Ep. 24 - Diabetes Tech - Access For All - chit chat around challenges & considerations

In this episode we generally just have chat around some of the topics being raised around National Diabetes Week in Australia next month.

Diabetes Australia wants a future where diabetes can do no harm.

People living with diabetes should be able to access the life-saving technology they need to live well.

This year Diabetes Australia is shining a light on the impact of diabetes tech and what needs to be done to improve access.

We chat about the challenges and considerations around diabetes research funding, as well as funding diabetes technology for both children and adults. We discuss both Type 1 and Type 2 diabetes in relation to access to CGM, and just share some of our own thoughts, as well as some of the evidence around these topics. 

Listen in and feel free to contact us via our socials or email below with any comments or feedback. We are always open to other’s experiences and thoughts.

Some links around National Diabetes Week in Australia below:

National Diabetes Week 2024 - Australian Diabetes Society

National Diabetes Week 2024 - Diabetes Australia

This is not individualised advice and you should always work with your diabetes team when making adjustments to your diabetes management.
 
Follow Diabetes in the Raw Podcast on Instagram or Facebook
Jaimee and Hayley (@diabetesintheraw)
Diabetes in the raw podcast | Facebook
Email us: diabetesintheraw@gmail.com

Find more about Jaimee as Credentialled Diabetes Educator at
Real-I-Deal Health - Find your happy, healthy balance
Instagram (@realidealhealth_diabetescare) & (@t1drealidealhealth)
Email: admin@real-i-dealhealth.com

Don't forget to rate us on your favourite podcast app so we can help more people living diabetes feel less alone!
 
https://linktr.ee/diabetesintherawpodcast

Link to join Jaimee's health support group on Facebook
https://www.facebook.com/groups/1906513996155038/

Transcript

0:10

Welcome to Diabetes in the Raw podcast. I'm Jamie. I'm Hayley. And together we are Diabetes in the Raw. We both live with diabetes, but in different ways. Jamie has type 1 diabetes and has lived with it for over 25 years and is also a credentialed diabetes educator. Hayley has two boys who both have type 1 diabetes. Nothing in this podcast is intended as individual medical advice. Always talk to your healthcare team before making changes to your diabetes management.

audioDiabetesEducator21699323912 0:36

Hello everyone. Welcome back to another episode of Diabetes In The Raw. And I do have Hayley with me today. Thanks for joining Hayley.

audiohayleymason11699323912 0:44

Hi Jamie, it's good to be back.

audioDiabetesEducator21699323912 0:46

Look, it's been a while for both of us. Um, I haven't recorded for at least two months and in my defense, it's mainly just due to life. And Hayley's been

audiohayleymason11699323912 0:56

in the

audioDiabetesEducator21699323912 0:57

busy as well. Haven't you Hayley?

audiohayleymason11699323912 0:59

Yeah, it's been, it's been a bit going on here, just recovering from surgery too. So if I sound a bit brain dead, please forgive me.

audioDiabetesEducator21699323912 1:06

I'm hoping she dropped some funny. So this episode is not too dry. We're really just jumping on to let everyone know that we haven't forgotten and we haven't stopped doing the podcast. I've just been studying my master's of nurse practitioner specializing in diabetes is the goal here. So, we wanted to do an episode today because we got talking about national diabetes week next week in Australia from Dr. July 14 to 21 and we're recording on the 29th of June. So it's only a couple of weeks away. And I was talking to Haley about the pharmacology subject that I've been doing and just how interesting it is about the challenges around funding for different medical interventions and. how it all sort of comes about. So we thought we'd jump on and talk a little bit about some of those challenges and I guess just put it out there for people to add some comments if they are willing and Hayley met with someone in a high position not so long ago around funding as well. Do you want to shed a bit of light on that?

