Immunotherapy to stop type 1 diabetes | Research live series | Diabetes UK

Hello everyone. Thanks Faye. Yes so like 
Faye said, I'm going to be attempting to be   the Jackie Weaver in tonight's scenario. So any 
shouting about standing orders we will boot you,   but I will be bringing your questions to the 
front so if you've got some burning issues that   you'd like Professor Colin to talk about then 
please do let me know. There'll be a portion   of tonight's session where it'll all be question 
and answers, so you can either use the chat box   to get your questions in nice and early, or 
when it comes to it you can raise your hand   and then we can give you the floor and 
you'll be able to speak to Professor Colin   yourself.

Now this isn't my first meeting with 
Professor Colin Dayan. We both worked together,   it feels like a lifetime ago, in I think was 
it 2018, 2017. that sort of thing. 17/18 yeah.   And we put together together a video about 
a different research project so, already,   you know, that just goes to show you that 
that research project is still going,   so you're working on a few but immunotherapy is, 
I guess, one of the ones that you're probably   most well known for but what is it? To begin 
with, what is immunotherapy? What a good question.   So thank you very much and it's a great pleasure 
to have a chance to chat to you all tonight.   I look down the list of participants, I recognise 
a few and others are really really welcome. So   type 1 diabetes is an autoimmune condition. That 
means that it's actually the immune system that   is damaging your insulin-making cells and what 
we've realised, over the last 20 or 30 years,   is that it goes on over a long time.

probably kicks in for many people as early   as six months after birth but for most people 
actually it's already kicked in by the age of   five or six years afterwards. Now obviously some 
people have already got their diabetes by then   but for others who are not diagnosed 
until, the average age to be diagnosed,   the most common age to be diagnosed is around 
12 and obviously there's a huge spread. You   can be diagnosed right up the age of 70 but 
during all that time the cells of your body   that normally protect you against infection are 
nibbling away at those insulin-making cells.   So the idea is instead of just waiting until 
it's all broken and we have to give insulin back,   why can't we stop the immune system in its 
tracks? And that's what immunotherapy's about.   And a lot of people listening and watching along 
tonight will, like you said, already have their   diagnosis. I was diagnosed on the later end 
of the scale at 23 or something, I guess,   you mentioned up to 70 so not quite the latest end 
of the scale but, you know, in relative terms.

So   this isn't necessarily going to change my 
condition but the work that you're doing   could help to postpone a diagnosis and then that 
maybe will give us clues about the condition as a   whole that we could then use to look at, you know, 
those lofty goals of of a cure or something in the   future. Yeah. I think if you're living with type 1 
diabetes now or in the family, you can look at it   in several ways and maybe we'll have a minute just 
to describe a bit more about what it actually is.   One way of looking at is that if 
you have type 1 diabetes yourself,   your first degree relatives, that means 
your children, your brothers and sisters,   have a ten times higher risk than the rest of 
the population of getting type 1 diabetes. The   risk is still relatively low, it's about three 
in a 100, but it's higher than three in a 1000.   But we can also, as part of the immunotherapy 
program, we have a way of testing you to see   if you've got an immune response going on.

you're in the early stages of it and we test for   these antibodies called eyelid antibodies. The 
test now can be done on a finger prick of blood   on, you know, and can be put on a card and 
sent through the post for people to check.   If you are negative on those tests, certainly by 
the age of 12 or 13 ,you've got a less than one   in 10,000 chance. So you can take the view that 
what it does is reduce the risk of your relative   ever getting diabetes. not to zero. but it becomes 
very low and the longer that you don't have the   antibodies, the more it's never likely to happen. 
So if you get to the age of 18 and you still don't   have these antibodies it's not impossible but it's 
very very unlikely that you will develop diabetes.   So that's one way of looking at it and the 
other way of looking at is, if you're positive,   then there are things we can do about it and we 
can intervene to prevent that actually happening.   So I think that's one thing that we maybe could 
be able to chat about a little bit later on, your   family members and how that would work.

We are 
developing also clinical trials. We can chat a bit   more about that: both for people have been newly 
diagnosed and for people who haven't got it yet   and if you want to contribute to the research 
effort then you can take part in that,   so that if you're tested we can, you know, 
help you to take part and lots of people   are taking part at the moment which is really 
terrific and then what you're doing is helping   the next generation with the new treatments. 
If you don't like either of those two things,   I'll put one more thing on the menu, which 
is that, although immunotherapy is likely   the first new therapy to come along, I think that 
will stop people needing insulin but there are two   other ways that people are looking at. 
One is to grow new beta cells and put   them back in and another way is to 
get your beta cells to grow again.   You might think they're the same thing, maybe 
they're related.

One is getting your own cells to   grow again and another one's putting other cells 
back in like a sort of transplant or stem cells.   But the worry is that in both those cases if you 
destroyed beta cells before, you'll do it again.   So there is an advantage then in having the 
immunotherapies that say, 'well look, number one.   I'll switch off your process that's killing your 
own insulin-making cells. Number two, I'll make   yours grow back. That is for the future, that 
is not something we know how to do at the moment   but it's preparing us for a future and 
maybe we can help people who already have,   you know like you Jamie, already have it, or Faye, 
can we do something to make things grow back.

And   I'll just put one last teaser in there which is 
that there is some evidence now that many people,   maybe most people, with type 1 diabetes 
still have a few insulin making cells. I'll say no more about that but 
i can take questions on that.   It doesn't get to zero. Well hopefully I, 
you know, by will or something like that or   maybe science, we can revive them and get them 
working again but it does seem like we're in a   very exciting point in terms of diabetes research. 
I'm, you know, for my Youtube channel and podcast,   I'm covering all sorts of really exciting 
stories, you know, really at the start of   their scientific development, really.

You know, 
you hear about Canada and the curing of diabetes   in mice and things like that, but the work that 
you've been doing, you've been doing for a long   time and you actually lead the Diabetes UK-funded 
Type One Diabetes Immunotherapy Consortium. So   explain a little about a bit about what 
that is and the impact that it's having.

