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 CGM devices are available in Ireland and if they are funded by the HSE
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;
Joe Solo returns to Thriveabetes 2018 for a third year. And for those of you who may not already be familiar with Joe - you are in for a treat! Joe Solowiejczyk, or Joe Solo, has been living with type 1 diabetes for over 50 years. He grew up in New York but now lives in California. He is a registered nurse, diabetes educator and family therapist and works extensively with both patients and professionals on the Family-Approach to Diabetes Management.
His ebook “A Type 1 Guide to the Universe” introduces a new way to learn to thrive with diabetes. It is the first book to integrate the psychological and emotional aspects of dealing with diabetes into the core of its approach.
You always get more than you expect from Joe and when I asked him to write a blog post for Thriveabetes I was blown away.
Joe Solo's Thriveabetes Experience
If you feel yourself needing some new information on how to manage it, if you feel like you’re dragging a bit, weary from the ups and the downs of it all, then you definitely need to come to Thriveabetes 2018 – guaranteed healing, fellowship and fun!
It was nearly 4 years ago when I met Gráinne at the Friends for Life Conference held by Children with Diabetes in the UK. At that time, she shared with me her dream and Christine’s dream and Rebecca’s dream about creating something like that for Ireland.
She asked me if I would be willing to present at that conference if it were to ever come to be. Of course I said “YES” – how could I not to Grainne/ Her enthusiasm, courage, determination and heart made me want to “get on any train” that she was on! Of course I would do it.
Well, the first Thriveabetes Conference happened and it was fantastic!!! Parents, older children and adults with their partners with T1 came – it was a sellout! And it was freakin’ FANTASTIC!!! I’ve been to many diabetes conferences in my life BUT this one was one of THE best for me. The energy created by Grainne, Christine and Rebecca together with the energy that the participants brought with them made the gathering something magical and mystical!
People were hungry for information, which the promotion for the conference promised there would be plenty of – speakers from all over Ireland, from Diabetes Ireland and 2 presenters from the States – Kevin McMahon and myself. Kevin spoke about technology and about the diabetes industry. Consultants from Ireland presented on the most current standards of diabetes care available in Ireland today. Reps from the medical device companies were there showing of their newest and brightest diabetes gadgets!
Everyone at the conference had diabetes or lived with someone that had it – we were like a gathering of Fellow Pilgrims.
There were presentations on coping with the daily challenges of living with this stupid disease (I’m very happy to be alive BUT I do hate it, on parenting on dealing with the emotional and psychological aspects of it. Besides being comprehensive IT WAS EMOTIONAL in the best possible way imaginable. Everyone at the conference had diabetes or lived with someone that had it – we were like a gathering of Fellow Pilgrims. Listening to others stories made each of us make more sense out of our own stories, like putting things into perspective and most importantly, realizing that each of us was really not alone. People were laughing and crying at the same time.
It was like there was a magical understanding amongst all the participants – even though we might not have personally known everyone there – we did feel, or at least I did, like I “knew” what each and every other person goes through – 24 hours a day, 7 days a week. And that made me feel better about having diabetes for 56 years. It totally relieved me of the exhaustion.
The most wonderful part for me was just that – the group understanding, the acknowledgement received from being with a group of Fellow Pilgrims for all the stinking hard work we put into managing our diabetes day in/day out – it was the feeling of not being alone. My “colleagues” provided me with new inspiration and energy, I left feeling like I could do it for another year – my batteries were fully recharged!
If you’re looking for a magical diabetes experience, if you feel yourself needing some new information on how to manage it, if you feel like you’re dragging a bit, weary from the ups and the downs of it all, then you definitely need to come to Thriveabetes 2018 – guaranteed healing, fellowship and fun!
It felt so good to laugh at such serious things with so many walking the same path! You owe it to yourself to check it out. And if you come and you really don’t get something deep out of it I personally will refund the cost of the conference to you!!!! I’m that sure that you’ll love it.
Joe Solowiejczyk, A Mile In My Shoes Consulting firstname.lastname@example.org
You can also find Joe on Facebook.
Thank you Joe for your words of inspiration. Joe's is presenting four workshops at Thriveabetes 2018:
- Adults - “Diabetes Burnout”
- Parents - Parenting & Diabetes: You can do it without pulling your hair out!
- Teens - How to be a Juvenile Diabetes Delinquent; Driving your Parent Nuts in the Most efficient way.
- 9 to 12 years - The Truth about How much Diabetes Sucks!
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.