September 7, 2024 • 35 mins
This week, we're diving into part two of everything we learned, longed for, loved, and loathed from the Australasian Diabetes Congress (ADC).
In this episode, Benjamin shares his many "prick of the week" candidates from ADC, and we have a special interview with Justine Cain, CEO of Diabetes Australia. Justine talks about their campaign to get insulin pumps and other tech publicly funded, and how you can help (see below). Plus, Benjamin brings us new insights about hypos (and the changes we hope it makes to getting your driver's licence form signed!).
And if ADC has been too much learning and not enough laughing, don't worry! We’ll return to our regular show format next week. For now, enjoy the blend of coffee machine anecdotes, personal experiences, and groundbreaking research that made this ADC unforgettable.
As mentioned in our interview with Justine Cain, you can help advocate for better funding for diabetes technology by sharing how it would improve your diabetes management and quality of life here: https://www.diabetesaustralia.com.au/issue/affordable-access-to-aid/
You can also take to social media and use the hashtag #UniteInTheFightForTech and tag @Diabetes_Australia
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Music.
(00:10):
You're listening to Life in Beta. This is a bit of an unusual episode this week.
This is part two of everything we learned, longed for, loved,
and loathed from the Australian Diabetes Congress.
It was recorded at various times and in various locations, so if you notice
the sound change a bit between sections, that's why.
In this episode, Benjamin gives us his list of the many prick of the week candidates
(00:34):
he found at ADC, a special interview with the CEO of Diabetes Australia,
Justine Cain, about their campaign to get insulin pumps and other tech publicly funded.
And Benjamin reports back on some new information about hypos.
So my summary of it is, one, severe hypos are not as common as we think.
Two, we're still scaring the heck out of people about hypos,
(00:56):
and we really need to think about what we tell people.
Three, the tech burden is real. CGM is a game changer, but it is in your face.
If ADC for you has just been too much learning about diabetes and not enough
laughing about lived experience, don't worry because we're back to our regular show format next week.
(01:18):
So what are we looking forward to seeing at ADC this week? Or what have we seen
so far that we are loving?
I'm loving all the coffee machines, but it really is like there's a barista
at every like med tech and drug company stand. Like you can get coffee anywhere.
It's a little bit insane.
It's a little bit sad really to reflect on just how much of a big business diabetes
(01:39):
is, but I'm going to put my soapbox away.
There were lots of exciting things that I, quiet you, lots of things that I'm super excited for.
I went to a talk at ADC that I thought was going to be incredibly boring,
but it was on type one. So I was excited.
Okay. And it was about hypoglycemia and having had type one for 21 years.
(02:00):
Okay, what are we going to say?
Another low, another day. Here's a low. But no, this was a really interesting conversation.
So they were speaking about what have we learned about what hypos actually do
to the body and also how common are they?
And the really interesting thing is that when they actually looked at the data,
a severe hypo, so where you actually need someone else's help,
(02:24):
is really, really rare. Yeah, well-
Most people's experience would be that, right? Yes, yeah. I can kind of count
one hand the number of times that I've needed someone else's help.
But here again is something really exciting for a healthcare professional to understand.
They were speaking about the fact that that's not really the way that we teach it.
(02:45):
So if I think about the education that I got, here's your insulin dose on a piece of paper.
I basically got told, go too low, you'll kill yourself.
Don't go too high, but you know. so you kind of take
away the oh well i can't go anywhere near the
precipice because then i might knock myself
out kill myself so i'll run myself high
(03:05):
and there's all this fear of hypoglycemia and
then you go for your driver's license and they're looking at you and going when
did you last have a hypo and you either answer honestly which is you know every
day my blood glucose might dip below 4.0 yeah or you say never what are you
talking about hypos and you're so scared that you think I can't drive because
I'm going to drive into a tree.
(03:26):
I can't do exercise because I'm going to hypo through the floor.
And when they actually look at people's lived experience,
So that was one piece of the puzzle. Okay. So then they said,
well, if we talk to people with type 1 who are afraid of hypos,
which is a really common thing. Yep, yep. Really common.
At the family centre. We realised that what we've done is we've encouraged people
(03:48):
not to even try to get close to 4.
We get people to sit more like at 8, 9, 10, 11 because we just keep scaring
them from the precipice.
And actually people don't go anywhere near 4 even because they're so afraid of going hypo.
What they found when they looked at people's response is that when you're at four, you're not hypo.
(04:09):
And this is something that no one with type one ever gets told.
You kind of get your guidelines saying sit between four and eight and four's bad.
And so they looked at people as they were getting close to four,
even at 4.5, even at five with a little bit of a downward trend on CGM now that we've got that access.
And people have the same reaction as if they were actually having a hypo.
(04:31):
Adrenaline kicks in in the brain. your anxiety shoots through
the roof and you start rushing for glucose because that's what
we've been taught so how do they distinguish between the reactions
people have to kind of the fear of the hypo versus the
actual hypo they did mris so they were looking inside functional mris looking
inside people's brains and seeing what activated and comparing an actual hypo
(04:51):
to a response to a hypo where there's no physiological symptoms oh i see what
you mean the mri response showed the same just above four as a logical response
so they could mri someone at 4.5.
So there is no impact to your body whatsoever.
You are not hypo. You are just getting close to hypo. But if you think you're
going low, your adrenaline is spiking the same as if you had a hypo,
(05:12):
your anxiety is kicking in, your frontal lobe is going, oh dear God, get some glucose.
And then they looked at what's the quality of life impact. So after your hypo,
we all know what it's like to have a hypo at the middle of the night.
You have to wake up, you rush around, your sleep's disturbed,
you're anxious, your wife smacks you. It may just be me. Yeah.
That impact is exactly the same whether it was a real hypo or not.
(05:34):
So it's not necessarily actually the hypo that's wiping you out per se.
It's the disrupted sleep. It's the anxiety. It's the worry about a hypo.
It's the disruption. It's then they're trying to get back to sleep,
all of that kind of stuff.
So if we teach people, when you get to five, four, start to avoid those things,
we're scaring people and causing
(05:56):
the same problem as if they had a hypo without actually having a hypo.
Interesting. How do we walk that line? Well, we've all been there, right?
It makes sense because, yeah, depending on where your alert is set for your
low marker on your CGM, we've all been there when we're having technical issues,
where the tech is failing us. It's not correct. It's telling us that we're low.
(06:19):
We hear that beep and we're like, no, that's weird. I don't feel low.
And then a few minutes later, you're like, actually, my heart's quite racing. I'm a little bit clammy.
I think I am low. and then you finger prick, you're nowhere near low.
But because you've like stored this little trauma inside your body from all
those hypos in the past or particularly those ones that really get you,
(06:40):
the ones that take like, I think they say it takes 45 minutes to recover,
for the body to recover, even if you don't like feel it from an actual hypo.
I think you store it. It's like a little PTSD. Yeah, it's a real trauma. Absolutely.
And this research actually was looking at exactly that and saying, well, is that the issue?
(07:02):
Is it the trauma? Is it the fear? Is it the left behind stress that's causing these reactions?
And it's almost impossible to tell. But what we can tell is that actually your
ability to know whether you're a hypo or not is nowhere near as good as we think it is.
So they did studies looking at, you know, they have these people that they call
hypo unaware, which are people who don't feel as many symptoms of a hypo,
(07:26):
so they can't detect it as well, which is a real thing.
But then they said, okay, well, what about people who aren't that,
people who are feeling their symptoms really well? How good are they at actually picking one up?
So, if we use a CGM and we follow people and we see when they go down to twos
and threes- But don't show them the alerts.
Don't show them any information, do they react? And no, people's ability is rubbish, frankly.
(07:48):
Interesting. So, you can be low without knowing, even though you think you're okay.