So, you know, immunotherapies come in lots of 
flavors and I would say that type 1 diabetes is   the last, almost the last, disease that they've 
come to. The therapies that we're mostly talking   about today, the ones that are available now, are 
already being used for lots of other conditions,   for psoriasis, for bowel inflammation, for 
arthritis. They've been used for over 20   years in that direction. We're. if you like, the 
last disease that they've come to and one of the   reasons you might say that is the case is [because 
of] what I sometimes call 'the curse of insulin',   that, as Faye said at the beginning, you know, 
100 years ago it was an absolute godsend and it   saved people's lives but now people say 'well 
you guys don't need an immunotherapy because   you've got insulin. Just take your insulin get 
on with it'. And I think an important part of   what we've been trying to do over the last few 
years is to get people to stand up and say 'it's   all very well for you to say that but this is a 
real struggle and we'd much rather not have it'.   So what we've been doing is and to really 
emphasise, it's not just us, it's particularly   networks in Europe and the USA, have been doing 
all of this kind of work, we essentially run   over 25 hospitals around the country, sites where 
people can take part in research.

So we're trying   to get the research done more quickly and get the 
answers out there and then get the companies to   actually license the drugs, because you can't use 
it unless the company goes to the government and   says 'I want to sell my drug for type 1 diabetes, 
can I do this?' So what's happened now is that   there are seven drugs that have been shown to slow 
the loss of your beta cells. So if you take those   then your beta cells don't go quite so quickly and 
the excitement two years ago was one of the drugs,   it's actually been around for 20 years, if you 
give it to people who haven't got diabetes yet,   it delayed the time before they needed insulin by 
three years and that was just one course over 14   days.

They didn't have to do anything more than 
that, it was a 14 day infusion. The newer drugs   are probably not going to be infusions, there'll 
be subcutaneous injections. That's what we want,   that's a very strong direction. So we can 
give it to people who've just been diagnosed   to keep their beta cells for longer. That's 
good because it makes your control much easier   but then if you identify people who 
don't know they've got diabetes yet,   with those antibodies and say 'why don't you take 
it now?', and what will happen is your beta cells,   because you need to lose about 80% of them before 
you need insulin, if we can keep it at 60% or 50%,   you don't really care. You're happy with that 
because it means you don't need to inject insulin   at all.

If you don't need insulin, you don't have 
to watch your diet, you can't get a hypo and also   you have perfect blood sugar. So you're not going 
to be at risk for long-term complications during   the time that you don't need it. So the idea is 
to just do it and then do it again and push it   out again and push it out again and certainly 
our group's goal in the UK, ultimately, is to   make childhood diabetes, first of all, a thing of 
the past. We haven't helped you there, Jamie, but   the idea is to push it later and later and later 
so that you know everybody gets diagnosed later.   Eventually there may well be treatments that you 
can carry on taking so that you don't ever get to   that point.

And as well as the obvious benefit 
of delaying the inevitable, extending the time   between spotting the early signs and then an 
eventual diagnosis, other than the the obvious   benefits, what were the benefits that you that 
you saw, I didn't know, maybe in terms of mental   health or in terms of the family unit and just 
by delaying it in a few years, to allow the child   to become a bit more mature and understand the 
situation a bit better, what benefits did you see?   Well it's really interesting. So most of that 
wasn't done by our group because we've been   working with the newly diagnosed but, and this is 
where, I think, I'd really love a debate to happen   tonight and then across the country because some 
people say 'oh I don't want my child to be tested   because you're just going to upset us' and, on 
the other hand, what the evidence showed is that,   yes of course, you are upset when you're 
told your child is going to get diabetes.   Now I would just say if you've got two of these 
antibodies you've got a 90% chance, it's not   could be it's going to happen at some point in 
the coming years.

Of course that's very upsetting   and some people with diabetes themselves 
say 'I don't want to know that'   but there's already an advantage. Maybe more so 
for people who don't have diabetes in the family,   but what we find is they don't end up getting 
sick. So at the moment almost everybody who's   newly diagnosed, maybe everyone on the call, 
ends up in hospital. They end up, nobody   understands what's going on, they have weeks 
of people going 'oh the child's drinking a bit,   but he's just moaning and he's a bit tired and 
I've told him to pull himself together and he's   losing weight he, should eat a bit more', back 
and forth to the doctors.

We can show that   they've been to the doctors nearly five times 
as often as other children during that period.   Nobody gets what's going on and then, bang, 
they get ketoacidosis and they're in hospital,   pretty sick and many of them in intensive 
care when they're little children as well.   That disappears completely when people have been 
tested because they know it's going to happen   at some point, so when they start drinking a bit 
more, losing a bit of weight, immediately a finger   prick and you know what's going on. That means 
that they can learn about it in a much calmer   way. They can start thinking about the diagnosis 
early on. If you don't have it in the family   you can suddenly realise what it is, instead 
of the whole thing happening as a crash, Jamie,   which is what has happened for the last 100 
years. That it's just 'oh my god, I didn't realise   that was going to happen.

Now I've got to think 
about changing my life, for the rest of my life,   taking these injections I don't understand, this 
carbohydrate stuff and this hypoglycemia stuff'.   Whereas if you knew it many years in advance, 
then that would help and what we see is that   that although there's an increase in anxiety when 
they're told it, it's much less than when you're   diagnosed out of the blue. Because you're much 
better prepared and so one of the things we expect   to happen is that no-one comes into hospital 
anymore at their diagnosis.

Why do we need to do   this, and again I'm interested to hear what people 
say on the call, it's really distressing isn't it?   I mean that your introduction to illness is ending 
up in hospital. Some people say to us 'it's good   to have a shock' but I don't think there's 
any evidence that that's a good thing to do.   No, I'd agree with that. I think especially when 
I was diagnosed in later life, I don't think it   really hit me until probably around about now 
five years later when I've actually, sort of,   you know, during the pandemic, taken some 
time to reflect on what's just happened,   you're right and the treatment of diabetes and the 
way that people manage it, it's very reactionary.   So if we can pre-empt some of that it might make 
the whole situation a lot less like, I don't know,   a mad dash to the fridge and back 
upstairs to the insulin and then   repeat the process.

