CGMs

FreeStyle Libre Not Working?

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I’m appealing to the search engines with the title of my post today, because this is what I was hoping to find when I turned to Google for help with my FreeStyle Libre a few weeks back.

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I was about halfway into a sensor that I had purchased, when suddenly my reader stopped working. The screen wouldn’t start up when I hit the home button. There had been a few instances in the days leading up to this where my screen had blacked out for five or ten minutes at a time, but it always came back to life. I might also mention that this culminated on a Saturday morning, and I soon learned that I wouldn’t have access to customer service until 8am on the Monday.

When my reader still wasn’t responding well after an hour, I was frustrated. I reached out to @FreeStyleDiabet on Twitter with no reply (I’m not too sure where in the world this account is based).

I tried charging the battery with no success. I got an idea from the instruction manual that the device might be temperature sensitive, and kept it in my pocket while I was sleeping one night with no luck either.

I had no idea where I would stand in getting replacements for my reader and the $95 sensor I couldn’t make use of. Abbott were a little coy at the blogger event in Sydney regarding faulty sensors, and we were told that it would depend on individual circumstances.

When I got in touch with Customer Service on the Monday, they shipped me a new reader and replacement sensor on the condition that I send the faulty one back via supplied packaging. The replacements arrived via express delivery two days later, and I started the sensor up once again.

The replacement sensor, however, was wildly out of range. Most of the time, the readings on the Libre were far higher than what I actually was. I was constantly seeing numbers in the mid to high teens (and even 20s) after meals, and this really took a bit of a mental toll on me. I was pricking my fingers almost as much as I would without it, because I couldn’t trust the numbers. I was driving myself crazy, thinking about the prior two sensors I had used and whether the readings were this far out (and it didn’t only happen when glucose was high!)

I gave customer service a call once again, explaining my problem. I was reminded to factor in the 5-10 minute lag time, which I was confident I had. I was then asked to provide three Libre readings and their respective finger stick readings, and I was put on hold to do a control test. The customer service rep then came back and told me that he would send me a replacement sensor free of charge because I was reporting readings higher than the acceptable difference of 1-2mmol.

I was really impressed at how quickly I was issued with a replacement sensor over the phone. I had meter reports prepared prior to calling, almost expecting that I would have to send through evidence of inaccurate readings. Both times, my replacement products were shipped by overnight express to my doorstep instead of the usual 6-9 day delivery window.

However, I would have expected customer service available to me on weekends, even if just for a couple of hours. I also think that Abbott need to be more realistic about their products developing faults. The returns policy, which you can read here, is rather brief and doesn’t give the customer a feeling of confidence or support when the tech fails.

That being said, I am super grateful that Abbott resolved both of my problems with very minimal hassles.

FreeStyle Libre To Hit The Australian Market

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Updated: You can read about the blogger event I attended in Sydney here, and my initial review of the product here.

Okay, well in case you haven’t heard this news already…

Abbott’s FreeStyle Libre Flash Glucose Monitoring System recently received approval from the Therapeutic Goods Administration in Australia, and is expected to be launched in the Australian market in the coming months.

The Glucose Monitoring System consists of a small round sensor that is worn on the back of the upper arm, and a “reader” that looks very similar to a blood glucose meter. Users need only scan the reader over the attached sensor in order to receive a reading, and 8 hours worth of historical data.

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The Libre has a few key differences that sets itself apart from a traditional Continuous Glucose Monitor (CGM). The sensor appears to be much more discrete, approximately the size of two stacked 20 cent coins. Sensors also have a life of 14 days, as opposed to traditional CGMs which last up to 7. Abbott also claims that the Libre eliminates the need for finger pricking, making glucose testing more convenient and discrete. Alternative CGMs need calibrating with finger pricks, and only guarantee glucose trends rather than historical data.

Unlike a CGM, however, the Libre is not a “live” glucose monitoring device. It is up to the user to complete the scan in order to obtain a glucose result and historical data. There are no alarms or indicators to alert the user when they are going high or low. I also don’t believe that there is any “sharing” functionality of data through smartphones, which many CGM users in the DOC place a high value on. It appears that data can be downloaded to a computer and generated in report format, similar to the Insulinx meter I have been using recently.

