Hot Topics for People Living with Diabetes - Off Label Use, Sensors and Stigma

00:00:00: Diabetes Insights, Breakthroughs and Innovators.

00:00:04: The EASD TV podcast from the annual meeting of the European Association for the Study of Diabetes.

00:00:13: Hello!

00:00:13: And

00:00:14: welcome to EASDE-TV.

00:00:16: With me once again.

00:00:17: in this studio are two people from DDoC.

00:00:20: They're very familiar with you at all Bastian Hauck, Renzo Schivella.

00:00:25: Welcome Oh AND D-dog.

00:00:28: So, let's get down to business because the things that we thought we'd talk about this morning are really of particular concern for patients and there were three main areas now.

00:00:40: The first one I know is the new therapies, the GLP ones in being their use in tight ones Bastion.

00:00:49: tell me a bit about concerns.

00:00:51: people have

00:00:51: It not just GLP once it's general that There is increasing awareness, but with that increase in insecurity about new therapies and drugs used off-label.

00:01:06: If you ask most of the HTPs here who are hybrids or prescribers... ...but also live with Taiwan many will tell them they'll be using things which aren't always approved or considered mainstream therapy options But they do good.

00:01:25: So just to be clear, these are drugs that were principally used in type two?

00:01:29: In Type Two or for other disease areas.

00:01:31: And now

00:01:31: they've been used off-labeled in type one.

00:01:33: They

00:01:33: have significant effects on four people living with type One as well but because it's still off label.

00:01:39: there is lack of evidence and studies so the knowledge about this or perceived knowledge knowing something out here might do me good.

00:01:48: That is increasing a lot But comes from whole heba questions.

00:01:52: Of course if you go into your regular GP or your diabetologist, they might be very hesitant to talk about this because it's maybe not approved of label etc.

00:02:01: and then people go To other means let say What we believe?

00:02:06: We need to really talked more inside.

00:02:08: our community is about the benefits The risks etc.

00:02:11: Because we can't.

00:02:11: we're bound by rules as It happened in the DIY Community when it came to tech and closed loop systems.

00:02:19: They weren't approved yet but the community pushed for it, and then eventually this became a standard of care around the world.

00:02:26: I think we're

00:02:26: seeing the same kind...

00:02:28: Kind-of thing?

00:02:29: But there's a lot more regulatory constriction around drugs, of course.

00:02:35: Drugs around new therapies also around everything that is happening in type one about screening….

00:02:41: …and stages on type one – still fairly new discussion!

00:02:46: There are lots of buzzes around these.

00:02:49: but there is very little approved, confirmed knowledge transfer.

00:02:55: And that's in part why we talk about nothing without us and bring people

00:03:00: here.".

00:03:00: So what would you like to see happen?

00:03:03: What will be a course of action... I mean obviously some clinical trials need to be done.

00:03:11: There are lack of evidence needs to be accelerated But the people coming here do for your community?

00:03:20: I think in the midterm, many of these now still considered off-label or not so common therapies approaches will become standard of care.

00:03:30: So we're talking about an intermediate time of what would you say five years ten years where We need to bridge that gap.

00:03:38: and i think What we can Do within The Community And with our very informed Advocates here is To learn at an event like EHSD and then break it down into what is really important to know.

00:03:52: And, than... What would be needed from the HCP side?

00:03:55: Is a empathetic tolerance towards that understanding?

00:04:01: people know there's something out here beneficial for them.

00:04:05: they shouldn't get in-the way or maybe help without of course breaking law or any regulatory requirements.

00:04:12: Okay now The next topic is sensors, because there's a lot of new sensors around.

00:04:21: You go round the halls here at the exhibition and fantastic new range.

00:04:26: what are these issues?

00:04:27: I think it's the same as with any new therapy at all.

00:04:32: yes It is very exciting And in recent years speed acceleration which we've seen advances technology has been incredible.

00:04:44: There are issues around having a good understanding of what those sensors are, how effective they are.

00:04:50: We've got to remember that these day's sensors more and more certainly not by everybody we need think access but being used in interoperable automated insulin delivery devices where we can't risk inaccuracy because insulin is being dosed based on the sensor values.

00:05:10: And so, I think there where the community comes in is that conversations of community members have trialling these different senses just to look at how they work and what their experiences are really important.

00:05:23: In real life?

00:05:23: Yeah

00:05:24: because you're seeing a huge explosion...

00:05:27: Absolutely!

00:05:28: Again if it means more availability devices coming into different price points or markets there hasn't been availability.

