I don't think you can avoid it. I think people are very foolish to think that the life life the world is just going to go on as is. I'm not expecting a Terminator 2 Skynet situation, but it is going to be an incredibly disruptive thing, so embracing it is really the only way to go. Let's talk about some legislation that was tabled in the parliament last week, which is supported by supported very strongly by some people. And this is the ban, the proposed ban on life insurers use using genetic tests in their risk rating of insured customers.
Felicity:For life insurance.
Paul:For life insurance. Life insurance is a risk-rated product. They risk you they calculate your risk based on plenty of obvious factors. Your lifestyle, your age, your health. You and I yesterday, when we first recorded this, talked about our own experience of joining the public service. We we had to go and actually have a medical.
Speaker 1:Yeah.
Paul:A physical medical by a Commonwealth employed doctor for our superannuation and our life insurance. Life insurance, yes.
Felicity:And and and I had a, you know, we have to think about it, you've got asthma.
Paul:So when you read the I I understand that people feel very strongly about this. I don't disrespect their feelings. My position is that this legislation is not going to do what they think it's going to do.
Speaker 1:I agree.
Paul:The legislation and its explanatory mem memorandum are quite clear on that.
Felicity:Explicit.
Paul:Explicit. So it says that the EXMO, which is the government's interpretation of the intent.
Felicity:And which therefore if you end up in court, the judge will turn to.
Paul:The EXMO says, well, the what's the risk here? What's the risk with this change? Well, the risk is adverse selection. That people go and have a genetic test, find it out or discover that they have this high risk of a particular disease such as a cancer, and therefore go and double their insured value.
Felicity:Yeah.
Paul:Perfectly human response. Of course, the eXmo says, well, that's probably not going to happen. And even if it does, life insurers will still be permitted to ask questions about your family medical history. In effect, what they've said is, well, we're going to ban genetic tests, but they're still going to be able to uncover your your indirectly uncover any genetic risk you might have by asking some clunky questions about your family medical history.
Felicity:Yeah.
Paul:So I I think people who do believe you know, people do believe very genuinely and very strongly about this. They believe they've been discriminated against. The problem is that in a risk-rated product, it it's all about discrimination.
Felicity:Well, car insurance is risk-rated, so if you're under 25, you know, good luck. Um travel insurance is the same. Like, you know, I've talked about in the the past. If if I want to travel, I'm I'm risk-rated accordingly because of anaphylaxis.
Paul:Yeah, so my my concern is for the advocates for this who believe very strongly in it. And they won't be required to do a genetic test, and okay, that's fine. But you're still going to have to reveal your family medical history. And the life insurers support this legislation. And they've actually put a moratorium on genetic testing and calculating risks, I think, since 2020, because they know they can get the information anyway. And anyone who's dealt with a life insurer or life insurance as a product via a claim will know that they don't just pay the claim. No, they don't, they will investigate everything. So it's not i i if you do not reveal your family medical history in a way that accurately reflects that history, they'll find out. And they won't pay the claim. They're very aggressive in that process. So my my concern here is that this is a law that, whilst well-meaning, is profoundly misleading in what it's going to achieve.
Felicity:Yeah, I mean, I don't actually think it is misleading. I think it's something that's been put in because of political pressure, and maybe it's negotiations like fifty million dollars for the um ABC to get some environmental laws changed. Yeah, but um Yeah. Sounding board's gonna go up. But I I I don't actually think it is misleading. Because if you read the explanatory memorandum, the government is absolutely explicit about the fact that they are doing something because people asked for something and they've consulted on it, and everyone has this perception of it. And, you know, families who've spoken publicly saying if I if I go and get the genetic testing because I want to protect my children or know my my health risk, I don't want to have to hand that over. Okay. But that's they're saying in the end that's fine. Well, you don't have to hand over that test that you were doing, but just as they are asking today, they will continue to answer all these questions. So if you're doing that because you have um, if you did a genetic test and you don't disclose it because you wanted to know having, you know, multiple people in your family have bowel cancer, your likelihood of having that that condition, and you find out that you do in the genetic test, you don't have to disclose that, but you're going to end up answering questions. You know, does anyone in your family have a history of cancer? Does anyone in your family have a history of cardiovascular disease? Does anyone in your family have a diabetes? I mean, you even get asked that when you're going into an emergency department to help them diagnose. So that's where I think the the concept of I think people wanting something to point to to say that, you know, I I should feel safer for doing these tests now, you know, I I feel more emboldened. And yeah, not understanding that that isn't going to change the the risk rating and the fact that you are going to end up disclosing your family history.
Paul:You're still going to be risk-graded. Yes, you're still going to be risk-grated based on your genetic profile. Yeah. So they'll ask you if anyone's gone through this process. Now I don't have life insurance anymore because I I don't need it. My dogs will be fine. But they will ask you, any direct family members have a cancer? And if you answer yes to that, they'll then ask a series of additional questions to get to the bottom of that. And that's that's a process that they're going through to ascertain any genetic risk you might have.
Felicity:Yeah.
Paul:And they can that can affect your premium, it won't always affect your premium.
Felicity:And some will.
