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' Week in Review - 12 September
In this week’s episode, the Medical Services Advisory Committee’s rejection of adding Pompe disease to newborn blood spot screening is condemned. The decision is contemptuous, inhumane, and riddled with fabricated justifications based on made-up terms like 'parental hypervigilance'. Families’ lived experience highlights the devastating cost of delayed diagnosis. The committee ignored evidence, misused language, and hid behind flawed economic models while dismissing patients. Health Minister Mark Butler and the Prime Minister can show moral leadership and finally honour their promises of 'never again'.
Two, one. Hello and welcome to the Dispatched Week in Review podcast. My name is Paul Cross. It is Friday the 12th of September and I'm delighted to be joined by my co-host Felicity McNeill, PSM, Chair of Better Access Australia. Hi Felicity, how are you? Oh
Felicity:look, I've definitely had better weeks, but yeah.
Speaker 00:Well, you know... You may have seen our publication this morning.
Speaker 02:Yeah.
Speaker 00:And my immediate response to the decision of the Medical Services Advisory Committee to reject the addition of Pompe disease to Australia's newborn blood spot screening programs looked I really stewed on this overnight. So I saw the outcome yesterday, was just furious for the families and the patients, all of whom advocated for this, as revealed and as confirmed in the outcome statement. They've been treated with contempt by this committee. The outcome is contemptible. And frankly, I don't think these are serious people. And I think we've got to stop treating them, or we've got to start treating them the way they treat us, which is with a fair degree of contempt. These feckless losers have just had it their way for too long, and the wanton disregard for the well-being of newborns in this country. They're just rolling over of the suffering. The reason we need newborn screening is because our systems of diagnosis are so ineffective. And the fact that our current prime minister and health minister used the experience of one family with little Nate
Speaker 02:I believe the now health minister did a beautiful post of Jenna and Nate saying, quote unquote, never again. And yet, MSAC is saying absolutely a hundred times over, we will do it to you again. Well, nothing will change for that family. And again, and again. Yeah. And, sorry, look, you know, I'm, I struggle.
Unknown:Yeah.
Speaker 02:Thank you so much. who has to ask her husband to wheel her into a shower to wash her hair, to attach her to a breathing apparatus every night to sleep. Every time you ask those families to go in and fight once again for a diagnosis that would allow them a child to live or allow someone to live with a quality of life that doesn't make them live hand and foot relying on the National Disability Insurance Scheme, People like me have to stop and question ourselves and say, are we doing the right thing? I believe I am doing the right thing. I believe you're doing the right thing. But I believe that those in government, the people that wrote that piece of paper, should be ashamed of themselves. The articulation of... excuses to get around this. I find it farcical that our health technology assessment bodies like to preach from the top of the hill that they are all about the evidence and the economy and everything that has to be right and true. It's all scientific. If you read that summary, it's about how the hell do we get away with saying no?
Speaker 00:Yes.
Speaker 02:So what we will agree to if we read the spinal muscular atrophy consultation summary from the PBAC in November 2020 about the desperation even PBAC admitting that there seems to be a problem here with earlier diagnosis will lead to better health outcomes, leads to pre-symptomatic treatment which can show a longer term sustainability of a stronger healthier life and the desperation of all those clinicians in that room that said the treatments are great but if we don't diagnose it's too late we can have that conversation and we can be honest about it and we can take the evidence. But when we just want to say no to something, these committees just make shit
Speaker 00:up. Yeah, I mean, what the actual F was basically my response to this outcome. And I would urge people to go and read it. Just search for MSAC Pompe disease and it will come up. Adding this disease to Australia's newborn blood spot screening programs would cost around $40 So there's no question of cost. The Commonwealth has given the states and territories $100 million in the last two to three years for their programs. So there's no shortage of money to make this happen. the lament of this committee and the fact that, oh, 18 screening would mean we'd have to treat that baby 4.6 months sooner. And then this very strange use of language to excuse their decision. So they say that 58 people would be screened as needing further diagnosis. Of that, most would be false positives or borderline. So we could set them aside very quickly.
Speaker 02:So
Speaker 00:any concern for the parents and families would be incredibly tamped Which
Speaker 02:we already do for existing conditions.
Speaker 00:So that would leave 11. Each year, one would be early onset, infantile. One would be Nate. And they've just rolled over Nate.
Speaker 02:Yeah.
