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Episode 17: Type 1 Screening with A/Prof John Wentworth
77 Plays26 days ago
In this episode of the Type 1 Club Podcast, host Jacqui Kidman sits down with Associate Professor John Wentworth, a leading researcher in type 1 diabetes, to discuss an exciting and hopeful new chapter in type 1 research and prevention: Type 1 Screen.
Together, they explore:
- What Type 1 Screen is and why it matters
- How early detection of type 1 diabetes can prevent medical emergencies and change outcomes
- The simple, non-invasive process of screening
- The bigger picture: how research is evolving and where it’s heading
Whether you have a family history of type 1 diabetes or not, this episode is a must-listen for anyone who cares about the future of health, prevention, and proactive care.
🔍 Take Action: Get Screened Today
Type 1 Screen is a free, voluntary test that checks for early markers of type 1 diabetes. It’s quick, safe, and could be life-changing.
✅ Who can get tested?
Children aged 2–30 years with a relative who has type 1 diabetes (parent, sibling, cousin, aunt/uncle, or grandparent)
🧪 What’s involved?
A simple finger prick test (at home or with a pathology referral). If markers are detected, you’ll be offered support and access to monitoring and research studies, including prevention trials.
🌐 How to do it:
- Go to www.type1screen.org
- Register online
- Choose your test type: home kit or pathology referral
- Return your sample and wait for results
🧭 More Info & Support:
Visit https://www.type1screen.org for FAQs, eligibility, and next steps.
💡 Why This Matters
This screening initiative is one of the most exciting advancements in type 1 diabetes research. For the first time, we have a tool to predict, monitor, and potentially prevent the development of type 1 diabetes before symptoms appear. Early knowledge = empowered action.
Be part of the change. Get screened. Spread the word. Help shape the future of type 1 diabetes.
Further Resources:
Type 1 Foundation Website
Follow us on Instagram
Join the Facebook Group
Recommended
Transcript
Introduction and Purpose
00:00:00
Speaker
The content provided in this podcast is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
00:00:14
Speaker
Reliance on any information provided by this podcast is solely at your own risk.
Welcome and Podcast Overview
00:00:23
Speaker
Welcome to the Type 1 Club. Whether you're a parent grappling with a new diagnosis, a caregiver seeking guidance, or simply someone wanting to learn more about type 1 diabetes, this podcast is for you.
00:00:36
Speaker
Together, let's dispel myths, break down barriers and build a community of understanding and resilience. Join us as we embark on this journey together because with knowledge, compassion and support, no one should ever feel alone in managing type 1 diabetes.
Guest Introduction: John Wentworth
00:00:54
Speaker
Welcome to the Type 1 Club.
00:00:59
Speaker
Hey everybody and welcome back to the Type 1 Club. I'm your host, Jacqui Kidman. Today on the podcast, I'm honoured to be speaking with Associate Professor John Wentworth.
00:01:09
Speaker
He is doing some amazing work in the type 1 diabetes area. He's based in Royal Melbourne Hospital. John is a driving force behind Type 1 Screen, which is an Australian initiative offering early screening for type 1 diabetes that has already changed thousands of lives.
00:01:29
Speaker
His research in immunotherapy and groundbreaking work on accessibility at home, blood testing in is opening the door to early diagnosis and early prevention.
00:01:42
Speaker
I'm so looking forward to diving into this story with John. There's some exciting news that we are kind of going to share as well, or John's going to share, but I'm excited to sort of hear a lot more about the type 1 screen, um the science and then what what the future might hold for type 1 diabetics.
The Type 1 Screen Initiative Explained
00:02:00
Speaker
John, thank you so much for joining me tonight. Thanks for having me, Jackie. did i Did I cover it most things there in your in your little intro? I'm sure there's a lot more. Yeah, no, absolutely. i'm I'm John Wentworth. I'm i'm based in Melbourne.
00:02:12
Speaker
um I work at the Royal Melbourne Hospital as an adult endocrinologist and at the St Vincent's Institute of Medical Research ah in the type 1 research space. And we're really passionate about finding ways to diagnose diabetes early, type 1 diabetes early, so that we can prevent diabetes the irreversible loss of pancreas function that leads that to an insulin deficiency and the need to inject insulin to keep the blood glucose levels controlled. And so ah that that's me. And um i'm I'm really excited to be on the show tonight.
