The unfair cost of Type 1 diabetes - Emma’s Struggle

Hi,

I’m Emma, I’m 32 & I have had Type 1 diabetes since I was 2. The last 5-6 years I have some how managed to run dexcom CGM, often borrowing money, having multiple side hussles, committing way to much time to working the list goes on. My diabetes has gained much better control over this time, I understand it more, it takes a lot of guess work out of crazy equations and ultimately I feel better health wise & safer than I ever have. But I am So So tired of the ongoing costs, the worry, financial stress and fatigue which is a catch 22 with diabetes & blood sugar levels.

What does Dexcom CGM do?

Standard funded blood glucose meters in NZ tell you what your level is if & when you test. (Recommended 4+ times a day) in reality it’s more like 10-20 for most Type 1s. It doesn’t tell you where your levels have been or where it’s off to, doesn’t alarm if yr dropping or rising, doesn’t make you feel like yr a robot. My standard meter doesn’t even like to work in the cold…. Amazing in winter!!

Making a lot of your insulin doses complete guess work.

The CGM tracks your levels 24/7, updating every 5 mins, the equivalent of 288 tests per day. I know what my levels are up to all day, where they are tracking and where they have been. It also has new amazing technology that will adjust your “Background insulin” if it detects a low coming up in the next 30 mins. People need insulin even if they aren’t eating carbohydrates, this is called long acting or Basal insulin, which the system switches off if required. Amazing safety feature, saved me so many times while I’ve slept. Soon it will have a similar feature for high blood glucose. Making it a pretty nifty artificial pancreas.

Almost 3 years ago now I flipped my car into a paddock going 80ks in the wet causing my chaotic life I’d been somewhat functioning with into hitting a big massive PAUSE button. I somehow walked away with minimal physical injuries but I had a bung shoulder, concussion & then PTSD. Prior to my accident I had 4 jobs plus I decorated cakes for friends & family and sold Tupperware:/.

I do not know how I functioned but I usually comfortably payed for my CGM products. Apparently I was running on a insane level of adrenaline.

I now have 1 job. Like any sane person should. I attempt a side hustle or two for extra coin but not often successfully. I received ACC payments while on a return to work program to my main job but now that I’m back ‘full time’ payments have stopped long ago. Even thou I’ve gone from 55-70 hours to 40-45. I now owe the tax man a lot of money, even though my codes were usually right.

Without going back to work some insane hours I’ve run out of ideas.

The cheapest way to run CGM is by signing up to a subscription plan which equates to $379.50 per month $4554 a year. This saves $1800 to buying one offs here and there. I would like to sign up to this plan but it’s a lot to commit every single month.

In the past 5 years the cost of dexcom has dropped significantly but it’s still not got any form of funding & its a lot to pay every single month. In previous years I’ve managed to get equipment from other countries, (not sure how legally on their part) roll a bank loan etc but those means have dried up. The most price efficient way is to sign up & commit to the plan. FML.

I have normal bills like any human, debt from the on going cost of above. I have other health issues, diagnosed Ceoliac since 7, IBS recently. To name a few. Have ya seen the price of ‘Dietary foods’? I despise supermarket shopping! GP bills, Pharmacy bills, Specialist bills. I loathe appts! Yea sometimes I blow off steam and buy things I shouldn’t prioritise but my week to week bank statement is mildly depressing. Thank god for kiwi saver, maybe I’ll get a house when I’m 50!

What I’m asking for?

Financial assistance to run my CGM for the next wee while, so I can focus on something that will hopefully at least cover most of the cost long term. Yes a side hustle but hopefully one that won’t consume me.

$4554 a year

$379.50 a month

$87.57 a week

$12.52 a day

Doesn’t sound like a lot but it’s continuous just like Type 1 diabetes. It’s dropped significantly so hopefully there’s hope for the future affordability.

Much love Em xx

Don’t judge my spelling & grammar :/