Dear Mr and Mrs Journalist
I am pumping mad and I am writing to let you know diabetes is not cured. It is not even close. There is no artificial pancreas available to most of us diabetics, yet. The recent headlines – “four-year-old Perth boy has become the first patient in the world to be fitted with a new pancreas-like pump which researchers say will improve the lives of diabetics of all ages” – is just another insulin pump.
It is not a pancreas. Not even close.
Apparently “the world’s first commercially-available artificial pancreas which automatically regulates his insulin levels and with the device managing insulin output, diabetics who typically test their blood sugar up to eight times a day will need to do so less frequently”.
Hmm let me see…I have been pumping for 16 years and to my recollections I actually have to check my blood glucose MORE often due to the things that can go wrong with an Insulin Pump leading to no delivery of insulin, followed by high blood glucose, ketones and worse.
I test about 20 or more times a day.
It is not a pancreas.
Do you know what it is like to be a person with diabetes or the parent of a child with diabetes waiting for a cure or the promised land of a closed loop system, a virtual artificial pancreas, that will enable us to stop taking injections and checking our levels up to 20 times a day? Do you know what it is like to check your blood glucose every time you eat, and afterwards and during your sleep to make sure you are not dangerously high or low? To live with the threat of kidney failure, blindness, heart attack, stroke, nerve damage, amputation and more? Do you know what it is like to be promised a cure within 20 years when you are 12, and to be sitting here 37 years later, with no cure in sight?
Do you know the pain of a parent who never sleeps, never rests, and who waits for this artificial pancreas, who reads these headlines with such hope and then realises, it is just another pump.
It is not a pancreas.
I guess it depends on what you see an artificial pancreas as being. I see it as being able to be just like you. To just get on with life. Not to have to pre plan every exercise session like a war mission to make sure all my calculations are correct and then manage them during the entire session like a ballerina on a tightrope. Not to wake up a few times a night to make sure I am not too high or too low. Not to have to change my insulin pump site every 3 days with a very large needle. Not to have to wear a machine. Not to have to worry about the complications of diabetes each and every day. Not to have to be a mathematician when I hate maths.
It is important to understand that your pancreas actually regulates a number of hormones, not just glucagon and insulin, but all the pancreatic hormones you need to keep your blood glucose levels nice and steady. That is what I want.
By calling this an artificial pancreas you just cause many of us with type 1 diabetes or who care for children with Type 1 diabetes to feel a minute of joy followed by a huge sinking feeling. That is not to say we don’t love to see any advances in diabetes care – we welcome more tools in our arsenal and it is all part of having a better quality of life.
However, continual misinformed stories about diabetes cures, artificial pancreases and obesity and sugar being the sole reason for all types of diabetes, just continue to make our lives hell. Diabetes is already misunderstood, undermined, dismissed, degraded and sneered at by so many people, so why do you continue to run these kinds of headlines?
Yes this is a great pump. It is a wonderful tool in the array of options we have to manage our diabetes. But it does not make for an easy life and – it is not a pancreas.
But if you happen to have a spare pancreas feel free to chuck one my way as mine is pretty well stuffed.