I know that many folks in the Diabetes Online Community do pay for the convenience, live data, sharing and peace of mind that a CGM offers them. I know that many have come to rely on this standard in their diabetes management, and I wouldn’t expect that the Libre would hold much appeal here.

I have previously expressed reasons for not wanting a CGM myself. I’m quite motivated to do my finger pricks as much as I need to. I’ll be switching to an insulin pump in May, and I can’t say I’m keen on wearing two devices. I can’t say that I could handle seeing “live” data all the time. At $75 for a sensor that lasts only 7 days, I can’t say that I can afford it either.

I believe that this is where the Libre would hold the greatest appeal.

I also know that for many who would like one, a CGM is out of reach. At a time where there is a strong push for greater access to glucose monitoring technology in Australia, the arrival of a new competitor in the Libre is an encouraging sign. I have only heard positive things about the Libre from European folks in the DOC who have tried it after traditional finger pricking.

The biggest factor here is likely to be the cost of the Sensors, which need replacing every 14 days. While Abbott is yet to comment, Seven News speculates a shelf price of $100 per sensor. Given that CGM sensors are not currently subsidised by the National Diabetes Services Scheme (NDSS) in Australia, I would not expect that Libre sensors would be, either.

You can read more about the FreeStyle Libre, and sign up for e-mail updates at freestylelibre.com.au.

Disclosure: Abbott sent me a Press Release regarding this news. I was not asked or paid to write this, and all opinions expressed here are my own.

Guest Post – T1D Family Story

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Jules reached out to me last week in the Dannii Foundation Facebook group. She has kindly accepted my offer to share her family story here today, in order to raise awareness of the importance of government funding towards Continuous Glucose Monitoring. If you are affected by diabetes in Australia, I encourage you to write to the Australian Minister for Health, Sussan Ley – check out my letter here.

Dear Minister Ley,

I write to you today, to let you see a day in the life of our family of 5.

We are not your normal run of the mill family.

Our daughter, J was diagnosed with Type 1 Diabetes (T1D) at the age of 5. That day, our lives turned on its head. I had seen T1D in a family friend growing up. I often found myself thanking my lucky stars that I didn’t have this disease! I was grateful as my children started to grow, that I didn’t have medical issues with my kids! How quickly this changed on that day, almost 8 and a half years ago.

That isn’t where our story ends. 9 months later, my second daughter, E was born. It should have been the happiest time of our lives. It was, briefly, until my son, T was diagnosed with Coeliac Disease (CD) one month later.

Another Autoimmune Disease had found us! I kept questioning myself, what have I done wrong? Could I have done something different? The answer is no! There wasn’t ANYTHING I had personally done wrong!

That very same year, we lost my Dad to Cancer. A huge person in our lives was taken from us at such an early age!

A couple years after this, T was diagnosed with ADHD. Another reeling moment, fighting for him and for people in the Health Profession to just listen to us.

As time went on, puzzle pieces started to fall into place. We had traced autoimmune diseases back to my Great Grandmother who had Rheumatoid Arthritis (RA). Funnily enough, I found out that I too have RA. So more research was done. All the while, dealing with T1D, CD, ADHD and the death of my dad.

In 2013, my mother was diagnosed with Cancer. We first found out that she was terminal on the 25th of May, which was T’s birthday. Merely 3 months later, my Mum passed away. It was yet another blow to the family that is still very real today, and has left mental scars on us all.

Prior to her passing we were starting to question if T had ‘bigger’ issues than just ADHD. Mum’s dying wish was to see him tested for Autism. T was tested, and on October 30 2013, he was diagnosed with Autism.

In that time, E started school. We had high hopes for her, as we still do. Her teacher turned to me and said, “please get her tested for Autism.” Only a couple months later (January 2014), E was diagnosed with Autism also.

Let’s skip forward to December 2014. It feels like hurt just keeps following us. I was diagnosed with Coeliac Disease. Let’s skip forward to September 2015. I was diagnosed with Multiple Sclerosis (MS). Let’s skip forward a month on, and my husband was diagnosed with Gilbert’s Disease and placed into the high-risk category for Lupus. OMG! Yet another autoimmune disease was trying to invade our lives.

Ok let’s take a huge step back. Where does our not so little J fit into all of this? Remember that ‘little’ girl who was diagnosed with T1D at the age of 5?  She’s now almost 14.

