Freestyle Libre on the LTI Upate

It’s been over a year since the Abbott Freestyle Libre became available to purchase in Ireland. This product is a new way of monitoring blood glucose levels without finger pricking. Instead you use a reader device (which is just like the Freestyle Optium Neo meter) to scan a sensor that sits on your arm. And it has been a game changer in diabetes management for most who have used it.

I don’t know how many people are using the Libre in Ireland but from the chatter in the diabetes online community it would seem that the number of users is significant. And there are a lot more people who can’t afford it, so have to wait until it’s available on the Long Term Illness Scheme.

When is that going to happen? Is it going to happen?!? Any day now!!! Surely any day now. That’s my wishful thinking anyway.

If you are wondering what has happened in this process in the last 13/14 months I’ve put together a little summary which might be useful. And last June, I wrote this piece on what was happening then with the process of getting it included on the HSE long term illness scheme. I was very optimistic. I still am!

I should probably mention that I don't know anymore than any other member of the public. All the information below is in the public domain.

TIMELINE

• 2014 September Libre available in the UK and lots of Irish people were able to get their hands on it.
• 2016 November Libre available for purchase in Ireland
• 2017 February Abbott applied to include the Libre on the HSE long term illness scheme. The company published this statement on their website. With another update in August
• 2017 September NHS announced that the FreeStyle Libre will be available on the NHS from November 1 (three years this took). Diabetes Ireland’s published this statement on their reaction to the announcement.
• 2017 November 1st Libre included on an NHS reimbursement scheme
• 2017 November 27th We wait! Still.

WHAT CAN YOU DO

A lot of people, myself included, are people of action. I mean I do have a certain amount of patience but it’s has limits. So, if you would like to get this done and the Freestyle Libre included in the Long Term Illness scheme here are a couple of things you can do.

CONTACT ALL OF YOUR LOCAL TD'S

I know most of you have already done this and it's frustrating to have to do it a-gain! But this really helps strengthen the case for a speedy approval. Especially, if they hear from LOTS of their constituents. You can write a letter, email or telephone but it’s important that you contact ALL of your local TD’s. If you’re not sure who all your local elected representatives are, find them and their contact details here.

What to ask? Ask them to ask the HSE when the Freestyle Libre will be available on the Long Term Illness scheme and why it’s taking so long. They will submit a parliamentary question in the Dail that will be referred to the HSE who are legally required to answer. This is a fabulous way to spend our income tax and creates lots of extra work for people who then get motivated.

SIGN THIS PETITION

This change.org petition was started by Limerick Mum Louise Hackett, whose daughter has type 1 diabetes in December 2016. It had well over 4,000 signatures. There have been a couple of other petitions shared over the year but this one has the most signatures at well over 4,000 and it hasn’t been delivered to the Minister for Health, Simon Harris or the HSE just yet. A boost in the number of signatures would really help and then present it.

SOME MONEY SAVING TIPS IF YOU ARE ALREADY PAYING FOR YOUR LIBRE

If you are paying for your Freestyle Libre at the moment please be aware there are money saving offers such as the occasional Free Shipping, etc. on the Freestyle Libre website, as well as claiming refunds through your tax return. More than this here.

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!

Sugar Surfing Winners!

Last week we announced that we had 4 copies of the book "Sugar Surfing - How to manage Type 1 Diabetes in a Modern World" to giveaway. Kevin McMahon, co-author of “Sugar Surfing” very kindly donated the 4 copies of the book to us. Kevin was one of our speakers at Thriveabetes 2015 in Maynooth. He is a diabetes dad, his daughter, Darby, was diagnosed with type 1 diabetes in 2001. The Thriveabetes team would like to extend their thanks to Kevin for this generous gift.

I would like to thank everyone who completed the survey to enter. The results were very interesting and we will publish them in the coming weeks. 

And the winners are:

• Teri Byrne
• Ramona Lasch
• Evelyn O'Leary
• Cliodhna Hyland

Congratulations to all 4 and I will be in touch in the next couple of days to get your mailing addresses and get your copies of Sugar Surfing out to you.

I would also like to mention that in the coming weeks we will be running a Thriveabetes Fundraiser Raffle with free Thriveabetes Tickets on offer to volunteer ticket sellers. If you are interested in this opportunity please email me at Grainne@thriveabetes.ie

Or if you would like to donate a prize to add to the two fab prizes we already have?