Paul:It it will on some occasions, and in some occasions uh they might even refuse to insure you on on that basis, depending on the amounts that you're asking for, I think, is where that becomes a consideration. So my my concern is that okay, by all means legislate it so they can't use these genetic tests. I think I think they'll still be able to use it if if it's a positive. So if it shows that you don't have a genetic risk, you can still present that. So that's okay. But they're still going to be able to use your medical history and that of your family to determine your risk, and that could lead to them making a particular cancer in exclusion, for example. You know, you ask any veteran about getting life insurance, it's pretty hard.
Speaker 1:Yeah.
Paul:It's pretty hard because most a lot of veterans have you know me mental health.
Felicity:Yeah, post-traumatic stress association.
Paul:And and that becomes an exclusion.
Felicity:But it's already so again, travel travel insurance is such that if you have ever had anxiety or panic attacks or post-traumatic stress, you have to disclose that and you do char you are charged a significantly higher premium for insurance for mental health conditions. And the thing then there is some people decide not to disclose. But the the challenge there is on all insurance, it's not that they just then don't insure you if you do have a mental health episode while traveling, they won't insure you for any of the things that you did disclose because you didn't give them an honest and full disclosure for them to make an assessment at the time of purchasing the insurance. So I I think it mental health, and I I watched some really interesting um analyses on this in the United Kingdom about how much more people are charged on travel insurance for mental health.
Paul:Yeah, it's probably as much as a scheme. So I mean if you put Mark's scheme on your travel insurance claim, look out, because obviously it's a dangerous sport.
Felicity:Yeah.
Paul:So it's it's a risk-rated product. My suspicion is that a lot of people think about this issue in in that sort of health insurance context. Yeah, which is non because it's a community-rated product, but everyone pays the same premium, and you can argue the right and wrongs of that. I think a limited form of risk rating in health insurance would be a good idea. Very unlikely to happen, and people will shout me down, but it's this is not this is a this is gen effectively general insurance, it's like car insurance. That general insurance pool, which includes car insurance and and uh life insurance, is all risk-rated. And they price the product based based on the risk. So if you're a 25-year-old, really healthy person you'll and you don't smoke and etc. Your life insurance premium is gonna be pretty low.
Felicity:Yes.
Paul:Because you're healthy and you're probably not gonna die for a very long time. If you're uh my age, for example, a little bit older, healthy is generally pretty good, I think. Got some creaky bones and but generally good health, my premium's still gonna be a lot higher because it's a risk-rated product. So I just I would and everyone's sort of come out and supported this policy, but it's one of those policies that's really easy to support. But I just wish more people would say, Well, can we just pump the brakes on this for a second? Because the the people who drafted the legislation, I wonder if they're sitting around the table saying, you know, they're still going to be able to get all this information, it's just not gonna be based on a scientific test.
Speaker 1:Yeah.
Paul:So anyway, it's I'm sure it will sail through the parliament. Hey, I did an interview recently with the Michael Oberreiter, who's the head of public affairs for Roche International. I I I understand he reports directly to the Roche CEOs, very impressive person. Had a great conversation with him, great interview. One of those interviews that you do where it sort of it writes itself.
Felicity:I'm not with AI's help.
Paul:No, that's right. And yeah, yes, that's right. A really good interview, people who speak really clearly and you just sort of get on with them. And we had a great lunch afterwards as well, so I'd like to thank Roche for that. But we s we continue the discussion over lunch. But it was really interesting because what one of the first questions I asked was who's who sort of has this conversation and is doing it well? And he identified or he he referred to a recent reform process that's been undertaken in in Germany where the first question they asked was, Well, what are we trying to do here?
Felicity:Yeah.
Paul:So if we're going to talk about HTA, HTA in service of what? What are the broader objectives? And it was the conversation that we sort of half had in Australia with the National Medicines Policy Review, but that was still very focused on cost.
Felicity:Oh, it was, and we managed to whack the word disinvestment in multiple times. So um it it absolutely had a HTA focus. The NMP was designed to complement our obsession with using HTA.
Paul:Yeah, so it was a bit of a lost opportunity, and it and it made me think about the extent to which we we and I I count myself in this, we're all sort of part of this soup uh health system soup, whether we're capable of actually having a a conversation that that that broad conversation about where if we're gonna before we we before you embark on this process of HTA reform, which just seems to be going on for most of the decade, I mean it's this this process lasts longer than most Australian governments work. I mean it's just crazy, but it's are we are we even capable of having that broader conversation that Michael referred to in Germany? But I got I have this funny feeling that you know we're not capable of taking the gin out of the ginotonic.
Felicity:Yeah, I mean I I think you have have seen that you know you know how much I want the the Prime Minister to um honour his original election commitment and do a Royal Commission of of COVID because Royal Commissions are faster and more comprehensive than the HTA review has been.
Paul:Um the recommendations are implemented fast.