But would 
that mean then that we're testing   every child for the potential signs of type 1 
diabetes? Nothing gets past you does it, Jamie?   Yeah that's right. So an important statistic 
is that only 10% of diabetes, type 1 diabetes,   comes from families and so I'm guessing a lot 
of people on the call tonight, when they were   diagnosed, there was no one else in the family 
who had it and that is the usual situation.   So if we want to prevent all diabetes we 
do have to screen the whole population,   that's exactly right and we're beginning 
to think about it.

Obviously we need the   drugs to be introduced. We're hoping they 
will be introduced in the next year or two   and there'll definitely be more clinical trials 
in the next year or two for people who are at risk   and then we think about how you do this screening. 
So one way of doing it is that when you take your   kid for a preschool vaccine, so they always go to 
the GP about age three and a half, have a finger   prick done there, we'll tell you the answer and 
obviously it'll be optional, it won't be required.   That would be very good for catching about 
70% of people who are going to get it who   haven't got it yet but we'd have to do 
something different in the younger ones   and of course the younger you are when you're 
diagnosed, if you're under five, you tend to   be sicker when you're diagnosed and it's a bigger 

So we're actually moving to something that's   already been started in the Oxford region, and 
actually they're doing it in Newcastle and a   few other areas, which is to, and some people 
may have taken part in that, do the genetics   at birth and so you can do that on the, 
you know the heel prick that the baby has,   you can then look at their genes for diabetes and 
that can identify people who are likely to get it,   not perfectly, but likely to get it in the next 
five years and those ones will be followed more   carefully.

So that's an option and I think that's 
the future, is that, you know, we can look at DNA   and give you predictions. We're just taking 
a look at some of the comments and questions   that are coming in already, a lot of people 
asking where can I get this drug? Where can I   take this test? And really, that's what I mean, 
that interest is what's eventually going to   help these become more mainstream. So are these 
trials inactive or recruiting? Yeah so you can,   particularly if you're a family member at the 
moment and I'm guessing most people on the call   probably are a family member, so the Innodia study 
is studying family members and also the ADDRESS-2   study can study family members although at the 
moment it's only kind of licensed if you're newly   diagnosed, you're a family member of somebody's 
newly diagnosed but Innodia, which is operating   in several places around the country, we can give 
you information after that, you can go and be   tested and if you're positive they'll continue 
to follow you up.

It's part of, if you like,   an observational study at this point. In terms 
of the drugs to prevent, we think that that study   will be open later this year but if you're tested 
and you know you're positive, you'll be positive   for probably many years so you don't need to go 
into a trial straight away, it can be later on. So then the applications of this, you know, all of 
these things that we're going to find out through   these trials. How would they affect someone like 
me, who's definitely diabetic, like you say has   lost 80% of their beta cells, a lot of people in 
the chat box here as well asking those questions,   but what does it mean for me, as an older person 
with type 1 diabetes? I can't think of you as an   older person, Jamie, though and I noticed that 
there was a comment earlier on from somebody who   was in their 60s, wasn't there, and said 'I've had 
all this' said Ann Brown I think it was: 'I was   diagnosed last year at 65 years of age, has this 
just been nibbling away since I was born?'.

So   we can look at it in lots of different ways. 
Well I mentioned in my little taster to you,   that you probably still have some insulin making 
cells. We know this because if we measure a thing   called pro-insulin, this is the protein that 
becomes insulin and when the cells of your   body make insulin they make pro-insulin first and 
weirdly in people who've got very little insulin,   that we can detect, we can often detect 
pro-insulin and that only comes from beta   cells.

So it suggests that some of the beta 
cells are asleep, might be the right word,   but they're not going all the way to make the 
final product if you like. They're making half   of it and then spitting it out. So it's not our 
specific area of research but it is related to it,   is to say well how can we get these back into 
action? And one of the things is going to protect   them from being knocked on the head again by the 
immune systems, as I mentioned earlier on, we're   also very interested in ways we can get these 
to function a bit better. We are just starting,   probably in the next three weeks, a study 
of a tablet that's been used for 50 years   to treat blood pressure called Verapamil and 
that'll be across ten centres across the UK.   This is for adults aged 18 to 45 and strangely 
enough this tablet seems to protect beta cells.   It doesn't make them regrow, so we're not quite 
ready for you yet Jamie, but it's still for people   who are newly diagnosed in the last six weeks. 
Somebody asked what newly diagnosed was for   some of the studies, it's three months from the 
first insulin injections, others it's six weeks,   but we'd offer you to take the tablet and 
see if that can hold on to those beta cells   longer.

And I think, just from that conversation 
there, we've sort of sparked a bit of   interest in people hypothesising where their 
type 1 diabetes came from. So I wonder if we can   touch on that because I'm seeing here a lot of 
people thinking that something triggered their   condition and that would sort of ring true with my 
situation. So just moving to Bristol, getting my   first job after university, you know, ridiculously 
stressed, you know, at the point of burnout and   then at that point I find out that I've got type 1 
diabetes. So, I don't know, what are your thoughts   on that? Yeah, well I think the general belief is 
that it's the straw that broke the camel's back,   Jamie, rather than the beginning of the story. 
So the idea is, as I mentioned, that, you know,   you only need a relatively small number of your 
beta cells.

It's a bit like if I take one kidney   out you wouldn't notice it. If I take one and a 
half kidneys that you still don't really notice.   You need more than that loss to not be able 
to deal with, to do the job. You've got spare,   let's put it that way, spare capacity. So in the 
same way you can lose 50% of your beta cells.   You can cut out half the pancreas actually and you 
don't have diabetes. So there is reserve but when   you're sick when you have a temperature, when you 
have a virus infection, you need more insulin.