And what it seems to be, and consumer, not healthcare professional here,
but people actually do go low fairly regularly, and people go low without type 1.
Particularly at like nighttime, for example, or after exercise or so forth.
(08:10):
And it's quite common to sit on that 3.9, 3.8, 3.7 skirting along.
That's not a hypo per se. So they're starting to talk about different definitions of hypos.
So that kind of four to three and a half sort of range may not actually be a hypo.
You may still have to respond to it because you've got double down arrows or
whatever that might be. Yeah. It depends at what rate you're there.
(08:35):
So you skim into the threes from background insulin only from your basal insulin
it's nowhere near the same response as if you've you know done too much rapid
and you're feeling that like,
artificial low like because you've given yourself too much
yeah you know insulin yeah and you're like oh yes but it's totally different
yeah and if you're used to sitting up in the eight nine tens then a 4.2 could
(08:59):
feel 100% your calibration could be completely off and so then they looked at
highs And this gets even more interesting.
And we're doing the same thing to people because CGM gives us so much information,
but it is like having your report card in front of your face every five seconds, right?
So people are reacting to the high before you would ever feel a symptom of going high.
(09:21):
And again, wanting to remind people that's normal when you eat a high glucose
meal, whether you had type one or not, your blood sugar is going to skyrocket
and then your body's going to respond.
But we, because we have the report card, look at those arrows going up. And what do you do?
What do you do when you've got arrows going up? Start rage bolusing. Rage bolusing.
And what does rage bolusing do? Or rage profiling if you're an advanced user
(09:44):
like Carly. What happens? What happens?
You overcorrect? You overcorrect, which means? Then you crash down on the other
side. Then you crash down, which means that you respond like it's a hypo before it becomes a hypo.
And you get stuck in this, I'm anxious about the up and the down.
It's the mental load because you're like, I can't believe I did that.
Like, you knew this could happen.
So, this is, you know, obviously hypos do have the potential to be dangerous, right?
(10:08):
So, this is an evolving space and we're not providing any medical advice whatsoever.
But what is really exciting is that they're actually talking about it and saying,
well, Well, what do we teach people to do?
Because if we just get people in anxious mode all the time, then it doesn't
matter whether they're hypo or not.
They're going to have the same problems, the same disruption,
the same mental health burden. They're going to burn out. Eep.
(10:29):
And even do we say to people, don't look at your CGM after you eat for a little
while, just because you're going to react. You don't want to.
But when you see those numbers go out of range and it's beeping at you every
five minutes, what do you do? too. Maybe don't go at that.
And over time, we're probably going to learn lots more about what's normal.
(10:50):
And actually, the other finding they found is that if you do have a closed loop
system, if you're lucky enough to have a hybrid closed loop,
hypos are even less likely,
but you're even more likely to have those funny little skimmy hypos that are
just at the sort of 3.9, 3.8, because the pump is really good at stopping you from the severe load.
And it will We'll just hold you at that space. But we will still react like
(11:12):
it's a hypo because we're taught to. I'm at 3.7. Grab all the glucose.
I literally did that yesterday, actually, whenever it was. I remember my line
was just slowly, slowly trending down.
And then Shana asked me to, like, jump on a Zoom call and talk to diabetes education class.
But I think really what I was feeling was hungry, which is why I reached the hypo treatment.
(11:34):
And I just wanted to eat because, yeah, really, I was just hungry.
But I was like 3.8 and had been for the last 40 minutes or something.
So my summary of it is, one, severe hypos are not as common as we think,
which I was really excited by.
Two, we're still scaring the heck out of people about hypos,
and we really need to think about what we tell people.
Three, the tech burden is real. Those beeps and boops have, it's a game changer, right?
(11:58):
CGM is a game changer, but it is in your face.
And we need to get messaging out to, I think, particularly GPs around what actually
constitutes constitutes a severe hypo that is a danger to yourself and others
as opposed to just, you know, skimming surface or a hypo that you can deal with on your own just fine.
If I could just ban that, how many hypos have you had question?
(12:18):
Maybe we'll get better and start to talk about how many times have you been
below 2.5 or how many times have you needed help?
Those sorts of things. Yeah. There should be better questions in there.
It's very cool. Very cool.
Let's do prick of the week. So can I take you to the opposite side of that excitement? Sure.
Right up onto the old soapbox. Oh, yeah.
(12:40):
When I come to one of these things, I am reminded that there is still a big
disconnect between the clinical world,
what happens and what clinicians and doctors and educators talk about and what
actually happens on the ground and what it's like living with type one.
And I know, again, this is not a shock, but I still, there's been so much work.
(13:01):
Everyone has heard about person-centered care, patient-centered care,
appropriate language, et cetera. And then I come along and I'll just give you
an example that I'm not going to name names to preserve the guilty.
I went to a presentation where they were talking about what's called a patient
reported outcome measure, which is the longest term for maybe a PROM,
(13:24):
patient reported outcome.
What's a PROM? Did you spell outcome with an A? I don't know where I got that.
I'm sorry. I sometimes wonder at the team I've assembled.
So PROM. Yep. So this is the radical notion of saying to a person living with
type 1, is what we just did making your life any better or not?
And they said the biggest barrier to implementing a patient-reported outcome
(13:48):
measure, literally, do you feel any better as a result of what we did,
is that clinicians do not trust their patients' opinions.
You can't really have an opinion on someone's opinion, can you? Well, no, maybe you can.
Apparently you can. Apparently, these clinicians are so worried that someone
(14:08):
will say what you did didn't help and that that is untrue, that they believe
the patient just doesn't know what's good for them.
Yeah, that's healthcare in a nutshell, isn't it?
I have never wanted to scream so much in a presentation.
I get that from their perspective, it just must look so obvious.
(14:29):
It's just like pre-Bolas.
It's not hard. Just do it. Just pre-Bolas. but in
the reality of life it just i just cannot sit
somewhere where in the same breath a clinician
will say only 10 13 of people with type 1 are hitting the biomarkers we're talking
about they're not getting to hbo1c's they're not getting the blood glucose control
we want we know this and then in the same breath say but what we are saying
(14:54):
is right and it's just the person's fault that but they're not doing it.
There is a word I want to say, which I'm not going to say. Okay.
It's bs it's absolute bs and clinicians
need to step off their high horse and get to the reality if people are not hitting
their blood glucose targets it is not because they're not trying i know what
(15:15):
type one is like we know what type one is like it is relentless it is endless
and your fancy little sliding scale insulin thing that you've just given me is not the solution,
how dare you nice segue into
what did you see adam well directly across from
our booth was one of a certain drug company
(15:35):
and on on their billboard in big
letters it's like give this drug to your quote insulin
naive patients i was like okay i get that some people don't have the information
to be able to dose inch like to make do their own insulin dosing you know by
(15:58):
themselves without a clinician's help. But how about you give them the information?
Arrogant bastards. And they put this on a big billboard. Right in front of us.
We've had to stare at it for the last three days.
And what do you think that teaches the doctors who are using that medication?
That we're so silly. They will use the same language.
Oh, there's all these people out there that are naive to insulin.
(16:20):
Rage. Rage. Because diabetes is so easy. Like, why can't we get our act together?
Oh. Like, that's just how it feels. It does also say a lot about...
I mean, we're talking...
Aldo previously about, you know, you've got your, what is it,
six minute appointment or a 10 minute appointment or whatever,
you know, like how are you meant to teach?
Obviously we've got type one and type two stuff happening here,
right? And a lot of type two ends up being managed by a GP.
(16:42):
And how are you meant to explain to them how to, what's the fancy word for dose insulin?
Titrate. Titrate insulin, you know, in a six minute appointment.
Like it's just- You can't, it's broken.
Yes. And they, oh, all right. I'm getting right on my high horse now because it is worse.
