The Cure

[Offathedykeman]

T1D 57 years. Getting absolutely sick to death of it. Approaching 100 years on the discovery of insulin. Yet we're still having to inject insulin, still having to prick fingers for blood tests. My goodness where has the research been and ongoing to find a cure. If its our auto immune system destroying whatever it destroys? Why hasn't someone come up with sorting the auto immune system out? I'd swear but its a b****y shambles.
Neil

 

[Cbmod]

As a type one diabetic and immunology researcher, trust me it is not that simple.

 

[Cbmod]

Essentially the immune system is incredibly complex and we still don't understand everything about it. There is an extremely fine balance between your immune system being active enough to fight off infection, but not so active that it causes allergy and autoimmune diseases like type one.

There are also differences between animal models that can be used in the lab and our actual immune systems. For instance, the immune system of a mouse is similar, however there are subtle changes that mean what works in mice doesn't always work in humans. The 2006 drugs trial is an example of what can go wrong (the "Elephant man trial"). Anyone who can find a way to selectively suppress only a small part of the immune system will likely win a Nobel prize, as it has implications in pretty much every autoimmune disease and transplant. So trust me it is being worked upon from multiple angles!

There are more reasons it is complicated, but I don't directly work on type 1 diabetes. Happy to answer any questions if wanted though.

 

[EllieM]

I've been T1 for 48 years, and have been promised "the cure" in 5 or 10 or 20 years for most of that time. Luckily I've never held out much hope for it happening in my lifetime, though if either of my children were T1 I would have hopes for it in their lifetimes (barring the apocalypse in which case T1s will be some of the first to go).

But, the treatment for T1 has radically improved over the years, and that I am grateful for. In the early 80s I got my first glucometer, which was lifechanging. I had the same experience when I started using the freestyle libre, though that experience is bitter sweet since my body no longer tolerates the libre and I'm back to stabbing my fingers. (However, I'm hopeful that the cgm technology will work for me eventually.)

And I have friends with autoimmune diseases that make me so glad to "just" have T1 (I know there are plenty of you T1s out there with multiple autoimmune conditions, and you have my deep sympathy). Though my blood sugar often seems to have a mind of its own, at least I can attempt to control it by diet and insulin and I can postpone the onset of complications for quite a while yet.... I may be "sick" but I don't feel "sick" as long as I'm careful with my insulin, and I do feel like I have control of my T1 rather than the other way round.

 

[NewTD2]

It’s truly anazing that you have kept the complications at bay for 48 years.

Congratulations!!!

 

[kitedoc]

Essentially the immune system is incredibly complex and we still don't understand everything about it. There is an extremely fine balance between your immune system being active enough to fight off infection, but not so active that it causes allergy and autoimmune diseases like type one.

There are also differences between animal models that can be used in the lab and our actual immune systems. For instance, the immune system of a mouse is similar, however there are subtle changes that mean what works in mice doesn't always work in humans. The 2006 drugs trial is an example of what can go wrong (the "Elephant man trial"). Anyone who can find a way to selectively suppress only a small part of the immune system will likely win a Nobel prize, as it has implications in pretty much every autoimmune disease and transplant. So trust me it is being worked upon from multiple angles!

There are more reasons it is complicated, but I don't directly work on type 1 diabetes. Happy to answer any questions if wanted though.

Thank you @Cbmod, I believe there is an ongoing trial at James Cook University, Queensland where a group of coeliacs have been subjected to a mild infection of hookworm in the hope that this will activate the under-active arm of their immune system and dampen down the over-active arm thought to be producing the antibodies against TTG etc. Final trial reports due in October this year but ongoing reports are promising. Could this model apply to managing antibodies involved in causing T1D ?

 

[Mbaker]

I am with the OP on this one. The effort in context to make the atom bomb during war time shows what human ingenuity can do. By now I would have expected at the very least completely non-invasive, ultra, ultra small management units which calibrate perfectly for the individual. CGM's are a force for good, but this I feel could be even better. IT and Engineering are so advanced they are ripe for a solution right now.

I think small establishments are working hard, however the same effort that has gone Higgs Boson, should go into Type 1 reversal.

 

[DavidGrahamJones]

Why hasn't someone come up with sorting the auto immune system out? I'd swear but its a b****y shambles.

