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.

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

Davina 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;

The Positive and Negative Psychological Effects of Type 1 Diabetes on Children

The main focus of Thriveabetes and it’s reason for being is that we, people with type 1 diabetes, felt the psychological effects of living with type 1 diabetes just weren’t being talked about anywhere. This is why I was so excited when I saw that a project called "The Positive and Negative Psychological Effects of Type 1 Diabetes on Children" at this year’s BT Young Scientist Exhibition. I was so thrilled I heard that they came first in their category: Social & Behavioural Sciences 1st place Junior group. The teenagers in question are Sarah Healy and Miriam Murphy and they attend Cork Scoil Mhuiregan Smál, Blarney, Co. Cork. I’m thrilled to let you all know that Sarah and Miriam are bringing their project to our Thriveabetes Exhibition.

Here is a guest post written by 13 year old Sarah.

The positive and negative Psychological effects of Type 1 Diabetes on children.

By Sarah Healy

My name is Sarah, I am 13 year years old, and living with type 1 diabetes for the past 3 years. In November 2014 at the age of 9, I was diagnosed with type 1 diabetes. It changed my life forever. I got great support from the diabetes team and my family. I started out on insulin injections but now I'm on an insulin pump which has been a very positive impact on my life. Having type 1 diabetes has been an emotional rollercoaster.

I experienced many daily challenges and stresses and found that there was no psychological support available on the diabetes team to help me deal with these challenges. After talking to other type 1 diabetic friends, I realized many more had the same diabetes stress and challenges without any support.

As a result I decided to take the opportunity of the BT Young Scientist Exhibition and it was my incentive and the reason behind this project. As a result of my experience, I felt there was a need to investigate the positive and negative psychological effects of type 1 diabetes on children, and to research the need and services available for psychological support.

I also wanted to highlight the need for support services and the lack of services available. Also to see if we could come up with a solution to these problems. I also wanted to create awareness of type 1 diabetes.

About the project

We wanted to examine the psychological challenges of living with type 1 diabetes in the 8 to 15 year age group in Ireland. We decided to do this by:

• Investigating the positive aspects of living with type 1 Diabetes
• Identifying the negative aspects of living with type 1 Diabetes
• Exploring the need for psychological support services for children with type 1 Diabetes
• And to ascertain the current available psychological supports for children with type 1 Diabetes in Ireland
• We also wanted to develop a novel technological strategy to improve psychological support for children with type 1 Diabetes

I can’t wait to hear more about the girls project and to meet both Sarah and Miriam. Here are some of the diabetes themed projects participating in The BT Young Scientist Exhibition this year:

Presentation College Cork Can full fat milk help control diabetes?

Louth St Vincent’s Secondary School A comparative study into the reported advantages and disadvantages of Insulin pumps.

Tipperary Presentation Secondary School Comparing CSII (Continuous Subcutaneous Insulin Infusion) with MDI (Multiple Daily Injections) in Children with Type 1 Diabetes

Wexford Creagh College Dia-beating Hypos

REGISTER HERE

Thriveabetes” is a one-day conference for people living with type 1 diabetes, or for people who care about someone with type 1 diabetes.

It takes place on Saturday, February 24th in The Red Cow Hotel.

*** Advanced registration is required. Find out more HERE.

Insulin for Life Collection at Thriveabetes

The Insulin for Life Collection at Thriveabetes 2016 was a huge success and I'm pleased to announce that Sarah MacCann and her family have volunteered to collect unused diabetes supplies at the Thriveabetes for Insulin for Life/IDDT (InDependent Diabetes Trust) again this year. Have you changed prescriptions lately and now have medication such as a brand of insulin that you no longer use?

Or have you change glucose meters recently and now have a lifetime supply of lancets you’ll never use?

Here is a guest post from Sarah about the work of Insulin for Life and information on what you can bring.

Bring your spare diabetes supplies to Thriveabetes for Insulin for Life

We were blown away by the amount of supplies donated at the last Thriveabetes conference. Five full boxes of unwanted supplies were saved from the bin and sent to Insulin for Life to be used by people who really need them.

The discovery of insulin in 1922 was hailed as a miracle. But did you know that while it is estimated that around 50% of people around the world in need of insulin struggle to access or afford it, or that insulin is one of the most commonly discarded drugs in the developed world? Every year, tens of thousands of vials end up in landfill or incinerators and 75% of this discarded insulin is still in-date.

Having access to insulin should be a right not a privilege.

There are many things we can do to make the lives of all people living with type 1 diabetes better, as the amazing Elizabeth Rowley of T1 International will talk about when she gives the opening speech at Thriveabetes 2018.

Insulin for Life collection Details

If you have any of the following spare supplies, please bring them along to Thriveabetes:

Items donated MUST BE:

- Unopened, in-date insulin vials and penfills with at least 3 months until expiry date - Unused insulin pens - Unopened packs of syringes & pen needles - Unused lancets and unopened lancing devices - Unopened in-date glucose test strips - Unused blood glucose monitors

After the conference, your donated supplies will be sent to the IDDT, Insulin for Life’s local partner in the UK, who will send them on to projects supporting children and young people with type 1 diabetes in Africa.

Please make sure that everything is unused and in-date.

If you have used that glucose monitor or lancing device only once, please don’t bring it as we won't be able to send it on for someone else to use (and we will have to pay to dispose of it).

Thanks so much. Sarah MacCann

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More information on how to help:

The following organisations are all working to make insulin and diabetes supplies available to all those in need of them worldwide:

• T1International
• Insulin for Life
• InDependent Diabetes Trust IDDT
• IDF's Life for a Child
• Sunrise Foundation
• The Pendsey Trust

You can send your unwanted supplies directly to the IDDT all year round, at:

Insulin for Life InDependent Diabetes Trust PO Box 294 Northampton NN1 4XS U.K.

REGISTER HERE

Thriveabetes” is a one-day conference for people living with type 1 diabetes, or for people who care about someone with type 1 diabetes.

It takes place on Saturday, February 24th in The Red Cow Hotel.

*** Advanced registration is required. Find out more or Register HERE.