The Irish Freestyle Libre Update

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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;

 

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!

 

Thriveabetes Fundraising Music Event

Thriveabetes Fundraising Event Moat Theatre NaasI'm so excited about this that I have to pinch myself repeatedly!!! Some of our volunteers have organised a Fundraising Music Evening on Saturday 12th August in The Moat Theatre, Naas, Co. Kildare to raise funds for Thriveabetes 2018. Please share this event with your family and friends.

Musical guests will include; Pete Kavanagh, The Cahill Sisters, Hally and special guest, Luka Bloom.

Tickets are 15 and can be purchased in advance (allocated seating) through The Moat Theatre or Telephone: 045 883 030

A lot of you may already know that we need a fundraiser to keep the cost of attending the Thriveabetes Family conference down as much as possible.

As you can imagine, a family event like Thriveabetes costs quite a bit. But I am seriously very proud of the fact that we only have to find 20% of the cost through public fundraising. This is where Pete and Pam Kavanagh stepped up.

Pete is a musician living in Naas, Co. Kildare, whose eight year old son, Cayden, was diagnosed with type 1 diabetes in February 2016. The Kavanagh’s recently moved back to their home town from Scotland. Pete’s wife, Pam is a website manager and volunteered her services when Thriveabetes needed help with our website and continues to do so.

When I mentioned at our Thriveabetes team meeting that I didn't think I could find the time to pull off a raffle this year, Pam said “Leave it with me”. Sure enough within two weeks, Pete Kavanagh had the venue and all the acts booked!

Read Pam's story here on what Thriveabetes means to her and her family.

WOULD YOU LIKE TO HELP? WE WOULD LOVE YOU TO.

Thriveabetes is very much a community and as a community we would love to have you all involved in the success of this event. There are 3 areas that we would love help with;

1 - MARKETING AND PROMOTION This help would be huge for us as it would increase our chances of having a bum on every seat;-) Pete would love to hear from you if you can help with marketing and promotion. You can reach him at Petebkavanagh@gmail.com or message him on facebook at @PeteKavanaghMusic

2 - SPONSOR RAFFLE PRIZES

We are holding a raffle at the concert and very much need some raffle prizes. Would you, your employer or friends & family be in a position to sponsor a prize? Again Pete would love to hear from you if you can help!

And 3 - SHARE OUR FACEBOOK AND TWITTER POSTS

This is one for everybody. Please share the event on your social media page via Facebook or Twitter Handle - @Thriveabetes You can also share stories of why Thriveabetes is so important for you and what it gives you and your family.

 

WHAT IS THRIVEABETES?

Just in case you are a new follower or subscriber, here is a little background to how thriveabetes all began….

Thriveabetes is a one day conference that brings people who live with type 1 diabetes together in real life. It came about when myself and Christine Meehan, fellow co-founder, attended a diabetes conference in the UK called “Friends for Life” or FFL run by the A-Mazing Children with Diabetes organisation.

As we sat in a room hearing the familiar beeps of blood glucose meters and insulin pumps, we realised that every single person in that room knew diabetes! Both myself and Christine are adults with type 1 diabetes and don't very often find ourselves in a room with lots of other people with type 1 diabetes.

What we found at these conferences were hundreds of people, to be precise 300 families at the FFL in 2014, who were just like us; living with type 1 diabetes. We heard from speakers who knew exactly what our daily challenges were and offered practical solutions through sharing their lives with diabetes with us. I came away from these conferences with so much new information and a renewed focus on managing my diabetes. And feeling less isolated and alone, like I’d found a second home.

Myself, Christine and Rebecca Flanagan asked our Irish Diabetes Online community if they would be interested in having this experience in Ireland. You can guess what the answer was, as we are busily planning the 3rd Thriveabetes Family Conference in February 2018.

Today, Thriveabetes is a group of dedicated volunteers, who give a lot of their time freely and feel passionate about bringing people with type 1 diabetes together where we can bring our online connections into real life. The Thriveabetes conferences focus on our social and psychological needs in living with diabetes rather than our medical needs.

Email grainne@thriveabetes.ie Thriveabetes takes place on Saturday 24th February 2018 in The Red Cow Hotel, Dublin.

Over the summer we will be confirming speakers for our programme. We have already confirmed Moira McCarthy Standford. Rregistration will open in October. Stay tuned.

Children with Diabetes Update on Services

On June 22nd last year, almost one year ago, I was part of a delegation representing people with diabetes which attended a briefing in Leinster House on the state of diabetes services then. You can read more about what this briefing entailed here. I suppose at this point I should warn you all that there is a bit of a rant coming. Sorry! Usually on the Thriveabetes blog, I try to avoid ranting and I also try to avoid making people feel more helpless and frustrated than they already are by proposing a call to action. But I have failed miserably on both counts here.