Speaker 00:There's no real discussion about the potential benefit to this child and their family. And then they talk about 10 other... diagnosis would be later in life or in adulthood.
Speaker 02:Like Renee's and Raymond's and children at 15 and 16.
Speaker 00:And they talk about the anxiety and stress this would cause. They use very strange terms like parental hypervigilance. And frankly, I don't even know what that means, to be honest. It's like a made-up word. And these people are very good at making up words. But it's an insult. It's an insult to reason They claim that it could potentially undermine public confidence in the program, in newborn screening, which to me is almost too stupid for words. Because what they're saying is that if this program actually delivers on its purpose, on its stated purpose, it could undermine confidence in that purpose.
Speaker 02:And I really want to call that out for a moment because we've been talking about this for years since we first, thanks to Dr. Freelander, who I'm sure must be thrilled Thank you. 890 go home with no further follow-up. And five babies each day are identified as potentially having an issue to be followed up and explored. Majority of those turn out to be no. All parents who've had that experience, and I've spoken to a lot of the parents who initially got a, we need you to come back in because this result looks slightly different and we need to do further testing just to be sure. Most families then get sent home again saying, it's okay, but we've looked at it and we double-checked it. But for one family, It literally saves their child's life with a number of the diseases that are already listed on the newborn blood spot screening program. So to say that that might cause a problem, to say that it might cause a problem because we diagnose at birth that there is a probability that your child at some point through their life might develop a debilitating disease, which if you treat before it takes hold, will prevent disability. Most families, in fact, all families would like to know because the experience that most of us have with children who go on a diagnostic odyssey or as adults go on a diagnostic odyssey of 10, 15, 20 years of trying to work out what's going wrong and the irreversible damage that is done by that point in time, that's actually a good thing to stop and prevent. If you ask the CEO of Childhood Dementia when she spoke at ARCS and some of the HTA advisory people, It's just not in her interest to know about her children. This is a woman who has two children with childhood dementia because they weren't screened for diseases that could have identified that. And her children and her family have to live with that consequence of not being able to protect their children. And to say to families and to say to individuals, look at Crystal Barda talking about wanting to know about genetic screening for her children because of her history of cancer. We don't think you should have that information. We think you will be too hypervigilant. As you said to me, I am a mum of two girls. I am absolutely hypervigilant when it comes to their healthcare and fighting for it. But that is the condescension of scientists and doctors who think they know best and do look at parents when we are fighting for our children's health as if we are overreacting, as if we are reading things into it. I don't do Dr. Well, do you think
Speaker 00:these people are clueless or cruel? I'm not sure. I mean, it could be a little bit of both. Is their brilliance just sort of too subtle for the rest of us to notice? Because the condescension is so grotesque that they presuppose to know what is in our interest and what is the interest in the interest of a parent. The fact that, well, if you know that your child might be at risk of something, then that's going to make you behave in a particular way. Well, yeah, and can I just refer, I want to refer to an email response I got to this morning. I'm not going to name this person just out of respect, but she sent me this lovely heartfelt email in response to the article. And two of her children live with a rare condition that is not screened for and in fact is one of the conditions that they didn't even bother looking at, which is appalling. And she talks about how by the time they were finally diagnosed is? That already lost six years. And she describes it as six years of confusion, decline, and missed opportunity, despite her repeated attempts to get someone to look at it properly. They finally were diagnosed, and they were treated. And there was an improvement over 12 months. But of course, that's led her to say, well, if they'd been screened, we could have treated even earlier to stop the degenerative nature of the disease. And she said, it's a beautiful email. And I got quite emotional when I read it. And... She says, this is a quote, of the people on this committee to condescend to patience. And some stuff has gone on in the past 24 hours, which we probably shouldn't talk about, but the condescension almost has no limit. And I'm absolutely appalled by what I've learned in the way this has been communicated. And it's just not good enough.
Speaker 02:No, it isn't good enough. And like I said, I'm having a hard day today and it's not my family But it is... It's a bit like when we read the MSEC advice that was very comfortable articulating that it would be cheaper to terminate children than it would to actually treat them. The lack of ethics, the lack of understanding of what our health system is supposed to be is infuriating because this was a, and I'm also angry at Mark Butler. I am actually really angry at Mark Butler and the Prime Minister. And yeah, we're going to come and talk about this because you promised. You absolutely promised. They
Speaker 00:used that family.