00:02:49
Speaker
All right, so let's just start at the start then for for me because we haven't done the screening. I don't know anything. Let's just, which is always kind of good when I'm very green with this sort of stuff to start just from the basis for all of our listen listeners as well.
00:03:04
Speaker
So what is the screening? So screening for type 1 diabetes involves checking a blood sample for things called antibodies.
00:03:15
Speaker
And when we find antibodies, that tells us that the immune system is mistakenly attacking the pancreas, or more specifically, the little cells in the pancreas that make insulin called beta cells.
00:03:29
Speaker
And we know um from decades of research that yeah if we find multiple different types of antibodies, and there are four main types that we test for, so if we find two or more antibodies, we know that there's a very high lifetime risk of type 1 diabetes.
00:03:50
Speaker
What we don't know from the test is how long it will take to get type 1 diabetes. ah But um we have other ways to work that out by measuring glucose and the the response of both insulin and glucose to meals and and particularly glucose challenges that you drink orally.
00:04:10
Speaker
And so the screening allows us to find children who are at very high risk of getting diabetes at some stage in their life. The monitoring that we do by measuring glucose and insulin levels in the blood tells us how soon they are likely to get type 1 diabetes.
Innovative Screening Methods
00:04:30
Speaker
And the piece of the puzzle that we have been struggling to get up and running that is is is coming very, very soon and is very exciting is that we are rolling out really exciting prevention trials later this year, which mean that not only can we use screening to prevent children getting really sick when they're first diagnosed, but But we actually can now do screening to find children who have the potential to benefit from these prevention therapies that we want to roll out later this year.
00:05:05
Speaker
Okay, so who would be the initial goal person that would do this. So it's it's done via a blood test. So Jackie, to get screened for type 1 diabetes, we need a blood sample.
00:05:17
Speaker
And in in Melbourne, we've pioneered a technique where you can do this at home by pricking your finger, dropping blood onto a card and mailing that card back to our lab to test.
00:05:28
Speaker
And we can see if we can find the antibodies in that in that sample. And the people who we are reaching out to to get screened are people from type 1 families. And that's because children who live in families with type 1 diabetes are at about a 10 to 15-fold increased risk of having these antibodies.
00:05:50
Speaker
it's It's easier, I guess, for us to find people to help um by screening people within type 1 families.
Risk and Challenges in Screening
00:05:58
Speaker
We ultimately want to screen everyone in the nation, but we actually need to work quickly to find people to join the clinical trials for us to work out the best ways to prevent diabetes before we then um expand our resources and and and go to the more difficult task of screening every child in the population.
00:06:20
Speaker
The background rate is about 1 in 300 in the general population. In families, it's about 1 in 20. So one in 20 children um of a type 1 family, they will have a single or are multiple antibodies. One in 40 will have multiple antibodies.
00:06:35
Speaker
um So one in 40 children of type 1 families will be at very high risk of getting type 1 diabetes in the future. ah Yeah, that's so that was always a bit of a statistic that I've always been a little bit nervous about.
Prevention Trials and Outcomes
00:06:49
Speaker
Yes, and it is it is very nerve wracking.
00:06:52
Speaker
And of course, if if we don't have any way to prevent diabetes, the disease, people tell us, I'm not interested because you've got nothing. There's nothing you can do about that. and And I'm fairly confident I can keep my child safe. I can pick up the symptoms of diabetes and I can get them to hospital and get them assessed before they get critically ill with ketoacidosis.
00:07:14
Speaker
That's very true um for many families. so And I guess the thing that is changing now is that we are bringing compelling prevention trials to Australia. and And we should discuss those in a little bit more detail.
00:07:29
Speaker
um But this means that we will not only be able to justify screening by saying we can keep children safe and out of hospital if they get diabetes, but we're also saying we've got things that we can use to prevent or delay the need to use insulin.
00:07:46
Speaker
and And that means... You know, a couple of years without having to inject insulin is is probably the the promise of the the the trials that we've got coming. But ultimately, we want to work out how to do this so effectively that if we find an at-risk child, we can get them onto some treatment that turns off that immune attack and prevents the need to use insulin altogether because their pancreas has not been destroyed by the immune system.
00:08:13
Speaker
We've turned that attack off. So you do the blood test, it comes back to say you're showing antibodies that you will potentially, like we don't know when, but in the future you're you're you're showing a high risk of of getting type 1 diabetes.