You   probably know that yourself, don't you, that you 
have to inject more insulin. It raises the stress   hormones, your demand is more. Now if you're 
right on the edge and you've only got a few   beta cells left and then you get flu or you get 
stressed and you've raised the stress hormones,   bang, now the sugars go through the roof because 
now you can't cope. So it's like it revealed what   was coming on for some time. And then, just 
to echo what Ann was saying earlier, that the   sense that, was this nibbling away at me for my 
whole life? So this is something that I often   think about in the years preceding my diagnosis, 
would I have been unwell or, you know, has that   time between the diagnosis affected, you know, my 
body's health generally? Has it done some damage?   I think we can confidently say no, because the 
thing that does damage is the high sugar levels,   not the lack of insulin and if you've got 
enough insulin to do the job and if the   sugar levels are perfect, it's not doing you 
any damage.

So that's the good news about it.   I don't know the answer to Ann's question 
because what other colleagues have done,   and Kathleen Gillespie's group in the 
Oxford area in the UK has done, for example,   is to follow children from birth. So they start 
right at the beginning with cord blood and go all   the way through and they've got as far as 18, 19, 
something like that, a little bit older actually   in the BOX cohorts which have been going on for 
30 years but they've not got to age 60 yet. So   we don't really know how that's going to play 
out and we think there probably are some people,   believe it or not more than half of people are 
diagnosed as adults, we may not realise this, and   they often get muddled up with type 2 diabetes ,
especially when they're a little bit older, but   the, you know, we don't really know where all 
that comes from.

One of one things we do know   is that the more genes you inherit, 
the younger you get your diabetes,   if that makes sense. So we can know, there's over 
40 genes that we monitor and you get a score,   depending on how many of the bad versions of these 
genes you've got. Even if you get 40 out of 40   it doesn't mean you're actually going to get it 
because, you know, as you were asking what causes   it, you know, the identical twins if you have an 
identical twin that's exactly the same genes as   you there's still only a 50% chance they're going 
to get diabetes. So the genes isn't everything.   It's only half, maybe less than half, the story 
but you know the more of these genes you get, the   younger you're going to get your diabetes.

well I haven't worn jeans since March of 2020.   And they were good jeans! Interesting from 
Rebecca, who said hers came on after some   vaccinations for travelling. So that would make 
sense with the straw that broke the camel's back   but another one here from Rachel Bennett, 
who asks, her youngest son was diagnosed   five years ago. His older brother started with 
an autoimmune condition. Now the hospital have   agreed to test him for antibodies.

If he's 
positive would there be an immunotherapy   treatment available to him and I'm guessing 
probably not if we're still at trial stage?   Yeah so we are at the stage where nothing is 
licensed yet although I think the more we push and   the more you push and the more Diabetes UK pushes, 
the more likely it is to happen sooner because   unfortunately there's been a view up to this point 
that we don't need anything other than insulin   and actually myself and other doctors, I think 
have been, you know, guilty of this. Of saying   well it's fine look we've got these fancy pumps 
and so on but in fact the levels of control   have not improved that much over the last 20 
years. I know that might seem a bit shocking   to people, people have tried very hard. In 
children it has but overall in the population,   less than 30% achieve a target 
of, you'll be familiar 7% or 53,   that has only shifted probably from about 25% 
to 30% over the last 10 years.

So the fact that   the kit is there doesn't mean everybody wants 
to use it or is happy using it. So I think it   starts by people saying we need something more 
and then we do want to believe that if the   companies are pushed they will license the drugs 
and I'm saying this quite strongly because we've   talked to many of the big companies and they say 
we've licensed it for psoriasis, we've licensed   it for arthritis, we're not going to bother in 
type 1 diabetes because no one's going to buy it,   that you don't want it, the doctors said they 
don't want it, the patients say they don't want it   and that's why I think changing that attitude 
is really important and that will make them   available sooner.

So we've got to make a bit 
of noise? Definitely. I need you guys watching   along to make a bit of noise now. So we're going 
to open it up. We're sort of halfway through, so   we're going to open it up, to sort of a question 
and answer section. So you can, like people have   been doing already, whack some questions in the 
chat box and I'll pass them along to Colin or   you can use a function in Zoom called 'Raise 
Hand'. So I think if I attempt to do it now,   no I don't know where it is. It might be on your 
screen somewhere, maybe, if you hover over your   face.

So that'll be how I know that you want to 
ask a question or I think actually someone's just   holding up their hand to the camera, Galaxy 
a2 a20e. So I'm going to ask you to unmute   because i think you've been holding your hand 
up for a while. So if you just click unmute.   Then you have to find yourself and then click 
on yourself, then you can raise your own hand   you can't raise anybody else's hand.

So Galaxy 
a20e, I've unmuted you. You can ask a question.   Hello my name's Richard Beamond from 
Gloucestershire. Hi Richard. Now   I was diagnosed in 1959 after a tonsil operation 
that went wrong and at the time the matron there   was totally unsympathetic. When I started going 
on injections she glared at me and said 'Oh you'll   have to have these injections for the rest of 
your life'. Now I've basically endured that.   A couple of years later because of the 
diabetes, I also developed epilepsy,   so all my life I just endured these injections. 
Now all I'm asking is, is there any hope for   people like me, who've had diabetes over 60 
years and have basically just got fed up with it?   Yeah very good question. I think everyone 
gets fed up with it many many times over.   I think you're absolutely right. 
So you know, at the moment,   if you like, if you said 'what could I do 
for you?' I'm not going to say tomorrow but   we do of course have transplantation, we have 
pancreas transplantation the whole pancreas and   we have Islet transplantation as well.

we only use that for small number of people   and the reason is twofold. One is we don't have 
that many pancreases or islets because we can't,   you can't give them from a living donor. if 
you like. it has to be from somebody who's died   but also because at the moment, to take those, 
to have a pancreas transplant, you need to take   pretty strong immune drugs. They have to 
knock your system pretty hard so that you   don't reject the transplant and that has some 
risks for you and people tend to say 'well,   generally, if you're doing okay on insulin, it's 
not worth you taking that extra risk'. Also having   a whole pancreas transplant is a pretty major 
operation and the transplants last for about   five to seven years, sometimes less, sometimes 
more, so it's not been a routine procedure but   a couple of things that i mentioned earlier on 
might become available. So that's either growing   your beta cells back or developing stem cells that 
can grow into beta cells and putting those back in   and find ways of doing those with less.