Speaker 02:They did, twice. And what is worse is you can decide to show leadership whenever you want. We finally have some contraceptives on the PBS after 30 years because Jed Kearney and Mark Butler turned around and said, we have had enough of you, HTA bodies. Fix this. We begged you when you agreed to this election commitment We were the ones. Better access came to you. We worked it out. We told you how to do it. We said, do not give this to MSAC. Do an MBS task force review, put independent people in the room and do it once and do it well. But no, you let your department and the state departments run riot over you and say, let us follow this process. And if you hide behind this, if you hide behind this and say, well, sorry, that's what MSAC told me, communities will never forgive you for this because you promised Well, it's hard to interpret it any other way. So when is he going to show some leadership? When is he actually going to say, you know what? I've let the department and I've let my HTA bodies ruined my commitment to the community babies are dying on my watch people are missing a diagnosis on my watch and lovely mothers such as the one that has sent you that email this morning are suffering and knowing that you're going to let other children suffer because you don't have the strength of moral leadership to turn around to these bodies and say I have had enough you show me how to do it I gave you a hundred million dollars not one new disease has been added nationally you even got recommendations for sickle cell and thalassemia in November 2023, still nothing happening because then it goes to your state colleagues and they go, we should definitely seriously think about doing that. And this is the problem. This is a bit like what you were talking about last week with Rare Cancers Australia, the disrespect to those families, a minister that says, sorry, I'm a bit short on time. You should try having stage four cancer and talk about what not having a lot of time is. But you are allowing the system to say, Data patients, the process is far more important to us and you're just too expensive. If you read that MSAC article, because it is so cheap, 44 cents a baby, they over conflate the issue of, then we'd actually have to treat you. We'd not only treat the nates of this world, but we would treat the people who were diagnosed between the ages of eight and 50. And that's expensive. It's actually not expensive. Did you know that people who have Pompe and diagnosed with Pompe are are automatically eligible for the NDIS because the NDIS recognises this is a degenerative disease that does untold harm and needs massive support. But you could be funding that drug from the moment, giving it pre-symptomatically, and we could have children and adults like they have in the US who are living long, healthy, unimpacted lives. They live a normal, healthy life the way that everybody wants for their child, that everyone wants as an adult. But no, we don't do that.
Speaker 00:Well, there's so much wrong... with this outcome. I mean, when you read it, I mean, I said this morning, I'm not convinced a human being wrote it, to be honest.
Speaker 02:But see, I would disagree with you. I think GPT is much more humane than any of our HTA bodies.
Speaker 00:Well, I think, because I woke up this morning and I was so angry, so I really let loose. But, you know, I just, for me, the lament of having to actually treat people, I mean, essentially they're arguing against any form of screening. And so the hundreds of millions of dollars that the MRFF has put into genomics, why are we doing that?
Speaker 02:Well, we shouldn't.
Speaker 00:We should save that money. We should just forget about that. Based on MSAC's view that a diagnosis is problematic because it might make people think about their diagnosis.
Speaker 02:Yes. So what we'll do is, well, then maybe we can cancel all that money. We can fund that into the PBS for that end-stage treatment that we're going to need.
Speaker 00:Well, we're going to talk about that. But for me, this is very easy for Mark Butler, actually. Because MSAC is purely advisory. He can just do a Greg Hunt. Greg Hunt completely ignored this committee on spinal muscular atrophy because he said, well, hang on a moment. We're funding drugs for the PBS for pre-symptomatic spinal muscular atrophy, including a gene therapy, I believe, and we're not screening for it. That makes absolutely no sense. And as you rightly recall, unfortunately, until this outcome, the worst in the history of any HTA advisory committee where they basically said it's cheaper to terminate the babies than it is to treat them and that might be that's only a slight paraphrasing of what they said by the way it
Speaker 01:is
Speaker 00:okay so prevent the birth because it's cheaper than treatment this one is appalling in that way Greg Hunt all those years ago said I'm not copying this and wrote to the states and territories and said I want you to add SMA and they did
Speaker 01:yep
Speaker 00:took a while took a while well done
Speaker 01:Victoria
Speaker 00:Pompeii Pompe disease. Minister, Prime Minister, you use this family and you use Pompe disease as the case study of the need for action. Well, here's your opportunity, Minister. Here's the action. Forget this committee. I said this morning that this committee has lost any moral authority. Whether they had it in the first place, I'm not clear. It is a feckless outcome by a feckless committee comprised of people who I cannot respect. I'm sorry. You want my respect. You haven't earned it. And in fact, if you did have any, respect in the community. You certainly don't have it now. This is an absolute disgrace and you should be ashamed of yourselves because it is an appalling, inhuman outcome that dares to condescend to families like Nate's who are still recovering from that process.