00:08:30
Speaker
Then it comes back and then this is part to go into the clinical trial. is it then that they would take the medication or is it when, if they got diagnosed, there's a There's a step in between. There's a step in between because, as I mentioned, we don't, if we find antibodies that doesn't tell us how long you've got until you get diabetes. And for some children, it's a decade, it's even 20 years. And for others, it's unfortunately much less time than that.
00:08:58
Speaker
and And so when we get a positive screening test on the blood spot, the first and most important thing we do is we get a second sample to confirm that result. So we actually then arrange a blood sample, a proper blood sample where we get a serum sample from that and we test it in different assays that allow us to say for sure that this is a positive test.
00:09:21
Speaker
So some of our screening tests come up positive and they turn out to be negative, which is a good thing. But most of them, when they're positive, we do confirm they're positive. And then the question is,
00:09:32
Speaker
are you likely to be needing insulin in the next two or three years? And we work that out by measuring HbA1c, which many of the listeners will know is ah is a measure of glucose in the blood.
00:09:45
Speaker
But we also measure how high the glucose goes after a glucose challenge. Now, that's either a formal glucose tolerance test where you drink a set amount of glucose and and measure insulin.
00:09:59
Speaker
the glucose in the blood at one and two hours after that. Or it can be fairly casual. We can just say to people, have a massive breakfast with plenty of cereal and other carbohydrates and then get your blood test one to two hours after that.
00:10:13
Speaker
And we'll have a look at how high your glucose goes and how much insulin you make in response to that. And so that allows us to judge the you know, how bad or how far gone things might be. And if we find children showing signs that their glucose is trending up and their insulin production is dropping off, they're the children who we will want to then enroll in these trials and to turn off that immune attack and prevent them progressing rapidly to type 1 diabetes. So um to give you a ah sense of it, Jackie, there'll be about three quarters of the children who we have um at high risk because they've got multiple antibodies, but they actually won't have super high risk that would say you should join this trial and take this treatment because you've got many years before trouble's going to happen.
00:11:05
Speaker
It's about a quarter of that one in 40 relatives or one in 40 children. So I guess we're talking about one in 160 of the people we screen will actually have the combination of multiple antibodies and impaired glucose responses That means that we're worried they're very high risk. They're going to have diabetes in one to two years and we want to give them something to change that natural history to say that, you know, they we're going to give them at least another one to two years without insulin and hopefully a lot longer, um depending on how successful these therapies are.
Trial Treatments and Therapies
00:11:41
Speaker
So it doesn't prevent it, but it's just delaying it. At this stage, that's the best we can offer. But I guess when you've lived with the condition for long enough,
00:11:52
Speaker
um having a couple of years without having to worry about it is certainly pretty good value, I think, when we we talk to to families who who are living um with the experience.
00:12:03
Speaker
And I guess it's, you know, it's a stepping stone towards the ultimate goal of fully preventing type 1 diabetes. But the way... the trials work and the way progress goes is we need to do things in relatively small and and logical steps so that we can be sure that the treatments that we have are effective.
00:12:27
Speaker
That's why we need to do clinical trials. And that's why we have, for instance, in these trials coming up, we have a relatively limited treatment duration because the the regulatory authorities want us to show that not only are these treatments effective at preventing diabetes, but they are safe. They do not cause undue harm because they are um suppressing some immune functions, for instance.
00:12:55
Speaker
And again, the the treatments we have, one is a tablet that you take once a day based on a trial that was actually led out of Melbourne from the St. Vincent's Institute, a tablet called baricitinib.
00:13:07
Speaker
You know, that was a trial that showed in people who have just been diagnosed with diabetes that that you can turn off the immune attack and preserve the pancreas function. And the logical next step to to that therapy was to move it earlier in the disease. So not at diagnosis, but at in children and adults at risk of disease ah through a screening program, if you like.
00:13:32
Speaker
so So this treatment, which was a world first study out of Melbourne, is is now moving into the prevention space. It was a treatment for when you were diagnosed with type 1 diabetes, and now we're moving it as a prevention therapy, which and we are very confident and and very hopeful that it will prove more effective for people in a prevention setting because it will...