audiohayleymason11699323912 2:06

Yeah, Jamie. So it, it wasn't a personal thing per se, but so my husband and I are part of a JDRF advocacy program. Um, which is. Designed to help gain support, financial support for their clinical research network, and obviously just get the message out there about type one and how a cure would be fabulous and how we, how we get to that end goal. So it's something we've done for a few years and, every few years it comes around, they, uh, run a big advocacy, push for funding for their clinical research network, which obviously as the name implies, it's all the clinical trials and all the research to. Develop technology for day to day management and the ultimate, hopefully one day, find a cure. So the aim is you get in touch with your local member, federal member of parliament, and you just impress upon them how important that is and what they're seeking. It sounds insane, but the ask was actually for 50 million over a period of four years to help fund that clinical research network. So you, have your meeting, you have a photo, you put some social. So the member gets a bit of, publicity out of it too. And you're just really asking them for their support that when, um, you know, it gets voted on how money is to be allocated, because obviously that's a big key, there's one pot of money and it's got to be divided between everyone that they will give support for it going to JDRF. Now, as part of that program, a couple of months ago, one of the, advocates And in the electorate for the leader of the opposition, Peter Dutton offered to host a morning tea. So there was probably about 20 of us went along, to this lady's house who has a daughter with type one and met with him. And I've got to say it was, you know, a really good and hopefully productive morning. Not here to push any particular, um, group or, political party or member, but he actually came across as, willing to listen, empathetic, had quite a good understanding cause he's dealt with some advocates over the years. Um, within his electorate and, and has listened and took the time to listen. and hopefully we can rely on his support when, when it gets voted on, cause the, the aim is that you get the bipartisan, say whoever's in power. And then the opposition, because then if we have our change of, um, change of party, in power, we know that we're gonna, get that support. So look, a great thing for us and the kids to be a part of, I think, um, many reasons you all like to do your little bit to try and secure some money to help the day to day life and the future, and good for the kids to be around others who are living with it, younger than them, older than them, different walks of life, really, a really good experience.

audioDiabetesEducator21699323912 4:55

I should probably add for anyone new to the podcast that Hayley does have two boys with type one diabetes and were diagnosed at a very young age. So you're the perfect family to be advocating for this and going in with your, your shirts on social media and that, cause you, cause it's a lived experience, isn't it? So,

audiohayleymason11699323912 5:13

100 percent is and then the follow on from this, there was some funding given in the budget. I think possibly 6 million, but don't quote me on that. So there is still the push for further funding. So we've still got more. Badgering of MPs to do to try and secure that funding and then in November, they will also run something that they call kids in the house where you can apply to be part of that with JDRF and you get to go to parliament and it's a bit of a descending on mass as a big group and you all have your JDRF shirts on. And again, that, the visual it, we're there and you speak to as many members of parliament as you can to gain, to gain their support. So, yeah, great experiences. But we're the bottom line and aim that we all really believe in and are committed to.

audioDiabetesEducator21699323912 6:03

yeah. And I guess we got talking about it cause you mentioned just, before about how the, you know, there's, there's a certain amount of money and it's got to be, Allocated to different areas of health care. And so in my pharmacology, we were given these hypothetical situations where we had five very different groups of people and and we had, you know, let's say, for example, 30, 000 and we literally had to try and You know, justify who we would give it to and why. So you might have a mother of two young children who's got a brain tumor and she needs access to this medication that's not funded. Then you got five children with epilepsy who are suffering at school because, you know, they're not getting the medication they need to, manage their epilepsy and therefore their grades are suffering. But having worked. In chronic disease with kids, especially type one, I know that grades goes well beyond, school and, you know, it impacts on so many other factors and I would even argue there is evidence to suggest that would move on into young adulthood and, you know, mental health, emotional health, so many more things. So it was interesting to read through the groups responses. We had three businessmen, um, who needed access to money to. Prevent the risk of a heart attack in the next month. But they had enough money to fund it themselves and they were smokers. So it was just interesting. Like I literally lost sleep that night, even though this was a hypothetical, just trying to think about what would you do? Like, who am I to judge? for smoking. We have a lot of people that have access to health care who make lifestyle choices that the general population don't agree with.