So another presentation that I was sitting in, they were talking about the challenges
(17:02):
of delivering diabetes care.
And there is still this world where they cannot imagine a different space than a hospital.
And then they say in the same breath, gee, it's hard to get diabetes education
in because we are so focused on getting people out of the bed.
And then at the last minute we go, oh crap, the checklist says we've got to
diabetes educate someone, send the educator.
And then the educator runs in and gives you five things and then leaves.
(17:25):
And then they're sitting there saying, how can we make this better?
Don't do it in hospital, you idiot.
It is, honestly, they cannot reconcile their job in hospital is to focus on biomarkers. I get that.
If I go to hospital, keep me alive.
I'm only walking in those doors if there's some risk of me not staying alive.
Get me out of there and get me to somewhere where you have time to actually
(17:46):
talk to me. Because if the way you approach it is, I have all the information, you have none.
We have heard the language, which is, you're not going to do it anyway because
you're insulin or naive or whatever crap they're coming out with,
what are you setting people up for?
Even the way it will be delivered then is, I'm assuming you're not going to
do it anyway, but you know, well, I'll just dumb it down for you.
And how about I just give you this little piece of information?
(18:07):
And then when you come back next time, because what I really want you to do
is circle around DKA, come back into the hospital so I can educate you again.
Okay. Now I'm really on my horse.
But we've got to get out of this sense of you are sick and broken and we are
looking for the fix to people want to do this themselves.
(18:28):
They want the support. They want the education. They want the tools.
How about we just give it- At some point, we should wrap around.
Well, I'll just give Benjamin 30 seconds to just take a deep breath.
We should come back maybe and just have a talk about some of the fantasy scenarios
that we've come up on, things like strategy team days and stuff,
where we talk about if type 1 diagnosis went exactly as we would like it to,
(18:49):
what would that look like?
If budget wasn't a thing, what should that actually look like?
Because I think you'll listen to it and go, that makes sense.
That makes sense. And obviously there's practical reasons why it hasn't currently
happened, but there are so many
ways how it could get 80% of the way there without a shit ton of money.
One radical suggestion would be don't just have the little lived experience
(19:10):
box at your conferences. Sorry. Love your conference.
Love your conference. but I should not have to sneak around as a consumer at
one of these conferences.
I'm really on my high horse today. Look, lots of exciting things at ADC,
but we've got some work to do on bridging the real life with type 1 and what
the clinicians are talking about.
(19:31):
Carly, have you thought of anything you want to share, or can I just keep going
down my list of super exciting things? Please interrupt me. I'm just going to,
I'll interrupt you for a moment.
And I'm obviously completely biased, but after spending the last two days talking,
talking, talking, talking, talking, all things type one and really getting messaging
about what we do here at the Family Centre.
I'm really proud. Like this has been such a great experience.
(19:52):
The amount of people that are coming through and.
Like mostly positive and just singing our
praises about how much work that we've done there's lots of
people coming to the booth going i'd really like to see what we might
be able to offer to you can you tell me about a little
bit about what you do and then i go off on my little tangent going
well we do this this and that and then i just see their eyes just go like wow
(20:14):
you guys are doing a lot i was like actually yeah we are i'm really proud of
us so i think that the community support And then psychology services is the
other thing I think where so many healthcare professionals are just like,
oh, my God, we need so much more support in diabetes and psychology.
To have a psychologist that specializes in supporting those with type 1 is just
(20:40):
huge for the mental health space.
And furthermore, for us to be able to offer the subsidizing that we currently
are has been a key takeaway point for people. They're like, psychology that's
free? I'm super proud too.
And when I look around ADC and I see med companies everywhere,
here's new insulins, and I see tech companies everywhere,
(21:01):
and then I see us actually saying, let's talk about what we teach people with
type 1, what supports we give people, how we help them through day-to-day challenges,
and we're kind of on our lonesome, but then we get swarmed by people who are
excited by it because that's real life and you can't just use tech or just use medicine.
Yeah, we're so used to doing what we do, I guess.
(21:21):
We're always in our bubble. We're always charging forward.
But to then actually have other people come past and go –.
Aren't part of our type 1 community and go, hey, you're doing really great things
for the type 1 community. I was like, thank you. Yes, we are.
Validation. Last one on my little soapbox, because this one was cool.
And this one is one that I'm not used to in my 21 years of working in diabetes.
(21:44):
This will sound so obvious because it is, and that's what annoys the heck out of me.
But I went to a presentation where they were starting to say,
do you know what we actually need to do?
We need to stop just looking at whether a medicine or technology impacts HbA1c
and using that as our decision on whether we should fund it or not.
And this came out of the movement to get insulin pumps funded for everyone,
(22:07):
which Justine from Diabetes Australia will talk about.
But what they realized, I know, shock, horror, disbelief, brace yourselves,
people, is that the impact of type 1 is on more than just your blood glucose control.
It affects your productivity, the jobs that people choose to do,
whether they choose to exercise.
How stressed out they are, how overwhelmed they are, how much mental health
(22:31):
concern they have, whether families stay together, whether parents lose their jobs,
whether you might say, I can never do shift work again, all of that kind of
stuff actually has a cost to society and to individuals.
And you know what? If we gave people better education, better support,
better technology, better medicine, maybe they would not have those And maybe
(22:54):
we can justify supporting people a bit better.
It finally feels like a, I always think about the Star Trek utopia that Earth
is in 300 years where you actually value the whole of life and the whole of
a person and not just, I guess, what we talk about here, like HPA1C.
Are we just stopping them from dying or is this actually affecting their well-being
(23:17):
as a person holistically?
So among the many cool and sometimes frustrating things we've seen at ADC,
see i think one of the things i have loved seeing this week is
a poster presentation aka a poster from
david burran many of you will know david burran we did a
the work the work blue hair yes blue
hair hasn't had to bowl us in four years because he's got like the world's most
(23:38):
amazing algorithm that he built himself but he did a poster presentation on
insulin in the hold of airplanes so like travel and where you store your insulin
and where you store your diabetes supplies and all this kind of stuff is always this big topic, right?
Like there's always posts in our communities about, I'm going on holiday,
like what do I put where and like what do I need to pack and blah, blah, blah.
(24:00):
And the advice always comes back in, don't forget to put your insulin in your
carry-on luggage because it'll get lost or it'll freeze in the hold.
This was the black and white rule.
I was taught this when I was diagnosed. Never put your insulin in the hold.
It will freeze. You will never be able to use it. Don't do it.
Yeah. Temperature. Yep.
And I guess the other thing, which makes more sense to me as well,
(24:21):
is that if your luggage gets lost, you need to have the stuff and you carry on.
So that bit makes sense to me, but I'm like, I will not, I have never put anything
in the checked luggage since, like in the form of insulin.
So are you about to tell me that that is changing or changed or incorrect?
As you say, the lost thing, there's no way of getting around that, right?
(24:42):
Like even if you put one part of your insulin in the hold, you still want to
have some with carry-on because your luggage could get lost.
However, they put temperature sensors in something like 200 and something flights
in various parts of the world, like all around the world. There's a couple of
continents they missed.
But anyway, the temperature sensors told them that basically the temperatures
(25:04):
that luggage reaches both in the plane and when it's out in the tarmac or whatever,
not going to be an issue for insulin.
I can't remember which airport it was. There was one that was like Helsinki
or something that was like super cold and somewhere in the States that was
like super hot sitting out in the sun but the temperature inside the
suitcase for the time that it was sitting on the tarmac and
in the hold not an issue at all like you could actually put insulin
(25:26):
in the hold and you'd be fine which is like how like you
can transport like like puppies and farm animals and stuff go in the holds of
planes and whatever all the time because like if they froze that would be a
problem yes that would be a problem yeah so i mean yeah i'm not about to put
my insulin supply in the hold because I would just prefer to have it with me.