You'd have 
to take less drugs to do that but I guess what   we're saying tonight is that's a little bit behind 
the curve, at the moment, than these treatments   for people who are newly diagnosed or who haven't 
lost their beta cells yet because at the moment   we don't know how to regrow the beta cells. It's 
better for us to prevent it rather than actually,   we're less skilled at intervening at your stage 
Richard, if that makes sense. Fantastic. So I'm   going to work through the people who've got their 
hands raised. So Zeala I think. There's a few   things on the chat as well isn't there Jamie, as 
well? So yes we'll come back to those in a second.   We'll just try and work through the people who 
got to ask some questions.

So Zeala over to you.   Hi, my name's Zeala. Sorry. I've got I started 
reading a book called 'Mastering Diabetes'   and it's by a couple of American guys 
who claim that, if you went on to   a low-fat plant-based diet, you can reproduce 
your beta cells and stop that breakdown   but the diet is extremely rigid, you know, it's 
literally all fruit and vegetables and nuts,   not nuts sorry, rice and grains 
and beans and things like that.   Have you got any view on that? Is it, you know, 
is it something that you've heard of as well or,   you know, what do you think is it possible to do a 
bit of that to help yourself or what do you think?   Well actually I don't know so much about 
that diet Zeala.

I know that a lot of people   use carbohydrate restriction which of course is 
the almost opposite of what you've just described   and I'm not a big, I think you're mute you're back 
on mute sometimes I can't hear you for a minute   somebody muted you I think. Thank you. It's just 
what they were saying that lots of people when   they're first diagnosed with diabetes, sorry 
to interrupt you, but are told to reduce their   carbohydrates.

So you naturally then take less 
insulin but their sort of claim is that that's not   the way to go and you actually need carbohydrate 
in order for your body to function properly?   Yeah no I would agree with that. I'm not strongly 
recommending carbohydrate restriction. No. It was   the only thing actually a hundred years ago that's 
what they did they had a sort of egg diet and they   severely restrict carbohydrate and the 
kids got thinner and thinner and thinner,   it was just awful. The idea that a fat-based 
diet could actually increase your beta cells.   I don't know that there's, as I've not seen 
any evidence that that is being proven, let's   put it that way around.

So, you know, I think 
that's the best I can say. I haven't seen any   independent research work on that. Okay. 
Knowing that that actually does work and one   of the tricky things is that the rate at which 
people lose their beta cells is very variable,   so there are some people who 10 years later 
are still making loads of insulin, and people,   usually the little ones, you know, the younger 
you are the quicker it goes, who within six   months really have nothing and, you know, are 
very dependent on insulin, missing one dose   would increase their risk of ketoacidosis, that 
kind of thing, they're very insulin dependent. So   Okay. Thank you. Thank you for the 
question. I like the sound of that egg diet,   Sidra coming to you next, 
I'd just ask you to unmute.

Okay Sidra, we can't hear you. i can't at least.   Oh, you're back on mute 
Sidra. Oh don't you love Zoom? Can we have Sidra unmuted. There we 
are. You should be unmuted now, but   Sidra we still can't hear you I'm afraid. You want 
to type your question into the box and I'll ask,   I'll do the talking for you? Thanks Sidra. Let's 
move on to Lucy then. Lucy what's your question? Hello Lucy? We're in a muting loop now. I think 
we've got now. I think I've got it.   Hi I was diagnosed with type 1 when I was eight 
and I'm now nearly 18. So I was wondering about   the immunotherapy drugs: do they have a 
drastic effect on other processes in the   body and would they put you at increased risk of 
other things because obviously immunosuppressant   drugs. Suppression sounds a bit scary, doesn't it? 
Yeah and yeah what are the effects, what are the   other effects of taking the drugs? Yeah so it's a 
really really good question and it's a question I   especially like because people do worry, you know, 
when I said to, I think it was Richard, I said,   you know, the drugs you need for transplants are 
pretty strong drugs and they do increase your risk   of infections and then you increase your risk of 
things like skin cancer but the drugs I'm talking   about are not those.

They're the ones we use for 
rheumatoid arthritis. Some of them are licensed   for arthritis from the age of two upwards. The 
reason is that they're very clever and more   selective. They just pick out one little bit of 
the immune system rather than the whole lot. So at   this point there is very limited, there's little 
evidence that they have long-term side effects,   possibly a slightly increased risk of things like 
tuberculosis if you were to get that but not, you   know, not urine infections or chest infections, 
not the kind of normal thing that you would think   about and even then this drug, for example, 
anti-TNF has been around for over 20 years.   When I was doing my PhD, Lucy, I told them it 
wouldn't work and then they developed it and   it's been the biggest selling drug of all time, 
so don't don't count on everything I say but   it's been used in rheumatoid 
arthritis for 20 years and really   certainly no significant increase in cancer. 
Possibly it's debated about whether there's a   slight increase in tuberculosis but it tends 
to be in populations that have a high risk of   TB so the slightly odd infections and that's 
the reason why you wouldn't do it for nothing.   Some of the newer approaches though, the one I 
mentioned for the six, the fortnight, you know,   two weeks of injections.

I think there's somebody 
on the call who's actually had that. In Sheffield   there were five people treated in that way. Really 
then the immune system seems to go back to normal   after that it's like it resets it. So we're 
trying to get make it better and better but   we wouldn't be suggesting at this stage if it was 
worse than instant, let's put it that way around.   Great question, thank you for that Lucy. 
So I'm going to pop over to the chat box   again. If you've got any questions and you don't 
feel comfortable asking in front of everyone,   do pop them in there.

