The Irish Freestyle Libre Update

Last weekend, I attended Abbott’s European Diabetes Exchange forum (‘dX’) in Amsterdam, Netherlands. The mission of dX is to create a place where bloggers from all over Europe can meet and exchange ideas in a fun and engaging way, and discuss matters that affect the diabetes community. And it certainly was that! However, the thought on a lot of minds attending, especially those of us from the UK and Ireland, was when will the Libre become reimbursed under our health service as with most other diabetes medications, supplies and devices?

Disclaimer: My travel and accommodation expenses were paid by Abbott to attend DxAmterdam, otherwise I wouldn't have been unable to attend. But all thoughts and opinions are my own. I wrote the beginning of this post before I went to DxAmsterdam.

What’s included in this post;

• A Diabetes Management Revolution
• Research on how the Libre is impacting diabetes managment
• What's new with Libre?
• Update on the Libre’s application with the HSE for inclusion on the Long Term Illness Scheme

A Diabetes Management Revolution

I do believe that when we look back on the launch of the Abbott Freestyle Libre, we will consider it as one of the important revolutions in diabetes management. Just like when the first blood glucose self monitoring meters came out.

Before the Libre, only a few people with diabetes had access to, continuous information about blood glucose levels, into the hands of many more people. Yes, people have to pay for it and it’s costly but people are paying for it! And yes, it’s still only a few people who have the Libre but that number seems like it’s increasing everyday.

Finally people can see what glucose levels are at any time, they have more information about how different types of food and exercise and stress does to glucose levels. People can see a high or low blood glucose even a head it off at the pass thus staying within a good range more.

And healthcare professionals can see this too. Things that we knew about our own diabetes are being validated with graphs and now health care professionals realise that they are learning from us as much as we learn from them. This is a team player equaliser making us, the person with diabetes a more equal team member.

In the 1980’s the Self monitoring blood glucose meter was a game changer - they gave people access to what their blood sugars were within 15 seconds. Maybe carb counting and the basal/bolus regime gave us better management.

In this decade, the Freestyle libre gave everybody access to continuous data. So thank you Abbott!

How is the Libre doing?

Tim from Abbott (I lost my speaker profile book so I don't have any titles for some of the people who presented to us) told us that, from their observations, on average people who use the Libre were scanning their blood glucose levels 16 times and that this was leading to reduced time in hypo and increased time within their blood glucose targets. And they have the research to prove it.

"The real-world data findings were presented today at the Advanced Technologies and Treatment for Diabetes (ATTD) congress in Paris. The data show a strong link between real-world use of FreeStyle Libre system and glucose control. The full data set was generated from 50,831 readers, which were used to scan 279,446 sensors. This constituted 409.4 million glucose measurements, 86.4 million monitoring hours and 63.8 million scans – representing more than 50,000 FreeStyle Libre users across the Europe region.

Key findings of the real-world data of the FreeStyle Libre system:

• More scanning: Users checked their glucose levels an average of 16.3 scans per day
• Across the spectrum of scan rates seen in the population, the following trends were observed as scan rates increased:
  • Improved HbA1c: Average glucose level decreased as scan rate increased with estimated HbA1c decreasing from 8.0 to 6.7 percent
  • Reduction in hypoglycemia: Time spent below glucose levels of 70, 55 and 45 mg/dL decreased by 15 percent, 40 percent and 49 percent
  • Reduction in hyperglycemia: Time above 180 mg/dL (10.0 mmols) decreased from 10.5 to 5.9 hours per day
  • Increased time in range: Time in glucose range (70-180 mg/dL) (3.9mmols - 10.0 mmols) increased from 12.0 to 16.8 hours per day"

Source: PR Newswire

What’s next for the Libre?

Abbott Diabetes Care are currently working on the pregnancy indication and will have more news soon. The Libre Link, which is not availible in Ireland yet, allows you to scan your sensor using your phone, is now uploadable to the following diabetes management apps;

• Social Diabetes
• Nutrino
• Diasend
• MySugr

Update on the Libre’s application with the HSE for inclusion on the Long Term Illness Scheme

No news is good news, right? Abbott submitted their application for inclusion on the Long Term Illness Scheme earlier in the year. The HSE acknowledged that they had received the application through parliamentary questions from our public representatives in the Dail in March 2017.

“It will be considered in accordance with the Health (Pricing and Supply of Medical Goods) Act 2013. The application will be assessed for listing under reimbursable items for people (aged 4 and above) with diabetes who intensively use insulin; namely those requiring multiple daily injections of insulin (MDIs).” From Abbott’s website.

My Abbott representative while attending DxAmterdam said that “the HSE had some follow up questions for Abbott which they have replied to.” However, late last week the HSE came back to Abbott with a couple more follow up questions, which Abbott intend to reply quickly too.

So it looks like it a bit of paperwork tag but that shouldn't be a surprise, should it?!? No one seems to know how long this process is going to take or how this process works. So we still wait and wait without any significant communication from the key players; this is probably the most frustrating part of this process for me - the lack of communication from the HSE or the voice of the diabetes community in Ireland.

So far, full reimbursement of the Freestyle Libre has been approved in France, Austria, Sweden and Finland. And partial reimbursement in Italy, Switzerland and Germany. My fellow bloggers in the UK say that the NHS is very close to approving it. Let's hope we are as close to it as they are in the UK!

