Late last Friday afternoon, January 19th, The Department of Health issued a statement announcing the HSE’s decision to approve reimbursement of the Abbott Freestyle Libre for Children and Young Adults with type 1 diabetes. (What is the Freestyle Libre? See here).
It was extremely vague and very badly worded leaving very few happy with the announcement.
But most of all, it created a social media flurry among the approximately 10,000 to 12,000 adults who are, not so young, and also live with type 1 diabetes who have been excluded completely from this scheme.
I am so angry and so frustrated because of this! We are being told, AGAIN, that we have to wait some more.
I really didn’t know what to do next. But it wasn’t going to be nothing.
This is a continuing discriminatory pattern towards adults with type 1 diabetes by the department of health and the HSE.
Since 2008, when the Diabetes Expert Advisory Group Report was published, there have been two standard of care documents for children type 1 diabetes (2012 & 2015) and a Cycle of Care document for people with type 2 diabetes with medical cards or GP services card (2015).
All of which I supported and was thrilled about. It was progress, even though, there wasn’t a single mention of Adults with type 1 diabetes.
I remained hopeful that I/we would be next. I waited patiently for the Type 1 Adults Standard of Care document, which was rumoured for publication in June 2016. It didn’t happen! Now, I have discovered that a completely different document, called “National Clinical Effectiveness Committee Adult Type 1 Diabetes Guidelines” only commenced development in June 2016.
I seriously, SERIOUSLY, thought we would be thrown a bone thrown with access to the Libre.
In the 10 years I have been volunteering and advocating, we have seen no investment into the health services for adults with type 1 diabetes at all!! We still have no national structured diabetes education programme and no standard access to insulin pumps in parts of the country. For pete’s sake, some type 1 diabetes adults clinics don’t even have a dietitian!!!
There have been approximately 100 Parliamentary Questions asked in Dail Eireann since late 2016 asking if and when the Libre will be included on the long term illness. That’s almost two per week since the Libre was launched in Ireland in November 2016.
There are 17 countries in the world who have set up Libre reimbursement schemes, so far. Not a single one of them decided to only give it to a specific segment of the type 1 diabetes population. The HSE appears to be ageist in their policies towards adults with type 1 diabetes.
I spent my weekend researching, writing, emailing, posting in our diabetes community groups and waiting for DOH offices to reopen on Monday so Diabetes Ireland can get us some answers to our questions.
I also messaged back and forth with some other keyboard warriors of the diabetes community. I’ve been reading messages from people who are in this with us <3 and never felt less alone.
OUR message is clear. Not this time HSE! Not this time!
I am Grainne Flynn:
- Adult with type 1 diabetes (and not a young one)
- Secretary of the Clare branch of Diabetes Ireland
- Founder of the Type 1 Diabetes Community Group: Thriveabetes
- Creator and Blogger at BloodSugarTrampoline.com
Number of ALL PEOPLE with type 1 diabetes:
is “approximately 14,000 – 16,000 of the total diabetes population in Ireland i.e. 10-15% of the population of people living with diabetes.
It is estimated there are 2,750 people under 16 years of age living with Type 1 diabetes (based on the Irish Paediatric Diabetes Audit 2012) results and other young adults under 20 years attending transition clinics).”
SOURCE - https://www.diabetes.ie/about-us/diabetes-in-ireland/
Diabetes Cycle of Care service for holders of medical cards and GP Visit Cards who have Type 2 Diabetes Launched.
National Clinical Effectiveness Committee Adult Type 1 Diabetes Guidelines External Consultations Process
A member of the community share this response from HSE Clinical Strategy and Programmes to Deputy Mary Butler’s PQ.
“Re: PQ 49665/17 - "To ask the Minister for Health when he expects to publish the model of care for adults with type 1 diabetes which was due to be published in June 2016; when he expects the publication to be launched; and if he will make a statement on the matter".
The Health Service Executive has been requested to reply directly to you in relation to the above parliamentary question, which you submitted to the Minister for Health for response. I have examined the matter and the following outlines the position:
There is no model of care for adults with type 1 Diabetes, nor a plan to develop this model of care. In June 2016 the National Clinical Programme for Diabetes commenced the development of Department of Health National Clinical Effectiveness Committee (NCEC) endorsed guidelines for Adult Type 1 diabetes and will aim to launch these guidelines in June 2018. These guidelines will include an implementation plan.”