Felicity:Yeah, I'll ask everyone in in aged care, it's been wonderful. So I I do agree with you on that. It's the the system led everyone down a path and it continues to to focus on what it as an institution wants to continue with. And you've written about it and talked about it, which is when the most favoured nation status and the trade discussions were going on. Mark Butler got up and very proudly in the parliament in a media conference said, you know, my job is to get the best price for medicines. He's right. And because he never mentioned a patient. And he's right, the legislation does not actually say it's got anything to do with improving the health of Australians or um contributing to, you know, primary versus acute. But the patient is actually nowhere to be seen. They are not a consideration in in the in the process. And that's what we we had hoped. The NNP was supposed to lift everything up and have those, like we all say, you know, how how do you work out what to do in your business or in your not-for-profit? Well, I have a strategic plan with the objectives that I'm supposed to achieve and how I do and what I choose to do is supposed to deliver those. We don't have that. We literally do not have it. We see investment in, and I know we're going to talk about later the Productivity Commission work and fives from the ACI running a forum last week. But we see investment in health ever since the intergenerational report as a burden and a cost to the economy as opposed to as the Productivity Commission has highlighted since 2018. It's actually an investment in productivity, improves productivity. And so when we're still sitting there on a HTA, whether it's a comparator or I know we're going to talk about a bridging fund, all these bits and pieces, we're not lifting up to the concept of what is it that we are actually trying to do here.
Paul:Yes, well, the legislation when it was drafted and debated in the parliament, it was pretty clear that patients were a problem.
Felicity:Always have been, always.
Paul:With patients as a problem in mind. That's why there were no patients on the PBOC for twelve years. They added a pharmacist, that was the only amendment to that bill in 1987.
Felicity:Yeah.
Paul:But the parliamentary debate was a ri it was was embarrassing.
Felicity:Yeah, and you've reported on that really well.
Paul:Yeah, it's and and I describe it as the original sin. So the only way we're going to get around that is by having that broader discussion. But the framing of these processes, the including the one that we're currently in, is that well the PBOC is like a papal conclave. You can't question the role of the PBOC. How dare you do that? I mean, it's just like, what are you what are you talking about? Like there's just a bunch of people to sit around the table. I mean, it's like there's nothing particularly special or uniquely skillful about what they do. I think I think we should be talking about replacement, not reforming.
Speaker 1:Yes.
Paul:And particularly in the context of something like AI, where obviously there's a huge opportunity to accelerate the process. But I thought the the interview with Michael was interesting because it is it is an opportunity, and it we don't get that opportunity very often. Take a step back and say, well, what what are we trying to do here? And the and the productivity, good on Pfizer, and I know you attended that round table in Parliament House on Friday. Good on the A double CI and Pfizer for hosting that and at least having the conversation because what was because the government doesn't want to have it right.
Felicity:No, well, we had the economic round table of productivity, and health didn't actually get a seat at a table. Like it there was no discussion of that, other than in the context of um, you know, fiscal challenges for the budget. So uh look, um it's really interesting. The Productivity Commission, irrespective of the way things are not being dealt with in that recent round table forum, has been doing the work on research papers on the value of health to productivity and looked at various diseases and actually found that it has a significant impact. The investment in Australia, yes, is significant, but it generates health outcomes and it actually generates good productivity. One of the things they lamented, and people who are captured by our HTA bodies think that the quality of life you gained, the quality, is the same thing as measuring the quality of life impact for an individual patient or a population level. And the Commission really highlighted that, that this is something that is missed quite regularly in the way that we evaluate the impact of health investment for Australians, that if you have a better life, if you feel better and you can work more and you can feel, you know, of a greater c contribution capacity, the importance of that. Um they also had uh discussions, obviously, they've got their interim report out about improving the the productivity of the health system. And one of the things that, you know, what do you have when you have a state and federal system and some local government too? You have duplication of of the care services. And we see this in the NDIS as well, too. You know, you registered with, you know, EPRA for your medical registration, but you've got to register separately for the NDIS to actually provide services here, and then you register separately again. So you you have all sorts of problems in that area. They did also highlight, though, the propensity to focus on acute rather than prevention, that prevention isn't stopping someone from getting sick at all, like stopping them from getting diabetes, but preventing the deterioration of that diabetes, though, that it leads to hospitalizations, etc. Now, one of the things that did concern me is that the solution to actually encouraging more prevention investment is that we need a prevention advisory board, a national board.
Paul:Future fund?
Felicity:No, no, no. It's like it's like a it's like a PBOC for prevention.
Paul:Oh, for God's sake.
Felicity:And but this is where bureaucracy understands bureaucracy. So we need another board. I'm like, well, please don't put any of those guys on the wheel. We we can't get MSAC to agree that you should invest in, you know, continuous glucose monitoring for diabetes. Never have.
Speaker 1:Um
Felicity:It's always been uh done through elections. So I I looked at that and I looked at this and went to the R.
Paul:Why do people think committees and bureaucracies are always the solution?
Felicity:Because I think that's what the system knows. So if we have another independent body that will tell us and evaluate us, then then we can we can we can do this. And we It's just a way to say no. It is, but it's also the disproportionality of the evidentiary bases and the processes that we insist on in health, then we don't insist on in other areas of investment like I don't know, uh energy, uh roads, uh other forms of infrastructure. We we put health through this hurdle in a way that we don't through other areas, we we put health through a hurdle that we don't put education through in respect of new investments in those areas. And I think that's something that we need to because we can have the data, as I've always said to you, because particularly in medicines, in pharmaceuticals, you have such an extraordinary amount of data and trials to evaluate, the bar is pushed four times higher.
