Continuous Glucose Monitors

A CGM, and a Second Option In My Diabetes Drawer

4 Comments

Two weeks ago, I attended an information evening on insulin pumps. And to a lesser degree, Continuous Glucose Monitoring. For the former, I am still deliberating. I am still plagued by two lines of thought. Will an insulin pump actually help me, and give me more ease over my diabetes management? Or will it just be the same old diabetes management but with a fancy device? And will the learning curve, and frustrations be too much to handle? I don’t know. That’s a question for my diabetes educator next week.

For the latter, however, I do have a clearer train of thought. I’ve been writing about the issue here a lot lately, and advocating for more affordable access here in Australia. And I have come to (somewhat of) a conclusion, based on my own diabetes, and my own individual circumstances.

I do not use a Continuous Glucose Monitor. For me personally, it’s estimated cost of $5,000 per year is a very large chunk of my annual salary at a time where I am looking towards my future. I would rarely spend that sort of money on myself, and I can think of a thousand other things that I would rather put that money towards.

I don’t think I could handle having access to results 24/7. I actually forced myself to stop testing so often earlier this year, because it was doing more harm to me than good. There was a time where I couldn’t handle seeing imperfect numbers. I was prematurely correcting post meal highs, only to end up hypo two hours later. Glucose numbers are always going to naturally rise after a meal. But they are going to naturally come back down as well. Sometimes I think that mentally, it’s better not to see those numbers inbetween. Out of sight, out of mind, right?

Nor do I like the idea of potentially having two devices attached to me, at a time where I am currently considering an insulin pump. I like to keep my pockets as light as possible at all times. I cannot stand jingling pockets full of crap weighing me down while I’m running around at work! Thinking about that device being attached to me all the time feels like a physical reminder of my condition. And at the moment, that feels a little demoralising to me.

Bear in mind that I have never lacked the motivation to check my blood glucose levels. I am quite comfortable checking my levels. I will sometimes test as often as 10 times a day, because it gives me a certain level of comfort. It gives me a sense of certainty, control and grounding over my condition. Without my meter I would be completely lost.

I realise that I have lived the bulk of my life with diabetes at a mature age. An age where I relish having independent control, and management over my condition. I am also still a relatively “young” diabetic, who is yet to go through a serious burnout. Perhaps my attitude towards Continuous Glucose Monitoring will change with time.

That being said, if I did have easier, cheaper access to a Continuous Glucose Monitoring device tomorrow, I would certainly take it. I would trial it. It would certainly be handy to have on me when I go on holiday, when I am frustrated, and when I just want to have a break from diabetes. It would be a useful learning tool to have, and a shield against the unpredicatability of diabetes and glucose levels.

And I am certain that every other Australian would accept glucose monitoring technology tomorrow if it were more affordable, and accessible. Either as a regular management tool, or as a second option. If you would like to see Continuous Glucose Monitoring technology subsidised by the government, I urge you (again) to write to your local Member of Parliament, and the Minister for Health, Susan Ley.

I dream of one day seeing my own Continuous Glucose Monitoring device when I open my diabetes drawer. Beside my hoard of test strips, needles and insulin pens. Sitting there patiently, as a nice second option for me to take advantage of whenever I feel like doing so.

The Case for Subsidising CGM in Australia

4 Comments

It’s good to see the issue of Continuous Glucose Monitoring getting more attention in the news at the moment here in Australia.

The Danii Meads Barlow Foundation have been doing a fantastic job at the moment of getting the word out into the media. A couple of weeks ago, this foundation provided Catherine Rowley with the support to address our leaders on the Q and A program regarding CGM support from the Australian government. You can read about that here. Their advocacy work also resulted in a report on Today Tonight yesterday, raising awareness of the founding couple’s daughter who passed away from unnoticed hypoglycemia during the night. The foundation are currently advocating for the government to provide $5,000 per year towards the cost of maintaining Continuous Glucose Monitoring device consumables.

Rebecca Johnson, who lives with type 1 and manages the Telethon Type 1 Diabetes Family Centre here in Western Australia, also wrote a pretty powerful piece in The West Australian newspaper yesterday. She hits the nail on the head perfectly.

“Managing type 1 diabetes comes at a cost. It costs me dignity, like the time I was spoon fed honey on the floor at a party because my blood glucose was so low I couldn’t see or talk. It costs me time: countless hours calculating insulin doses, testing my blood, counting carbohydrates. It costs me opportunities, at work and in life. It also costs a lot of money.

To monitor my blood glucose around the clock I use a thousand dollar machine that runs on a battery that costs $500 to replace. The sensors which I insert beneath my skin to read my glucose level cost $100 and must be replaced every six days.

The government does not fund continuous glucose monitors. It comes out of my pocket and it costs me, a young person with diabetes, more than $5000 a year to run. I fund it because I want to live a healthy, complication-free life, away from emergency admission and hospital stays, dialysis, eye laser treatments, chronic wound care and amputation surgery. Continuous glucose monitoring can prevent hospital admissions and expensive long term medical care for people with type 1.

In a time of extraordinary healthcare costs attached to diabetes care, our Federal Government needs to recognise that by supporting people with type 1 to take the very best care of themselves, the burden on the health system will be significantly reduced.

This device can save my life. My monitor is set up to sound a loud alarm when my blood glucose level is dropping. It wakes me in the night when it identifies a dangerous downward trend before my glucose is so low I can’t move or help myself.

To me, continuous glucose monitoring technology is the single most important innovation in diabetes management since the invention of synthetic insulin. It gives real time glucose information to people with diabetes to identify trends in their levels and fine tune their diabetes control. This essential biofeedback is something that every person with type 1 diabetes needs to better understand and manage their condition.

