Technology that aids diabetes management unaffordable for many

Many people with diabetes in Ireland have not been able to start using a piece of technology which has been shown to improve diabetes management and quality of life, because they cannot afford it, a major new survey has shown.

Others who have used the technology in the past have had to stop using it, again because of affordability issues.

The FreeStyle Libre is a type of flash glucose monitoring (FGM). It consists of a small, round sensor, about the size of two stacked 50-cent coins, worn on the back of the upper arm for up to 14 days. A handheld reader is scanned over the sensor to get a painless glucose result in less than one second, removing the need to finger prick.

Each scan displays a real-time glucose result, a historical trend and the direction the glucose is heading. The reader holds up to 90 days of data, providing a historical snapshot of glucose levels over time. This data is presented in a user-friendly visual chart.

Following a decision taken by the HSE in 2016, the FreeStyle Libre is currently only reimbursed for people with type 1 diabetes who are under 21 years of age.

Since then, despite petitions, reports, letters and plenty of scientific evidence on the clinical benefits and improved quality of life for those who use the technology, adults with diabetes in Ireland still have to pay privately for it.

The national diabetes charity, Diabetes Ireland, carried out a survey to assess the impact of this. Some 754 people took part, making it the largest survey of the diabetes community in Ireland ever undertaken. Participants included people with both type 1 and type 2 diabetes who currently use the FreeStyle Libre, or have used it in the past, people who have never used it, parents who replied on behalf of their children with type 1 and healthcare professionals.

The section of the survey aimed at people with experience of the FreeStyle Libre was filled our by 441 people.

Among 292 adult users of the FreeStyle Libre, 216 of these have to, or have had to, pay for it privately. The minimum monthly cost of the device is €120 – almost €1,500 per year.

A further 131 people said they are not using the FreeStyle Libre anymore mainly due to its cost, while 152 adults said they have never tried the technology and the main reason given for this is because they cannot afford it.

 “I have to choose between better diabetes management or paying bills,” one adult with type 1 diabetes commented.

The reimbursement of FGM under the Long-Term Illness Scheme (LTI) and removing the current age limit has been listed in Diabetes Ireland’s Pre-Budget Submission 2022 as a priority.

“We can observe the increasing frustration among the diabetes community. Parliamentary questions asking about the unavailability of Freestyle Libre in Ireland are the most popular diabetes-related submissions to the Minister for Health,” noted Fianna Fáil TD, Cormac Devlin, who is chairperson of the Diabetes Cross Parliamentary Group.

The HSE had commissioned a full Health Technology Assessment for the Freestyle Libre in late 2021, however, for reasons unknown, 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 has done.

This survey formed part of that submission. It was carried out online in November 2021.

“We were overwhelmed with the response from the diabetes community. The data clearly show how important glucose monitoring technology is for people living with this burdensome condition, how it improves diabetes management, safety and most importantly quality of life,” commented Dr Kate Gajewska, Diabetes Ireland’s clinical manager for advocacy and research.

She noted that some people use FGM “only for a month and then have a break to save money for the next month”, a situation she describes as “disheartening”.

The FreeStyle Libre is reimbursed in almost all European countries and national data from their registries show how it improves outcomes in those living with diabetes.

Meanwhile, among healthcare professionals who took part in the survey, most have experienced the rejection of applications made on behalf of patients by the HSE “with no explanation provided”.

Dr Gajewska said this raises the question of whether the HSE respects the clinical judgement and expertise of HCPs.

“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 a patient?”

Furthermore, according to consultant paediatric endocrinologist and chairperson of Diabetes Ireland, Prof Hilary Hoey, “what is difficult to understand is that some HCPs who have their FGM applications rejected, then request a more expensive continuous glucose monitoring device for their patient and these are much more likely to be approved”.

Diabetes Ireland is calling for the removal of the age restriction currently in place for the Freestyle Libre so that there is equal access to the technology for everyone based on clinical need.