Speaker 02:They are. And then, like I said, it's about, there's lies, lies and damn statistics and the incredulousness of them, which is, we're going to have, we can't, this is supposed to be for newborn screening only and we will diagnose people And that's not the ethos of this program, which is what will potentially cause harm. So I'd like to remind that incredibly intelligent, wise committee that we screen for cystic fibrosis, have since the 80s, didn't even have treatments back then. Did you know that 12.5% of people with cystic fibrosis have adult onset initially? Did you know that we screen for cystic fibrosis at birth and actually you can actually not develop it until your teens or adult years? And in fact, In Italy, the average age of diagnosis in an adult is 35.4 years. So, you know, there's a slight problem. Second of all, the blessed SMA. We love that one because that's been such a great point. And the irony of that one was it was because of PBIC having consultation meetings where clinicians were getting very angry saying, I'm not getting a chance to use the drug because I can't diagnose it. It's fast enough. SMA and the New South Wales site clearly says that they cannot differentiate a newborn blood spot screening what type of SMA you have, whether it's the critical infantile or it's the late onset ones, the type threes and fours that you develop in your 20s and 30s. Yet we still screen for it. Why? Because the importance of saving that one child who has infantile SMA, the importance of informing someone who has the risk of developing that at later onset and will also need treatment at some point is the imperative. So to now be hiding behind a whole, sorry, it's only for newborns And if only we could separate those 10 people that would be diagnosed later and put them into another food chain of diagnosis odyssey, that would be great. This is what I am so frustrated about is the lies, the lies and the hypocrisy in this document. And the minister and the prime minister have to call out the committee on this and say, you, you are misleading me and you are misleading the community. So on your very nature, I apparently have to remove most diseases I screened for in newborn blood spot screening because I'm already damaging the program by putting SMA in it. I'm already damaging it by putting in cystic fibrosis. So can we just stop with the... So I was going to swear again, and I'm trying really hard not to. Stop with the lies.
Speaker 00:Well, again, I encourage people to read the document. The document that nowhere recognizes the issues with diagnosis in this country. No. The fact that the problem is the reason we need screening of newborns for this and so many other diseases and conditions is that we don't diagnose particularly well. And that was the issue with Nate. It's the issue with a lot of patients with Pompe disease and it's the issue that the lovely mother who emailed me this morning was explaining. And There's this sort of blithe dismissal or non-regard for that. And this idea that, well, it will cost $800,000 over the next six years is what they say. But of course, it means we're going to be trading earlier.
Speaker 01:And
Speaker 00:that's going to cost money. Yeah, that's exactly right. It's going to cost money. We're paying for art therapy and cruises in the NDIS and you're saying that we shouldn't be treating children, infants, adults, adolescents at the earliest possible opportunity to ameliorate the impact of these degenerative conditions. I'm sorry. These people are moronic and I cannot accept it. You go in that room and you think you have some sort of mystical power that enables you to exercise this disgraceful authority over all of us that damns us, but damns these infants and these children. I'm sorry, I'm not accepting it. And Mark Butler and the government in general need to do something about it. And they need to have a good hard look at this committee and say, what is the ethical framework that they're operating in? Because I look at it and I can compare it to something, but I'm not going to because it's inappropriate.
Speaker 02:So again, I know we need to move on to other things, but I'm going to read out again from the essay a consultation in 2020 about why what one HTA body is saying and admittedly it was clinicians that said this to PBAC but at least the PBAC documented it. Clinicians considered that initiation of treatment as early as possible ideally pre-symptomatically is a more important factor than which of the available treatments are selected. Access to pre-symptomatic treatment and early diagnosis and newborn screening is inconsistent between states and territories. Consumers and clinicians are expect frustration that there is no standard pathway for diagnosis across Australia. Clinicians stated that in considering which treatment to use, a whole-of-health approach is necessary. But again, newborn screening, family preferences and accesses to services and diagnostics. Everything was about in this. Without diagnosis, there is no treatment. It's what people were saying at Parliament the other week, particularly in the rare cancers, not only the horrific out-of-pocket costs, but But it got to that point in the first place too, because they didn't get a proper diagnosis. Diagnosis in Australia is one of the greatest failings that we have. And now we know why, because the gatekeepers don't want you diagnosed.