Very simple, where does the money come from to do all this research? How much would any treatment cost to allow companies doing the research to recoup their investment?

Today, the average cost of bringing a drug to market is £1.2 billion, a rise of 70% in 7 years.

That's all before the technical issues discussed by Cbmod.

 

[DCUKMod]

I am with the OP on this one. The effort in context to make the atom bomb during war time shows what human ingenuity can do. By now I would have expected at the very least completely non-invasive, ultra, ultra small management units which calibrate perfectly for the individual. CGM's are a force for good, but this I feel could be even better. IT and Engineering are so advanced they are ripe for a solution right now.

I think small establishments are working hard, however the same effort that has gone Higgs Boson, should go into Type 1 reversal.

If cures were easy to come by, I think we'd have been free of the common cold for quite some years now.

I apologise if that sounds a bit sarcastic, but as someone who has spent quite a bit of time in places like the NIHR, I can assure you there is a lot of work ongoing into T1 by passionately caring individuals.

 

[SamJB]

I write software for clinical research; not infection, but oncology & respiratory mostly, as well as some diabetes research. Finding a cure, as in a biological one that reverses the immune attack on the pancreas, is incredibly hard and I reckon is possibly decades away. Add to the complexity, it takes 10 years and $1bn to bring a drug to market, as mentioned already.

The short term hope, and one that I am getting frustrated with, is the Artificial Pancreas. It seems to be taking ages; I would've expected something on the market by now. It's as good as a cure for me, as it takes away the management of diabetes.

Other "cures", are Smart Insulin that becomes active once it encounters blood glucose and stem cells; both of which are far off, but closer than a cure of the immune system, in my opinion.

But, yeah, I've had enough of diabetes now too and I've "only" had it for 15 years.

 

[Cbmod]

Thank you @Cbmod, I believe there is an ongoing trial at James Cook University, Queensland where a group of coeliacs have been subjected to a mild infection of hookworm in the hope that this will activate the under-active arm of their immune system and dampen down the over-active arm thought to be producing the antibodies against TTG etc. Final trial reports due in October this year but ongoing reports are promising. Could this model apply to managing antibodies involved in causing T1D ?

Interesting question. The answer essentially is that it is possible. This trial is probably in coeliac because it is less complicated- gluten causes immune cells to release antibodies that damage the epithelial cells. You can monitor this well. However with T1 there are so many different factors, until very recently we didn't know the structure we respond to etc. T1 is also more complicated to treat- we would need to regenerate or transplant beta islet cells, and then use this method to stop the response against them.

Using hookworm is difficult because that infection in itself is unpleasant and immune suppression is not the only consequence. Although on balance most would argue worth it. What many people are working to do is to isolate what chemical released from hook worm and the like causes immune suppression and use that on its own.

 

[Cbmod]

I am with the OP on this one. The effort in context to make the atom bomb during war time shows what human ingenuity can do. By now I would have expected at the very least completely non-invasive, ultra, ultra small management units which calibrate perfectly for the individual. CGM's are a force for good, but this I feel could be even better. IT and Engineering are so advanced they are ripe for a solution right now.

I think small establishments are working hard, however the same effort that has gone Higgs Boson, should go into Type 1 reversal.

Regarding your above examples, these are huge projects with a sole focus. Funding for research into health conditions is split. For instance you simply could not fund to that kind of scale T1D, Alzheimer's, Cancer, Crohn's etc etc. That kind of level of Government funding for one disease over others would be ethically dubious.

 

[porl69]

T1D 57 years. Getting absolutely sick to death of it. Approaching 100 years on the discovery of insulin. Yet we're still having to inject insulin, still having to prick fingers for blood tests. My goodness where has the research been and ongoing to find a cure. If its our auto immune system destroying whatever it destroys? Why hasn't someone come up with sorting the auto immune system out? I'd swear but its a b****y shambles.
Neil

Hi and welcome to the forum
I have been diabetic since I was 6, 46 years! Diabetes management has come on leaps and bounds over my 46 years. We can remember the glass and metal syringes with the needles the size of darning needles which we changed maybe once a week IF we were lucky. Having to test our urine in a test tube with a fizzy/boiling tablet. I now can hardly see the 4mm needles they are so fine and blood testing kits and CGMs are all a massive step forward along with insulin pumps. The 670G is pretty much a closed loop system and can be set on Auto to mimic the pancreas. Myself, and I am sorry to say, I cannot see there every being a cure, the big pharma companies are making billions from us every year. I do hope I am wrong BUT profit will always come before a cure I am sorry to say. Living with type will will become a lot easier in the not to distant future.
Sorry to be so negative