(25:48):
It doesn't take up much space, right? But the takeaway is you could put another
little bit there and have another backup just in case something happens to the
stuff you're carrying in your carrier.
Yeah, so it should all be fine. Which could happen. Someone could grab your
bag out of the hold and nick off with it.
And I love how David just, and him and some mates, just got a heap of temperature
(26:08):
sensors and just decided to put this project together.
Oh, this is so David Burran. Yeah. This is, I'm curious about something,
so I'm going to invest in creating a whole experiment on it and rally a bunch
of community people and do some weird stuff.
Yep. And then published it at an actual diabetes conference. It's so cool.
So yeah, shout out to David. Good job. Thank you for your contribution to the community.
Thank you for answering something that has bothered me for 21 years.
(26:31):
Yes, I can stick it in the hold. Awesome.
This show is just in so many pieces today. It's a little bit...
That's because we have exciting and very special guests. So many exciting things.
Yes. So, drumroll. We are sitting across from the lovely Justine Kane,
who is CEO of Diabetes Australia.
This is one of the great things about Australian Diabetes Congress is we get
all the big diabetes people in one room.
(26:53):
So, normally... And then we mug them and drag them kicking and screaming.
Yes. No, not at all. Hey, there was no kicking and screaming.
No, Justine has been very gracious to come and join our podcast.
We are very excited to have her. Indeed.
So Justine has quite the executive background. You've worked in private health
insurance, a number of disability organisations.
I feel like you're the Tim Cook of Operations and Strategy of Australia.
(27:16):
Quite the resume. That's very kind. I am really passionate about ensuring our
Australian healthcare system is left in a better state for future generations.
I am all about how do we work together because we know that fractured communities
achieve less than when we have communities that are working really closely together, hand in hand.
So can I say thank you for inviting me? I'm absolutely delighted to be here.
(27:39):
And thank you to all your listeners for their interest.
Awesome. Yeah, no, they are very happy to be hearing from you.
Particularly on this topic, we wanted to talk to you about the Equitable Access
to Technology campaign that Diabetes Australia has been spearheading.
So if we rewind just a little bit, could you give us a brief overview of what
that campaign is about? out and why was now the time that Diabetes Australia
(28:01):
decided this is the time to push for funding for tech?
Sure. So in my day job, I am afforded the amazing opportunity to go and speak
with so many people who live with diabetes from all parts of Australia.
As I was heading around Australia from Bundaberg to Broome, Burnie,
Brisbane, and every B in between, I was hearing really tragic stories,
(28:25):
stories about people who couldn't afford technology at all.
And we know that technology is standard care.
But when you hear stories about people giving up car insurance,
house insurance to afford technology, when you hear about parents saying that
they'd actually rather go without food themselves to be able to fund technology for children,
(28:47):
when you hear about people getting second and third jobs, it is not okay in a first world country.
So that's where we started to think about what do we need to do differently
in Australia to get to a similar standard of care with tech as what we are seeing
in other first world countries.
If we can use the tech to really help people manage their HPA1Cs more effectively, then we cannot stop.
(29:13):
We must do this. And that is where the idea of uniting the fight for Tick came from. And why now? Like.
For example, why not next year or last year? Or what was it about kind of this
time period that was so opportunistic?
So, we know that the federal government, and thank you very much to the federal
government and the coalition who supported having CGM for all type one.
(29:33):
Yeah, that was a big win. That was a really big win for the community.
But as I said, we can't just stop there. We know that this technology works.
So, that is why we're now calling on the federal government for $200 million
over four years for the most vulnerable in our community, because we know that
we have to do this incrementally. We've got to be realistic.
(29:54):
Life is expensive. There are lots of costs.
There are lots of things that the government needs to support,
but we will continue as Diabetes Australia and our alliance partners to champion
really hard for our most vulnerable first and then work from there.
So what we're calling on is in terms of pumps for people living with type 1,
(30:14):
we're calling on the government to subsidise everyone under 21,
everyone over 21 with a healthcare card, and all Aboriginal and Torres Strait Islander people.
Now, in terms of CGM, the access is not fair and equitable.
People with type 2 at the moment don't have access to subsidies for CGMs.
So we're calling on the government to support subsidised CGMs for everybody
(30:38):
under 21, people who are pregnant, people who have multiple injections daily,
and also for Aboriginal and Torres Strait Islander people.
So let's protect the most vulnerable in our community and then keep stepping
it up bit by bit by bit by bit till we reach a point where everybody has the
access to technology that will help them live well and live long.
(31:01):
Love it. Love it. Yeah, obviously we'd We'd love to have everything right now,
but I get the strategy of, you know, let's step it out and slowly make progress.
Parliamentary Inquiry to Diabetes, they kind of released their recommendations.
From what you were campaigning for, what has that come back with and how far
towards that step do you think we are at this point?
(31:24):
Sure. So Diabetes Australia has been campaigning for a long time for many of
the recommendations that have come through in the Parliamentary Inquiry.
We released a State of the Nation report before the inquiry came out.
We were calling for 25 recommendations.
The Parliamentary Inquiry released 23 recommendations. So we were very pleased
(31:45):
and they were highly aligned.
Recommendations 15 and 16 particularly focus on access to pumps and access to CGM.
So we're really, really, really pleased.
And we're now calling on the government and the coalition to get behind those
recommendations and work with Diabetes Australia and the sector to implement
as many of those recommendations as quickly as possible.
(32:09):
Cool. So, where to from here? What are we waiting on? Who is the decision with?
What's the next? When might we hear?
So, we're obviously in regular communication with members of parliament,
the department, everybody who we think can have a significant impact to get
this through. We do have an election coming up very shortly.
So, we are calling on all parts of government, labour, liberal, independence, etc.
(32:35):
To all get behind this, to unite with the community, to unite in the fight for
tech and to get this funding over the line.
So speaking of uniting the community, what can the diabetes community do to help?
You spearhead this campaign now. How can we help? Fabulous question.
So on the Diabetes Australia website, there is a section of the website called Spark Change.
(32:56):
It is a way for people to go in, put their stories in, put in their postcode,
and the reason for that is then it can go direct to their member of parliament as well.
Get onto social media, get onto LinkedIn, and really tag Uniting the Fight for
Tech and Diabetes Australia and collectively raise our voices.
It's not about us as individuals.
(33:17):
It's about telling people's stories who live with diabetes, the extra 180 decisions
a day that they have to make, the fact that if you're living well with diabetes,
you're still spending about $4,000 a year out of pocket.
If you have complications, that raises to $10,000 a year. We are in a cost-of-living crisis.
(33:37):
It is not okay, and we cannot leave our most vulnerable behind. hide.
One of the great things about Australia is our access to healthcare,
free healthcare, healthcare that keeps us well, keeps our communities well,
ensures that gross domestic product and GDP,
if we want to go down to the economic side of things, we need healthy,
(33:58):
happy Australians to continue this amazing world that we have in Australia.
And everyone deserves that. Everyone deserves it. And I just want to say to
all your listeners, because I know there There are many out there.
Nobody chooses diabetes. Nobody. There should be no stigma around diabetes.
We need to all be able to say that nobody chooses to have this condition,
(34:20):
be it type 1, type 2, GDM, LADA, BODY, any of them.
This is not about that. This is about de-stigmatizing and saying we all should be able to live well.
We should all have access to standard of care. and in this first world country
that we live in, a cost of living crisis should not stop people having access
(34:41):
to the care they deserve.
Hear, hear. Hear, hear indeed. Well, we know the power of the community.
We've seen it in the CGM fight.
Time to rally for another incredibly important piece of the puzzle.
Justine, thank you so much for what Diabetes Australia and yourself are doing
in this space and we will make sure that the Type 1 community is 100% behind what we do.