It's just at the bottom of 
your screen. Nadia here says 'hi, I was diagnosed   five weeks ago'. Welcome to the broken pancreas 
gang, and 'I'm interested in the project study.   However it's for age eight to 17 I'm 18. Would 
there be a study like this for people my age?   And of course the answer would be in this case 
yes. So we have studies now open from 18 to 45.   So it'll be somebody with 40 who's 46 years 
old just about to come on the chat. So   there is a study open now called the 
Impact study that you'd be eligible for   potentially. So I think probably towards the 
end or I can put in the chat. So our website   is or search 
type one diabetes research, you should find   it and then it's got a list of trials and the 
trial centres where they do it but we have a   lot of people actually, especially during this 
time, they register on the website and they're   willing to travel to different areas so if it 
isn't happening in your local hospital it may   be happening in a different hospital further 
away and you can travel to those things.  They do the impact study is hoping, is wanting 
to be within nine weeks of diagnosis so you might   want to get in touch fairly soon and the new 
study I mentioned with the the blood pressure   tablet will be open hopefully in a month or so's 

That will again be six weeks from diagnosis.   We still have some active recruiting going 
on today. That's what we like to see. Yeah.   One more question from the chat box then we're 
going to come to you Alan next. Sam says:   'why are more children being diagnosed? My 
two-year-old is six weeks into diagnosis.   Also can tech for children catch up? These 
pumps seem to be developed with adults in mind?'   Three good questions there really. So I think 
you're right that people need to think about   the technology. I'm not a technologist but I do 
agree with you. In fact, I know David Dupont's   on here who works with us at the Diabetes 
Research Steering Group in Diabetes UK.   We strongly believe that they could make the tech 
a lot more user-friendly and more people would   pick it up. If it was a real plug-and-play easy to 
wear kind of thing. So do keep pressing for that.   I think the question was about are more younger 
people being diagnosed and the answer is yes   more under the age of five in the last 20 years. 
The belief is that's because we live in a cleaner   environment.

It's hard to imagine but just about 
70 or 80 years ago half of the children died,   half of children died in childhood from 
infectious disease. Now if a child dies   of an infectious disease, meningitis or something 
like it, people think it's shocking. So the immune   system was working really hard in those days. 
They were exposed to infections all the time   and we think it's not so much an idle immune 
system that then decides to do autoimmunity   but it seems to be that we, you know, as you 
and again see more allergies you can see more   peanut allergy things like that. That seems to 
mean that the immune system is less challenged   earlier on by infections. Fantastic so Alan 
coming to you now. What would you like to ask? Hi my name's Alan. I'm 54 and just 
recently been diagnosed as a type 1   and at the hospital they said that's it's quite 

It's normally in late adolescence and I just   wonder, you know, is there any kind of research 
or, you know, can I get my beta cells reworking,   you know, what does the future look like really? 
For you? Yeah, well, actually it's probably not   as rare as people used to think and indeed 
you know the group in Exeter published quite   recently to say, you know, it's more than half 
of the people at all ages are being diagnosed,   not half of all the people diabetes because 
of course there's loads of people type two   but half of the diagnoses are in adulthood. 
So, and in fact, the rate continues all the   way through up to the age of 60 or 70.

I'm with 
you on that now. It's good to be diagnosed later,   you know, I was saying about the kids that we try 
and push them out because long-term complications   take 15, 20, 50, 60 years to happen depending on 
your level of control. So on one positive side if,   you know, you've got less time to develop 
complications if you like than if you're diagnosed   at the age of five. In terms of treatments, as I 
say, it's interesting that our studies have been   generally up between 18 and 45 largely because we 
didn't want to get muddled up with type 2 diabetes   but actually your case flags up the fact that 
we really should open this a bit more and what   we're going to do is to do, if we do the genetic 
tests along with the antibody test we can be more   certain that you actually have type 1 diabetes and 
I'd add one more thing to that which is up until   recently people didn't actually diagnose type 
1 diabetes properly. They just said 'oh oh you   look like, Alan, you look like you need insulin, 
you've lost a bit of weight' That's it and if you   say well did you prove it, was there any tests you 
actually did? Then the answer generally was 'no'   and we're going to try and encourage more 
people to make that as a definite diagnosis.   There isn't a perfect diagnosis but if 
you've got the antibodies then it's 90%   certain you've got type 1 diabetes and if 
you've had diabetes for more than five years   and you still have a lot of insulin circulating 
and no antibodies, it's more likely you've got   type 2 diabetes and that's important because if 
actually you've got type 2, we've found that 5%   of the clinic in Scotland could stop their insulin 
because they get they've got the wrong diagnosis.   They didn't have type 1 at all and then there's a 
lot of new drugs for type 2 that work pretty well   and, you know, you didn't need to have insulin in 
the first place.

So I think getting closer to the   correct diagnosis, I'm assuming it's correct 
in you, but I'm saying that's the direction of   travel and that more and more of the studies will 
include you although we don't at the moment. Okay   and also I found that from when I got diagnosed 
I'm probably taking half the amount of insulin   that I did at the beginning when I came out of 
hospital. Is that something that is natural or? How long ago did you say you were diagnosed? It 
was in July last year.

So about eight months ago,   something like that? Yeah and about about 
two months ago with the diabetic clinic we   took the dose down to 50% and now i'm 50% minus 
one and it all sounds really good because I'm   using less insulin. I'm feeling okay and 
my a1c is down to about 6.3 but, again,   would it all be new? Well, it's all good but 
did i mention that mostly people lose their   insulin in the first five years after diagnosis 
but it varies quite a bit, sometimes it's quick,   sometimes it's slow.

What you're telling me, if 
you're on less than about 0.8 to 1 unit per kilo,   so if you calculate the total amount of insulin 
you're on and you divide it by your weight,   if you're on much less than that, for example, 
if you weigh 60 or 70 kilos and you're only   taking 30 units of insulin, almost certainly 
you're still making quite a lot yourself.   So that's telling you that you're still making 
it and it isn't that unusual to have in the first   year a kind of recovery and we believe that's 
because the beta cells were overwhelmed by the   high sugar at the beginning. They went 'oh my god, 
I don't know where to start' and as you brought   the sugar down it became less stress for them and 
they began to perform a bit better. But it doesn't   stop the process altogether. We don't have good 
evidence that tight control makes them last   longer but it's still very good for you in the 
longer term. So every bit of insulin you have,   as you're showing, really helps the control. 
So I think a lot of people on the call might   remember that in the first year or so after 
they were diagnosed, it wasn't quite as   tricky as it is five to ten years later or 
20 years later when it's much more variable.   Really interesting.