 

[SamJB]

Hi and welcome to the forum
I have been diabetic since I was 6, 46 years! Diabetes management has come on leaps and bounds over my 46 years. We can remember the glass and metal syringes with the needles the size of darning needles which we changed maybe once a week IF we were lucky. Having to test our urine in a test tube with a fizzy/boiling tablet. I now can hardly see the 4mm needles they are so fine and blood testing kits and CGMs are all a massive step forward along with insulin pumps. The 670G is pretty much a closed loop system and can be set on Auto to mimic the pancreas. Myself, and I am sorry to say, I cannot see there every being a cure, the big pharma companies are making billions from us every year. I do hope I am wrong BUT profit will always come before a cure I am sorry to say. Living with type will will become a lot easier in the not to distant future.
Sorry to be so negative

Wow, this 670G does looke like an Artificial Pancreas! Is it available in the UK?

 

[JohnEGreen]

670G may be available in Europe soon.

https://www.diabetes.co.uk/news/201...-to-be-made-available-in-europe-95744426.html

 

[Mbaker]

Regarding your above examples, these are huge projects with a sole focus. Funding for research into health conditions is split. For instance you simply could not fund to that kind of scale T1D, Alzheimer's, Cancer, Crohn's etc etc. That kind of level of Government funding for one disease over others would be ethically dubious.

I am suggesting an international joined up approach. I believe "we" have the right mix of ingredients. Being in IT I know we have the compute power (many years ago exponential amounts (Big Blue for example); and I feel the nano engineering capabilities are there as well as the potential intelligence - we just need the politics, will and bodies to come together. I take your point on the pecking order issue.

 

[porl69]

Wow, this 670G does looke like an Artificial Pancreas! Is it available in the UK?

I am awaiting to be put on a pump. I believe the 670G is coming to the UK in the Autumn??? possibly. When I ,eventually, get to see the pump consultant I will be on the case for the 670G

 

[Mbaker]

If cures were easy to come by, I think we'd have been free of the common cold for quite some years now.

I apologise if that sounds a bit sarcastic, but as someone who has spent quite a bit of time in places like the NIHR, I can assure you there is a lot of work ongoing into T1 by passionately caring individuals.

I think I covered the point about individuals, and I know individuals are working on things; I would like a team approach. I am frustrated as a technologist, as I know we have enough advancements in this area, which is one of the key pillars.

A scenario: All of the world nations are invited to contribute to a Type 1 (and or Type 2). A panel of "experts" is put together will the sole mission of improving current CGM's and finding a cure. I feel this would yield results far better than experts in their own bubble, a bit like a single country trying to resolve climate change. I know my view is wishful thinking, that humans would pull together without a profit motive, however "we" are so advanced in the right circumstances great things could be achieved.

 

[DCUKMod]

I write software for clinical research; not infection, but oncology & respiratory mostly, as well as some diabetes research. Finding a cure, as in a biological one that reverses the immune attack on the pancreas, is incredibly hard and I reckon is possibly decades away. Add to the complexity, it takes 10 years and $1bn to bring a drug to market, as mentioned already.

The short term hope, and one that I am getting frustrated with, is the Artificial Pancreas. It seems to be taking ages; I would've expected something on the market by now. It's as good as a cure for me, as it takes away the management of diabetes.

Other "cures", are Smart Insulin that becomes active once it encounters blood glucose and stem cells; both of which are far off, but closer than a cure of the immune system, in my opinion.

But, yeah, I've had enough of diabetes now too and I've "only" had it for 15 years.

SamJB - Are you in touch with @tim2000s ? He's very into closed looping at the moment, and has done some wonderful things.

 

[SamJB]

SamJB - Are you in touch with @tim2000s ? He's very into closed looping at the moment, and has done some wonderful things.

Nope, due to my hiatus, I've been out of the loop (excuse the terrible pun!) on things on here recently. I'd certainly like to hear what @tim2000s has been up to, if it's software related, I might be able to help!