Through all of this – dealing with diabetes, Coeliac Disease, Autism, ADHD, Cancer, Death, Rheumatoid Arthritis, Multiple Sclerosis, Gilbert’s Disease and Lupus in our family – where does the time and energy come to look after a child with T1D?

It comes mostly from me. I test her blood sugar levels at 10pm, 1am, between 3-4am, and then again at 7am when we get up. I can tell you now that most days I’m utterly exhausted! That is without taking into account that I have MS. This kills most of my energy levels. I end up in bed most of the day conserving energy for appointments for the kids, or just to get up and make dinner for them.

A day in the life of our family is a HUGE undertaking! It wasn’t something I chose or deserved to get. It is what it is. BUT there is something that would hugely help our family.

J doesn’t have a Continuous Glucose Monitor (CGM). Why? Because the cost of this device is out of our reach. We are a 1 income family. I am a stay at home Mum as it is too hard to juggle appointments for all of my kids’ special needs and requirements. A CGM would add that layer of not having to guess what I could do wrong. Often at night before bed, J and I will look at her numbers and then at each other. Which way is it going? If we only knew, we could act accordingly and treat the right way to allow her a nights full sleep! Often our normal schedule of testing goes out the window and we’ll have hourly to 2 hourly testing.

J is so damned tired and cranky. She’s just over it! She just wants to do normal teenage things. And she would give a lot for a good night’s sleep. Please, uninterrupted sleep would mean the WORLD to her. At the same time, OMG, I just want to sleep too!

Please give it to us in the form of funding for a CGM.

Yours Sincerely,

Jules.

Affected by diabetes? Join in the Oz Diabetes Online Community Twitter chat Tonight and every Tuesday from 8.30pm AEDT (GMT+11) by following the #OzDOC hashtag on Twitter.

No Responsibility From Insulin Pump Companies

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Last night, I attended an information session on insulin pumps at Diabetes WA. And this morning, I’ve got about a million things that I want to write about.

I’ve been on Multiple Daily Injections since I was diagnosed five years ago. I’ve never seriously considered an insulin pump, and I can’t say that I know too much about them. I’ve thought about going to one of these information sessions over the years, but it was just one of those things that I never got around to. Okay, truth be told I procratinated on RSVPing to those events until it was too late. Over and over.

I guess what motivated me this year was the fact that I am now a part of the Diabetes Online Community. I think, talk and write about diabetes every day. I feel more motivated towards my diabetes managment, just from interacting with you. I see so many of you blogging, tweeting, screenshotting and instagramming pump stuff each day. I want to understand it. And I want to seriously consider it as an option going forward.

Representatives from a few of the insulin pump companies were there to chat to before and after the session. And to be honest, they were absolute vultures. I’ve never seen such eager salespeople out there in full force, desperately wanting our business. When our fantastic host Margie asked for some sample tubing to show us, it literally seemed like a race to see which rep could get to Margie first. As I asked one of the reps if a meal bolus was as simple as inputting the number of carbs into the device, she began hurriedly cramming in as much information as she could before the talk resumed. I’ve never seen anything like it.

The topic of Continuous Glucose Monitors came up briefly. As I have written in recent days, Continuous Glucose Monitors aren’t subsidised by the government here in Australia. The cost of purchasing a CGM device and its operating consumables is excessive. While having a CGM may not matter to myself, I know that it could make a world of difference to young children and parents out there.

I thought it was rather interesting to hear the representatives in the room quickly removing themselves of any responsibility for those excessive costs. They urged us to write to our Members of Parliament. They urged us to lobby the government for subsidies towards CGMs and diabetes devices. As though it’s out of their hands.

These companies are responsible for the excessive costs of these devices. These companies are making a profit off of our disease. There are so many companies and product lines out there for that very reason. That vulture like behaviour occurs for that very reason. And I hardly got the feeling that these people genuinely wanted to help me make my diabetes management easier. I so badly wanted to know if they even had diabetes themselves!

I hope I haven’t taken anything away from the Diabetes WA session. It was fantastic and I have so much more to write about. Stay tuned – I’ll have more in the days to come.

At 10.41pm, I was cutting it close with yesterday’s #DOCtober photo. An exclusive look behind the scenes of the jacket I wore last night.

https://instagram.com/p/80lsx1A_bu/?taken-by=franksita

 

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!

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