I'm just going to move 
on because you've not got loads of time left   but that was really interesting from Alan. There 
and a lot of people in the chat actually are just   a bit concerned. Can I select my favorite 
questions out of the chat as well Jaime?   Yeah you go ahead. I just want to let everyone 
know that Faye from Diabetes UK has said that   we'll be putting this on the YouTube, Diabetes 
UK YouTube, I think, so if you've missed   a bit because of your wi-fi or something like 
that then don't worry you'll be able to watch   us on catch-up. Colin, what did you want to say?
So there's some great comments here .One from Lucy   about her six-year-old daughter thinking about 
more time would be good. I certainly back that up   and other people saying it's not good to have 
a shock. You know people often say it's good to   have a shock but then they used to say corporal 
punishment was a good thing.

I'm not sure we've   actually proved that over time. There's one 
comment worth saying should every baby be   tested then? And then the answer ultimately would 
be yes. At the moment it's only in certain areas   of the country where they're offering that test 
to mothers. Remember that the baby test doesn't   prove it. It doesn't mean you've already started 
because it may not have started, that process,   but it tells you whether you've got 
a higher risk of it happening and   more monitoring. There's one from Hazel 
about shouldn't all GPs and the general   public know about the symptoms and signs? 
And I think Faye may want to come in on   this. We've been trying this for years and 
public campaigns and so on but you have to   remember that a GP only sees a new diagnosis 
of type 1 diabetes every five to ten years .  So it's not, whereas they see coughs and colds 
all the time and kids losing a bit of weight   all the time.

So I don't think we're ever going to 
overcome the fact that if you take your kid, who's   got rather non-specifically unwell, to the doctor 
they're going to go 'yeah sure we all have these   things there's a lot of it going around'. Until 
they miss the diagnosis. So that's why I think   that the testing alerts the people to where it's 
going to happen and gets you completely prepared.   One mother said to us 'you know I couldn't 
prevent the diabetes but I could prevent the DKA' And just as you're saying that.

A lot 
of people are asking how can I get   these antibody tests? Kathleen's asking about 
her nine-year-old and six-year-old. Yeah   so as I say, well the current option is if 
you look up Innodia or register on our website   we can refer you to a centre that can do those 
tests for you. It's done as part of a clinical   trial so you have to kind of give your consent and 
they do the test and then but then you're included   in the follow-up. So you'd have to agree to doing 
the follow-up. It is possible, but not definite,   that later on this year it may be available 
through pharmacies that you'd have to pay for.   It's not a standard test that you can just go 
to the GP and say can I have this now please.   We hope that is going to be the future in 
the next years maybe two or three years but,   at the moment, it has to be part of a 
clinical trial but it is available.

Then   did you have any more comments or questions 
that you wanted to pick up on specifically? Well I'm just looking down actually 
with this because they're all good.   many good comments. You pick up your favorites 
as well because there's so many great comments.   There's one here from Lawrence, so from someone 
that's, you know, inside the the research sector:  what can we do on the outside is people with 
diabetes? What should we be using our voices for,   what's the priority? asks Lawrence. I 
knew that was the question I wanted.   Well I think I mentioned it early on I think, 
you know, people may have heard me say before   I want you to get angry about not having a 
replacement for insulin for the last 100 years   because, as I say, it was only in November in a 
leading medical journal that one of the leading   doctors in the US, when a new treatment, this 
anti-tnf, showed a dramatic effect they wrote   and said it doesn't really matter because we've 
got insulin and most people are fine and that's   still the attitude out there from so many doctors 
and of course some patients who've done absolutely   brilliant job.

They say why do we need something 
else but I think you know that voice of saying   I don't want my kids to get it. I wouldn't want to 
have it. Delaying is good, keep it moving further   out because, remember, delaying means if you delay 
for three years that's three years when your child   can do whatever they like, eat whatever they like 
and they've got perfect sugar. So they're actually   benefiting all that time. It's not putting it 
off and making it worse later. It's actually   giving you advantages. So I'm encouraging you 
to lobby Diabetes UK, as many people as you can   think of. To say this is something  we do want. 
And then Hina has had a hand up for a while so   would you like to ask your question? 
I've just asked you to unmute Hina.

Hi Jamie, hi Colin and I've just typed my 
question. I've had type 1 diabetes for over   26 years now. I am 49. How would I find out 
how many beta cells I've got left, if any,   and also would I be eligible for any immunotherapy 
trials or does the amount of years, the amount of   time that I've had type one diabetes, affect 
this? Yeah so unfortunately the second part   is that the trials are only for people who 
are newly diagnosed at this point in time.   If you wanted to know how many beta 
cells or how much you've got left   the test is called a C Peptide test. 
Somebody asked about that further on,   and the reason it's a C-Peptide test, so when you 
make insulin in your body you make it as one long   string and cut it in half and there's a piece in 
the middle that you throw away and that's called c   peptide and we measure that, because we don't want 
to get muddled up with the insulin you've injected   because that wouldn't make sense, we don't want 
to measure the NovoRapid that you've injected,   we want to know what your body can make 
and that cpep that is not in NovoRapid   or in any of those injected insulin.

only in your own. So that's how we detect it.   It's not done as a standard test but do you 
remember I mentioned earlier on about the clinic   in Edinburgh in fact who tested the cpep that in 
every patient that was on insulin in their clinic   and found that 5% of them still had loads of it 
left? And actually they could come off insulin.   So there's some discussion about whether 
people who are on lower doses of insulin with   very smooth control, should it be done? I 
actually feel it probably should be done   on people who've never had a definite 
diagnosis of type 1 diabetes because   more than five years afterwards it's usually 
at a very low level.

It's still not routine   but you can ask. When I say it's not 
routine, every lab in the country can do it   but it's not what doctors are doing every day 
let's put it that way. And then just a few minutes   left so a couple of your quick takes if you could 
as brief as possible on Dr Faustmann's study on   the possibility of using BCG to treat type one? 
Yeah it's attractive, but really the evidence   is not that strong and I don't think I would 
encourage people to just go for the BCG option.   We've got much better options available.