It is also the only technology that can help prevent “dead in bed” syndrome, where people go to bed with normal glucose levels and are found dead in the morning from massive, undetected overnight hypoglycemia.

Continuous Glucose monitoring is streets ahead of pricking your fingers up to 10 times a day to test your blood for glucose. Testing like this is relatively easy in daylight hours, but often many hours are left unmonitored overnight. Unmonitored glucose levels are fraught with danger. Glucose levels that are too high damage every organ and system in the body, increading the risk of kidney failure, heart disease or blindness. And if glucose levels drop too low, the sleeping person can seize, fall into a coma, and die.

A hospital admission for a single severe hypoglycaemic event costs the public system over $5,000. Treatment of diabetes related complications can cost more than $11,000 a year per patient.

It takes a visionary government to invest in new technology, and the case for funding continuous glucose monitoring is compelling. It will save the public system money, time and resources immediately and in the future. It will also give me and other sufferers a daily blessing. We will wake up in the morning.”

I am certain that every person with diabetes would accept CGM technology if it were more accessible here in Australia. If you would like to see CGM technology subsidised by the Australian government, then I urge you to write to your local Member of Parliament, and to the Minister for Health Susan Ley (click for contact details).

The Invisibility of Type 1 Diabetes

2 Comments

Yesterday I shared Catherine’s story. One of the many type 1 diabetes parents dealing with, well, everything that you would expect (and more) from a young child with type 1 diabetes. A Continuous Glucose Monitor would be a massive relief for Catherine and her daughter, and would change their lives.

Seeing Catherine’s story on television, and the discussions that followed at home simply reminded me of just how invisible diabetes is. Not enough people are aware of what people with type 1 diabetes go through in order to manage their condition. People simply don’t see a lot of the aspects that we deal with in order to manage this disease. And our media certainly don’t give it a lot of attention, either.

Our media here in Australia spend a lot of time focussing on those “lifestyle” factors that may cause type 2 diabetes, in some cases. Which is fine. These are all serious issues, which can be prevented. I’m all for that. However, it just seems that I always hear about how we need to lose weight, how we need to eat less sugar, how we need to eat more fruit and veg, and how we need to exercise more. How this is an epidemic that will destroy the world by the year 2030. Okay, maybe I’m exaggerating there. But Mum could even recall being asked if I was overweight after telling an aquaintance about my diabetes a few years ago. It just goes to show how little awareness there is of type 1 diabetes out there.

I’m not blaming anyone for this. I’m simply stating a fact. There’s little awareness of type 1 diabetes out there because it’s simply an invisible disease. It’s easy to spot things like excess weight, unhealthy food choices and lifestyles that are lacking physical activity in the world. It’s not easy, however, to spot things like glucose monitoring, carb counting and insulin injections. It’s not easy to spot sleep deprivation, frustration and stress from dealing with, and worrying about type 1 diabetes. It’s not easy to spot parents who have had to take time away from work in order to properly deal with a type 1 diabetes diagnosis. It’s not easy to spot parents concerned about how their child, and school, will cope with type 1 diabetes.

I say that we do a pretty good job of keeping it together when we’re out there among the rest of the world. We’re pretty strong people, you know.

And that’s where Catherine’s story comes in. She did a fantastic job of advocating for all of us type 1s, and helping to shed some light on the issues that we have to deal with behind closed doors.

I can only hope that this media attention will help deliver technology that will change the lives of many young families in Australia dealing with type 1 diabetes, and help make this disease a little less invisible.

I almost forgot my #DOCtober photo yesterday, so my last minute photo idea at 9pm was to change my Lancet!

https://instagram.com/p/8xzm_Mg_en/

 

Diabetes Pressures Without CGM Subsidies

7 Comments

I was rather touched by an awesome type 1 Mum who spoke out about Continuous Glucose Monitors here in Australia on last night’s episode of Q and A.

Aussie Type 1 Mum Catherine asked Ken Wyatt, our Minister for Health, when Continuous Glucose Monitors would be subsidised by the Australian Government and hence bringing us into line with other countries.

She noted that the cost of a Continuous Glucose Monitor here in Australia was $5,000 per year, which was considerably less than the costs of looking after people with diabetes who are hospitalised. During a one week trial last year, a Continuous Glucose Monitor saved Catherine’s daughter in three instances where her blood glucose levels were dangerously low and could have resulted in hospitalisation.

Catherine told us that she checked her daughter’s blood glucose levels every two hours. She was often sleep deprived from managing her daughter’s type 1 diabetes throughout the night. Diabetes kept her awake for eight hours last week, in an instance where she was unable to get her daughter’s blood glucose to rise above 4mmol/L.

As a single parent, Catherine feels the financial pressures of type 1 diabetes. She cannot afford to work part time, or to stay at home with her daughter. A Continuous Glucose Monitor would allow Catherine to keep an eye on her daughter’s blood sugar levels remotely, and reduce a lot of the stress in her life.

As for the reponse given by the politician on the program, it was the typical response given by a politician. Wishy washy xtatements implying concern and high regard for the issue, but nothing committal.

I can relate to wanting to keep a close eye on blood glucose levels. I will test up to 10 times on most days, just to make sure I’m not having too many nasty hypos or being too high. There are nights where I so badly want to test in the middle of the night to make sure I don’t end up too high. And I often hate myself the next morning for succumbing to my exhaustion and not doing so when I see a high blood glucose level. And I don’t earn a lot of money, either. At the moment, a Continuous Glucose Monitor is a luxury that I simply cannot afford. When I’m paying the bill at the Chemist, I often think of all the other things that I would rather have spent that money on.

Catherine, you’re not alone. Thankyou for sharing your story, and for bringing this issue in front of our leaders, and the Australian public. Well done, type 1 Mum.