Put it all in the show notes. Yeah, absolutely. Thank you and thank you to the
(35:01):
Type 1 Centre as well for all the fabulous work you do for the community.
Much appreciated. Thanks, Justine. Thanks, Justine.
Music.
If you've been listening today thinking that is so relatable,
you should consider joining our online community where over 1,000 other people
(35:23):
with Type 1 are sharing their experiences, learning and supporting each other.
Head to type1familycentre.org.au forward slash connect.
Music.
Music.
(00:10):
You're listening to Life in Beta. This is a bit of an unusual episode this week.
This is part two of everything we learned, longed for, loved,
and loathed from the Australian Diabetes Congress.
It was recorded at various times and in various locations, so if you notice
the sound change a bit between sections, that's why.
In this episode, Benjamin gives us his list of the many prick of the week candidates
(00:34):
he found at ADC, a special interview with the CEO of Diabetes Australia,
Justine Cain, about their campaign to get insulin pumps and other tech publicly funded.
And Benjamin reports back on some new information about hypos.
So my summary of it is, one, severe hypos are not as common as we think.
Two, we're still scaring the heck out of people about hypos,
(00:56):
and we really need to think about what we tell people.
Three, the tech burden is real. CGM is a game changer, but it is in your face.
If ADC for you has just been too much learning about diabetes and not enough
laughing about lived experience, don't worry because we're back to our regular show format next week.
(01:18):
So what are we looking forward to seeing at ADC this week? Or what have we seen
so far that we are loving?
I'm loving all the coffee machines, but it really is like there's a barista
at every like med tech and drug company stand. Like you can get coffee anywhere.
It's a little bit insane.
It's a little bit sad really to reflect on just how much of a big business diabetes
(01:39):
is, but I'm going to put my soapbox away.
There were lots of exciting things that I, quiet you, lots of things that I'm super excited for.
I went to a talk at ADC that I thought was going to be incredibly boring,
but it was on type one. So I was excited.
Okay. And it was about hypoglycemia and having had type one for 21 years.
(02:00):
Okay, what are we going to say?
Another low, another day. Here's a low. But no, this was a really interesting conversation.
So they were speaking about what have we learned about what hypos actually do
to the body and also how common are they?
And the really interesting thing is that when they actually looked at the data,
a severe hypo, so where you actually need someone else's help,
(02:24):
is really, really rare. Yeah, well-
Most people's experience would be that, right? Yes, yeah. I can kind of count
one hand the number of times that I've needed someone else's help.
But here again is something really exciting for a healthcare professional to understand.
They were speaking about the fact that that's not really the way that we teach it.
(02:45):
So if I think about the education that I got, here's your insulin dose on a piece of paper.
I basically got told, go too low, you'll kill yourself.
Don't go too high, but you know. so you kind of take
away the oh well i can't go anywhere near the
precipice because then i might knock myself
out kill myself so i'll run myself high
(03:05):
and there's all this fear of hypoglycemia and
then you go for your driver's license and they're looking at you and going when
did you last have a hypo and you either answer honestly which is you know every
day my blood glucose might dip below 4.0 yeah or you say never what are you
talking about hypos and you're so scared that you think I can't drive because
I'm going to drive into a tree.
(03:26):
I can't do exercise because I'm going to hypo through the floor.
And when they actually look at people's lived experience,
So that was one piece of the puzzle. Okay. So then they said,
well, if we talk to people with type 1 who are afraid of hypos,
which is a really common thing. Yep, yep. Really common.
At the family centre. We realised that what we've done is we've encouraged people
(03:48):
not to even try to get close to 4.
We get people to sit more like at 8, 9, 10, 11 because we just keep scaring
them from the precipice.
And actually people don't go anywhere near 4 even because they're so afraid of going hypo.
What they found when they looked at people's response is that when you're at four, you're not hypo.
(04:09):
And this is something that no one with type one ever gets told.
You kind of get your guidelines saying sit between four and eight and four's bad.
And so they looked at people as they were getting close to four,
even at 4.5, even at five with a little bit of a downward trend on CGM now that we've got that access.
And people have the same reaction as if they were actually having a hypo.
(04:31):
Adrenaline kicks in in the brain. your anxiety shoots through
the roof and you start rushing for glucose because that's what
we've been taught so how do they distinguish between the reactions
people have to kind of the fear of the hypo versus the
actual hypo they did mris so they were looking inside functional mris looking
inside people's brains and seeing what activated and comparing an actual hypo
(04:51):
to a response to a hypo where there's no physiological symptoms oh i see what
you mean the mri response showed the same just above four as a logical response
so they could mri someone at 4.5.
So there is no impact to your body whatsoever.
You are not hypo. You are just getting close to hypo. But if you think you're
going low, your adrenaline is spiking the same as if you had a hypo,
(05:12):
your anxiety is kicking in, your frontal lobe is going, oh dear God, get some glucose.
And then they looked at what's the quality of life impact. So after your hypo,
we all know what it's like to have a hypo at the middle of the night.
You have to wake up, you rush around, your sleep's disturbed,
you're anxious, your wife smacks you. It may just be me. Yeah.
That impact is exactly the same whether it was a real hypo or not.
(05:34):
So it's not necessarily actually the hypo that's wiping you out per se.
It's the disrupted sleep. It's the anxiety. It's the worry about a hypo.
It's the disruption. It's then they're trying to get back to sleep,
all of that kind of stuff.
So if we teach people, when you get to five, four, start to avoid those things,
we're scaring people and causing
(05:56):
the same problem as if they had a hypo without actually having a hypo.
Interesting. How do we walk that line? Well, we've all been there, right?
It makes sense because, yeah, depending on where your alert is set for your
low marker on your CGM, we've all been there when we're having technical issues,
where the tech is failing us. It's not correct. It's telling us that we're low.
(06:19):
We hear that beep and we're like, no, that's weird. I don't feel low.
And then a few minutes later, you're like, actually, my heart's quite racing. I'm a little bit clammy.
I think I am low. and then you finger prick, you're nowhere near low.
But because you've like stored this little trauma inside your body from all
those hypos in the past or particularly those ones that really get you,
(06:40):
the ones that take like, I think they say it takes 45 minutes to recover,
for the body to recover, even if you don't like feel it from an actual hypo.
I think you store it. It's like a little PTSD. Yeah, it's a real trauma. Absolutely.
And this research actually was looking at exactly that and saying, well, is that the issue?
(07:02):
Is it the trauma? Is it the fear? Is it the left behind stress that's causing these reactions?
And it's almost impossible to tell. But what we can tell is that actually your
ability to know whether you're a hypo or not is nowhere near as good as we think it is.
So they did studies looking at, you know, they have these people that they call
hypo unaware, which are people who don't feel as many symptoms of a hypo,
(07:26):
so they can't detect it as well, which is a real thing.
But then they said, okay, well, what about people who aren't that,
people who are feeling their symptoms really well? How good are they at actually picking one up?
So, if we use a CGM and we follow people and we see when they go down to twos
and threes- But don't show them the alerts.
Don't show them any information, do they react? And no, people's ability is rubbish, frankly.
(07:48):
Interesting. So, you can be low without knowing, even though you think you're okay.
And what it seems to be, and consumer, not healthcare professional here,
but people actually do go low fairly regularly, and people go low without type 1.
Particularly at like nighttime, for example, or after exercise or so forth.
(08:10):
And it's quite common to sit on that 3.9, 3.8, 3.7 skirting along.
That's not a hypo per se. So they're starting to talk about different definitions of hypos.
So that kind of four to three and a half sort of range may not actually be a hypo.
You may still have to respond to it because you've got double down arrows or
whatever that might be. Yeah. It depends at what rate you're there.
