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What's Next in the Freestyle Libre Campaign?

What's next in the Freestyle Libre/Equality for all people with type 1 diabetes Campaign? Since I posted my initial reaction to the HSE's announcement to reimbursed only children and young adults on multiple daily injections (MDI) for the Freestyle Libre, I have joined forces with fellow advocates, Davina Lyon from Diabetes T One and Elizabeth Murphy, Waterford Diabetes Support.

 

Leinster House Diabetes Delegation: Anna Clarke, Rebecca Flanagan, Grainne Flynn, Kieran O'Leary, Nuala Murphy, Siobhan Horkan, Elizabeth Murphy, Ronan Canavan, Davina Lyon and Hillary Hoey

WHAT HAS BEEN HAPPENING?

Firstly, I would very much like to thank all the members of the diabetes community who have reached out to us, emailed their local TD's and have been sharing those replies with us. We have gathered so much information from that process.

Diabetes Equality Petition

Image of Equality for all people with type 1 diabetes PetitionDavina created a Change.org petition that has gathered an unprecedented 13,000 + signatures. She is working with her local TD, Frank O’Rourke and with Diabetes Ireland to get this petition into the hands of Minister Harris.

Elizabeth has also been working with her local TD, Mary Butler on the same objective. She has been emailing Deputy Butler with follow up parliamentary questions to get more information from the HSE.

Dáil Topical Issue Debate

Both Davina and Elizabeth requested that their local TDs, Frank O’Rourke and Mary Butler, ask parliamentary questions to clarify some of the information in the HSE's statement. Both Deputies decided to do this jointly and on Tuesday 6th February, publicly, asked the Minister for Health these crucial questions:

  • What is the specific criteria which must be satisfied in line with the recommendations of the Health Technology Assessment Group in order to get reimbursement for children/teenagers with diabetes who use the Freestyle Libre Blood Glucose Management system?
  • What does the term “young adult” mean? Is age going to be a binding limit for determining suitability of people for reimbursement of the Blood Glucose Management system Freestyle Libre?
  • How long will it take for the reimbursement suite (the reimbursement paper trail process) to be established and what date can suitable children/young adults expect to get access to use the Freestyle Libre Blood Glucose Management system?
  • Why are children on insulin pumps being excluded given that the HSE advocates for insulin pumps for children?
  • Is the minister for Health, Simon Harris willing to meet a delegation from the type 1 diabetes community and accept the petition with 13,000 signatures?

The minister did not attend this session in the Dail on this occasion. He deputized Deputy Jim Daly, Minister for State with Special Responsibility for Mental Health and Older People to respond. Deputy Daly acknowledged that he did not have any answers or new information for us. But that we did indeed deserve and need answers to the questions asked.

THE NEXT STEP

The next step is taking matters into our own hands. Davina emailed the Minister for Health, Spokespeople for health from both Fianna Fáil and Sinn Fein, Diabetes Ireland and the Director General of the HSE, Tony O'Brien requesting this meeting again.

If the Minister doesn’t respond we plan to deliver it anyway. We hope that Frank & Mary and other members of the Dáil will accept it on the Minister's behalf. Do you think if we give you about two weeks notice you would join us?

 

Watch this space!

I also have follow up questions on why the HTAG document makes it’s recommendation that this device be approved for children without any clinical evidence to support it to ask the Minister and the HSE on my personal blog: BloodSugarTrampoline.com publishing on Wednesday 14th February.

 

Here is the video of Deputies Mary Butler and Frank O'Rourke asking those questions;

Continuous Glucose Monitoring CGM

Continuous Glucose Monitoring CGM

UPDATED - 04 April, 2019: There is a lot of interest these days in Continuous Glucose Monitoring (CGM) and how beneficial they are to help manage type 1 diabetes. In this post I have included information about:

  • What are Continuous Glucose Monitoring (CGM) and how do they work

  • CGM devices available in Ireland

  • CGM Qualifying Criteria for funding from the HSE

Freestyle Libre on the LTI Upate

Scan-Icon-FreeStyle-Libre-6.2mmol-TAGU-GBEN-e1498474027116.png

FreeStyle Libre Review Ireland 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.