Ep. 15 - Is Diabetes Research on its Death Bed? - Why the struggles & where to now?

Hayley & Jaimee chat about the struggles diabetes research is having in regards to funding & how stigma may be influencing the $ coming in for more research. All forms of diabetes are increasing in Australia (& probably worldwide), yet the funding for research is going down. Why? What can be done? What should the research be focusing on? A cure? Improvements in quality of life? Improved treatment options?

We started this chat after a debate during National Diabetes Week in Australia from July 9, 2023. The Great Debate Series can be found at the link below:

Brain drain: Is diabetes research in Australia in crisis?  https://www.diabetesaustralia.com.au/national-diabetes-week/great-debate-series/

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Transcript

Jaimee 0:12

Hello, everybody. Welcome back to another episode of Diabetes in the Raw. It's Hayley and myself tonight. No guests. Hi, Hayley. How are you

Hayley 0:20

hi, Jamie. I'm well, thank you.

Jaimee 0:22

Nah, it's 8, 8, it's now 8. 30. We've been chatting behind the scenes for half an hour now. We're both pretty passionate. So last week, which was what, July? 13, I think it was that, um, oh, sorry. Monday, July 10 was National Diabetes Week in Australia. And each night there was a great debate, basically trying to generate Australia's biggest conversation around the impact of diabetes. So. Tonight we wanted to just, I guess chat a bit about what went on in one of those debates, which was called Brain Drain. Is diabetes research in Australia in crisis? So there was a panel of, what would you say, Hayley? All different professionals.

Hayley 1:05

All different professionals, probably about six of them.

Jaimee 1:08

Yeah.

Hayley 1:09

it was a very interesting debate to listen to and surprise, surprise. The bottom line was yes. Diabetes research in Australia is in crisis. In fact, I think one of them said it's not actually in crisis. It's on its deathbed.

Jaimee 1:25

Yeah. That's,

Hayley 1:26

That's pretty harsh,

Jaimee 1:28

Hmm.

Hayley 1:28

very confronting. It's, it's not a comforting thing to hear, but actually listening to the, to the debate, if anybody wants to listen to it, I think they are available on the Diabetes Australia website.

Jaimee 1:40

in the show notes. Yeah.

Hayley 1:41

Really worth listening to. It's, it's really thought provoking, really shines a light on what exactly is involved in research and perhaps what is happening out there that the average person on the street just doesn't know and wouldn't.

Jaimee 1:55

Yeah. And, it's quite the opposite to what I thought because I sort of look at the amount of funding JDRF, um, you know, is able to fundraise and that over, over each year. And it seems like so much money, but then you think about what research costs and, and all that sort of thing.\There's a type one advocate on there who has been living with type one diabetes, I think for over 40 years from memory, Renza Skabilia. She's quite well known and she was really the flip side to the professionals, the doctors, professors and all that was saying, wasn't she?

Hayley 2:31

I think so. I mean, like I say, extremely passionate, but it comes back to she's living with it. And I think on the Diabetes Australia website, they, they had almost that sort of catchphrase or that line. Nobody understands it better than someone living it, or, or something to that effect. She really was a big example of that, and get to understand what, how the research works and what happens. But bottom line is, are we progressing

Jaimee 2:59

And, and she was, um, she's a straight talker. She's, she does a lot in this space. so it is worth going back and having a listen. And she, and I like that she said she's only one person living with type 1 and she didn't want to speak for the rest of us. So Hayley and I thought we would come on tonight and just do a pretty quick one, sort of probably only around 20 minutes. 25 minutes, maybe, and just talk a bit about our thoughts on what the conversation was. And one of the big things that came up was diabetes research, is getting a lot less funding than other areas, such as cancer research, cardiology, um, Immunology, mental health, immunology, and part of that reason is because of job security, believe it or not. So, cardiology, these new researchers, these doctors can go and get a three year contract. Within, you know, insured employment and in diabetes, you'd be lucky to get one year because the funding is not secured and grants, uh, often written in your own time and, and take a very long time and so much work

Hayley 4:09

I think I'm correct in what I heard one of the, I forget his name. I want to say Sophie or something like that. Anyway, he was talking again, very engaging, very interesting to listen to, said that a third of their time is spent writing. Grants, a third of their research time, it spent writing grants. Now, I can remember, uh, quite a few years ago now, could be four, could be five years ago going to Brisbane and attending a talk, I think probably hosted by JDRF. And there was researchers there explaining. The process for research and that timeline of conception of an idea to it going to market and the bulk of that time is taken up with securing funding. and he went on to say, so not only is a third of your time that you could be spent researching taken up by writing grants to try and secure the money, you don't secure the grant. You have no job.

Jaimee 5:09

yeah, and that times right in the grant was just a complete.

Hayley 5:12

waste of time.

Jaimee 5:13

Yeah,

Hayley 5:14

And so why would people go into that work when there is no security for them. You can't get the granted grant funding. It's not just you can't do the research. You can't live. You can't pay your mortgage. You can't pay your bills. It's not enticing.