Speaker 00:Yeah, because it's going to lead to treatment. And hypervigilance. I'm sorry, the species has lasted as long as it has is because parents are hypervigilant about their children. And if that's meant to be a negative, well, I'm sorry. I'm sorry. These are not They're not serious people. They're actually unserious people. And I just have no respect for this. I have no respect for this outcome. And frankly, I have no respect for this committee. And speaking of unserious outcomes.
Speaker 01:Yeah.
Speaker 00:Let's go to the- Multiple
Speaker 02:myeloma.
Speaker 00:Multiple myeloma stakeholder meeting outcome statement. Now, blessed process, all of the non-government attendees had to sign confidentiality agreements that talk about a public health issue.
Speaker 02:And their conflicts of interest.
Speaker 00:and conflict of interest. We were talking about this yesterday, and I wasn't sure whether to laugh or cry, to be honest. I wasn't sure whether to laugh or cry. There are so many cracking lines in it. My personal favourite is the one about making sure clinical guidelines are adjusted to support cost-effective and financially sustainable treatment.
Speaker 02:Yes. That's a cracker. Because we want to reduce overtreatment and unnecessary medicine use.
Speaker 00:And where they say, in 2024-25, PBS expenditure on multiple myeloma listings was $341 comprising 11% of the total $3.1 billion expenditure on cancer drugs at published prices. Now, the critical bit there is the at published prices means that the actual spending is less than half of that.
Speaker 02:Because we know that because the department disclosed all that data for the Vancouver
Speaker 00:Post. So let's say we're spending, I'll give them the benefit of the doubt and say the $341 million that we're spending on multiple myeloma listings is probably somewhere between $150 and $200 net. Okay, Australia spends around $125 billion on healthcare every year from all sources. So that is something like, well, it's less than 0.2 of 1% of total health spending on this country is for medicines to treat a form of blood cancer. And we're talking about financial sustainability? How about life sustainability? How about patient sustainability? Can we actually talk about this in the context of what's good for patients? And I'm sorry, This idea that we've got to say, we've got to condescend to patients that financial sustainability, which is a completely made-up political construct, is somehow in the interests of patients?
Speaker 02:Yeah, and so this is, again, where our HTA bodies and the department that supports them need a good reality check and an ethical check because here's the other thing that's in there along with this whole we're overusing these medicines as 0.001% of the population. Stakeholders, hmm, stakeholders has noted the median age at diagnosis for multiple myeloma is between 65 and 70 years. The median survival is five years and the Australian life expectancy is around 85 years. And consider that in the future, most patients may only require two or three lines of therapy before age-related comorbidities limit further treatment or death from another cause occurs.
Speaker 00:So you're going to die anyway.
Speaker 02:So can we make it a bit more cost effective? Because we just kind of go, you know, it was a bit like when we laughed at the whole supposed lung cancer screening, which isn't. It's a diagnosis because MSAC said, yeah, but they'll die of something else. So, you know, can we just let them die of that, please? Like, seriously, we think... that it's okay to say these things in a way that it justifies it. Look at us. We're being transparent. We're telling you that, you know, you're over 65 and, you know, really should we bother betraying you?
Speaker 00:Yeah. So here's what this is symptomatic of. Same as the MSAC outcome on Pompe is symptomatic of this particular issue, which is that– When the institution in Australia talks to itself, it all makes sense. The most appalling perspective, the most inhuman perspective makes perfect sense. I don't think it would make a lot of sense to people looking from the outside in. And I actually think about New Zealand. So still, when you go to New Zealand, people recoil at the thought of political intervention in decision-making in healthcare, which to us is like, what? What? They can't get their head around the fact that in Australia, ministers can put their foot on the system. And it actually works. It actually works. But I think the same applies in Australia. So, look, I'm speaking at an event this way involving– that's involving the private cancer physicians of Australia led by Christopher Steele, a great man from Albury-Wodonga.
Speaker 02:Bloody legend.
