Written by Dr Kate Gajewska, Clinical Manager for Advocacy and Research, Diabetes Ireland
Technology used in diabetes care is changing lives of people living with diabetes. From insulin pumps and continuous glucose monitors (CGM) data to automated insulin delivery systems, ‘artificial pancreas’ that estimate and deliver insulin thanks to algorithms based on the CGM data. Technology improves management of diabetes, reduces the risk of diabetes complications – long term and severe, decreases the risk of hypoglycaemia, provides better data to inform insulin dosing, enables remote consultations, and most importantly – improves the quality of life, flexibility, and well-being. People with diabetes in Ireland are lucky to have some advanced technological tools (and all other medicines) reimbursed by the Long-Term Illness Scheme. The issue is that people with diabetes in Ireland – are frequently not using technology, many possible reasons. Research on uptake and access to insulin pump therapy suggests that less than 7% of adults with type 1 diabetes were using pumps in Ireland in 2016, what seems to be low when compared to other Western-European countries (i.e., 34% of adults in Germany, 15% in England and Wales). Training to commence insulin pump therapy is not available in more than half of adult diabetes clinics in Ireland, and among the main barriers to accessing it are limited resources, lack of expertise, awareness, and individual attitudes to technology of health-care professionals and people living with diabetes. The situation with insulin pump therapy looks better in paediatric care, so sooner than later, the need for improved access and follow up care for insulin pump users or those wiling to commence it will increase.
Glucose monitoring is changing diabetes care
The interest and availability of continuous (CGM) or flash glucose monitoring (FGM) is much greater. The tools that show the glucose patterns 24/7, inform whether blood glucose levels are falling down or raising, and provide the alarms (CGMs) when levels are off or are going to be off the target, are a lot more informative than standard blood glucose fingerpricking that allows for one-off glucose measurement usually every couple of hours. People with diabetes are keen to use them to know more about diabetes and manage it better – the training to use it is also less intense than for the insulin pump therapy. CGM and FGM help everyone, both on pumps and injections. However, access to those is still an issue. 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.
Freestyle Libre is currently available only 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, which was completed by 754 participants at the end of 2021, has been done as part of the Patient Submission of Evidence requested by the National Centre for Pharmacoeconomics during the Health Technology Assessment (HTA) of Freestyle Libre. The HTA has been stopped and since then – Libre is still not reimbursed to adults with type 1 diabetes in Ireland. With these age restrictions, Ireland is the only one country that does not reimburse FGM in the Western Europe.
Paying for health
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.
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” highlighted Dr Gajewska, Clinical Manager for Advocacy and Research, Diabetes Ireland. 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.
Health-care professional’s expertise not respected?
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”. This is, however, good news, that people with diabetes can access continuous glucose monitoring in Ireland, and every year more and more people are using CGM. This is in line with newly proposed NICE guidelines, and EASD (European Association of Study on Diabetes) recommendations. For some, however, applications are also being rejected or not made at all.
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. We believe that the Health Service Executive and National Centre for Pharmacoeconomics (NCPE) should trust and support those who live with diabetes (very often paying out of pocket to access technology), and those who care for them. We believe that after 40 years of finger pricking, people with diabetes – in particular those on insulin, including those with type 2 diabetes – deserve equal access to technology that makes their lives easier, and their diabetes management better. They deserve access to devices that protect them from hyper- and hypoglycaemia, allow for easy diabetes control and reactions, protects them from severe and long-term diabetes complications, and as a consequence improve their quality of life. People with diabetes should have access to either Flash or Continuous Glucose Monitoring, which improve their understanding of diabetes and supports the actions to be taken. We strongly believe that, nowadays, technology is the key to improving the health of those who live with diabetes.
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