audiohayleymason11699323912 7:46

exactly right.

audioDiabetesEducator21699323912 7:48

so, and, and I guess the idea was to think in different ways. And so I did put that down. I didn't get a whole lot of, response cause I was sort of waiting for people to, to sort of say, well, You know, but most people like, they're not willing to give up smoking, they're not having the funding. And, and I absolutely got it in relation to, you've got children, you've got a mother, um, but I would hate to be in a position where you've got to choose where this funding goes. So that's where I sort of became more interested

audiohayleymason11699323912 8:17

yes. And look, I think, you know, just even the average person on the street can identify on a much smaller scale with that. Let's say you've got four children. You've got one income in the house. They all want an expensive present for their birthday. Can you afford it for all of them?

audioDiabetesEducator21699323912 8:33

Yeah.

audiohayleymason11699323912 8:33

Yes, great. They all get it. No, what are you going to do? Is one going to get it and three don't? So, you know, everybody's got that in their life, but you think on that grand scheme of there is one fund of money and there are so many, call it illnesses, diseases, conditions, that would benefit from more research because the only way we are going to improve management and Or find a cure is by research. It's not just going to drop out of the sky one day and go, Oh, here you go. This is cute. So it takes a lot of work. And, as we spoke about earlier, it's that costs to do that, but you've got to look at all the ancillary costs and you might think, Oh, well, you've got several million, but you need a premise to operate from. And you'd have your simple overheads. You need staff to work in it. They're your overheads. So all of that eats away at the money that can be actually used.

audioDiabetesEducator21699323912 9:33

For the actual, yeah, intervention.

audiohayleymason11699323912 9:35

how, how, how do you decide, like we said, there's so many different conditions out there nowadays. And I think we're living in a world where we don't accept very easily. I don't know as the answer to something, am I going to, you know, what causes, am I going to get better? Well, we don't actually know. We're always looking for the answer and particularly I think in the medical field now, if we have that. Well, we can't explain what happened. We don't readily accept that because we're so used to getting everything instantly and questions answered now. So to make that call, I mean, who'd be, who'd want to be at the top of the tree

audioDiabetesEducator21699323912 10:13

No. Exactly. And you know, I did learn more about how some of those decisions are made. It's not just all subjective. You know, there's this, it's called QALY. So it stands for Quality Adjusted Life Year. And basically, it's a generic measure of disease burden, including both the quality and quantity of life. And it's a economic evaluation of a medical intervention. So, um, Basically, you can use that, but then I was just thinking that because I'm living diabetes myself, because I'm around it, it's my, it's kind of my lifelong journey in relation to work and lived experience. Um, I guess I'm very biased and it did just open up my mind and think, well, you know, I've got people in my life who have got other, Health conditions. And some would argue that the effect is bigger than type 1 diabetes So it's like, yeah, I would not be wanting to make these decisions in relation to National Diabetes Week in July. It's really about shining the light on the impact of diabetes tech and what needs to be done to improve access. So that's where we just, you know, I've started looking at some posts in the lead up on LinkedIn and social media. And there's a lot about, access to CGM for people living with type 2 diabetes on insulin. And that will be very interesting. In the U. S., the Department of Veterans Affairs, well, it's called Veterans Health over there, I think, not fully up with all the terms, but they gave access to people with type 2 diabetes on insulin and type 1, um, to CGM back in 2015, and they've just pulled out some data, and interestingly, the mortality rate For people living with type one diabetes was reduced as we all know in Australia. That's no secret. That was something like 47%. I'm just looking for that data and type two diabetes, you know, the mortality rate only reduced by 14%. So that in itself is, is going to make it harder to get it across the line for people with type two diabetes and insulin, because they're. The big effect, you know, the benefit, isn't as prominent as it is for those living with Type 1. And that's how we got Type 1s across the line, here in Australia, because we proved it reduced mortality in relation to severe hypos, quality of life, um, and then now we've got the hybrid closed loop systems, where the pumps and sensors talk to each other, and the access to that. So,

