Some of you may be aware that I have been collaborating with two other members of the diabetes community on the Libre4All campaign: Davina Lyon from Kildare/Offaly, Liz Murphy from Waterford. We are also collaborating with Diabetes Ireland.
The Press Release below was issued by Diabetes Ireland on Monday afternoon, 12th March, it's a combination of the press release myself, Davina and Liz issued on Monday morning and new information received by Liz.
We are asking the Minister for Health, Simon Harris, or a representative from the Minister’s office, to meet with us and other representatives from the diabetes community on Wednesday 18th April to discuss our concerns relating to the reimbursement scheme. The Minister has nominated two senior officials from the Minister's Office to accept the petition.
If you are someone who is affected by the restricted access to the Libre reimbursement:
We would encourage you to contact your local TD’s to ask the Minister why the Freestyle Libre Reimbursement scheme is only available to children aged between 4 and 21 years?
If you are a parent of a child with diabetes who is included in the reimbursement scheme:
We ask for your support also. I feel that the message the HSE is sending out to our children with type 1 diabetes is that when you become an adult with type 1 diabetes you will be treated this unfairly and harshly. Please ask your TD's to ask the Minister why this scheme is not available to all people with diabetes?
We are also seeking media volunteers who use the Freestyle Libre from all over the country. If you would like to share how this device has made a difference in your life please email me at Grainne@thriveabetes.ie We would really appreciate it
HSE Denies Thousands Access to Life Changing Diabetes Device
Petition for “Equality for all people Diabetes” gathers over 16,000 signatures
The Type 1 Diabetes community has reacted angrily to the announcement last January by the Department of Health welcoming the HSE’s decision to reimburse Freestyle Libre. The reimbursement scheme comes with restrictions that leave thousands of people with type 1 diabetes denied access to this life changing diabetes device.
More than 16,000 people have signed an online petition campaigning for reimbursement for all people with type 1 diabetes called “Equality for all People with Diabetes” created by diabetes advocate, Davina Lyon.
There are approximately 20,000 people with type 1 diabetes in Ireland. According to the 2012 Irish Paediatric Diabetes Audit, there are 2,750 children under 16 years with Type 1 diabetes. With the current restrictions on the reimbursement scheme only a small percentage of those children will be included and 17,000 adults with type 1 diabetes completely excluded because of their age.
The HSE used the Health Technology Assessment Group (HTAG) Advice Note to estimate that the “average additional cost per patient per year for using Freestyle Libre is a minimum of €62.60” making the cost of providing the Libre to all people with type 1 diabetes approx. €1.2 million, with an estimated additional saving in the “expected reduction in the need to perform finger prick testing of over 2000 times per year”.
This is an insult to the diabetes community as the HSE has already saved €5 million on blood glucose strips since April 1st, 2016, when the rules governing access to blood glucose strips for people with Type 2 diabetes were changed.
Representatives from the Diabetes community: Davina Lyon from Kildare/Offaly, Liz Murphy from Waterford and Gráinne Flynn from Clare, have requested a meeting with Minister Simon Harris on Wednesday April 18th to discuss their concerns and to present the online petition.
Diabetes Ireland said it is extremely disappointed that the ground-breaking Freestyle Libre technology is not being made available for every person with Type 1 diabetes, based on their clinical need. We are very much aware of the many disappointed adults, who currently pay up to €120 a month for this device and have seen much improvement in their health and quality of life from using the device daily over the past 12 months.
A lot of these adults were encouraged to get the device by their diabetes team based on their clinical need and on the basis that it would eventually be reimbursed by the HSE, as it is in the UK and many other countries.
Diabetes Ireland is very supportive of the Type 1 Diabetes Community Advocacy Group position and firmly believe that everyone with Type 1 diabetes should have access to the technology that bests support them to clinically manage their condition most effectively on a daily basis. However, it seems in this instance the HSE decision was based more on a cost basis rather than from the perspective of the patient’s quality of life and clinical need.
Further information from the HSE issued today in a response to a recent Parliamentary Question by Mary Butler TD set out the following patient eligibility criteria for a Freestyle Libre. However, the is causing more confusion as the HSE has not made it clear whether a person needs to meet just one of the criteria, or all of the criteria to qualify for a Freestyle Libre. If it is the case that all of the criteria needs to be met, then only a very small group of people will be eligible and this is not acceptable. The HSE will be asked to further clarify and explain its position on this issue.
Eligibility Criteria for Freestyle Libre
1. Type 1 Diabetes
2. Children and young adults aged 4 - 21 years
3. Patient using multiple daily injections of insulin or insulin pump therapy
4. Patients who have increased blood glucose testing requirements (≥8 times daily)
5. Frequent episodes of diabetic ketoacidosis (DKA) or hypoglycaemia which have included hospital admissions
6. Patient is not pregnant