Paul:Well, the industry's done it to itself in a way. Michael actually said this in the interview, he was looking at a clinical trial that had 36 endpoints. And I said, Well, that's 36 reasons to say no.
Felicity:Discount for uncertainty?
Paul:Yes, yeah, it just creates uncertainty, that complexity. But if you're going to produce that data, you've got to expect governments to use it. So there is that that that element. It was interesting because the the I was when we were talking, we we were talking about well, what are the drivers? What's what's a driver of reform? And I shared my theory that uh Australia is a sort of a status quo environment. It's small c conservative in terms of policy because of their complexity. You talked about the multiple layers of government. We have a constitution that's quite vague on health, but it's interpreted quite strictly. Maybe not as strictly as it used to be, but it's it's quite limiting in what the Commonwealth can do, for example. We have the states and territories who deliver a lot of the services. We have two houses of parliament, so it's very hard where government very rarely, maybe twice in the last 50 years, has a sitting government held a majority or a working majority in the Senate. Now everything has to be negotiated. So this is this this means that the system biases to the status quo. So a lot of reform, particularly in health, is not what it's classified as reform, but it's sort of kicking down, it's buying time. And the classic example of that is the bulk billing incentives that the current government has introduced. They're pushing the problem down the road for two or three years. Bulk billing is a structural problem where the cost to GPs and companies that have GP services of providing those services is increasing at a much faster rate than the bulk billing incentive is going to increase. Now that's leading to the corporatization. Many bank private now owns 600 or something GP clinics. So obviously, that market will respond in all sorts of different ways, as and one of that is higher out-of-pocket costs. So the government kicks it down the road because they're limited in what they can do. And a status quo bias can work for you as a stakeholder, pharmacy being the classic example. It's really hard in New Zealand, where they can just upend the system. Tomorrow I use the example where the previous government established a national health bureaucracy and the new government just got rid of it. Inconceivable in a country like Australia. So this is this is where it gets really, really, really very hard. And so, in that context, things that are presented as reform are nothing of the sort, and HTA is the classic example where it's operating within a 40-year-old legislative framework that nobody thinks can be reformed in any sort of meaningful way. No one even has the discussion. And then we get to these tinkering ideas. So we have a three-year process. The first response to that from government is another review process of the guidelines relating to comparators and to the discount rate. And as we saw yesterday, people are pushing for a bridging fund not again for can't for cancer medicines, which I I I th I don't think I don't the minister's language on that was well, it was what you would expect a minute minister to say. I'm waiting for the report, I'll review it. But they're talking about a bridging fund in two or three years. I don't know why. My my concern over a bridging fund is that limiting it to cancer is very easy for government.
Felicity:Yeah.
Paul:They will make the conditions almost unacceptable. And we've effectively had a bridging fund since 2010.
Felicity:Yeah, the managed entry scheme.
Paul:Yeah, which virtually no one uses because it's complex and the conditions are very onerous. They'll use it as an excuse not to do anything else. Oh, we've got the bridging fund. And if we are going to have a bridging fund, I think you should have it for everything.
Felicity:I agree.
Paul:Particularly chronic conditions.
Felicity:Yeah, look, and you know I've been anti-bridging fund from the outset, because I said as soon as you do that, as soon as you make the sis as soon as you go outside the system, you allow the system to keep going as it's happening, and you allow a tokenism to say, here we gave you this. Um reading that article, you know, the the alliance that's put it together said, you know, 21,000 patients could potentially benefit based on the criteria of higher met clinical need in, you know, critical areas, so mostly cancer. You know, there's there's 150,000 people with migraine who still haven't had proper access to migraine treatments because of the way the system works. I sat and listened to people talk about the fact that we still have inadequate access to biological demar. It's not only for adults who are still being made to take a treatment, you know, horrific treatments, uh, before they're allowed the more expensive, more effective treatments, but also children, pediatrics who are waiting to try and get access to those medicines.
Paul:We had government spending money trying to stop doctors from prescribing pretty much.
Felicity:Talk about how that infuriated me and that it's one of the things that we had been promised that as soon as the thing became cheaper, that we would actually look at the the the changes. And so, for example, the evidence in uh the UK, which is that if you are diagnosed with some of these diseases like psoriasis and psoriatic arthritis, and you commence treatment with the biologic up front, rather than here where we want you to have, you know, four major or twenty minor joints before you're allowed access to them. They have actually found that if you start, just like in genetic therapies, if you start, then within five years you've actually put it into remission. So you withdraw the treatment and people don't need any more treatment because the the disease is under control, which was the original promise of BD Marts. But it's like, you know, when I get angry about newborn blood spot screening, and there are so many diseases that are not only do we have treatments for, i.e. pompey, that isn't being recommended, but you have diseases like San Filippo, etc., which is if you need urgent, although there are no current treatments, but the earlier diagnosis allows you to get uh into clinical trials because the rate of degeneration of an individual precludes you from particular trials and from the positive impacts of those therapies. Spinal muscular atrophy, another really good example of by the time you waited, you know, babies screened in New South Wales have better health outcomes than the babies that were screened in Victoria because babies in Victoria weren't screened and so started their treatments later. So it's it is an excuse. And you know, I always remind people when health really mattered in this country during COVID, we walked away from our HTA bodies and went, yeah, no, people will die away then and we're not doing that. So we're not going to PBSC for the vaccines or the treatments, and we're not going to MSAC for the telehealth and all those things. We're just getting on with it because when something matters, then we do things differently. And that's why we need we need the KPIs. We need the thing that says this is our principles of how we will list things and how quickly things will be made available in Australia and we work our systems backwards. And I just, you know, I appreciate with people with cancer, it it feels very much life and death. But as the Productivity Commissioner also talks about, the rate of chronic disease diagnosis in young in people in Australia is getting younger and younger and younger, and they are living a life of unimaginable pain and suffering, which is just as bad. And so as soon we we can't pick winners and losers like this. No, well that's not when it comes to access to medicines and technology and to healthcare services.