audiohayleymason11699323912 12:46

And, you know, all of these things, it's, you've got to have the ongoing commitment and, you know, just from a personal point of view, I think we had, whether it was a sensor didn't go the full length of its life, or can't remember what happened, but we were envisaging going overnight without a sense and we're weighing it up and we were like, not really sure we want to do that. And yet for the first, you know, few years of diagnosis, we only finger prick, we never had CGM. So once you get used to it, you rely on it and you see that it does make easy, you know, little things like when we've had some prolonged lows, it's like, well, I know the pump will knock some insulin off if you're going to bowl us for your meal now. But Just watch, let's just watch your graph and let's catch that rise. And then all, all that stuff. I mean, to do that on finger pricking one, their little fingers would be

audioDiabetesEducator21699323912 13:46

Mm.

audiohayleymason11699323912 13:47

so scarred. So it's not only getting it across, it's having that continued,

audioDiabetesEducator21699323912 13:54

It is.

audiohayleymason11699323912 13:54

support. again, with all those other competing, I mean, I think that cost benefit analysis, Would be very interesting to read and it's really on two levels of maybe a more minor level for the consumer for the person with type one or type two, if it's allocated to them, but there is going to be an expense. We get that. So, but little things that I think, you know, hit the hit hit pocket. I can't remember the last time I ordered test strips.

audioDiabetesEducator21699323912 14:23

Yeah.

audiohayleymason11699323912 14:24

Because we don't need to, I know they're our smallest thing, but if you're not using the test strips, it means you're not using as many lancets, which as we know, they're not a subsidized thing. So just that little small impact there in a positive way for the consumer, I know that is potentially the outlay, if you're not fully funded for CGM and obviously pump, but take those out of it. And then the cost benefit in. The cost of the health system by the lower mortality rates, and then the less

audioDiabetesEducator21699323912 14:54

hospitalizations.

audiohayleymason11699323912 14:55

Exactly. So, you know, having just been in hospital for surgery and looking at what some of those charges were fortunate. I have private health, but you look at it and go, Oh my God, that much for that. Like how so thousands of dollars, you know, What one of the forms when I was being admitted, it was, you know, sign this financial consent form. If your doctor thinks you're ready to go home, but you declined to do so, then you will be responsible for the cost of the stay in hospital. A thousand dollars a night cost.

audioDiabetesEducator21699323912 15:29

Then you look at ICU even more.

audiohayleymason11699323912 15:32

That's right. So, you know, that to me, that is a huge, the person using the technology gets that benefit. Again, you've got to be willing to put in the work because you've got to study your graphs. You've got to have a look and pay attention to what's happening, but there's that benefit there to be gained. And then on the other hand, you've got that cost to the medical, you know, the medical industry, the government who was.

audioDiabetesEducator21699323912 15:58

it does have to be weighed up. It does, because at the end of the day, it's not an endless pit of money, and I'm sure, you know, we'd love to give everyone all the money and medical intervention that they need, but you just can't. We're already in a deficit. So,

audiohayleymason11699323912 16:13

that's right. And with with type one being on the increase,

audioDiabetesEducator21699323912 16:16

yeah, and type 2 is definitely on the increase worldwide. And just coming back to what you were saying about, you know, pumps, um, being funded and things, there's a lot around when people turn 21 in Australia. Small gap payment for CGMs, and then potentially you might come off your parents private health insurance. Um, which means, you know, quite a big expense to be able to maintain the hybrid closed loop system that the kids have probably not known anything else. So,

audiohayleymason11699323912 16:49

Yes.

audioDiabetesEducator21699323912 16:50

um, when, when I think broader, I think, oh, it is a small price to pay compared to, you know, What, you know, what we had and where we've come from. But I also understand that the kids these days, a lot of them would have been on pumps for most of their, their life with type one. And then to put them in a position where potentially they cannot continue on it because of finances is something does need to be put in place, I guess.