And what 
about those stem cells and those mice in Canada?   Yeah so stem cells, people are working hard on 
stem cells but you have to, I often say the best   beta cells are your own beta cells and at 
the moment the stem cells do make insulin   and they do switch off when sugar levels are low 
but they have to do it really quickly.

There's no   point in something that just releases insulin 
30 minutes later, 60 minutes later, doesn't   release enough. These are racehorses. They have to 
perform really well to pump out the insulin when   you need it. They also have to not have the risk 
of becoming cancers themselves because sometimes   when you've grown cells there's a risk. So some 
of them are being put in little bags to stop them,   you know, escaping if you like. So definitely keep 
an eye on that and we hope that we'll if you like,   I'd like to think that we can get you to regrow 
your own before we have to use the stem cells but   anything that works go for it, you know, keep an 
eye on these different options.

No it's really   interesting you sort of adding to that because 
I think you know all the you know. the discourse   in the media and all that sort of stuff, a lot 
of people have sort of taken that and run with   it and, you know, when can I get it, when can I 
get it? But actually you know just just a little   more information then it, sort of, changes 
your opinion on it slightly. Someone asking,   Derek actually, to repeat the kilo to 
weight insulin units equation again? Okay   so the simplest one is one unit per kilo. If 
you're on one unit per kilo or more of insulin   then, in fact a lot more than that, you 
probably have type 2 diabetes actually but   or some degree of insulin resistance. So that's 
roughly it. You know if you're 80 kilos, 80 units   that, kind of thing, less than half of that, it 
sounds like you're still making some insulin.   And just a question, sort of, on that same vein 
while we've got a minute to go. Bernadette asks:   a sister with type 2 use of insulin was gradually 
increased until she was 134 units a day.   We thought she must be type one but working with 
a dietitian she lost three and a half stone and   is down to 28 units a day.

Could more people be 
helped in this way? Yeah there is an overlap,   somehow, between type 1 and type 2. Remember type 
2 is is resistance to your insulin and losing   weight does actually help with that. So there are 
some people with type 1 who actually need quite   large amounts of insulin because they've become 
insulin resistant as well, they've become very   overweight as well. Most people with type 1 are 
not overweight. So I think there is, you know,   what Bernadette is highlighting is that it's 
important to get properly diagnosed and the   C-Peptide test as i mentioned is a way of being 
certain or fairly certain which type of diabetes   you have, especially if you've had it for some 
time. it is interesting because, you know, I don't   know anyone that I know with type 1 diabetes has 
actually had a c-peptide test to prove.

No they   might need to nudge the doctor a bit hard actually 
Tell them to give me a call but it does work   And then just literally in the last few seconds 
Frankie has a question. So over to you Frankie. Oh still muted Frankie. They're there now thank you. I just wanted to 
query that comment about the one unit of insulin   per kilo of weight Does that is that per day, 
the amount of insulin you have per day? Per day.  But if you are on I'm actually doing like sort 
of a keto diet which is very low and I have about   20g, 25g maybe 30g of carbohydrate a 

So I'm automatically having less,   so surely that would put me in the bit that might 
make me type 2 or? No not type 2? I'm producing Well I wasn't taking into account, 
you're absolutely right Frankie, I wasn't taking you into account because you're 
right if you reduce your carb intake you're   going to need less insulin and the calculation 
doesn't work quite so well in that situation. So I   was just assuming it was on a normal carbohydrate 
diet. Yeah okay and one question have you done   any of these trials on people like me, touch wood, 
who haven't had any complications with diabetes.   Is there any difference in the trials you've done 
with people that have had complications and those   that haven't any better results? Well again a 
great question.

Let me answer it this way at the   moment we don't know any genes for complications 
so we you might think I mean, for example,   only one-third of people get kidney failure, no 
matter how bad their sugars are. Almost everybody,   if you have bad sugars for many many years, 
you'll get eye problems and if you have good   sugars you don't get eye problems but kidney 
failure doesn't affect everybody. We don't know   why that is. The assumption is maybe it is a gene 
thing or, you know, there's other factors going on   but the other interesting thing is, somebody 
mentioned it I think, that we found that some   people have held onto their insulin for very very 
many years. In fact in the States in in Boston,   they have a thing called the the equivalent of 
the diabetes medal is the Jocelyn Medal. So you   get this medal if you if you've had diabetes for 
50 or 60 years and it seems I don't know why this   is actually true but it seems they said you can 
have this medal if you give us your pancreas after   you die.

It's not quite true but they did a study 
the on people who had many many years of diabetes   over 60 years after they died and the majority 
of them still had a few beta cells left which   was quite remarkable. So the question is whether 
some people, where they don't have complications,   have actually held on for longer than 
others and that may be part of the story.   Well thank you so much for all the questions. Just 
want to wrap it up from this comment from Peter.   Here he says 'hi everyone I wanted to say that 
working in diabetes research it was really nice   and motivational to hear your opinions and stories 
and has certainly emphasized the human element   in the condition.

All the best to all of you and 
I think that really echoes the what we hope to   achieve tonight, you know, us learning a bit 
more and then the people that spend their time   working on diabetes get to know a bit more about 
us and so that that is pretty much it. We are just   over seven o'clock, so I'm about to hand back 
over to Faye who will do a bit of housekeeping   and let you know where you can watch this later 
but I just wanted to say thank you to everyone   tuning in tonight. Thank you again to Colin who 
I'm sure we'll cross paths again Colin and then   there's definitely some other exciting projects 
but if you wanted a bit more about me, I do a   monthly type 1 diabetes podcast. It's called 
the All for One podcast.

you can find it on all   off your podcast providers, Apple Spotify 
and on YouTube too and so do check that out   if you're into that but thank you so much 
everyone for tuning in and taking part and   have a great rest of your evening. Faye back to 
you. Hello. Thank you so much Jamie and Collin..

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