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;

Diabetes Support in Ireland

When you live with type 1 diabetes there is SO, SO MUCH information to learn, especially in the early days. So much, that I don’t think it is possible for any health care professional to cover absolutely everything – how could they? Then, as they years go by, we are considered the experts, and so information relevant to us falls through the cracks. One of the major benefits of diabetes support groups is that it can fill in a lot of those information gaps; such as where to register to get your many, many health checks, such as feet and eyes or if your clinic has structured education programmes. A support group also helps you to stay updated as the health information changes, which it does all the time. And it also lets you know that you are not the only one living with diabetes.

In my opinion, diabetes peer support is as important in your diabetes management as your health care providers. A support group provides opportunities to share experiences and to learn from one another. They encourage strength and resilience. Very often it’s the piece of diabetes management that you never knew you needed.

ConnecT1D in Seattle say that “people with T1D who connect with others with T1D tend to make shifts in their lifestyles that add up to better T1D management, better health and greater satisfaction in life.”

Diabetes Forecast, the American Diabetes Association’s monthly magazine says that “Much of the research on peer support has involved people with diabetes, and the findings are significant. According to a recent report by the National Peer Support Collaborative Learning Network, of 20 studies on peer support and diabetes published between 2000 and 2012, all but one found social support to be beneficial.”

It doesn’t matter if that support comes from the virtual world of social media or from face to face contact. Although, I feel that you can’t beat face to face meetups.

I believe that a diabetes support group only needs two people to meet over a cuppa to get started. That might be a simplistic view of it but that’s what it is. I suppose it helps if those two people get on well too.

If you are interested in becoming part of a Diabetes Support Group we have a list that we try to keep updated.

Diabetes Support Groups in Ireland

Another way to get connected to your type 1 diabetes community is to come to Thriveabetes 2018 in Dublin on Saturday 24th February, where you will meet, at least, 100 adults with type 1 diabetes and at least, another 100 parents of children with type 1 diabetes. Now, that's a lot of support.

Register here for Thriveabetes 2018