THE BACKGROUND TO THIS POST IN A NUTSHELL

At this meeting, we (we being; people living with type 1 diabetes, the Clinical Leads HSE’s National Diabetes Clinical Programme and Diabetes Ireland) asked our TD’s and Senators to commit to providing an additional €5 million per year to implement the Standard of Care document for Children with Diabetes in Ireland.

The Paediatric Diabetes Standard of Care document was published in December 2015 (that's 18 months ago). And it’s a good plan. It’s also good to have a document that would hold the health service accountable on what should be provided to all children living with type 1 diabetes in Ireland.

“The Model of Care document essentially set out a blueprint for the development of a quality paediatric Type 1 diabetes service that was to put children and their family at the centre of their care plan i.e. patient centred as per HSE policy. The proposed model of care included the setting up of Integrated Practice Units, on a regional basis, with a Centre of Excellence supporting outreach centres and identified the staffing required to deliver high quality care and the current gap analysis. Centres of Excellence were to be based in Cork, Waterford, Limerick, Galway, Sligo, Drogheda and Dublin providing support to a number of local outreach centres.” from Diabetes Ireland.

THE UPDATE

So what’s been happening with this since the 22nd June 2016? Nothing! Or maybe it appears that nothing has as there has been no communication from anyone that would indicate otherwise.

Last month, Diabetes Ireland hosted a focus group to provide an opportunity for parents of children with Type 1 Diabetes to have their say on the development of the National Paediatric Diabetes Standards of Care. This is great! Both the health service and Diabetes Ireland have realised that they were missing one very crucial component in creating a standard of care for children with type 1 diabetes - the service users. I would have thought that this feedback would have been useful before the document was published but I’m not going to complain as it’s better late than never.

I do hope that this collaboration continues in some form of Parents Advisory Council. I think it would be beneficial for our children, our parents, the team at the HSE’s National Clinical Programme for Diabetes and for Diabetes Ireland, if we had a group of parent representatives just like the UK’s Families with Diabetes National Network. This group was instumental in getting the NICE guidelines for diabetes put in place in the UK.

BUT, before the meeting of this focus group took place, this Diabetes Ireland press release was published “Paediatric Type 1 Diabetes Model of Care Failing Due to Lack of Commitment” highlighting three posts in Paediatric Diabetes which have remained vacant for over two years despite the funding for those posts being available.

– "In Waterford, the vacant Consultant post there was advertised last year and we have to wait over 6 months for interviews to be held and possibly up to a further year for the post to be filled.

– Following the transfer of a Consultant from Sligo Hospital to Limerick University Hospital, nothing is being done to date to recruit a replacement in Sligo.

– In Galway University Hospital, we are waiting for interviews to take place for the vacant Consultant post there which was recently re-advertised following the withdrawal of a successful candidate who was returning from abroad and who had accepted the post in 2015 and was due to start in 2017. (I think this one upsets me the most because Galway patients were counting down the days to March 2017 and then to be crushed like this).

"Parents of children who attend these three centres are concerned about the care of their children. More and more of these parents are trying to transfer their children to the Dublin Hospitals, all of which already have caseloads way in excess of what they can deal with”.

One step forward, two steps back!

WHAT’S NEXT?

To be honest, I haven’t emailed any of my local TD’s yet to make representation to the Minister for Health to fill these posts URGENTLY and to look for further posts in 2017 to fully implement the Model of Care because I’m still a lot angry that we are in a worse situation than before! All my hope and optimism that this standard of care would move forward has just evaporated.

Do I give up? Do you give up? How can we? We can’t!!! I can't! We just can’t because it’s children.

And I am reminded of yesterdays children with diabetes who grown up in a service that wasn't good enough then and certainly isn't good enough now. My friend, AineMae who was diagnosed with type 1 diabetes as a child only two decades ago. She lost her sight at 26, is now in her 30’s and has been on the kidney/pancreas transplant list for well over two years. Read more about AineMae here.

Another two personal friends diagnosed with type 1 diabetes as children; one is already on that list and one is a hair’s breadth away from the kidney transplant list. And there are many more people who I know only by interactions on the diabetes online community in the same situation.

These were the children with type 1 diabetes of yesterday. And they were failed. The children with type 1 diabetes of today deserve better. And so, I will, once again, take a deep breath, email my TD’s and try to be a bit nicer than I want to be.