Paul:Yeah, I I completely agree on that. I I don't know why we would limit it in such a way. I think that raises a lot of issues for me around equity. There to me, this is this is part this goes to the previous point about the self-limiting nature of much of the discussion. The government says we're not we're the PBSC, that's gonna if you look at the HCR review and it's in terms of reference, whatever it was, even the I think the strategic agreement of the pricing agreement, we should stop using the word strategic because it's one of the most abused in the English language, it says PBSC will remain the source of the primary source of advice. It's constant the government is c governments, successive governments are constantly reminding us that the foundations of this system cannot change.
Felicity:Yeah, and remember in the draft terms of reference, which also became final, you weren't allowed to consider the issue of cost-effectiveness. No, that's off the table too. Pricing's off the table.
Paul:Off the table. So so that that is deeply problematic for me. So I think from an advocacy perspective, it is a mistake to accept that premise. It's a complete mistake because that's that's how we get into these situations where after three years, we're talking about clarifying the wording. Nothing's going to change on comparators and discount rate. They're just going to clarify the wording. That's what they've been quite clear about that. We get into a discussion about a possible bridging fund in two years' time. We get into a discussion about the adoption of the piloting of AI in three years' time in the HTA process. Because we have this self-limiting, this self-limiting mindset. And that that to me is why it's really important to say, well, I'm not the health department doesn't own these programs.
Felicity:No, the community does.
Paul:The community does. The drafting of the legislation around PBS decision making was a was it was absolutely disgraceful. And it was a sh it was an absolutely shameful example of a parliamentary debate. The talking down of patients in their experience, the minimizing of their experience, one MP suggesting, well, we should, which is a shame we can't put sugar-coated placebos on the PBS. Now those political attitudes might have evolved. Okay, and that's and that's fine. But this the original sin needs to be updated to reflect the evolution of those attitudes. But no, what we get is a consumer input on the HTA review, which they were given. I mean, this is this is this is the other thing, people don't get it, right? You will rec you will recall that the review was completed. They were just doing the graphic design because we know that was one of the final holdouts. Then the the supporting patient organizations were given a couple of weeks over Christmas to draft their response. And that that itself is symptomatic of a massive problem. But then the response was, and you remember that diagram that says, What's the role of patient input? It's to make HTA better.
Felicity:Yeah.
Paul:Isn't it to make patient lives better? It's but that that is in the nature of our system and in the way it's been codified, that is an accurate description. The fact is that the consumer reps on PBAC and MSAC and every other advisory committee have no formal standing. They their their role on those committees is in law no different to the health economists, the clinicians. Consumers consumer is a word I absolutely loathe because we're not buying an iPhone.
Felicity:No.
Paul:Patients, there that word is not used in the legislation to guide HTA decision making in this country.
Felicity:No, and it's a really important one. It's one we go on really hard because as Nicole Cooper, who uh presented at your several of your conferences, and it used to upset her, she said, I I don't I don't choose to have cancer, I don't choose to be dying. I don't choose to have to have all these treatments. I I it's not an option. This is I am a patient and I need to be treated and respected that way. And I know in the National Medicines Policy Review they ended up saying, you know, some people like to be empowered as consumers and some people like to be considered as patients, and some people like you know the NDAS term of you know participant. So, you know, when we say consumer, we mean this. It's like well, actually no, like if nomenclature matters, then nomenclature matters. And the the continuing issue of thinking that healthcare has become a choice that people make because they can't afford it. But good health is not a choice. Good health is supposed to be a right, and if we want to continue to, you know, preach to the world that we have the best systems in which we don't, and the best healthcare outcomes which we don't, then we need to own up to the fact that you can't say that healthcare is a choice in this country. The only reason it becomes a choice is because people can't afford it. Because if you can get a bulk build GP, obviously if you're not in Canberra, but everything else thereafter costs, and families make very tough decisions because you've got to remember concessional status drops out at $66,000 a year, and for the rest of it, can I afford my medicine? Can I afford the diagnosis? Can I afford to see the specialist? Can I afford my NDSS co-payments? Can I afford everything else that goes with healthcare that's not funded? And we are naive about that. And so when we're going back towards the the PBS and the PBAC and those things, that's why we're always looking for the leadership, which is give us a target of 100 days, give us an expectation of where the patient sits and the things, because it's only with that political leadership that the system will be compelled to change.