audiohayleymason11699323912 17:21

Yeah. I mean, I, I don't know how many people will continue using a pump that's out of warranty.

audioDiabetesEducator21699323912 17:27

Oh, it happens right now. Yeah. And that's scary because, not everyone knows how to go back onto injections if that pump breaks down overnight. I think

audiohayleymason11699323912 17:40

that's right. I mean,

audioDiabetesEducator21699323912 17:41

of live in, in hope that it's going to continue to work. And

audiohayleymason11699323912 17:45

But the other thing, you know, for, for an example with us, and this might be something that we talk about another day for our eldest one, he. Was getting a lot of insulin flow blocked alarms on his pump. And anyway, we did all the troubleshooting and I think it had happened five site changes in a row where we could end up doing three site changes during the night. Because we keep getting this, alarm pump company just replaced it. There was a brand new pump here within three days.

audioDiabetesEducator21699323912 18:11

Yeah. Cause it's

audiohayleymason11699323912 18:12

So, you know, not having that warranty. Again, that's a huge.

audioDiabetesEducator21699323912 18:18

Yeah.

audiohayleymason11699323912 18:19

A huge thing. So, you know, the risks and I'm not, I'm not saying people shouldn't use a pump out of warranty. You know, again, I'm talking from the point of view that we are fortunate that we, or we prioritize so that we have private health that will cover it. But, you know, that's a lot to weigh up for people and with costs of living now, weighing that up. Can you still afford your private health so that you have a pump? Like, you know, I read a lot that people would just take a policy out for the child with type.

audioDiabetesEducator21699323912 18:48

Oh, very common. Very, very common. And you know, that's, that's families prioritizing as well. You know, I know there is some support from the government sometimes around, um Care is payments and things that people put into that. But, you know, there's also, there's also lots of other expenses that goes with, with diabetes, including time off work and things like that. When. You know, you've been on camps, you've had to go on camp. So I think it'd be interesting to see what comes out, in a couple of weeks with that National Diabetes Week in Australia. And I would love to get this, um, a lady in my course at the moment who has done some research on the type two space in regards to CGM funding, and probably looked at some of the data and that, and. As we were just talking about, there's a lot of factors that come into play, uh, so it'll be interesting to see what happens because it was a stage process in Australia where it was initially kids and then pregnant women, and then DVA, Department of Veterans Affairs. They don't even have to be on insulin, with that process. You either have a gold card or a approved medical condition on a white card. So, It's been expanded, but Type 2 on insulin will be a big, big number of people and a big expense. So it'll be interesting to see what happens.

audiohayleymason11699323912 20:08

It will. It will. one other thing that we've spoken about before was, yes, there is that one pot of money, but it's also, you know, people get impatient and say, what about such and such? We heard, you know, a year ago or something that, a researcher was close to finding the answer to this. I think it's something that I certainly wasn't aware of until a few years ago when we went to a talk. The amount of time it takes to get from conceptualization. So the idea of what you might look at to actually coming to market it's, I mean, it's several years

audioDiabetesEducator21699323912 20:43

The approval process, you know, for good reason, to get through the safety and efficacy and that with the Therapeutic Goods Association in Australia or the FDA in America, wherever it might be. It's huge. As you said, it can be 7, 10 years. It can be huge.

audiohayleymason11699323912 21:00

and every step of that process. You've got that always overhanging the continued funding. So you may have been given a grant or you may have a, donation from a, from a philanthropic. Is that how you say it?

audioDiabetesEducator21699323912 21:15

can't say it, don't ask me to.