Jaimee 5:27

yeah, and I like that the doctor did, you know, they are human, they have mortgages, they have families, it is a job, they are passionate about it and want to help, but they still need to pay their mortgage and, you know, look after their families as well, so massive part. And, you know, another part is a bit off topic here, but they were saying how type 1 diabetes has gone up 35% in the last 10 years. So The need for diabetes research is more than ever.

Hayley 5:56

And yet the funding for it is dropping.

Jaimee 5:58

Yes. Yes.

Hayley 6:00

And look, we know, we don't seek to say that any one area deserves more than others. We know that is a very sensitive topic and we're not, trying to, you know, rank conditions, diseases, illnesses. If you're looking at the incidence of the increase in diabetes, in type 1 diabetes, it does beg the question, why is more funding not being put into it when we have got this? this just rise of numbers.

Jaimee 6:28

Yeah. And that's a very good point because I, I cringed a bit when they started comparing, you know, I said, they said that diabetes gets 25% of the funding that cancer research gets. And, it's just, as you said, it's not a comparison, it's not a hierarchy of importance. It's, it's just a comparison of where funding's going. And yes, yeah, it's, it's hugely needed in all areas of health. And I was going to say, before I move on to the next area, did you have anything to add before we, we talk

Hayley 7:00

No, no. I think the only,

Jaimee 7:02

versus the cure?

Hayley 7:03

the only, uh, the only other, point that I think they did make clearly as well is not just that the money is reducing, but the actual numbers of researchers is shrinking. And that's probably as a result of the fact, the lack of security, the lack of, um, financial security for them, which, you know, we all live in the real world. You have to have that in your job.

Jaimee 7:24

Yeah, you need young, passionate people coming through who want to do the research and can afford to, and you know, these people have been through medical school. They need, they deserve a good wage to do the research and the potential outcomes of their research is life changing as well. So, you know.

Hayley 7:44

100%.

Jaimee 7:46

So another very interesting, probably the most interesting part of the whole debate conversation for me was around where the funding is going and. They talked about how much goes towards mental health versus behavioral management, I guess it is around diabetes, because you must remember, they didn't distinguish between type one and type two

Hayley 8:12

No.

Jaimee 8:12

of the conversation, but then it became a little bit heated when one of the doctors would say that type two Raised obesity and stigma as a factor influencing the research funding, didn't they?

Hayley 8:27

Listening to that, it made total sense to me, but it's not something that I would have thought of myself. I wouldn't have taken myself to that conclusion. But listening to them say that there is still such stigma around diabetes, and because the general public don't distinguish between type 1, type 2, And of course, all the other ones that are out there, there is still very much the stigma that you have brought it on yourself. It is as a result of something you have done or not done in your life, your lifestyle that has caused you to have diabetes. So on one level, a fairly basic level, you'd say, well, why would you put money towards that? You know, why would we try and fund that when it's all down to you and you could have stopped it? And very interesting. They're saying that the philanthropist out there who would like to, you know, give money. to worthy causes, charitable causes, because of the stigma, maybe don't.

Jaimee 9:22

Mm.

Hayley 9:23

And yeah, they, as you said, they did, um, tackle the, the elephant in the room of obesity and the impact of that. One thing I was quite disappointed to hear, Jamie, was when they were talking about obesity and the impact, on diabetes, and then the question of the funding, how it gets allocated, I take no issue with them talking about should there be a sugar tax or a tax on certain foods, but hearing one of the panelists saying, and there needs to be a took one of the other panelists to actually step in and say, do you just, I just want to clarify, you mean just type 2 and not type 1? Now, I just found that quite amazing that a panel of specialists, there's still really that underlying stigma that diabetes, you've caused it yourself.

Jaimee 10:18

Yeah. And it's just that not distinguishing between the type one and the type two. Yeah.

Hayley 10:22

not distinguishing, but I think also as you and I both know two isn't just brought on because of something you've done in your, in your life or, or haven't done, you failed to reach the ultimate goals, you know, of, of maintaining a healthy life. yeah, really disappointing, that you hear that in a debate, especially when they've just been talking about stigma. And why the stigma can prevent money going into research It was also well covered in there, or they debated well, where should the money go? Should it go to a cure? Should it go for improving management day to day living with the condition? And it was acknowledged that there's seen huge advancements in technology for managing day to day. And I know a lot of people will say, Oh, well, you know, that's good enough, isn't it? Yes, the technology is great. But you're still living with, I've got to say, a shitty condition.

Jaimee 11:26

Oh, look, you and I both know we've got the latest and greatest technology. You've got it for both your boys. I've got a different system, but closed loop, CGM pump, um, you still have hypos. You still have to count those carbs precisely. You're still not living. You know, without diabetes, you're still, you're still doing a lot, the decision making everything that goes with it. Sleepless nights for you, sleepless nights for me. yeah, it's, there's a lot, a lot more to do if we want to improve quality of life further. I am not taken away from the fact that we, we can sleep much better than we used to. We don't have as many finger pricks. Sometimes that, practical side of things isn't the problem. It's

Hayley 12:10

no.

Jaimee 12:11

it's that burden, that constant burden, isn't it?