00:13:55
Speaker
allow them to hold on to more pancreas function. If you don't have diabetes, your pancreas works better. And so if we can preserve that ability, you will do better. You'll have better glucose and you won't have diabetes and you won't need to use insulin.
00:14:14
Speaker
And In this trial, we'll be allowed to treat people for three years. and And so we would expect that over those three years that the drug will be pretty effective. It might not be effective in everyone, but I think in many, many people, it will be effective in preventing them progressing, losing that pancreas function and needing to inject insulin to replace the insulin that the pancreas is not making.
00:14:37
Speaker
So before I ask you some more questions about the the the clinical trials, I just wanted to ask, with the the screening, is that is there a cost that's involved for people to get that done?
Funding and Accessibility of Screening
00:14:50
Speaker
No. So we've been very lucky. JDRF, which is now called Breakthrough T1D, have been funding um this program. for the very purpose of offering screening to families since 2019.
00:15:05
Speaker
And it's it's largely through their support that it exists and it it continues. But I will also put a big shout out to many other people who have helped us, including Type 1 Foundation.
00:15:16
Speaker
You know, um very generous donations from very many people have helped us not only develop the screening technology that we use, but also help us offer the test to people. The test cost us about $50 to $60 to do for each screen.
00:15:36
Speaker
And, you know, through these donations and contributions, ah we we are able to offer this free to anyone living in a family with type 1 diabetes. Okay, so I've got, so Harvey's the one in my family that's got type 1.
00:15:52
Speaker
He's got an older brother. So I would screen him. Would I screen myself and my husband as well? So we're happy for anyone aged over 2. to get screened.
00:16:03
Speaker
And the the reason we don't screen younger children is because the antibodies don't develop in the first two year of life and they're very rarely there before age two.
00:16:13
Speaker
Now, if you're an adult and you don't have type 1 diabetes, you're very unlikely to get type 1 diabetes, but it's still possible. So it's usually parents and children who do it all together.
00:16:27
Speaker
ah But the the highest risk will be in the children. the The more people who will be at risk of disease who will likely benefit from these treatments will be children. um But that being said, you know, adults like to know what's going on.
00:16:42
Speaker
About a half of the diagnoses of type 1 diabetes do occur in adults rather than children. But thankfully, in adults, it's a little bit less aggressive in that um the pancreas function is isn't is luke being lost at a relatively slower rate in adults compared to children because the immune attack is less intense.
00:17:02
Speaker
But that's not to say that these treatments won't benefit adults. And in fact, this trial is going up to age 35. And so we would we would certainly welcome all parents to get screened if they'd like to, if it'd be helpful.
00:17:17
Speaker
um and And indeed, you know if we do find adults at risk, we've got a service to you know provide them advice and connect them to their GP or or other carers to to monitor things.
00:17:31
Speaker
And as I say, thankfully for adults, usually an antibody test is not such a big deal. It's not such a big problem. It's usually only a single antibody. and And we don't often find adults who are rapidly progressing to type 1 diabetes.
00:17:50
Speaker
Don't ignore the four. The four early warning signs of type 1 diabetes. Excessive thirst, frequent urination, unexplained weight loss, and extreme fatigue.
00:18:01
Speaker
If you or someone you know is experiencing these symptoms, don't wait. Get checked by a healthcare professional. Early detection and treatment are key to managing type 1 diabetes effectively.
00:18:14
Speaker
It's interesting that you said about the antibodies generally until they don't present them until at least over kind of one or two weeks. to because I was sort of thinking, you know, there are those, there's the heel prick test when the baby's born, you know, like I was sort thinking, what what's what are those ones testing for?
00:18:31
Speaker
Yeah, yeah, yeah. So that's, you know, it's an interesting point you raise because, of course, heel prick testing, which screens for a number of conditions that are very treatable and very important conditions, would be a great time to screen for type 1 diabetes if it worked.
00:18:47
Speaker
Now, the only way you can use the heel prick effectively in a newborn screening program would be to do a gene test and to find the high-risk genes and then maybe in 10% of those children with those who who have those high-risk genes then arrange antibody testing when they get a bit older.
00:19:07
Speaker
Now, that process would work very effectively for people in the general community. But people from type 1 families have already done the gene test.
00:19:20
Speaker
because they've got a family member with type 1 diabetes. And for that reason, you know, the heel prick wouldn't be that useful in type 1 families for screening for type 1 diabetes, if that makes sense.
