The Freestyle Libre; why we need it

I write quite a bit on BloodSugarTrampoline.com about how fortunate I am to have a Continuous Glucose Monitoring System CGM courtesy of our health service. It was something I had to fight for and I will never give it up or switch to a Freestyle Libre. So why am I, a die hard CGM user, pushing for more people to be included in the Freestyle Libre reimbursement scheme here in Ireland?  

We should all be included in the Freestyle Libre reimbursement because:

THE INFORMATION ON GLUCOSE LEVELS

Firstly, the information that both a CGM and the Libre provide about your blood glucose levels are similar, even though they are different types of technology. I wrote more about the Freestyle Libre here when it was launched in Ireland in November 2016. https://bloodsugartrampoline.com/blog/index.php/2016/11/01/funding-the-freestyle-libre

Having more information beyond a finger prick means you are better informed to make insulin dosing decisions. You can take action to avoid hypos and hypers before they happen. Within the first six months, that I used my CGM I brought my HbA1c down by one whole percent!!! I hadn’t been able to budge that number for years.

For decades, we have been using finger prick devices which don’t provide enough information about our glucose levels. The Freestyle Libre does provide this information and empowers us in our life with diabetes more and be less reliant on our diabetes health care team.

The Freestyle Libre also give our consultants more information to help us manage better.

I feel that having this information is priceless! Worth a lot more than €62.60 per year.

REASONABLE COST TO THE HEALTH SERVICE

CGMs are way more expensive, therefore more difficult to get funding for though the health service. And so if we can’t give everyone CGM’s why not give everyone, who want it, a Libre at a much more reasonable cost. The HSE estimates that it would only cost an additional €62.60 per person, per year for the Libre when you account for the reduction in test strips.

Device name	Libre	Dexcom G5	Medtronic Guardian Connect (Pay as you go Plan)
Start up cost	€169.90	€397.72	€660.1
Sensor cost	€59.90	€79.95	€66.125
Sensor cost per month	€119.80	€319.80	€316.25
Annual cost of replacing Transmitter	N/A	1254.6
annual cost of consumables	€1,437.60	€5,092.20	€3,795.00

EASY TO USE

• Minimum training, if any, required for people to insert and use. I was able to insert it using the photo instructions. Plug and go!
• It doesn't hurt like a finger prick check can sometimes hurt. So you’re more like to use it more. The once every 14 days doesn’t even hurt.
• It takes less time to get a glucose result, about 10-30 seconds versus 2 minutes using a traditional finger check monitor.
• It doesn’t cost more if you scan more often. And many studies show that increased glucose checks lead to better glucose management.
• It’s so discreet. No-one can tell that you are checking your glucose.
• It gives more information to aid in insulin dose calculations.

• AND, AND, you don’t need access to hand washing facilities like you would to get an accurate finger prick check.

“Continuous glucose monitors, or CGMs, have been around for over a decade, but poor quality and high costs have been barriers to use, says Irl Hirsch, who holds the Diabetes Treatment and Teaching Chair at the University of Washington School of Medicine.

But improvements on both fronts lead him to believe that CGMs will soon become the standard of care. At his own clinic, 60 percent of patients use one.”

It is a huge step forward for people with diabetes who were using finger prick devices only.  I think that Dr Irl Hirsch is very insightful when he suggests that CGM’s, including the Libre will be the standard of care soon. I don’t think Ireland should be left behind again.

Here are some of my blog posts from Blood Sugar Trampoline on my experience with my CGM.

• How I got a CGM
• Things I've Learned about my Diabetes with a CGM
• To Know or Not to Know - A CGM Story
• The CGM Conversation is Changing

All people with diabetes need to be included in the Freestyle Libre reimbursement scheme. We should get to choose if we want this device or not.

Please join me outside Leinster House, Dublin 2 on Wednesday 18th April to present the Libre Petition to members of the Dáil.

100 Extreme Challenges with Diabetes

Thriveabetes 2016 Speaker, Gavin Griffiths, also known as the DiAthlete, comes to Dublin and Belfast on the 26/27 April as part of his challenge to take on 100 Extreme Challenges with Diabetes. He intends to run 25 marathons in one month. If successful in completing all 25 marathons he will have completed a total of 100 endurance challenges with type 1 diabetes in the 10 years! Gavin lives was diagnosed with type 1 diabetes at age 8 in 2000 and hopes that by doing this he will inspire others living with type 1 diabetes that they too can achieve their dreams but also to raise awareness in the wider public about the challenges living with type 1 diabetes.

He is also fundraising for T1International and The League of DiAthletes: a group of dedicated ambassadors living with type 1 from around the world who run educational workshops to support their local diabetes communities in low-income countries. People can donate to support these projects here.

Gavin plans to take on Dublin on Thursday 26th April and Belfast on Friday 27th April, more information about starting and finishing points, where he will welcome local T1D Heroes to run with Gavin’s Olympic Torch from the 2012 London Olympics, can be found on the DiAthlete’s Facebook Event page.