Hayley 12:14

It's the unseen. The really, the unquantifiable. The unmeasurable. It is there. It, it's really, I mean, I think it's really, oh, you, you, you could liken it to medications that you take orally if you don't have to take a giant horse, or you can just take a little, uh, coated tablet that slips down easily with water, makes it easier, but you've still gotta take it. You've still got a condition that you are taking it for, and that is not, unless, of course, there is a cure. So I'd find it if I had to make a decision, where does funding go? That is, that is such a hard, hard call. And I don't know that I could say definitively one way or the other. Um, because I wouldn't want to be without technology we have, but living without the disease itself. Even better.

Jaimee 13:07

Yeah, it's like, it's

Hayley 13:08

a

Jaimee 13:09

so do we just do we sit with the tech we've got for the next 10 years and let all the funding go to a cure? I also don't have a black and white answer for that, um, which is why we, I think we're sort of wrapping up now, aren't we? Because this, this is what we just wanted to leave people with. We, I don't know, do you put 50% into a cure? But one of the, um, so, so Renza, who lives with Type 1, the advocate that was up there on the panel who was, okay. A very strong voice for, for people with type one was saying, I'm not a rat, stop researching rats, you know, it's like, does that research go anywhere for the amount of, and, and you have to start somewhere. Um, but if it's in rats, it's years off humans and will it ever get to humans, some of that research? You've got to wonder,

Hayley 13:53

Yeah. It's, it's, it's a really hardcore. It's, it's an own individual judgment as to what, you know, what you think money should be spent on. Jamie, we'd spoke before this. We both heard there will be a cure in five or 10 years, whatever number was picked at the time of diagnosis. Yes.

Jaimee 14:10

Yeah. So over 26 years ago now, I was told at diagnosis, there will be a cure within 10 years. There was someone else on that panel who was told the same

Hayley 14:20

Yes.

Jaimee 14:21

You were told the same thing.

Hayley 14:22

Yeah, well, we might've had five years on ours, but anyway, we're,

Jaimee 14:26

Which makes sense if I was told 10, 26 years ago, now they're saying five. And now I hope they're right for you, but how many years are you in now?

Hayley 14:34

a half in now, so yeah,

Jaimee 14:39

Oh, we're laughing, we're laughing because you have to laugh, but, um, it's not a laughing matter at all. It's

Hayley 14:44

It's not, is it, and like you say, I, you know, I'm, I'm really starting to get, I think as passionate as you are about this. Yeah, reaching, just reaching people, please go and have a listen to the Diabetes

Jaimee 14:58

and let

Hayley 14:58

Australia debate. Let us know what you think. Just start the discussion, raise the awareness.

Jaimee 15:04

I've got to go back and have another listen because if, um I was driving home with two young kids in the car and they'd got home and did dinner in the middle of it all, but it is all recorded. You can go back and listen. There's lots of others. There was one every night. I'm yet to go back and listen to, um, To a few more, one of them was about tech, which I haven't listened to. I did listen to the type two diabetes remission one. If you've got type two or type two in your life world, very interesting. And I think we will jump on and chat about that

Hayley 15:33

Yes, I do want to listen to that one. I did find the obesity one. Really interesting too. Really

Jaimee 15:40

was called Is There a Magic Pill? So I'm very keen to listen to that as well,

Hayley 15:44

Yeah. It, it, it really was worth the listen. I would highly recommend that one too.

Jaimee 15:50

yeah. And we have no affiliation with Diabetes Australia either, we're just, we're interested in everything that comes out and National Diabetes Week, you know, I guess is huge for us and we're just excited that there's conversation around it and that you can join from anywhere. And listen in, I did ask a couple of questions on that panel, but, they ran out of time. So not sure if they continued that later on or not, but yeah, let us know what your thoughts are. Um, obviously we're a bit biased towards type one diabetes research and, but as I said, no one knows diabetes like those who live with diabetes. So. I think we are definitely worthy of having a voice, and so is everyone else out there that lives this at some capacity. Hayley doesn't live with it herself, but she lives with it because she's got two boys in her house that she looks after every single day and night, so.

Hayley 16:52

Too much at night at the moment. But anyway,

Jaimee 16:55

Which means we better, sign off. Thank you so much for listening, everyone. love to know your thoughts. Please go and have a listen to that one. And if you could rate our podcast, that will help us reach more people. we are, we are getting more listeners, so we are very, very grateful to each and every one of you.

Hayley 17:12

beauty, gr and you know what? Just put it on. You don't even have to listen to it. Just keep hitting play and telling everyone, you know, to hit play. Just to bump us up so that people might find us. And for just make that connection. You often see in, Facebook grouped forums. Oh, I happened to find this. We're newly diagnosed. Um, or I'm a carer for someone with diabetes. Just keep hitting, hitting play, getting people to listen, bump us up and people will find us more easily when they need us.

Jaimee 17:42

Yeah. Thank you so much. And thanks for joining us late on a Tuesday night too, Hayley.

Hayley 17:48

No problem. Bye Jamie.

Jaimee 17:50

you later. Bye.