00:19:32
Speaker
So maybe just to clarify that a little bit. So when you say they've already done the done the gene test, so are you saying that, so so that there is obviously a gene in my genetics that I've passed on to Harvey? Is that what you mean?
00:19:48
Speaker
or your Or your partner has. Or my husband. i mean they um yeah the ah In families, um we know that, you know, it's you can do the gene tests, but more often than not, you find the high-risk genes in the children.
00:20:06
Speaker
And that would justify antibody testing at a later age, if that makes sense. So the only value of gene testing for type 1 diabetes in a screening setting is if you are trying to screen the general population.
00:20:22
Speaker
irrespective of family history. But because you know because our focus is on finding people to help us work out the best prevention and to advance the field towards a totally effective prevention, we screen families because we know that's where the high-risk children are.
00:20:44
Speaker
And we can't do that on a heel prick because the antibodies that we're looking for Are not there. Yes. Okay. What about like cousins? Could they also be part of this of the screening? Yeah.
00:20:55
Speaker
Yes, so we actually are happy to move into extended families. So really, um we don't we don't really discriminate. If you've got some relative, preferably a blood relative with type 1 diabetes, but we don't even we're not even picky about that. But I think if you have you know if if you have an aunt or an uncle or a great aunt or a great uncle who's had type 1 diabetes, it is worthwhile getting tested.
00:21:22
Speaker
The further away you are in in bloodline from that the affected relative, the lower your chance. But if it's in your family somewhere, your risk is a little bit increased and it would it would justify doing this test. And of course, we'd be very happy for people with distant relatives to get involved.
00:21:43
Speaker
Okay, I'm just trying to think about just expanding the sort of scope. What's your target number for these clinical trials to
Goals and Benefits of Screening Participation
00:21:49
Speaker
get? Well, as I say, we we need to screen over 100 people to find one person, one unfortunate person who's going to be at high risk where where they'll they'll join the trial. So we you know wed probably want to screen 5,000 a year across Australia, probably even 10,000 a year ah once once we're really um going with this trial.
00:22:10
Speaker
and And because there are going to be other trials as well coming through other promising treatments, other treatments that are available or coming in in clinical trials um are ah ones that you give through a vein.
00:22:22
Speaker
um and and people may have heard of teplizumab, which is a ah drug that's approved in the United States that what came out of academic research that we were involved in um a little while ago now And that drug, it's quite effective. It delays disease by two years. So it gives you two years free of insulin.
00:22:45
Speaker
It's not available in Australia yet, but it is coming. And it's a bit uncertain if it's going to be funded by the government or not because it is very, very expensive. but yeah And its other problem is that it needs to be given through a vein with 14 doses on consecutive days. So you actually need a system where you actually have to line up two weeks and make sure that you come in and and and either have a cannula in a vein or have a central line placed for the duration of the 14 days to receive the treatment.
00:23:18
Speaker
But that's something coming um ah in a trial that that's hopefully going to be open again later this year or next year, where it's being compared to something we think is going to be better.
00:23:29
Speaker
And so the the the alternative that we're going to compare it to is called antithymocyte globulin, It's again given through a vein, but it only takes two doses on consecutive days, not 14 doses.
00:23:44
Speaker
um So a much lower treatment burden. And again, that that trial will be you know really exciting to to say more about once we know for sure that we're going to bring that to Australia.
00:23:56
Speaker
Yeah, wow, that's cool. so So the current, just to do a little recap, the current trials, so you're putting a, Type 1 screening is putting a call out now to people to get their screens done and we'll put all those details in the show notes of how they can do that.
00:24:14
Speaker
Then once you get a positive, then it's then then you work out, then there's a second test that's done to confirm But then you work out whether they then get placed into or they get offered to be placed into the clinical trial to look at this prevention going on a tablet or however, whatever the clinical trial is.
00:24:36
Speaker
Yes. Yeah. So one in 40 children will have the high risk antibody measure, or they'll have two or more antibodies. And then of those one in 40, about a quarter will have the high risk glucose markers that mean they should come into the trial.
00:24:54
Speaker
So it'll be about 160 children to screen. children we need to screen to find one will be, you know, who will be high enough risk to say, yes, you should do this trial.
00:25:06
Speaker
So it's still uncommon. But of those other, you know, other children with multiple antibodies, those children we will need to follow closely Because at some stage, they will become high risk.
