A recent survey by Diabetes Ireland highlighted the frustration of many people with diabetes who are unable to start or had to stop using Flash Glucose Technology (FGM, Freestyle Libre) due to the lack of reimbursement and unaffordability.
‘The Freestyle Libre has changed my life, my HbA1c is the lowest it has been in 18 years because I can closely monitor changes in my sugars and identify patterns which allows me to adjust insulin dosage. Sadly, it comes with a huge cost burden and I have to sacrifice many things in order to keep my health intact. It should be available to everyone there should not be a price tag on people’s health’ (Adult, type 1 diabetes respondent)
Freestyle Libre is currently available to people with Type 1 diabetes under 21 years of age, following a decision taken by the HSE in 2018. Since then, despite petitions, reports, letters and plenty of scientific evidence on the huge clinical benefits and improved quality of life, adults with diabetes still have to pay out-of-pocket to manage their diabetes with FGM. The survey conducted by Diabetes Ireland at the end of 2021 reveals the ongoing disappointment and frustration of the Irish diabetes community.
Although the HSE commissioned a full Health Technology Assessment for the Freestyle Libre in late 2021, the process has stalled. As part of this process, Diabetes Ireland was asked to submit a Patient Organisation Submission of Evidence for approval of the Freestyle Libre which it done in early February 2022 using data from the survey.
The online survey for people with Type 1 and Type 2 diabetes, parents of children with diabetes and diabetes healthcare professionals was conducted in November 2021 and completed by 754 participants.“We were overwhelmed with the response from the diabetes community, including members of diabetes teams” – says Dr Kate Gajewska, Clinical Manager for Advocacy and Research in Diabetes Ireland and author of the report.
The survey included responses from people who used or are still using Libre, not using it, and from healthcare professionals (HCP). Of 292 of the Libre adult users who responded to the survey, 216 have or had to pay for Libre privately (74%) at an approximate, minimum monthly cost of €120. 131 adults with diabetes are not using Libre anymore, mainly due to its cost. Of those who have never tried Libre (152), the main reason why was that they could not afford it. Among the respondents, 39% were FGM users, 22% were using CGM, and 37% standard blood glucose meters.
‘I have to choose between better diabetes management or paying bills’ (Adult, type 1 diabetes respondent).
Overall, 98% of respondents living daily with diabetes and 92% of healthcare professional respondents believe that FGM should be reimbursed by the HSE for all people with diabetes based on clinical need. “The data clearly show how important the glucose monitoring technology is for people living with this burdensome condition, how it improves diabetes management, safety and most importantly quality of life” added Dr Gajewska. Of the most important findings, Dr Gajewska highlights that the majority of FGM users must pay privately to use it, which causes a significant financial burden. “One of the participants ‘had to give up their TV package’, and many had to choose and compromise on good diabetes management in order to pay their basic household expenses. Some use FGM only for a month and have a break to save money for the next month. This is disheartening” continued Dr Gajewska adding that “Libre is reimbursed in almost all European countries and the national data from the registries show how it improves the diabetes outcomes in the population of people with diabetes. In many Western countries the newer Libre 2 (which alert on changing glucose values) is already reimbursed”.
The reimbursement of FGM under the Long-Term Illness Scheme (LTI) and removing the current age limit has been listed in Diabetes Ireland Pre-Budget Submission 2022 as a priority and will be again for 2023. “We can observe the increasing frustration among the diabetes community” says Mr Cormac Devlin, TD, Chairperson of the Diabetes Cross Parliamentary Group. “Parliamentary Questions (PQs) questioning the unavailability of Freestyle Libre in Ireland are the most ‘popular’ diabetes-related submissions to the Minister for Health. For example, a recent reply to a question about the rejection status of applications for FGM for people over 21 years based on clinical need stated that the proportion of rejected applications made by healthcare professionals is increasing annually from 35% in 2018 to 51% in 2020 – added Mr Devlin.
Another important survey insights showed that the majority of healthcare professional respondents had experienced the rejection of their FGM applications for their diabetes patients by the HSE with ‘no explanation provided’ which raises the question of whether it respects HCPs clinical judgment and expertise.
Dr Kate Gajewska continued “Who should decide on the most appropriate treatment for a patient: an unnamed official or a diabetes specialist who knows the medical history, diabetes outcomes and the personal needs of their patient? The HSE should trust the expertise of their well-trained diabetes specialists and allow them to make medical decisions according to their best knowledge, judgement, and clinical recommendations”.
Professor Hilary Hoey, Consultant Paediatric Endocrinologist and Chairperson of Diabetes Ireland added “In diabetes management, data which can support patients’ and diabetes teams’ daily medical decision-making are key to minimizing the risk of costly complications development. What is difficult to understand is that some HCPs who have their FGM applications rejected, then request a more expensive CGM device for their patient, and these are much more likely to be approved”.
Diabetes Ireland is continually calling for the removal of the age restriction currently in place for the Freestyle Libre so there is equal access to the technology for everyone based on clinical need. A copy of the survey report has been submitted to the Minister for Health and the CEO of the HSE asking them to take steps to remove the age restriction with immediate effect and make the Freestyle Libre available to adults with diabetes based on clinical need trusting the expert judgement and clinical expertise of diabetes healthcare professionals and to investigate and intervene in the current impasse that seems to be preventing the undertaking of a Health Technology Assessment for the Freestyle Libre or offer a different process to enable this to take place.
Read a summary of the survey results here
Read the full survey report here
ACCESSING LIBRE – Survey Findings Infographic
How can you help?
Email your local TDs and ask them to place a Parliamentary Question on your behalf:
To ask the Minister for Health, if he will remove the current age restriction for Freestyle Libre with immediate effect following the recent Diabetes Ireland survey which showed that 98% of the 649 respondents living daily with diabetes and 92% of 105 healthcare professional respondents believe that the Freestyle Libre should be reimbursed by the HSE for all people with diabetes based on clinical need and if he will make a statement on the matter.
To ask the Minister for Health to investigate the current impasse that seems to be preventing the undertaking of a Health Technology Assessment for the Freestyle Libre or offer a different process to enable this to take place and if he will make a statement on the matter.