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.

Thriveabetes 2018 Registration Now Open

It's finally here! I don't know whether to take a deep breath or to release the relief that we are getting there. Registration link is below. The team and I would like to say that we are really proud of the programme we have put together this year. We feel that you will be pleased and we have taken on board all the feedback we received from you over the years.

Thriveabetes is a conference organised completely by people with type 1 diabetes and focuses on the psychological impact of living with a chronic, lifelong condition. We aim to provide “Inspiration, Motivation and Information” to all people living with type 1 diabetes (adults, parents & children over age 5 years). It's going to be a great day:-D

Saturday, February 24th 2018, The Red Cow Hotel, Naas Road, Dublin.

First, you will notice that our Registration fee has increased significantly. Thriveabetes 2016 didn't break even financially. We did have some funds left over from 2015 to cover the shortfall. This year’s registration fee reflects this but does cover a hot lunch and refreshments valued at €25.

Additional Conference Information;

• Conference Programme and schedule

• Venue Information (Getting there and Staying there)

• Speaker Profiles (still waiting on a couple of speaker biographies and photos)

• Register Here

Freestyle Libre Review from a Teen

The Abbott Freestyle Libre was launched for sale in Ireland on November 1st. Click here to find out more about the Libre, what it does and how much it costs. And click here for some information on saving money on the Libre. The Libre is a less invasive method of checking blood glucose levels and provides a profile of blood glucose trends in a graph on a reader device for up to 14 days. Representing Thriveabetes, Rebecca Flanagan attended an advance briefing on the Abbott Freestyle Libre with several other members from the diabetes blogging community on October 13th. Hailey who is 16 and has lived with type 1 diabetes for eight years has never used a device this the Libre before. She manages her diabetes on Multiple Daily Injections (MDI) and blood glucose testing on a traditional meter.

Rebecca & Hailey’s Review of the Abbott Freestyle Libre.

in Rebecca's words.

My daughter, Hailey, was given the opportunity to test the Abbott Freestyle Libre before it hit the Irish market for retail. I was very excited about this, having read many other people's testimonies after they bought the starter packages from England. It was amazing to also get the opportunity to see how the device works, in detail, especially how small and soft the actual sensor under the skin is - technology is fascinating! I couldn't wait to get Hailey started. She is very sensitive and has a very low pain tolerance, so after psyching herself up she had me insert the sensor She said it didn't hurt going in, but afterwards there was some residual pain for a couple minutes as her skin got used to the intrusion. After that she hardly knows it's there.

We have not looked back since. The accuracy has been spot on. She is able to see where her sugars are going, especially when she starts to feel a low come on - I think there is a lot of comfort knowing, after treating a low, that the sugars are coming up again and this is clearly seen on the sensor after scanning. Over-treatment of lows are now more easily avoidable. The graphs are also such a blessing in order to see the trends, such as when she usually spikes or might go low. This information is invaluable in trying to maintain the correct insulin levels she needs, especially as she is on MDI.

I think that for parents of younger children especially, this device is a game changer when it comes to night checks - no more waking up your poor child unnecessarily if you don't need to! A simple scan will let you know whether they are safe and in what direction their sugars are going. For times of illness, the Libre will also be amazing.

Although there is quite a high financial burden attached to the Libre at the moment, I would hope that the clinics will see major improvements in the HbA1C's of patients using the Libre and this information will eventually help make a valid claim for the Libre to be included on the LTI. I am very excited for our next appointment! The additional benefits of less invasive blood glucose testing and the discretion the Libre allows are also important, but I think we all know that it comes down to the long term benefits. If we can offer devices like this that will bring about better blood glucose control which ultimately results in less long term complications, then everyone wins.

Hailey's thoughts on the Libre: 'The Libre encourages you to stay more 'in control' because there is no hiding from the readings. As in, with a normal finger prick test, you could KNOW that your sugars are spiking but your reading at the time can be in range when you do the blood test. With the Libre you can easily continue to scan and watch where the numbers are going and take action as needed. Over time you should see your readings become way more level. I much prefer the Libre to regular finger prick tests - and my fingers do, too!'

Hailey also told me that she feels that the Libre encourages more frequent testing. This is a great thing for a mother of a teenager to hear!!

DISCLAIMER

Abbott paid for Rebecca's travel expenses from Clare to attend their briefing but they did not ask her to blog about or influence her opinions of the Libre. Abbott did ask that Rebecca’s daughter try out the Libre and gave her the complete starter pack with two sensors for free.

CONFIDENTIALITY

We also had to agree to not discuss our briefing outside of the room until the media embargo was lifted on November 1st. This was really difficult, I think for all of us as members of the diabetes community and not being able to talk about it with our community. This was really difficult!