Paul:Yes, well said. Very well said.
Felicity:Yeah, and I guess it's been another.
Paul:Did you again did you uh buy anything in the Black Friday sales? Which now it seems to be kind of a whole week.
Felicity:I think it's been going for a month, depending where you are. But no, no, I haven't I haven't done none of that. But I do want to actually give a shout out because um I've I've been helping some uh an individual uh patient participant uh over the last six months and a very lovely family on Friday. It's not often in in the the volunteers say send me these really lovely flowers. Now, the only reason I raise this is that it's the epitome of the social contract that goes on in in Camera. And I want to give a shout-out to GDs, which is a flower and bouquet and baskets place, because they employ people with a disability to give them jobs and opportunities throughout their business. And so when you do something like that, it's about creating the workspace. It's not good enough just to give good health care and good social services care. They're trying to encourage the employment opportunities for people who are are making improvements in their lives. So I wanted to I wanted to give them a shout out. What's the name again? Um it's GG's and uh that because of the do flowers and and corporate things and stuff for delivery here in Canberra, it's only a Canberra based space, but I know a lot of your listeners do a lot of things and Christmas is coming up. And think about the fact that I mean I send flowers all the time to people, but it was a really good moment for me to stop and reflect and say, I can do it this way or I can do this way and do the same thing, and it empowers people to have the same rights of work, uh, respect and opportunity that that I often get to take for granted. So um I just wanted to thank you to the people that sent them to me and thank you to the organisation that's doing that's walking the walk.
Paul:Yeah, well done. Well done. Well, selfishly I did take advantage of the Black Friday. So I think you've become completely hooked on it. Of course, if you're on any sort of email distribution, I mean the the funny thing is that it's related to Thanksgiving. I don't know how many people understand that that it's the Friday is the day after Thanksgiving, which is it's just a wonderful time in the US. If you ever I think people now see it like the some, you know, the the the the usual suspects complain about it's the colonial something they should just shut up and go away.
Felicity:Like moving a Birkin Wills monument.
Paul:Oh my explorers.
Felicity:I know. And they didn't have a very good time. No, they didn't.
Paul:Kids probably don't even learn about Birkin Wills these days.
unknown:No.
Paul:Just rid of that home state of ours. They've lost their minds. Absolutely lost their minds.
Felicity:They've lost their budget, too.
Paul:They've lost their budget, yeah.
Felicity:Um 12 generations ago.
Paul:I I launched my own Black Friday sale for my conference in May, and a lot of people, a lot more than I expected, took advantage of it. Normally you can track these things. Like I always did like an early bird, and and that's just just to help, you know, because events have become very expensive post-COVID. So there's a lot of strategic value in doing events, you don't really make any money out of them these days. Everything's so expensive. Honestly, my most profitable event was my annual conference that I held during COVID. Well, I can only have 80 people in the room.
Felicity:We were all sitting like two meters apart from each other with these with these lunch boxes.
Paul:Yeah, but but I couldn't hit the minimum spend. I couldn't even hit it. So I had to say bring out the champagne. So we had champagne that day, so it's quite good.
Felicity:They do away four metres from someone.
Paul:Nowadays I'm telling people just drink the coffee because the it's it's it's quite eye-watering how expensive it is, God. But a lot of people took advantage of it, and that and that and that's great. And I I want to thank people for doing that because, as I always say, and I said at the the AI event, and I say it at every event, we we provide complimentary registration to patients and patient organizations, not just limited to organizations, patients can take advantage of it, and they do.
Speaker 1:Yeah.
Paul:And the only way we can do that is because the companies, the industry, supports our events. And at our May event, usually around one-third of the audience is patients and patient groups. And I would like to just acknowledge again that the early strong support for our May event, we're about half of the audience is already registered. We've already got a lot of patients who already registered. And the fact that people have taken advantage of that special, I know it's the end of the year and they're clearing budgets and everything, but still uh that is that enables us to continue to provide that free of charge, free of charge, that opportunity. We we provide, you know, we don't charge patient groups for access to the site and we don't we that's really, really important. And uh the only way we can do that is with the industry's continued support for our platform, but also our events, which is fantastic because it's not it's not just it's not just the con it's a fantastic networking opportunity, it's a great way for patients to get around and talk to people who they mightn't otherwise have the opportunity to speak to. So I just want to thank everyone as much as a lot more people took advantage of than I thought would. But it's fantastic, and we are gonna construct uh agenda's gonna be a little bit different. Obviously, we will be talking about the budget. Uh the next next year's budget's gonna be very big, obviously. I mean, they're talking about have you been listening to the you know they're gonna have to sack all those public servants, you know, five or six percent. A Labor government significantly reducing APS headcount uh this just I tell you. Programs will cop it, headcount will not.
Felicity:Yeah, it's a um R.
Paul:CPSU won't allow it.
