Diabetes Advocacy

The Case for Subsidising CGM in Australia

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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).

Logging My First Big Blue Test!

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I’ve never truly understood the big obsession with Fitbits and step counts and runkeepers. That is, until I opened the Health app on my iPhone about a month ago. That nifty little app has been logging my step count all year long without me even knowing. And looking at the stats, they’re a little embarassing. I can see a huge peak during the month of July, when I was galavanting around Canberra and Sydney having the time of my life (which seems like a lifetime ago, mind you). Then there are some massive slumps on either side while I’ve been back at boring old home.

I’ve been working on getting my step count up over the last month, going for walks most afternoons. Even factoring in the steps that my iPhone doesn’t log while I’m at work (and I would log a lot during my work day), it’s still incredibly hard to reach 10,000 a day!

Which brings me to the Big Blue Test. The Big Blue Test is a program of the Diabetes Hands Foundation, the guys who are also behind the wonderful TuDiabetes community. The Big Blue Test helps to raise money for diabetes charities that provide life saving supplies, services and education to people with diabetes in need.

It’s as simple as testing your blood glucose.

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Getting active for at least 14 minutes of physical activity. If you hate exercise as much as I do, physical activity can be absolutely anything. Also coincidentally wearing blue for Blue Fridays (and being a good diabetic by wearing socks on my feet, of course).

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Testing your blood glucose level again. Hopefully you see a nice drop in your BGLs after exercising like I did in this instance!

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And then logging the details at www.bigbluetest.org or by downloading the Big Blue Test iPhone app. It will literally take a minute of your time, for a series of activities that you probably do already.

Each Big Blue Test that you log between now and November 30 will trigger a $1 donation to diabetes charities. There have been 101,500 Big Blue Tests completed since 2010, this year we are hoping to reach 110,000.

So get testing this weekend.

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The Invisibility of Type 1 Diabetes

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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!

 

Diabetes Pressures Without CGM Subsidies

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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.

Why Are Our Obesity Campaigns So “Nanny” Like?

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Yesterday, October 11, was World Obesity Day (and if you’re in the US or the UK, then technically it’s still World Obesity Day).

Obesity is an epidemic. The World Health Organisation estimated that the prevalance of obesity worldwide increased from 11.5% of adults in 2010 to 13% of adults in 2014.

Obesity can lead to type 2 diabetes in some, but not all cases. Essentially, people could have to deal with some of the things that I write about in this blog as a consequence of being obese.

And on World Obesity Day, we are being asked to call on governments to act in order to meet our target of halting obesity to 2010 levels by the year 2025.

Here in Australia, we have had many campaigns over the years to tackle obesity. Most recently, we’ve had the Live Lighter campaign. You know, the one with that lovely visual of “the toxic fat inside your body that grows around your vital organs.”

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Behind that confronting visual that you see on the TV, there’s also a bright and well meaning website full of advice to encourage us to live healthier lifestyles.

We’ve also had the Rethink Sugary Drink campaign, which literally presents to us the amount of sugar in soft drinks, juices, energy drinks and so on. Which isn’t a bad idea either.

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One honest flaw that I find in our campaigns here in Australia is the fact that they come across too “nanny” like. In all honesty, watching those ads seemingly telling me “not to have a single sip of soft drink” makes me more inclined to do it for the sake of rebellion. Try telling your kid that he can’t have that toy he picked up off of the shelf. He’ll probably be more likely to chuck a tentrum in the checkout queue than if you hadn’t said anything.

Then there’s the scare tactics and horror stories, like the image of the toxic fat. Scaring people is not okay in my book. Blaming and shaming people is not okay in my book. And employing these tactics does nothing to motivate the people who need it the most.

At the end of the day, the decisions on what we eat and drink are ours. It’s good to have the facts, and the statistics there. But it’s up to us, the consumers, to figure out for ourselves that an excess of unhealthy lifestyle choices can harm us. And that’s what our campaigns are missing. Believeability. Patient voices. Real, first hand experiences and stories that will appeal to me, the average Australian. That will help me to come to these conclusions on my own. To seek out those helpful websites on my own. So today, I will get the ball rolling.

I’m Frank, and I am a person with diabetes. I am essentially living with a disease that in some cases is a consequence of being overweight. It’s my job to keep my blood sugar levels between 4 and 8 every day. This means pricking my finger as much as 10 times a day. This means sometimes waking up in the middle of the night to make sure that I’m not too high or too low. I need to think about every piece of food that I put into my mouth. I need to think about every activity that I plan on doing. It plays a rollercoaster on my emotions. And if not managed properly, it could impact on the quality of my life.

I wouldn’t wish diabetes on anyone. I couldn’t do anything to prevent my diabetes, but perhaps you can.

You can also read the International Diabetes Federation’s statement on World Obesity Day here.