Gavin’s Previous Extreme Challenges with Diabetes include:

GBR 30/30 Challenge: running 30 mile routes every day for 30 days from John O’Groats to Land’s End in the UK;

the Manhattan Marathons: running 7 marathons in 7 days around Long Island, NY, for the type 1 charity Marjorie’s Fund;

mHealth Grand Tour: cycling 1500km in 9 days from Brussels to Geneva, including pedalling over a few Alp mountains;

World Diabetes Tour T1D Challenge 100km hike around an active volcanic mountain called Hekla in Iceland…

Even though Gavin takes on these crazy challenges, he feels it's important for people to know that while growing up with type 1 diabetes he wondered what this condition actually was, hated it for much of my childhood and in some regards feels he learned his lessons the hard way.

He says, “I’m not superhuman, but if there is a part of me which is, well, it stems from having the right attitude when it comes to living with type 1 diabetes.”

Gavin wrote a blog post for Thriveabetes in October 2016 where you can read more about his type 1 diabetes journey which you can read here. Don't forget to follow the 100 Extreme Challenges with Diabetes Adventure on Facebook.

Freestyle Libre with 40 Years of Diabetes

This week's guest post is from Jude Devine who lives in Clare. Jude is originally from the UK, born in Liverpool. She moved to Clare with her partner two years ago. She has been using a Freestyle Libre since October 2015 and says it has been eye opening for her Jude is sharing her experience of using a Freestyle Libre glucose sensor for the last two years and shares some of her over 40 years of living with type 1 diabetes.

Type 1 Diabetes in 1975

Urine tests; big glass syringes which had to be boiled on the stove; unexplained highs and lows; terrifying night hypos –just some of the features of my life as a four year old in 1975 with type 1 diabetes. Of course I didn’t understand much at that age, but due to my parents’ research and patience, by the time I was eight I was doing all my own tests and injections, counting carbohydrates and had a good understanding of how it all worked.

The big missing ingredient - Information.

The big missing ingredient in all this was information. Urine testing was slow, inconvenient, inaccurate and quite frankly, for an eight year old asked to pee in the potty she used as a baby, humiliating! At best it gave a rough idea of whether you had had a high blood sugar in the last few hours. I can remember, before peeing, if I had eaten something “forbidden” I would do a little dance in the bathroom before peeing, in the hope that my test would turn blue (negative) as opposed to orange (2% glucose).

Over time, technology started making life easier –hypodermic syringes were a great leap forward, but best of all was blood glucose testing. An instant picture, in the form of a test strip compared to a colour chart was like a gift from the gods, especially to my parents, who were most afraid of night-time hypos. I would regularly wake in the night to see the ghost-like apparition of my mother hovering over me to check I was still breathing.

I somewhat stumbled through my teens, thinking I was in control –of course teenagers know everything! In my twenties, faster testing using blood glucose meters was another big step forward. I had lots of little grey calloused marks on my finger from testing, it often hurt, and was a bit messy, but hey, that was just a minor disadvantage of diabetes.

In my late twenties and thirties I started developing complications, from frozen shoulders to background retinopathy, too many to list. I found it difficult to get things under control. In a moment of despair in my diabetes consultant’s office I speculated on how wonderful it would be to have a device which gave an instant and regular blood sugar measurement without the need for finger-pricking or mess, something which would enable you to know whether your blood sugar was on its way up, down, or steady. I will never forget the moment. My diabetologist said “actually there is a new device you could try”. I wrote down “Freestyle Libre” and went home to look it up on the internet.

The Freestyle Libre Difference has been Eye Opening

In October 2015, I got my first Freestyle Libre sensor and reader. It was like reading the book when you have only seen a trailer for the film. The full picture of my diabetes opened up before me with each scan. I saw from the graphs how I reacted to my insulin, when my dawn phenomenon started and ended, how my body reacted to different types of food, exercise, alcohol, stress. As a teacher I could scan in the classroom – I never could have performed a blood test in there. Instead of “running high” all the time at work, I could more safely aim for normal blood sugars. The arrow indicators and graphs enabled me to head off hypos and highs. Within a month I was feeling better, sleeping better and feeling like I was in control, something I had never felt before. My HbA1c came down over the next few months from a dangerous 10% to 6.5%. It is still improving now, and getting closer to non-diabetic blood glucose levels.

These days, I have swapped the classroom for a smallholding. The Libre enables me to be outdoors all day, digging, weeding, chasing animals around and getting generally messy. I don’t have to frequently go indoors and clean up in order to test my blood. My scanner is always in my pocket. I know if I am heading towards a hypo and always have glucose handy. It is very rare these days that I actually go too low. The stress, anxiety and depression I suffered for years is starting to lift because I feel more in control.

My quality of life is so much better.

I have to work an extra job now to pay for my Libre sensors but I know that in the long term it will be worth it. Diabetes is hard work. It is emotionally and physically draining at times. I have found that the key to avoiding this drain is information, the kind of information that the Libre has given me. It has proved the single best new tool in my kit since diagnosis 42 years ago.

The Libre4All Diabetes Campaign

Thank you, Jude for sharing your diabetes story with Thriveabetes. Hopefully, soon, we will see that Jude is included HSE's Reimbursement Scheme for the Freestyle Libre and doesn't have to struggle financially to afford it.

If you are interested in supporting the campaign to ask the HSE to based eligibility on the Freestyle Reimbursement scheme on clinical need and to remove the age limit, please sign this petition and join us when we hand this petition over to representatives of our government on Wednesday 18th April 2018 outside Leinster House, Kildare Street, Dublin 2 at 11:30am. Read more about this here.