Speaker 00:Yeah, absolute legend. Yeah. And it's all going to be about HTA, I suspect. And I just don't think– I don't want to talk about HTA. I literally don't want to talk about it. I have virtually no interest in it other than the critique. Because, I mean, we were laughing about this yesterday, imagining that– because what they do is they aggregate all of our conditions into those stupid economic models. And, I mean, they're completely bogus. And imagine if you're a treating physician, if you're a hematologist and you're an oncologist and you're talking to your patient, and basically you're trying to adjust your– or your patient's treatment based on their individual need. But that's not how our system works. Our system basically has an AI bot sitting on the doctor's shoulder saying, well, actually, no, no, no, no, no, no. We have to aggregate this patient's experience. And unfortunately, they were diagnosed very early. And unfortunately for us, that's incredibly inconvenient. So this is what we're going to assume. And these are the treatment options we're going to give you. That's how the system works. And I just think it's an affront to all that is human. But I think We are all so institutionalised that it's really hard to step outside this because people in this system struggle to conceptualise a world outside of this illness we call health technology assessment.
Speaker 02:It is, and as someone who gets to work in both the NDIS and the health system... The NDIS is participant-based. Your program is your program. Your needs are your individual needs. So certainly it's categorized by the type of disability or comorbidity of diseases that might be impacting that disability. But in the end, it's about you as an individual participant. Now, we've also got a bit of a problem with the growth in the NDIS, which needs to be addressed.
Speaker 00:Up there. But
Speaker 02:we do need to understand that there is a midway point between the two, because in the health system, we are treating you completely at a population level. I don't want to know your personal circumstances and your comorbidities. I just want this. And I've got at the NDIS participant level, the health system needs to learn a little bit about that variability and that humanity of the individual experience, because we are individuals and we are human. And I get that when you have to say no to things, it's very easy to think at a population level so you don't have to stare the patient in the face and say, I'm sorry, I'm not treating you or I'm not diagnosing you. That is not the outcome for people and for clinicians working in our health system when there is a patient in front of them. And we need to inject some of that humanity and remove this tokenism as if you somehow understand and become you work in this area, it gives you the right to say this is what is going on in a patient's mind about diagnosis. It's fine. You know what? There are many things that we've diagnosed for many years where there are no treatments. And that's good, but at least we know what the diagnosis is. I don't think anybody who hasn't had to live the journey of a diagnostic odyssey or who has had to care for a child with a diagnostic odyssey that goes on for a decades, you have no idea. And to take away the right, that is health literacy. Knowing what is wrong with me, knowing what I might have inherited because my family has a history of diabetes or cardiovascular disease or arthritis or cancer. You expect me every time I'm admitted to a hospital to give you my frigging life history, but you don't want to give me a test that would actually help you protect me and my children to prepare for something that may come along on a journey and stop me having a deleterious degradation in quality of life for me or my family. It's just offensive. And it's really time that we had a different conversation. And I'm with you. I am so sick of HTA. Our design of how we fix the system has basically got bugger all to do with it because it just needs to change the principles of how we actually engage in the health system and how governments fund this. and I can only hope that This really, really dark grey cloud that is this public summary document has the silver lining of making people finally wake up and say, enough is enough.
Speaker 00:Well, Mark Butler, you have young children, so you can at least walk a mile in the shoes of those families. No one would ever wish on you what some of those families have experienced. And you know what they've experienced because you've spoken to them. And I think there's an opportunity for you here. The use of language by these I don't think any of them have a great grasp of language, to be honest. I don't think they've given much intellectual thought or consideration to what they do. This is just numbers into economic models. This is what it is. Unfortunately, some of these people bring an ideology to these committees, and that is not transparent to us. But this outcome on Pompeii reeks of ideology. It reeks of ideology, and it's offensive. It is utterly offensive. and it is unacceptable to who we are in this country and who we want to be. And when we have the level of debate in this country about all you need is your Medicare card, your Medicare card. Well, the Medicare card is going to be pretty useless to those people who aren't going to be diagnosed until it's too late because that is the decision, Minister, of the committee that you can terminate tomorrow.
Speaker 02:And I think it's more insidious than that because if I think about the process that led to the, oh, let's all consult on how we should reform newborn blood spot screening. And when the state and territory governments as well as the feds did their consultation process and they put their own little subcommittee together and decided, we'll decide the tranches of the diseases that we'll actually put through MSAC. And at that starting point, they left Pompeii off the list.
