D-Blog week: I can...

D-Blog week is the brainchild of Bittersweet Diabetes, and as it turns six years old. it provides another opportunity to hear from blogger voices across the world simultaneously.  I love that two people will see a completely different challenge from the same topic, and today's is sure to be a good 'un.  Today's topic is....I can...

When I was 12 years old I told someone who was asking me about diabetes, "Don't worry about me, there will be a cure in five years." I'd heard it spouted by Diabetes UK and blindly, fell for the line.  At the time very little was known about stem cells or even the causes of type 1, insulin pumps weren't yet routinely used in the UK, and CGM had yet to be invented.  Why I believed this wild claim with so very limited technological support for it ever happening, I will lay firmly at the feet of hope.  I hoped.  My God, I hoped.

 

By 22 that hope was all but lost, as I plunged into months of the worst burnout I have to this day experienced. My DSN, a fantastic woman called Sue Craddock, to whom I owe a great deal as she steered me back on track with careful words and constant support, referred to it as 're-diagnosis', due to the severity with which the reality of diabetes was smacking me in the gut.  "Please take me into hospital, I can't do this." I begged, after testing my blood and discovering I was 22 mmol before even having made it out of my pyjamas.  There was no cure.  It would never happen. It was lies.

 

By 32 another decade on and wiser, older, happily pregnant and still taming the diabetes beast as best I can, things have changed direction yet again.  Now, the technological advances and better understanding of the sheer complexity of diabetes has brought into the diabetes world a new term: Artificial Pancreas (AP).  While the AP isn't a 'cure' at all, if we're honest - it is a new ray of hope. The idea of a closed-loop system which could manage blood sugars on our behalf, and in most situations, is to me a dream come true.  I often ask when is 'good', good enough, because as a community we still hold on hope to stem cell research and islet transplantation, these were the hopes I'd clung to at 12, and those which had let me down by 22.  I still hope they will happen, but I don't let myself dream of days away from this life, quite the way I used to. 

 

But with the AP, tangible evidence is released almost daily in the form of human clinical trials, showing the literal steps which are taking place, bringing us ever closer to one of the most important technological breakthroughs since the discovery of insulin.  And at last, I can see a different future.  I can see that while a 'cure' might not be around the corner, if ever, there will be a time when I can sit with my friends from the diabetes community and enjoy a meal, day out or even just conversation, without our diabetes loudly interrupting our lives.

 

I can.

Dropping in on Parliament

Luckily for me I was dropping in on Parliament a week or so before the whole 'phone-hacking scandal' furore which has gone global so things were a bit quieter when I was up there. But nevertheless I was once again invited by Lesley of INPUT fame, to attend the APPG (All Party Parliamentary Group) for Diabetes which happened to have a lovely meaty topic; the artificial pancreas (AP). I'm afraid this week has been a jam-packed one so this post should have been written a week ago but better late than never, here it is.

I met with Lesley at Waterloo station and as always it took us all of 6 or so seconds before we were both eyeball deep in diabetic rhetoric. Not that I'm complaining of course, seeing as I'm sure by now my work colleagues could calculate their own boluses (doses of fast acting insulin), know not to exercise with blood sugars below 4mmol or above 10mmol and are amazingly well-versed on the finer details of the difference between type 1 and 2 (let's just say 'everything').

I won't go through what an APPG is again, but here is a useful source if you would like to know more about what is going on 'behind the scenes' on the diabetes front, including APPGs. Or I gave a run down of the broad details in my last post about the APPG on Improving Patient Access to Medical Technology.

The actual APPG sadly wasn't nearly as well attended as the newly formed Medical Technology one, but really it was all together a different experience. For starters, the true star of the show was 8 year old Theodore Collins, or 'Theo' as he boldly told us. He is one of the children (52 of them in total, if I remember correctly), currently taking part in one of the very first trials into the AP which is being funded by JDRF (the Juvenile Diabetes Research Foundation). Theo gave a fantastic presentation about the trials he has been involved in and described the benefits he felt the AP would bring him; including having to worry less during sport and not having to rely on his 'friend', Lucozade. But as wonderful as the presentation was, I think my favourite moment with young Theo was right at the very start of the APPG when I suspended my pump trying to ward off a very well-timed and contextually ironic low blood sugar. Lord Pumpington gave off his tell-tale triple beep with which all Medtronic customers are so familiar, telling me the pump was suspended, only for Theo's head to whip around and catch my eye. As we exchanged knowing glances it was clear - he was on a Medtronic too. "I'd know those beeps anywhere, Lady "his eyes somehow told me.

But moving on, we were also given a presentation by Sarah Johnstone of JDRF Policy and Communications fame, who gave a passionate description of how JDRF have so far put over £50 million into research focussing on the artificial pancreas and would continue to strive for access for all type 1s to insulin pumps. This was an issue which Lesley had gone into the session with on the tip of her tongue, because - as she put so well - if you don't qualify for a pump, surely the artificial pancreas will be completely out of reach. A contentious issue it may be, but Lesley is quite right that all the technology in the world is a fine thing, but if there are people out there who don't fit the NICE bill then that technology will sit on the shelf, only accessed by those with the [bad] numbers or those with the cash.

But perhaps the most interesting talk was given by Dr Daniela Elleri, one of the researchers working on the JDRF AP project. In its fourth year, the results speak for themselves and certainly the overnight periods are showing how vastly improved overnight control is when the technology of the pump, along with the technology of CGM (Continuous Glucose Monitoring) is combined with the technology of the AP. It also described how rather than trying to create some super-system, the project is incorporating already commercially available products such as our well-known friends the Animas Pump and the Dexcom sensors. It will be interesting to see how that side of things goes, as it would just seem to me that we could end up heading down the route of having a 'sponsored system' involving different charities backing different products which aren't available unless you are loaded. I can imagine it now, "Buy your Dex-Mas Artificial Pancreas, only £500 per month to fund - sponsored by JDRF"! Hmmm.

Anyway, cynicism put aside it was very interesting to hear how far along (or actually, how early on!) the studies really are. It showed pictures of children wearing pumps, with CGM attached and mini laptops in reach - poised to adjust the basal levels on the pump at any minute, according to what the CGM dictates. It was clear that the AP itself is still in the very early crude stages and isn't at present even comprised of one single 'unit', but instead makes those in the trial look a little more like a teenager at a computer gaming seminar; happy, but lost amongs the wires, controllers and computers. But the fact that it is being tested on people already is still - I feel - a reassuring indicator that this will hit mainstream treatment one day. I have yet to meet someone who has a background knowledge of or involvement with the AP who hasn't seen it as the biggest development in diabetes in the last 50 years.

It's almost as exciting as the time we moved on from pig insulin. I know. Goose-bumps ay! :)

Finally we had some time to ask questions and discuss a few issues. We drew to a close and Lesley and I went for the post-APPG cup of coffee (now a ritual in itself) and to discuss the session.

After much to-ing and fro-ing and putting the world to rights, we bid each other farewell and went our separate ways. And as I boarded my train and sat myself down, I recognised that feeling creeping in; hope.

Keep watching people, this will happen.