(08:35):
So you skim into the threes from background insulin only from your basal insulin
it's nowhere near the same response as if you've you know done too much rapid
and you're feeling that like,
artificial low like because you've given yourself too much
yeah you know insulin yeah and you're like oh yes but it's totally different
yeah and if you're used to sitting up in the eight nine tens then a 4.2 could
(08:59):
feel 100% your calibration could be completely off and so then they looked at
highs And this gets even more interesting.
And we're doing the same thing to people because CGM gives us so much information,
but it is like having your report card in front of your face every five seconds, right?
So people are reacting to the high before you would ever feel a symptom of going high.
(09:21):
And again, wanting to remind people that's normal when you eat a high glucose
meal, whether you had type one or not, your blood sugar is going to skyrocket
and then your body's going to respond.
But we, because we have the report card, look at those arrows going up. And what do you do?
What do you do when you've got arrows going up? Start rage bolusing. Rage bolusing.
And what does rage bolusing do? Or rage profiling if you're an advanced user
(09:44):
like Carly. What happens? What happens?
You overcorrect? You overcorrect, which means? Then you crash down on the other
side. Then you crash down, which means that you respond like it's a hypo before it becomes a hypo.
And you get stuck in this, I'm anxious about the up and the down.
It's the mental load because you're like, I can't believe I did that.
Like, you knew this could happen.
So, this is, you know, obviously hypos do have the potential to be dangerous, right?
(10:08):
So, this is an evolving space and we're not providing any medical advice whatsoever.
But what is really exciting is that they're actually talking about it and saying,
well, Well, what do we teach people to do?
Because if we just get people in anxious mode all the time, then it doesn't
matter whether they're hypo or not.
They're going to have the same problems, the same disruption,
the same mental health burden. They're going to burn out. Eep.
(10:29):
And even do we say to people, don't look at your CGM after you eat for a little
while, just because you're going to react. You don't want to.
But when you see those numbers go out of range and it's beeping at you every
five minutes, what do you do? too. Maybe don't go at that.
And over time, we're probably going to learn lots more about what's normal.
(10:50):
And actually, the other finding they found is that if you do have a closed loop
system, if you're lucky enough to have a hybrid closed loop,
hypos are even less likely,
but you're even more likely to have those funny little skimmy hypos that are
just at the sort of 3.9, 3.8, because the pump is really good at stopping you from the severe load.
And it will We'll just hold you at that space. But we will still react like
(11:12):
it's a hypo because we're taught to. I'm at 3.7. Grab all the glucose.
I literally did that yesterday, actually, whenever it was. I remember my line
was just slowly, slowly trending down.
And then Shana asked me to, like, jump on a Zoom call and talk to diabetes education class.
But I think really what I was feeling was hungry, which is why I reached the hypo treatment.
(11:34):
And I just wanted to eat because, yeah, really, I was just hungry.
But I was like 3.8 and had been for the last 40 minutes or something.
So my summary of it is, one, severe hypos are not as common as we think,
which I was really excited by.
Two, we're still scaring the heck out of people about hypos,
and we really need to think about what we tell people.
Three, the tech burden is real. Those beeps and boops have, it's a game changer, right?
(11:58):
CGM is a game changer, but it is in your face.
And we need to get messaging out to, I think, particularly GPs around what actually
constitutes constitutes a severe hypo that is a danger to yourself and others
as opposed to just, you know, skimming surface or a hypo that you can deal with on your own just fine.
If I could just ban that, how many hypos have you had question?
(12:18):
Maybe we'll get better and start to talk about how many times have you been
below 2.5 or how many times have you needed help?
Those sorts of things. Yeah. There should be better questions in there.
It's very cool. Very cool.
Let's do prick of the week. So can I take you to the opposite side of that excitement? Sure.
Right up onto the old soapbox. Oh, yeah.
(12:40):
When I come to one of these things, I am reminded that there is still a big
disconnect between the clinical world,
what happens and what clinicians and doctors and educators talk about and what
actually happens on the ground and what it's like living with type one.
And I know, again, this is not a shock, but I still, there's been so much work.
(13:01):
Everyone has heard about person-centered care, patient-centered care,
appropriate language, et cetera. And then I come along and I'll just give you
an example that I'm not going to name names to preserve the guilty.
I went to a presentation where they were talking about what's called a patient
reported outcome measure, which is the longest term for maybe a PROM,
(13:24):
patient reported outcome.
What's a PROM? Did you spell outcome with an A? I don't know where I got that.
I'm sorry. I sometimes wonder at the team I've assembled.
So PROM. Yep. So this is the radical notion of saying to a person living with
type 1, is what we just did making your life any better or not?
And they said the biggest barrier to implementing a patient-reported outcome
(13:48):
measure, literally, do you feel any better as a result of what we did,
is that clinicians do not trust their patients' opinions.
You can't really have an opinion on someone's opinion, can you? Well, no, maybe you can.
Apparently you can. Apparently, these clinicians are so worried that someone
(14:08):
will say what you did didn't help and that that is untrue, that they believe
the patient just doesn't know what's good for them.
Yeah, that's healthcare in a nutshell, isn't it?
I have never wanted to scream so much in a presentation.
I get that from their perspective, it just must look so obvious.
(14:29):
It's just like pre-Bolas.
It's not hard. Just do it. Just pre-Bolas. but in
the reality of life it just i just cannot sit
somewhere where in the same breath a clinician
will say only 10 13 of people with type 1 are hitting the biomarkers we're talking
about they're not getting to hbo1c's they're not getting the blood glucose control
we want we know this and then in the same breath say but what we are saying
(14:54):
is right and it's just the person's fault that but they're not doing it.
There is a word I want to say, which I'm not going to say. Okay.
It's bs it's absolute bs and clinicians
need to step off their high horse and get to the reality if people are not hitting
their blood glucose targets it is not because they're not trying i know what
(15:15):
type one is like we know what type one is like it is relentless it is endless
and your fancy little sliding scale insulin thing that you've just given me is not the solution,
how dare you nice segue into
what did you see adam well directly across from
our booth was one of a certain drug company
(15:35):
and on on their billboard in big
letters it's like give this drug to your quote insulin
naive patients i was like okay i get that some people don't have the information
to be able to dose inch like to make do their own insulin dosing you know by
(15:58):
themselves without a clinician's help. But how about you give them the information?
Arrogant bastards. And they put this on a big billboard. Right in front of us.
We've had to stare at it for the last three days.
And what do you think that teaches the doctors who are using that medication?
That we're so silly. They will use the same language.
Oh, there's all these people out there that are naive to insulin.
(16:20):
Rage. Rage. Because diabetes is so easy. Like, why can't we get our act together?
Oh. Like, that's just how it feels. It does also say a lot about...
I mean, we're talking...
Aldo previously about, you know, you've got your, what is it,
six minute appointment or a 10 minute appointment or whatever,
you know, like how are you meant to teach?
Obviously we've got type one and type two stuff happening here,
right? And a lot of type two ends up being managed by a GP.
(16:42):
And how are you meant to explain to them how to, what's the fancy word for dose insulin?
Titrate. Titrate insulin, you know, in a six minute appointment.
Like it's just- You can't, it's broken.
Yes. And they, oh, all right. I'm getting right on my high horse now because it is worse.
So another presentation that I was sitting in, they were talking about the challenges
(17:02):
of delivering diabetes care.
And there is still this world where they cannot imagine a different space than a hospital.
And then they say in the same breath, gee, it's hard to get diabetes education
in because we are so focused on getting people out of the bed.
And then at the last minute we go, oh crap, the checklist says we've got to
diabetes educate someone, send the educator.
And then the educator runs in and gives you five things and then leaves.
(17:25):
And then they're sitting there saying, how can we make this better?
Don't do it in hospital, you idiot.