Felicity:No, no, this this is far too too much of a unionized uh space for the lovely Canberra. But um, you know, and I think that we always have to be mindful of where those jobs should go. So I have no problems with lots of effort and resourcing into frontline services. I'm gonna talk about that. That's you know, if you have to as someone who has to deal with the aged care sector and the disability sector and things for my mom and you know, all the different things, that person that picks up the phone uh and helps you through an issue at 11 o'clock at night or two o'clock in the day, um, or for your business, if someone could answer the phone at the ATO, that'd be great. So you you want to keep those those um services there, but yes, where other things are being done. I mean, maybe if we hadn't wasted so much money on the the bomb website, I I kept watching that over the the past week and saying that's a very expensive website, and for $96 million, I think about the things in health that weren't funded in the last year or two years because that money would fund how many access to how many types of drugs? Like it's just it's offensive.
Paul:I'm sorry, $76 million for a consulting firm. The the Google founders raised $100,000 to construct Google.
unknown:Yep.
Paul:Uh I don't know what Sam Alt Altman raised to fund open AI, you know, for open AI, but surely the Auditor General or a Senate committee. I mean, there's estimates this week, and I'm going to assume that the bomb will be doing a lot of training this weekend ahead of that. Because $96 million, that is an absolute disgrace. That is a scandal.
Felicity:It it is a scandal, and you know, you think about the I mean I I'll respect that 14 million of it was for cybersecurity. Okay. Well, that still loses 80 to 10. Yeah, but 76 million was for one. Accenture, yeah. Yeah. Uh and I'm just like, wow, I just No one saw those bills and just said But but also what was, you know, you know, giving a bit of a helpful tip here to the senators. So that wasn't showing up on the contracts register. So, you know, when you if you put out a the original contract was supposed to be four million. So if the original contract's supposed to be four million, you can't extend it 200%. Sorry, yeah, it was no, it's more than that, like 200 times or 50 times, you know, four million up to 76 million. You can usually do an extension that's you know 10 or 15 percent, 25%. Occasionally it doubles by eight million. But when do you go from four million investment to a seventy-six million dollar investment and don't even update the register of um contracts?
Paul:Well, that's why there needs to be an auditor general review. Surely the auditor general's gonna be asked to look at it. Sure. Or a Senate inquiry. Because this is you know, I'm not blaming the I'm not necessarily blaming the government. I think Murray Watts, he's a responsible minister. The bomb website is actually incredibly important.
Speaker 1:Yes.
Paul:You know, whether you're in aviation, you know, and you you you obviously need it, uh, or or you're a farmer. And they they launched their new website and everyone hated it.
Felicity:Yeah, they lost the functionality and said, oh no, it's there as a default, but you have to try and find it to do that.
Paul:I thought their current website's very good. I think it's quite everyone was happy with it. It's because you get the you've got the map, and I get it, websites have to be updated, we all do that. And I get that a government website has additional considerations. I cannot see any world in which those additional considerations add up to $96 million.
Felicity:Yeah.
Paul:It's just because as you say, think about what sort of well, that's a year of CGM for insulin-dependent type 2 diabetics, isn't it?
Felicity:Yeah, I think you could probably get a couple of years out of it.
Paul:Yeah, it's just to me, it's there's got to be questions asked, and uh often now our our news cycle moves so quickly it's really hard for oppositions. I'm gonna re remember I worked up there and on the remember the scan scam, MRI.
Felicity:Yes, I do, Senator.
Paul:Who knew that you could buy an MRI over the phone with a Visa card uh after a particular lunch? Uh but but but that issue went for 12 months two years. It just went on the Auditor General did look at that, it went on and on and on, and I think that's much harder these days.
Felicity:It is, particularly with also the way that the Senate is run. So, you know, you have five minutes and then you're not gonna get upset, and then you have five minutes, and so then by the time you answer the question, you've actually soaked up the five minutes that the senator was appropriated. Uh, and then we all have to have a discussion about whether or not you know you'll yield some of your time to that time and you know, can I do my health department official impersonation?
Paul:We we'll get this this way. Can I do it? Of course. It might sound a bit like you.
Felicity:Oi.
Paul:Oh, thank you for your question, Senator. Obviously, that issue is very important to us. Now I'm not sure whether we've got the right officials here now. Chair, is this the right section for this? Uh is there should be another section? This is an uh an item one, is it outcome one or is it outcome two? Corporate matters, maybe. Is this what okay? Let me just see if the officials are here. Look, I don't I don't think the officials are here at the moment, Senator. We could certainly you know, we'll try and get them up here to uh answer your questions, but of course maybe we could just take them on notice, Senator, because I wouldn't want to give you the wrong information. That's uh certainly not what we're about. So why don't we take those on notice and we'll endeavour to get those back to you as soon as we can. Oh, today, you want those answers today? Well, the officials aren't here. Uh we'll certainly do our best endeavour to get those answers to you today, Senator. Hang on a minute. I'm just gonna ask So Back conversation, so conversation. Yeah, Senator, the the required officials aren't here. I think this is probably an outcome two. So maybe if you could come back later tonight, you know, when's outcome two? 9.45? Okay, yes, we'll uh we'll certainly have the correct officials here to answer that. And if not, we'd be more than happy to take it on notice because I certainly wouldn't want to give you the wrong information.
