Jess: We go without a lot due to the demanding expense of my CGM

I am 30 years old and was diagnosed with t1d when I was 8 (November 2000). I remember my parents bursting into tears when the doctors told them that my immune system had destroyed my beta cells, and that I would live a life filled with finger pricking 6+ times per day and injecting insulin 4+ times per day to stay alive. I remember hearing words about "complications" and mentions of "decreased life expectancy". I also remember one doctor saying there will be a cure in 5 years. That was 22 years ago.

While there is still no cure, the way in which technological advancements have revolutionized diabetes management and control is absolutely incredible. The one problem... it costs A LOT of money, too much for most Kiwis.

Living with t1d is extremely hard. It is relentless, stressful, and at times incredibly unpredictable. I compare living with t1d to walking on a tight rope. There are no rest days or breaks, and the huge psychological burden it places upon an individual is heart breaking. Diabetes distress is a very real thing. Someone with t1d has to make almost 200 extra decisions every day in relation to their condition.

Imagine waking up with an empty backpack. You prick your finger, it hurts. Add a rock to the backpack. The result comes back as 16.8mmol/L… too high! Add another rock. You then need to do a mathematical equation to calculate how much of a correction dose to do. Another rock. You do another calculation to determine how much insulin you need for your breakfast. Another rock. You then give your injection, it hurts...another rock. This is already 5 rocks within the first 10 minutes of the day. You can imagine how heavy that load must get over the course of a day. And then, you must wake up and do it all over again, for the rest of your life.

I have forgotten the number of severe hypoglycaemic events I have had. I've regained consciousness to paramedics standing over me many times. I broke my fiancés nose when I punched him during one of my hypoglycaemic events.

I have not had an event like that for 5 years now all thanks to my Dexcom. This device alerts me to BGLs which are dropping too high or low BEFORE they happen, which means I am able to correct them and keep my BGLs within target range. It even talks to my insulin pump and tells it to give more or less background insulin based on my BGL. The strain it has taken off me and my family (fiancé and 2 sons) is immense, yet the financial burden is huge. We are a middle-income family yet go without a lot due to the demanding expense of my CGM.

My HbA1c is the best it has ever been (43mmol/mol). My health is great and I have no diabetes related complications (touch wood). I am able to be there for my children. I am able to have freedom in the activities I do, and the foods that I eat. I am able to go to the gym 4x per week WITHOUT having a hypo. I am able to sleep through the night and only wake up to my crying baby instead of having to wake up to prick my finger at 3am. I am able to have the mental capacity to continue on with my postgraduate studies. I am able to work full time as a registered nurse who is being upskilled into a diabetes CNS so I may support others and equip them with the knowledge they need to tackle the beast which is t1d.

I am able to do SO many things, things which shouldn't even be a question of "can I even do that?" due to my CGM.

Everyone living with t1d should be able to do these types of things. We should be able to control our type 1 diabetes instead of it controlling us. I know whole heartedly that CGM for all will make that possible (will also save the healthcare system a boatload of money in the long run).

It’s funded in Australia and the UK.... come on PHARMAC give NZ access too, I beg you!

Thank you for reading my story.