It is, honestly, they cannot reconcile their job in hospital is to focus on biomarkers. I get that.
If I go to hospital, keep me alive.
I'm only walking in those doors if there's some risk of me not staying alive.
Get me out of there and get me to somewhere where you have time to actually
(17:46):
talk to me. Because if the way you approach it is, I have all the information, you have none.
We have heard the language, which is, you're not going to do it anyway because
you're insulin or naive or whatever crap they're coming out with,
what are you setting people up for?
Even the way it will be delivered then is, I'm assuming you're not going to
do it anyway, but you know, well, I'll just dumb it down for you.
And how about I just give you this little piece of information?
(18:07):
And then when you come back next time, because what I really want you to do
is circle around DKA, come back into the hospital so I can educate you again.
Okay. Now I'm really on my horse.
But we've got to get out of this sense of you are sick and broken and we are
looking for the fix to people want to do this themselves.
(18:28):
They want the support. They want the education. They want the tools.
How about we just give it- At some point, we should wrap around.
Well, I'll just give Benjamin 30 seconds to just take a deep breath.
We should come back maybe and just have a talk about some of the fantasy scenarios
that we've come up on, things like strategy team days and stuff,
where we talk about if type 1 diagnosis went exactly as we would like it to,
(18:49):
what would that look like?
If budget wasn't a thing, what should that actually look like?
Because I think you'll listen to it and go, that makes sense.
That makes sense. And obviously there's practical reasons why it hasn't currently
happened, but there are so many
ways how it could get 80% of the way there without a shit ton of money.
One radical suggestion would be don't just have the little lived experience
(19:10):
box at your conferences. Sorry. Love your conference.
Love your conference. but I should not have to sneak around as a consumer at
one of these conferences.
I'm really on my high horse today. Look, lots of exciting things at ADC,
but we've got some work to do on bridging the real life with type 1 and what
the clinicians are talking about.
(19:31):
Carly, have you thought of anything you want to share, or can I just keep going
down my list of super exciting things? Please interrupt me. I'm just going to,
I'll interrupt you for a moment.
And I'm obviously completely biased, but after spending the last two days talking,
talking, talking, talking, talking, all things type one and really getting messaging
about what we do here at the Family Centre.
I'm really proud. Like this has been such a great experience.
(19:52):
The amount of people that are coming through and.
Like mostly positive and just singing our
praises about how much work that we've done there's lots of
people coming to the booth going i'd really like to see what we might
be able to offer to you can you tell me about a little
bit about what you do and then i go off on my little tangent going
well we do this this and that and then i just see their eyes just go like wow
(20:14):
you guys are doing a lot i was like actually yeah we are i'm really proud of
us so i think that the community support And then psychology services is the
other thing I think where so many healthcare professionals are just like,
oh, my God, we need so much more support in diabetes and psychology.
To have a psychologist that specializes in supporting those with type 1 is just
(20:40):
huge for the mental health space.
And furthermore, for us to be able to offer the subsidizing that we currently
are has been a key takeaway point for people. They're like, psychology that's
free? I'm super proud too.
And when I look around ADC and I see med companies everywhere,
here's new insulins, and I see tech companies everywhere,
(21:01):
and then I see us actually saying, let's talk about what we teach people with
type 1, what supports we give people, how we help them through day-to-day challenges,
and we're kind of on our lonesome, but then we get swarmed by people who are
excited by it because that's real life and you can't just use tech or just use medicine.
Yeah, we're so used to doing what we do, I guess.
(21:21):
We're always in our bubble. We're always charging forward.
But to then actually have other people come past and go –.
Aren't part of our type 1 community and go, hey, you're doing really great things
for the type 1 community. I was like, thank you. Yes, we are.
Validation. Last one on my little soapbox, because this one was cool.
And this one is one that I'm not used to in my 21 years of working in diabetes.
(21:44):
This will sound so obvious because it is, and that's what annoys the heck out of me.
But I went to a presentation where they were starting to say,
do you know what we actually need to do?
We need to stop just looking at whether a medicine or technology impacts HbA1c
and using that as our decision on whether we should fund it or not.
And this came out of the movement to get insulin pumps funded for everyone,
(22:07):
which Justine from Diabetes Australia will talk about.
But what they realized, I know, shock, horror, disbelief, brace yourselves,
people, is that the impact of type 1 is on more than just your blood glucose control.
It affects your productivity, the jobs that people choose to do,
whether they choose to exercise.
How stressed out they are, how overwhelmed they are, how much mental health
(22:31):
concern they have, whether families stay together, whether parents lose their jobs,
whether you might say, I can never do shift work again, all of that kind of
stuff actually has a cost to society and to individuals.
And you know what? If we gave people better education, better support,
better technology, better medicine, maybe they would not have those And maybe
(22:54):
we can justify supporting people a bit better.
It finally feels like a, I always think about the Star Trek utopia that Earth
is in 300 years where you actually value the whole of life and the whole of
a person and not just, I guess, what we talk about here, like HPA1C.
Are we just stopping them from dying or is this actually affecting their well-being
(23:17):
as a person holistically?
So among the many cool and sometimes frustrating things we've seen at ADC,
see i think one of the things i have loved seeing this week is
a poster presentation aka a poster from
david burran many of you will know david burran we did a
the work the work blue hair yes blue
hair hasn't had to bowl us in four years because he's got like the world's most
(23:38):
amazing algorithm that he built himself but he did a poster presentation on
insulin in the hold of airplanes so like travel and where you store your insulin
and where you store your diabetes supplies and all this kind of stuff is always this big topic, right?
Like there's always posts in our communities about, I'm going on holiday,
like what do I put where and like what do I need to pack and blah, blah, blah.
(24:00):
And the advice always comes back in, don't forget to put your insulin in your
carry-on luggage because it'll get lost or it'll freeze in the hold.
This was the black and white rule.
I was taught this when I was diagnosed. Never put your insulin in the hold.
It will freeze. You will never be able to use it. Don't do it.
Yeah. Temperature. Yep.
And I guess the other thing, which makes more sense to me as well,
(24:21):
is that if your luggage gets lost, you need to have the stuff and you carry on.
So that bit makes sense to me, but I'm like, I will not, I have never put anything
in the checked luggage since, like in the form of insulin.
So are you about to tell me that that is changing or changed or incorrect?
As you say, the lost thing, there's no way of getting around that, right?
(24:42):
Like even if you put one part of your insulin in the hold, you still want to
have some with carry-on because your luggage could get lost.
However, they put temperature sensors in something like 200 and something flights
in various parts of the world, like all around the world. There's a couple of
continents they missed.
But anyway, the temperature sensors told them that basically the temperatures
(25:04):
that luggage reaches both in the plane and when it's out in the tarmac or whatever,
not going to be an issue for insulin.
I can't remember which airport it was. There was one that was like Helsinki
or something that was like super cold and somewhere in the States that was
like super hot sitting out in the sun but the temperature inside the
suitcase for the time that it was sitting on the tarmac and
in the hold not an issue at all like you could actually put insulin
(25:26):
in the hold and you'd be fine which is like how like you
can transport like like puppies and farm animals and stuff go in the holds of
planes and whatever all the time because like if they froze that would be a
problem yes that would be a problem yeah so i mean yeah i'm not about to put
my insulin supply in the hold because I would just prefer to have it with me.
(25:48):
It doesn't take up much space, right? But the takeaway is you could put another
little bit there and have another backup just in case something happens to the
stuff you're carrying in your carrier.
Yeah, so it should all be fine. Which could happen. Someone could grab your
bag out of the hold and nick off with it.
And I love how David just, and him and some mates, just got a heap of temperature
(26:08):
sensors and just decided to put this project together.