audiohayleymason11699323912 21:16

Um, we might just edit that bit out. Hey, people, you know, you may get a big sum of money, but that's probably only going to last a period of time. So always, always time is having to be devoted. To gaining the funds so that just adds to the length of time it takes and I just think that's a really important thing for people to understand when you get frustrated, why isn't it moving quicker? Like you say, we, we have a rigorous process to ensure that what goes out to market is profitable. safe, um, and allows people to make an informed decision of whether they want to use that product that's being offered. but this, this funding part of it is huge and it can't be ignored and nobody can magic money up,

audioDiabetesEducator21699323912 22:01

And yeah, in just wrapping up, it was only, I think it was last year for National Diabetes Week that there was a lot around diabetes research funding and how the research is declining. In comparison to other areas, and a big part of that was that there's no, um, money ongoing for people to commit five years to their research project, which is needed or more because they've got bills and mortgages and families. And so it's not just the, well, that's how the funding can have that flow on effect of people aren't sort of staying in this area to do the research, either the doctors and the. All the smart people that we need.

audiohayleymason11699323912 22:42

They can't afford to.

audioDiabetesEducator21699323912 22:43

No, no. So let's, jump on in July and just see what's come out and, talk a bit more about it. But if you've got any comments or thoughts or if you want to come on and share anything yourself, please get in touch via our socials. We've got email, Facebook, Instagram. We're not super active on there but you will find us and you can, PM us or pop up a post, whatever you're comfortable with. We've got our old Gmail account there too. Hayley loves.

audiohayleymason11699323912 23:11

Love me a Gmail account.

audioDiabetesEducator21699323912 23:13

Hayley, it was so nice to have you back on and have a bit of a laugh. I know it's a serious topic, but we do try and keep things, lighthearted at the same time. So I always love having Hayley on.

audiohayleymason11699323912 23:23

good to be back. It's good to be, good to be here and thinking about the ways forward and what we can do to help others.

audioDiabetesEducator21699323912 23:32

And your boys are incredible with what they do, and my little man had his blood test in the ENDIA study last week as well, and he always thinks of your two, because I say, well, we're helping, we're helping people,

audiohayleymason11699323912 23:44

He was such a little superstar to do that once they get to an age, I think, where they can realize and understand and know what's coming. So there's the, you know, the anticipation of what's coming and nine times out of 10, we know, as adults, it's not as bad as what you think it's going to be. But that's it's still a huge step. So for people like your little boy going out and doing that, you know, eternally grateful.

audioDiabetesEducator21699323912 24:07

tell you what the hardest part is, is getting the stool sample. He will not poo 48 hours in the lead up to the study, because then I can get it. That's

audiohayleymason11699323912 24:16

Isn't that interesting?

audioDiabetesEducator21699323912 24:18

it's been the same, like, for, since he's, since he's had to do it, which is, since he's been in the womb, but, um, since he's old enough to know that

audiohayleymason11699323912 24:27

We need to come up with a cunning plan of how we can trick him and he won't realize he's

audioDiabetesEducator21699323912 24:34

Well, they kindly told me I can freeze it up to a week before, which is beautiful. We'll have to get a separate freezer for that. We've probably gone off topic here and maybe edit this out.

audiohayleymason11699323912 24:45

No, leave it in. Let's end on a thought provoking note. So send us your comments, send us your ideas of how we can help get that stool sample.

audioDiabetesEducator21699323912 24:57

I love it. We are going to end on that note. I am going to leave it in because I feel like our personalities don't always show. So this is the true us.

audiohayleymason11699323912 25:06

Don't be put off people.

audioDiabetesEducator21699323912 25:08

Thank you for joining us, everyone. We look forward to doing our next episode, yeah, after National Diabetes Week in Australia. Thanks Hayley.

audiohayleymason11699323912 25:16

Thanks Jamie.

25:18

We hope you enjoyed the episode. Thanks for listening. Please rate us on your favorite podcast app to help us reach more people and make them feel less alone. Remember, some days thriving, others just surviving. If you'd like to make contact with Jamie as a diabetes educator, look up the website, www.real-i-dealhealth.com. I can also be found on Instagram and Facebook under Jamie Panora Real Ideal Health.