A Diabetes Mother's Call

You might remember a while back that I posted about being part of a Diabetes Ireland delegation to attend a diabetes briefing for TD’s and Senators in Leinster House. My friends, Rebecca and Davina both gave powerful and emotional speeches to our audience about life with type 1 diabetes. I asked Rebecca if I could shared hers on Thriveabetes and she was game. Rebecca is also one of my partners in crime in organising Thriveabetes :-) Here are her words;

My name is Rebecca Flanagan, I live in Co. Clare and I have 3 daughters, the eldest of which has Type 1 Diabetes. She was diagnosed just before her 8th birthday and, at 16 years old now, has lived with this auto-immune condition for 8 years – a condition she will have for the rest of her life. This was the start of our whole family’s ‘new’ normal. This new normal for my daughter now involves a minimum of 4 finger prick blood sugar tests and a minimum of 4 insulin injections every day in order to stay alive. EVERY DAY!

Part of the new normal for our family was figuring out the insulin dose based on the amount of carbohydrates she would be eating, but it’s not a perfect science and so many variables can contribute to her care. Additional testing may be required for stressful times, like the students taking exams right now; anxiety, exercise, sickness. As parents we became our child’s nurse and doctor, hoping we had been given the proper training to keep our child healthy.

Time off work must be organized to attend hospital appointments, schools must be cooperative, and her siblings sometimes have to take a back seat. Middle of the night blood sugar tests often have to be done. There are times that the whole family becomes exhausted and burnt out.

But I know I’m not alone in this life with type 1 diabetes. There are about 3,000 families in Ireland trying to manage this balancing act with a type 1 child in Ireland. Some children are only babies at diagnosis – imagine trying to count the carbohydrates and a correct insulin dose for an infant, when it’s hard to tell how much even makes it past their mouth. Imagine trying to get a toddler to finish their dinner because they already had their insulin, and if they don’t they are in danger of having a hypo (or a low blood sugar, the consequences of which can lead to a coma or even death). Imagine having to come in to your child’s school every day at lunch, as I did, to administer their insulin injection because the school has no resources to support this. And then imagine hoping that they finished all of their lunch and maybe not run around TOO much at break, for fear of a hypo.

Now imagine the teenage years when they just don’t want to deal with it anymore – when they long to be like normal teenagers and not worry about testing all the time and taking insulin before having a quick ice cream with friends. Imagine their worries and fears for the future – my teenager shouldn’t have to worry about whether or not her life expectancy will be shortened, or complications like blindness or liver failure, or how difficult it might be to have a healthy pregnancy in the future.

These are all realities for families with type 1 children. Parents worry whether they are doing it all right whilst dealing with the public perception amongst those who just DON’T KNOW the difference between type 1 and type 2 diabetes. We are constantly defending and educating, constantly worrying. Worrying about complications, worrying about negative relationships with food (eating means testing means injecting), worrying about things like diabulimia – when teenagers stop taking their insulin in order to lose weight. There’s just so much worry.

There’s only so much that we, as parents, can do. We need the support of well trained and well-staffed clinical teams. Every family, regardless of location, should have quarterly hospital appointments with a paediatric endocrinologist, nurse specialist, dietician and psychological support service. Some children, my daughter included, are currently attending clinics with NO endocrinologist. Transitional clinics for teenagers which include psychological support are majorly needed.

The research has been completed. The Model of Care for all Children and Young People with Type 1 Diabetes was published in December 2015. It is time to get the funding in place to secure the basic medical staff requirements and get this system on track. The technologies available for the treatment of type 1 diabetes should also be available to all children – my daughter has lived with type 1 diabetes for 8 years and we are no closer to obtaining an insulin pump for her - they should be available to any family willing to put the work in.

Adequate staff and patient training now will reduce the long term impact on the health service by minimizing the potential for complications in adulthood. My daughter and all the other type 1 children will be using the health service for life, and we need up front support now so that they do not become a statistic of complications such as blindness and amputations.

I am asking for all the TDs in attendance today to please push for the Model of Care staff requirements to be filled and work towards all of the recommendations made in this document. The strategy is in place but the funding needs to follow NOW. Please support our families and push for funding to be utilised effectively. Our children did nothing to deserve this illness but they deserve adequate treatment and care from the health service on a nationwide level.

Thank you Rebecca for sharing your speech. And thanks to both Davina & Rebecca for explaining, so well, what living with type 1 diabetes is really like.

Our first request from our TD's was that 0.4% (€5m) of the health service's annual spend on diabetes (€1.3 billion this year) be re-directed towards funding the paediatric diabetes strategy, so that huge financial savings from preventing diabetes related complications would be accrued in future years.

But then! We asked for a multi-year health strategy with cross-party agreement for adults with diabetes. The National Programme for Diabetes Team have come up with this strategy but the need government to approve the funding to deliver this plan!

Diabetes is costing the government €1.3 billion this year and over €800 million of that will be spent on dealing with the complications of diabetes. We can reduce the amount spent on complications each year by directing the financial savings that the HSE has made, in the recent years by working with the diabetes community, in reducing the cost of diabetes medications and devices. We need those savings reallocated to providing the manpower resources to cope with the rising numbers and to encourage more effective daily management and better health outcomes.

So what's next? Well, we can try to use every opportunity to remind our TD's why we need this. We need it because those of us who do not have diabetic complications want to stay that way for as long as possible. We need support from our medical teams to maintain that journey. Those of us who already have complications need the support of a complete medical team to minimise the damage of those complications.