Today INPUTdiabetes are running a virtual #flashmob to raise funds and to raise awareness of their purpose to support people with diabetes to access appropriate technology. Please donate £5 if you are able by texting “PUMP16 £5” to 70070.
Firstly I want to declare our privilege. We are able to fund my son’s continuous glucose monitor (CGM) at a cost of around £3000 per year. His insulin pump is supplied by the NHS (it is not available through private health insurance): he has a very clear clinical need for this and I was able to educate myself and advocate for it. We had to wait for eight months, but we were eventually successful.
These pieces of technology are life changing beyond belief. Both in living something that looks more like a normal life, and in health outcomes.
His CGM monitors his levels in real time and shares them to his iPhone and the iPhones of up to five carers. It alarms when he is going low or high. Before we had this, he would check his blood sugar at least ten times a day by pricking his finger, drawing blood and applying it to a test strip in a blood glucose monitor. In between times we had no idea what was happening: we were stumbling in the dark without a map through mountainous terrain.
As well as the reassurance and the independence it gives him (he can be away from us while we care for him virtually), it enables much better blood glucose management. For example we can hone the timings of his insulin delivery to match different kinds of foods. The graphs on the left show the consumption of the exactly the same food with the same amount of insulin on two consecutive days. In the first the insulin is delivered 8 minutes before eating and his blood glucose soars to 18 mmol. In the second, we wait 15 minutes and he experiences a hypo.
Without the CGM we would never know about the spike in the first picture, which over time would cause damage.
The CGM isn’t perfect. It is painful to insert, and because he is very lean it sometimes works its way out of the subcutaneous tissue into his muscle and stops working. He needs to calibrate it using finger pricks and he still needs to blood test when low or doing sport. We still wake up in the night to check we don’t have signal loss and to review his levels.
His insulin pump delivers microscopic amounts of insulin throughout the day through a canula which he inserts every three days. We tell it what “basal” insulin he may need for different time blocks, varying this for sport, illness, etc. It also delivers mealtime insulin and correction doses: my son or a carer enters the blood glucose and grams of carbohydrate into the pump handset and confirms the dose. We can adjust the rates for different types of food – a single “bolus” for higher GI foods like bread, an extended one for lower GI/fattier foods like chips.
The pump isn’t an artificial pancreas because we instruct it what to do. The microscopic doses are life changing though. Before, we relied on a long acting insulin, delivered through two injections a day. This had an unpredictable peak and trough action. The smallest unit we could use for the four mealtime injections was 0.5. At one point my son only needed 1 unit for 50 grams of carbohydrate, so could only eat in increments of 25 grams (about 100g of chips). At this stage we could only safely correct blood sugars over 16 mmol, because of the size of the units compared to his insulin sensitivity. I described this as trying to do brain surgery with a pick axe. On the pump we can in theory correct at any number above 6 mmol. And, importantly for me, I can do it when he is sleeping rather than waking him to self-inject.
My son was limited to his tummy and outer thighs because he is lean. Trying to find
enough sites for his six plus daily injections was problematic. Inserting a cannula every three days alleviates this a little. This picture shows one month’s worth of injections in a small child. The child in the picture is able to use their arms as a site which we can’t.
With technology we still need to work very hard, weighing everything he eats, trying to second guess the effect of exercise, illness, excitement, stress and the weather (no, seriously). But now we have the data to enable us to do this more accurately and the tools to make changes.
I want more people to have access to this, which is why I am supporting INPUTdiabetes. The UK is behind in pump and CGM use. Around 40% of Americans with T1D use pumps, in the UK it is around 10%. It is less than 20% in children, despite the NICE guidelines allowing for use in under 12s. Some of this may be due to patient choice, but delays in access or clinics who don’t “do” pumps are a more significant factor.
CGM use is very rare and it is difficult to make the case in the UK. For example my nocturnally hypo-unaware child who plays 7 hours of competitive sport a week would need to lose all his hypoawareness and compete at regional sporting level to qualify. In Australia a budget has been set aside to allow all children with T1D to have access to a CGM (unfortunately not adults) and in the US, insurers have been required to fund CGMs.
Ironically much of the technology saves money. As well as reducing the not inconsiderable cost of test strips, CGM and pump therapy have been proven to reduce the number of hospital admissions for short term complications (severe hypoglycaemia and diabetic ketoacidosis) as well as reducing the long term complications which are the financial burden that we hear will crumble the NHS.
There are financial, psychological, moral and health reasons to improve access to technology for people with Type 1 Diabetes. Technology makes sense. It should not be the preserve of people with privilege.