00:25:21
Speaker
And then, again, we would put them into the trial as well if we see that things progress. So the other part of the whole screening mission is to link children up to facilities to care for them and to monitor them.
00:25:35
Speaker
And the monitoring is essentially having tests every six months to see what the HbA1c and the glucose levels are doing. And if we see things going off, that's a sign to say, yes, we need to do a ah a formal glucose assessment and see if you're eligible for the trial.
00:25:55
Speaker
Wow, it's a lot of work just to get one, you know, just to get them into the trial, isn't it? it's It's an enormous amount of work, but we do this because we actually, you know, we're really we really honestly believe we will get there if we do the work.
00:26:10
Speaker
And the other thing is that the people like who get involved in these things are... not universally, but almost universally so pleased to be part of it. We know that we're providing something that people want and that they appreciate.
00:26:27
Speaker
um and And particularly when we can offer people treatments that that can make a difference to their natural history of of their diabetes. I think that's really exciting.
00:26:39
Speaker
And I think everyone finds it a ah ah very positive experience.
Transforming Diabetes Management Through Research
00:26:43
Speaker
And that's that's that's what drives us. we we kind of We're excited about what we do. And we honestly believe that if we do the work, we will get there and we will transform this disease.
00:26:57
Speaker
It'll become completely different um you know in terms of being able to preserve pancreas function and just make it so much simpler to deal with diabetes.
00:27:08
Speaker
I mean, potentially, you know, you might still need to use insulin, but much, much lower doses and much, much easier levels where you're not having big highs and big lows.
00:27:19
Speaker
um But it's it's this concept of preserving the pancreas, protecting it from that immune attack so that all these issues and and difficulties that arise when we need to use insulin are much less of a problem or or don't exist altogether.
00:27:34
Speaker
Yeah, that's interesting. I wish I had this information on um obviously said on the weekend I presented at a function and one of the parents, but one of the people that were there asked me, you know you know, I've got a 10-year-old and we do have diabetes in the family. how do what you know What are the other symptoms that I need to look out for?
00:27:54
Speaker
And I wish I could have said, well, you could actually go and get a screen. And then, you know, like rather than sort of just wondering, I guess, you know, there is... something, there is that step because I think that we often think Oh, do I want to know? You know, like I think that when when Harvey was first diagnosed, I was kind of like, do I, would I want to know that if my, that my other child, you know, could get type one. But I do know sometimes when James, you know, is thirsty and, you know, he's sort of lost his appetite a little bit, but that I do sometimes do a finger prick and then just hold my breath and think, oh my gosh, you know. Yeah, well, yeah. And and so, you know, this is, this is an
00:28:36
Speaker
Absolutely, um you know, very common worry.
Parental Concerns and Trial Structures
00:28:40
Speaker
And it's a common response to, you know, should I screen my child? Do I really want to know? Do I really want to know that, you know, I'm living with this time bomb and I don't quite know when this is going to happen? And, you know, up until this point in time, half of the people we offered screening to would say, we don't want to know.
00:28:58
Speaker
You've got nothing you can do to to change what's going to happen. And so we would rather just not know. As I say, and then there's 50% of people who say, yes, I want to know because I understand there are ways to, you know, work out what's happening. We can follow things closely and we can be prepared.
00:29:18
Speaker
You know, there's there's that other side of things as well. But as I say, I think the conversation is shifting now because the prevention trials that are mooted, the first one, the tablet one, is looking to open in December.
00:29:32
Speaker
um You know, these first trials are going to be compelling. They're going to really be something that, you know, you you you will most people will want to have known about it rather than have just drifted um happily along until a diagnosis occurred and and you ended up in hospital or, um you know,
00:29:50
Speaker
Maybe didn't get that sick, but, you know, you needed to start insulin because it's too late. i'm not I'm not saying that we've got the full answers at this stage, but I think more increasingly parents will want to know about their child's risk ah because we have interventions coming.
00:30:10
Speaker
Yeah, I definitely feel like I'm on that side now, whereas I think, you know, I i was like when you said like people were like, well, what's the point in me knowing when I can't do anything about it? But if there's definitely something where we could do some sort of, we know that it is coming, but there is that prevention ah delay, you know you know, I can definitely see the benefits in doing that and I will be definitely doing it. Yeah.