Oh, this is so David Burran. Yeah. This is, I'm curious about something,
so I'm going to invest in creating a whole experiment on it and rally a bunch
of community people and do some weird stuff.
Yep. And then published it at an actual diabetes conference. It's so cool.
So yeah, shout out to David. Good job. Thank you for your contribution to the community.
Thank you for answering something that has bothered me for 21 years.
(26:31):
Yes, I can stick it in the hold. Awesome.
This show is just in so many pieces today. It's a little bit...
That's because we have exciting and very special guests. So many exciting things.
Yes. So, drumroll. We are sitting across from the lovely Justine Kane,
who is CEO of Diabetes Australia.
This is one of the great things about Australian Diabetes Congress is we get
all the big diabetes people in one room.
(26:53):
So, normally... And then we mug them and drag them kicking and screaming.
Yes. No, not at all. Hey, there was no kicking and screaming.
No, Justine has been very gracious to come and join our podcast.
We are very excited to have her. Indeed.
So Justine has quite the executive background. You've worked in private health
insurance, a number of disability organisations.
I feel like you're the Tim Cook of Operations and Strategy of Australia.
(27:16):
Quite the resume. That's very kind. I am really passionate about ensuring our
Australian healthcare system is left in a better state for future generations.
I am all about how do we work together because we know that fractured communities
achieve less than when we have communities that are working really closely together, hand in hand.
So can I say thank you for inviting me? I'm absolutely delighted to be here.
(27:39):
And thank you to all your listeners for their interest.
Awesome. Yeah, no, they are very happy to be hearing from you.
Particularly on this topic, we wanted to talk to you about the Equitable Access
to Technology campaign that Diabetes Australia has been spearheading.
So if we rewind just a little bit, could you give us a brief overview of what
that campaign is about? out and why was now the time that Diabetes Australia
(28:01):
decided this is the time to push for funding for tech?
Sure. So in my day job, I am afforded the amazing opportunity to go and speak
with so many people who live with diabetes from all parts of Australia.
As I was heading around Australia from Bundaberg to Broome, Burnie,
Brisbane, and every B in between, I was hearing really tragic stories,
(28:25):
stories about people who couldn't afford technology at all.
And we know that technology is standard care.
But when you hear stories about people giving up car insurance,
house insurance to afford technology, when you hear about parents saying that
they'd actually rather go without food themselves to be able to fund technology for children,
(28:47):
when you hear about people getting second and third jobs, it is not okay in a first world country.
So that's where we started to think about what do we need to do differently
in Australia to get to a similar standard of care with tech as what we are seeing
in other first world countries.
If we can use the tech to really help people manage their HPA1Cs more effectively, then we cannot stop.
(29:13):
We must do this. And that is where the idea of uniting the fight for Tick came from. And why now? Like.
For example, why not next year or last year? Or what was it about kind of this
time period that was so opportunistic?
So, we know that the federal government, and thank you very much to the federal
government and the coalition who supported having CGM for all type one.
(29:33):
Yeah, that was a big win. That was a really big win for the community.
But as I said, we can't just stop there. We know that this technology works.
So, that is why we're now calling on the federal government for $200 million
over four years for the most vulnerable in our community, because we know that
we have to do this incrementally. We've got to be realistic.
(29:54):
Life is expensive. There are lots of costs.
There are lots of things that the government needs to support,
but we will continue as Diabetes Australia and our alliance partners to champion
really hard for our most vulnerable first and then work from there.
So what we're calling on is in terms of pumps for people living with type 1,
(30:14):
we're calling on the government to subsidise everyone under 21,
everyone over 21 with a healthcare card, and all Aboriginal and Torres Strait Islander people.
Now, in terms of CGM, the access is not fair and equitable.
People with type 2 at the moment don't have access to subsidies for CGMs.
So we're calling on the government to support subsidised CGMs for everybody
(30:38):
under 21, people who are pregnant, people who have multiple injections daily,
and also for Aboriginal and Torres Strait Islander people.
So let's protect the most vulnerable in our community and then keep stepping
it up bit by bit by bit by bit till we reach a point where everybody has the
access to technology that will help them live well and live long.
(31:01):
Love it. Love it. Yeah, obviously we'd We'd love to have everything right now,
but I get the strategy of, you know, let's step it out and slowly make progress.
Parliamentary Inquiry to Diabetes, they kind of released their recommendations.
From what you were campaigning for, what has that come back with and how far
towards that step do you think we are at this point?
(31:24):
Sure. So Diabetes Australia has been campaigning for a long time for many of
the recommendations that have come through in the Parliamentary Inquiry.
We released a State of the Nation report before the inquiry came out.
We were calling for 25 recommendations.
The Parliamentary Inquiry released 23 recommendations. So we were very pleased
(31:45):
and they were highly aligned.
Recommendations 15 and 16 particularly focus on access to pumps and access to CGM.
So we're really, really, really pleased.
And we're now calling on the government and the coalition to get behind those
recommendations and work with Diabetes Australia and the sector to implement
as many of those recommendations as quickly as possible.
(32:09):
Cool. So, where to from here? What are we waiting on? Who is the decision with?
What's the next? When might we hear?
So, we're obviously in regular communication with members of parliament,
the department, everybody who we think can have a significant impact to get
this through. We do have an election coming up very shortly.
So, we are calling on all parts of government, labour, liberal, independence, etc.
(32:35):
To all get behind this, to unite with the community, to unite in the fight for
tech and to get this funding over the line.
So speaking of uniting the community, what can the diabetes community do to help?
You spearhead this campaign now. How can we help? Fabulous question.
So on the Diabetes Australia website, there is a section of the website called Spark Change.
(32:56):
It is a way for people to go in, put their stories in, put in their postcode,
and the reason for that is then it can go direct to their member of parliament as well.
Get onto social media, get onto LinkedIn, and really tag Uniting the Fight for
Tech and Diabetes Australia and collectively raise our voices.
It's not about us as individuals.
(33:17):
It's about telling people's stories who live with diabetes, the extra 180 decisions
a day that they have to make, the fact that if you're living well with diabetes,
you're still spending about $4,000 a year out of pocket.
If you have complications, that raises to $10,000 a year. We are in a cost-of-living crisis.
(33:37):
It is not okay, and we cannot leave our most vulnerable behind. hide.
One of the great things about Australia is our access to healthcare,
free healthcare, healthcare that keeps us well, keeps our communities well,
ensures that gross domestic product and GDP,
if we want to go down to the economic side of things, we need healthy,
(33:58):
happy Australians to continue this amazing world that we have in Australia.
And everyone deserves that. Everyone deserves it. And I just want to say to
all your listeners, because I know there There are many out there.
Nobody chooses diabetes. Nobody. There should be no stigma around diabetes.
We need to all be able to say that nobody chooses to have this condition,
(34:20):
be it type 1, type 2, GDM, LADA, BODY, any of them.
This is not about that. This is about de-stigmatizing and saying we all should be able to live well.
We should all have access to standard of care. and in this first world country
that we live in, a cost of living crisis should not stop people having access
(34:41):
to the care they deserve.
Hear, hear. Hear, hear indeed. Well, we know the power of the community.
We've seen it in the CGM fight.
Time to rally for another incredibly important piece of the puzzle.
Justine, thank you so much for what Diabetes Australia and yourself are doing
in this space and we will make sure that the Type 1 community is 100% behind what we do.
Put it all in the show notes. Yeah, absolutely. Thank you and thank you to the
(35:01):
Type 1 Centre as well for all the fabulous work you do for the community.
Much appreciated. Thanks, Justine. Thanks, Justine.
Music.
If you've been listening today thinking that is so relatable,
you should consider joining our online community where over 1,000 other people
(35:23):
with Type 1 are sharing their experiences, learning and supporting each other.
Head to type1familycentre.org.au forward slash connect.
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