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Thank you for the…

insulin, for giving it to me…?

Yesterday was World Diabetes Day (14th November), held during Diabetes Awareness month (November). The reason for the 14th November is because (Dr Fred) Banting was born on the 14th November. (For all those who write raw HTML, be in awe of my dedication to not para-phrase that to save on the HTML mark-up). This year’s theme is “Diabetes and the workplace” because many of us face stigma in the work place, from being in school (honestly, I had some great and shockingly bad experiences at school) and university through to being in work (again both the good and the shockingly bad experiences).

World Diabetes Day is a relatively new thing, established by the World Health Organisation in 1991 to “address the growing threat of diabetes”.

Which is odd because by 1991, the Diabetes Control and Complications Trial was underway which proved that diabetes impacted people did better if their glucose control was closer in range to those who didn’t have type 1 or type 2. Which meant that if your treatment allowed you to optimise control, you could live as long as someone without diabetes.

I term it that way, because it isn’t that simple – I have been given insulin dosages twice in my life – once when I was diagnosed and once when I got my pump – and both times, the expectation was that those starting points would be tuned to suit me.

Some thoughts on that:

  • That english looks strained, because at 4 years old, I was not capable of doing that. My parents had to do that for me. “Never work with children or animals” is twice as impactful when you’re dealing with a child on insulin!
  • Many people have been shocked by that – they felt that I should be tied to a doctor to help me live. They cannot understand that it is down to me.

(And that all ignores the fact my body produces antibodies to the insulin I inject – so after a while, I need a different sort of insulin to keep healthy and that insulin may not be as good as the last one I had, initially, as they all work differently.)

The UK is a bit strange in that respect, thanks to R D Lawrence, a surgeon who was one of the first in the UK to get insulin in 1922. He later went on to found the British Diabetic Association (aka Diabetes UK), but started a diabetes clinic to help people thrive on insulin. He recognised that doctors couldn’t be there 24/7 and help people work out what they needed, so his approach was to teach people how to tune doses themselves. That approach survives to this day. He also helped to get insulin funded for all in the UK, and went on to found the International Diabetes Federation (IDF) to help diabetics across the world.

Lawrence realised really early on that the burden needed to be eased. In 2014, Stanford University published a paper saying that on average a type 1 diabetic makes more than 180 decisions regarding their insulin regime – to me that sounds like an easier day.

And there are days when you cannot get it right because despite continuous (blood) glucose monitoring systems (CGMS), we don’t have all the information on what is going on.

Our bodies are different to each others (no type 1 is the same as any other type 1) but also, physiologically, a type 2 has different levers at play to a type 1 diabetic, even if they are both on insulin. And don’t get me started on type 3cs, who don’t have the safety net of producing their own glucagon.

Yet, we are told we can be seen as lazy if we do not get it perfectly right.

Think about that for a second. Think about the complicated job a diabetic (type 1, 2, or 3c) is doing and then be amazed we ever get it perfectly right, and many of us do. If the insulin and its delivery system (or other medication) is doing what it should do, it is still not a trivial task.

The first insulin pumps were developed in 1960s compared to the 1950s for the heart pacemaker and the 1940s for the kidney dialysis machines. While dialysis machines were widely available in the 1970s, it took another 25 years for insulin pumps to start hitting 2% of those with diabetes. Another twenty years for CGMS to be reliably right often enough to be considered to tweak the insulin basal and bolus, for corrections, as needed. My family does not like me using it and if I do use it, I need to check it doesn’t do something stupid.

While people many thought these early pumps were “automatic”, they needed complex programming to be useful to the users, and that is still the case today. Insulin pumps are not the same as a pacemaker in setting a guiding beat for a heart, or cleaning the blood in the case of a dialysis machine.

Responding to just blood glucose readings (and in our case, these are interpreted results from interstitial fluid) is not enough – in a non-type 1 pancreas, insulin release also impacts how much glucagon is released into the blood stream and the insulin a non-type 1 has only has a half-life of 10 minutes. My subcutaneously absorbed insulin hangs around for 5 hours!

It may not look it, but the average type 1 is doing a lot to keep safe and healthy. Occassionally, those two things may be contradictory. But just because you can’t understand what they are doing and why, please don’t think we’re not doing our best at this moment in time!

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