00:05:40: This is a great thing provided that they're still safe to use, and we certainly can't have this attitude of well it's good enough It's not good enough.

00:05:51: We need things to be far, we need feel more confident around that.

00:05:56: but I think these are the discussions with any therapies bring people with diabetes into conversations early on in development phases and co-design phases or research phase is part of those conversation.

00:06:08: so end product actually something they want you use for confidence using know it safe.

00:06:15: this sort thing really needs happening routinely, rather than it being an afterthought or us just being bombarded with all of these new technologies and not really knowing how they got there.

00:06:28: One point about the sensors has been a big conversation sensors.

00:06:36: Is that still an issue?

00:06:38: It's always an issue, I think we need to be very conscious.

00:06:42: people with diabetes want know what is happening in their data and have access data and that's it, what can I do with it?

00:06:55: What is it you are giving me?

00:06:56: how useful is it.

00:06:58: How could i interpret it...

00:06:59: And what are YOU doing with my

00:07:00: data?!

00:07:00: ...and what

00:07:00: ARE YOU DOING WITH IT?

00:07:01: ALWAYS!

00:07:02: But I think THAT IS something thats really interesting.

00:07:04: we do want to know whats happening but also HOW IS IT?

00:07:08: THAT WE CAN USE IT IN A WAY THAT IS VALUBLE TO US, IS Valuable in the conversations were having our clinicians because otherwise WHAT IS IT, IT'S JUST NUMBERS AND THAT'S NOT ENOUGH, THAT'S ABSOLUTELY NOT

00:07:21: ENough.

00:07:21: Now the final thing that I know has been a concern for you, for quite some time is... ...the issue of stigma.

00:07:28: Yes.

00:07:28: Rensa, it's something that your very passionate about?

00:07:31: Yeah

00:07:31: absolutely and this is big conversation in the diabetes community.. ..and have been for sometime.

00:07:38: It had been for long time What i think.

00:07:41: where there was really significant movement Two years ago, we launched an international consensus statement to end diabetes stigma.

00:07:49: that involved fifty-one co-authors from around the globe where we really were able to examine what is a consensus about how harmful stigma is as well as recommendations to end diabetic stigma.

00:08:03: It's not just enough talk—we know stigma is harmful!

00:08:06: We've got to really talk about how we can end that harm and end that stigma —we need to hear about what stigma looks like in different countries because it IS different It is different, it's harmful everywhere though.

00:08:17: Next year very excitingly we have a global the first global stigma summit.

00:08:22: that's being held in March in Jaipur and India which is such an important place I believe to hold discussions around this And that is being organised by the group who put together The Consensus Statement led by Professor Jane Spate and Liz Holmes Truscott with a grant from Breakthrough T-One D. So there's really, it's everybody coming to the table to say we recognise that this is an issue?

00:08:48: We have got this consensus statement.

00:08:51: how are we going to solve this?

00:08:52: what are the solutions going to look like?

00:08:53: And that's what that summit's going to be about.

00:08:56: It's not just people talking about stigma in how harmful it is –we know!–it's about actually advance making things better and ending stigma.

00:09:04: So three really important issues and conversations to have on the new drugs or use of new drugs in type one, on sensors an on stigma.

00:09:16: And I hope that people will be having those conversations...

00:09:19: We are making with DDoC.

00:09:21: again we're making sure that people living with diabetes People with lived experience Are at the centre these discussions by bringing them To EASD but also and thats completely new for us But it would very exciting parts scholarships and the travel grants that will bring people to India.

00:09:39: Will be managed by DDoC, so we're not running a DDoK Voices Scholarship Programme.

00:09:44: We are more kind of turning our knowledge and experience with how do this over last five six seven years into you could say scholarship as service.

00:09:53: So we'll be handling and managing that process To make sure many of our DDoQ voices but also other advocates People with Lyft Experience And even for first time early career researchers can be joining these conversations even if they may not have the necessary funds to travel and pay for their hotels.

00:10:08: So again, bringing people nothing about us without us through this conversation is what we care about.

00:10:16: very good.

00:10:17: so thank you both And Thank You For All The Works That You Do At DDoC.

00:10:22: It's Wonderful To See You Grow And Flourish And Do So Much Within The Community.

00:10:28: Thank You Both Very much.

00:10:30: Thank you for joining us on the podcast of The European Association For The Study Of Diabetes.

00:10:36: We hope you enjoyed today's insights!

00:10:39: If you did,

00:10:39: go

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00:10:47: And if you'd like to dive deeper You can find plenty more information at EASD.org.