Felicity:Didn't sound anything like what it means to sound like. Thanks. Anyway, but no, we're gonna get a lot of that this week. We are going to get a lot of it. And the the the problem has become the ability of any individual senator to pursue issues with great rigour. Like we you barely have to get through three questions these days, and you're fine, because then it has to move on. And I think that's the challenge. We've all welcomed the combination of uh aged care, disability, and health being together because it is the so the the care sector, and we need to try and have a more harmonised approach. But the amount of time that that committee is being given to actually go across the breadth of those issues, there's barely one or two that can can be covered, and so everything else then like falls through the cracks, and then suddenly it'll take until like an absolute huge impact happens, something goes wrong, and everything then we'll all readjust to everything. So it's actually quite disenfranchising for individual issues and individual patients and what they're trying to see improved out of the healthcare system because you're basically falling further and further down the food chain in a very tightly regulated for questions and times and tightly regulated opportunity to ask questions.
Paul:Obviously, they're coming back this week because the annual report was so late.
Felicity:Yeah.
Paul:So you know, there's still agencies releasing annual reports last week. It's just crazy. But it's uh I do not understand why opposition, cross-bench and minor parties have allowed this situation to arise where they're allowed ten minutes just to get that momentum up. Then it stops and they've got to come back to it in half an hour.
Felicity:And they don't I mean they really need to change the rules for how the officials are allowed to offer. So you used to make, you know, tease me all the time about my very long answers. But I was giving long answers in a two and a half hour session on the PBS, and I was giving senators all the detail.
Paul:The PBS was interesting ten years ago.
Felicity:Um I don't know, but you weren't leaving anything up because senators could just ask and ask and ask until they wanted to, and they'd all agree, no, we're still going with this, no, everything else can wait. And so it was about getting the detail and the information on the record for for both parties. But the issue today is that you can't. And so if I if I was to give those kind of answers, I would expect uh under this regime, I would expect to be pulled up on it because I am taking up their time and it's really easy to actually stonewall senators and members members these days, uh because there are some joint committees, because they don't have the time. Whereas there should be a rule that says the yes and no answers, and you're not allowed to do that. And for every every bit of waffle you do, we add ten minutes onto the notes. Well, yes, right.
Paul:I do think we can learn some stuff from the congressional hearings in the US now. That that has got that's like a blood sport now. It's probably gone a little bit too far. But where senators say a as they're as they're cross examining someone, whether it would be an official or someone else, they'll say it's a yes or no answer, stop, I'm reclaiming my time.
Speaker 1:Yeah.
Paul:Stop the clock, I'm reclaiming my time because they they go off the waffle and the the congress the Congress people or or the or the uh the senator stops them.
Felicity:Yes.
Paul:We're all so polite in Australia. It's a John Faulkner who's probably was the And Robert Ray. Robert Ray they were Robin Bishop. Yes Brahman Bishop. Well well John but John they were never John Faulkner in particular he was never aggressive. No no I mean it was sarcastic.
Felicity:Yeah and and and they interrogated. Yes he interrogated it was it's like you know if if anyone's actually been a witness in court I mean no one no one ever says aw, can you be more respectful and nice to them please? It's direct your objective obviously in that thing is to represent your and to actually go after the information. And no I never found them to be you know s some were pretty aggressive at times not normally.
Paul:Well would ask questions for two hours on one issue.
Felicity:Yeah well and that's okay because the point was to go to the point and understand it. Penny Wong used to do it all the time Senator Wong so I I I I lament it because I think you know also when we've got the whole the egregious FOY proposed changes which are further we need to discuss that at some point in the next couple of weeks that's very bad further denying the Parliament and the people transparency on what's going on I I love I go to a a function you know for anything that's to do with the the PBAC and the the HTA systems and departmental officials are always talking about we need more transparency, more transparency.
Paul:Yeah of our stuff not your stuff not your stuff yeah so I I would like to bring that up so we we have this movement of that's the antithesis of what the Robert Ray's the John Faulkner who changed FOIN I think we could devote a whole podcast to that subject because it is very disturbing what they are proposing to do on on FOI and for for a a government that in opposition really criticized the coalition over a lack of transparency these FO FI proposed changes to FOI destroying a labor legacy but also also you know the AI excuse. We've been inundated with AI FOI requests. An FOI you've got to put your contact details like you've got a whole legal department in each of these agencies they can pick up the phone and they outsource a lot of that FOI work as you and I know all right we have to finish because I gotta make sure I get some sleep to watch F1 in the morning. Oh yes you're still jet lagged aren't you go Oscar I'm excited I know I've got nothing at the moment so I guess the football's over and the cricket only lasted for two days and I'm yeah that's so I'm what I was watching I was watching American college football this morning that's how desperate I was well Oscar Piatri's going for the win tonight so alright well don't don't jinx him I'm not going to I said he's going for the win I think he's a Richmond supporter I read somewhere I guess it's better than Carlton how can it be like he was raised in Brighton how can he be a Richmond Brighton he should be a St Kilda supporter but he's a he likes to win so supporting St Kilda would not be practical. No that is true although I think they might be having a good year next year. Alright thanks Felicity and thanks everyone thanks Paul