Speaker 00:Yeah, so there was always an agenda not to include it. There was an
Speaker 02:agenda not to include it. And it was only, again, because of the Australian Pompeii Association, Better Access, where we literally kicked up a stink and blessed Raymond because he said, if the prime minister wants to tell me no, he can come and tell me to my face. And it was only through that that the minister obviously intervened and said, you will put Pompeii on that list. But the the philosophical objection to this disease and having been to multiple conferences where clinicians think it is okay to stand up in front of patients and say, yeah, but if I diagnose the child and it's not infantile, it's late, then they're going to be on my books. I'm going to have more people, more hospital visits. We're already swamped. It's like, sorry, I'd just like to say, do you say that to someone? Sorry, we've done 12 heart attacks today. We're not doing any more. You would never say that. But also the DQ you're so used to dealing with patient suffering and horrific diseases of degenerative natures that you think it's okay to talk to people that way, to talk to families that way. I sit and talk to families who, a family with a child with Pompe, a family with a child with PID, and who both left America because they wanted a better healthcare system for their children. Both of those families suffered irreparably because In Australia, they weren't screened. And so let's cut the codswallop and let's really call out the fact that when clinicians feel it's okay to say publicly in a room full of sick families, sick children, sick adults, that you'll be a burden on the health system because I'll be able to treat you earlier and I'll have to keep monitoring you because now I know something, well, shame on you. But this is why we get to this moment.
Speaker 00:Well, these are political statements, these. outcomes. They're political statements when we have to see them that way. And because, you know, and we can finish it in the way we began in a way, is that this committee has treated these families and these children and these adults with contempt. And I'm sorry, that's what they're going to get back, certainly from me and I suspect from you, is utter contempt. They're a based on this outcome. If you're not going to show any respect to these families who have gone through the ringer, they have gone through the ringer and they are living with the fact that that this poor child was not diagnosed. Not only was he not screened, but he was not diagnosed. And you have the temerity to speak to them this way. And I'm sorry, it is shameful. So I've got no respect for you. And I'm not going to pretend I am. And I'm sick of people being polite. I'm sick of people, because people are suffering and are dying as a result. And we can pretend that HTA is the solution. But it's not. And any discussion around HTA is just a way to avoid real action. Minister, you can fix this. You can fix this tomorrow. And I think about, was it Renee? Yeah. Basically, she felt like she was told just to go away and die.
Speaker 02:No, go away and die quietly,
Speaker 00:please. Go away and die quietly. And I'm just appalled by it. And if nothing happens about it, I'm not going to stop, but I'm not going to pretend these people are anything other than unserious. And unfortunately, they have some influence. And... It's a real shame because as I said to you today, the only thing the minister should be saying about this committee at the moment is it's time to spend more time with your family and pursue other challenges.
Speaker 02:Yeah, and I wish he would. But like I said, in the meantime, I think all patient groups should be all getting together and saying, we should just stop all that research you're doing because you're lying to us because you're never intending to do any of this. So let's just move on and use that money for something else. Maybe we can all go on a cruise.
Speaker 00:Yes, we can all go and have some art therapy. But no, it's been an appalling... week for this because of this and I just I have to believe that Mark Butler looks at this and just goes what are you doing I have to believe that I have to he's spoken to these families he knows what they've been through if little Nate was born today he would go through the identical experience that he went through all those years ago and I just I cannot believe that he accepts that as a reasonable outcome this committee has rolled over these newborns for the sake of avoiding parental hypervigilance.
Speaker 02:Well, you have greater faith in him than me at the moment. And I know I've got to be careful because I'm still feeling a bit emotional for the families. But this was a decision taken by MSAC in April. The minister's known about this decision for months. He could have stopped it. He didn't. Now it's public. Game on.
Speaker 00:Yeah. All right. Well, not a happy podcast today because we've got nothing to be happy about at the moment. And I'm sure most people feel like we do I just hope people are willing to join in and do something about it
Speaker 02:and I just want to say a final thank you to not just the families who are living with Pompeii or living with the trauma of no longer having family members lost to Pompeii but also to the many other families there's some incredible people in SMA NPS all these other areas who try and all help each other in STID and PID who try and help us at Better Access keep this fight going and what I always find incredible about these communities is that it's not just about their disease they want this journey to end for this journey of despair to end for any family for any disease and they continue to stand up and fight so while they're busy caring for their own children big shout out to Katie and Reena who's you know about to have to go through some more more difficult times still there how can we help what in What information do you need? And I think that's what your listeners need to remember. There is a very small group of communities here that fight so hard for each other, not just for themselves.
Speaker 00:What did Mark Butler say when he announced the newborn screening? Never again. Never again. Never again. Well, you've got a chance, Mr. Thanks, Felicity.
Speaker 01:Thanks.