00:30:34
Speaker
ah The other thing, I think the other important thing to say about these trials, which I think is also really important and probably, you know, will cloud some people's, um you know, not cloud their judgment, but people will will consider before they screen their children.
00:30:48
Speaker
These trials need to have a placebo arm so that they can get an answer. And so the the trial that's coming in December where we're using a tablet is two out of three children will get the active tablet and one out of three will get a dummy tablet or a placebo.
00:31:05
Speaker
And so again, you know, that's a problem for some people as well, because, you know, it's ah it's a toss of a slightly lopsided coin as to whether, you know, you get active treatment or you you get a placebo.
00:31:19
Speaker
And so again, that's That's, I guess, the thing that is going to be potentially problematic about the the first prevention trial. The good thing about it is that it's a daily tablet, really simple and likely to be really safe.
00:31:34
Speaker
And so, you know, there are all these plus sides to it as well. The second trial I mentioned where there are two active therapies, we've got the standard treatment given over 14 days called Diplizumab and then the new treatment given over two days called antithymocyte globulin.
00:31:50
Speaker
That trial, everyone's a winner, but you've got to be prepared to have these infusions potentially for 14 straight days. And there are some slightly higher risks with those medications because they're slightly more potent at affecting the immune system.
00:32:06
Speaker
So, you know, there are pros and cons with trials, just as there are pros and cons with treatments for diabetes as well. But I don't want to detract from the fact that, you know, this is this is incredibly exciting development.
00:32:20
Speaker
And I really honestly think, um you know, the vast majority of people who get involved are going to directly benefit from what we do. And then those who end up on a placebo arm of a trial will obviously be contributing to advancing the cause, but hopefully also getting something out of close contact with the the researchers who are doing the trials, because there's all sorts of other care and and and and other support that we can provide people who are part of these clinical trials as well.
Conclusion and Call to Action
00:32:50
Speaker
But it's, some you know, it's it's it's not as simple as saying screen your child and I will have something that I can give you um to make a difference. um it's It's more complicated than that.
00:33:02
Speaker
But I tell you what, it's ah I really honestly believe it's a hell of a lot better than saying, well, put your head in the sand and see you in the emergency department. Yeah, I agree.
00:33:12
Speaker
um Wow, John, that is a lot of information to digest. Yeah, I'm sorry about that. It's good. you You do explain it quite well. And I think that, you know, it'll be a great episode for people to kind of do their own sort of research a little bit further.
00:33:30
Speaker
So, John, I just wanted to say it's lovely to meet you. I actually have heard a lot about you. I know that Anne from the Type One Foundation talks a lot about you. And we have been saying that we wanted to get you on for a chat today.
00:33:41
Speaker
And it sounds like it's been very timely with what's happening now um with these new sort of clinical trials and I guess the call to action to get people to to take this screen test and build the numbers there so that we can get more and more people screened and then get these clinical trials happening. So thank you so much for your time and all of your knowledge and all of your work that you do for type 1 diabetes. It's really, really appreciated.
00:34:08
Speaker
And Jackie, thank you for taking the time to do this. And a massive thank you to the type 1 community, including Type 1 Foundation, who've been really strong supporters of our work.
00:34:20
Speaker
And I must say, we cannot do this without the Type 1 community. and And we are incredibly grateful to the many hundreds of people who have helped us with various aspects of our research. So thank you.
00:34:34
Speaker
And everyone listening, um we hope that you've enjoyed this episode. Everything will be in the show notes for you to go and make your own choice and to get in touch with Type 1 Screen and get your own screens happening. But we really hope that you've gained a lot of information and a lot of insight into some of the amazing and exciting stuff that is happening.
00:34:56
Speaker
in this sort of prevention and the scientific side of things for for type 1. So thanks again for listening. Until next time. Thank you for tuning in to the Type 1 Club podcast. We hope you've enjoyed today's episode and gained some valuable insights.
00:35:14
Speaker
If you like what you heard be sure to subscribe to our podcast on all the platforms so you never miss an episode. We also appreciate it if you could leave us a rating and review. It really helps us to reach more listeners just like yourselves. For more updates, behind the scene content and to join the conversation further, follow us on Instagram and Facebook, the Type 1 Foundation, or visit our website, type1foundation.com.au.
00:35:41
Speaker
Thanks again for listening and we will see you next time on the Type 1 Club.