10 priorities to improve life with type 1 diabetes

These results show the specific concerns of each of the two groups. Differences in the priorities highlighted in the survey can be explained by the age of the person living with T1D and the years spent with diabetes.

Three major priorities

Although the priorities order varies slightly, it’s interesting to see that reducing the cost of T1D, finding a cure and improving technology are top priorities for both groups.

• Reducing diabetes-related costs

Highlighted by about 66% of people living with T1D and 51% of their caretakers, reducing the costs associated with T1D (e.g, financial support for technologies, treatments, care) stands out as one of the highest priorities. 

Despite the existence of government or private insurances, there are many situations (e.g., aging, loss of employment) where the unavoidable and essential costs of living with T1D become a significant burden. These costs can be a barrier to accessing certain treatments, technologies (e.g., CGM, insulin pump) or diabetes-related care (e.g., consultation with a mental health professional).

• Intensifying efforts to find a cure

At the top of the list for family members with 58% of the vote, and chosen by 45% of people living with T1D, the search for a cure (e.g., a drug-free transplant to prevent rejection) emerges from this survey as a priority. For many years, hope has been fueled by the idea that the discovery of a revolutionary treatment to cure T1D was imminent. Despite some notable advances, particularly in stem cell research, a cure might still be far away and thus the race to finding one remains a significant priority. 

• Improving technologies

Selected by 48% of people living with T1D and 31% of their family members, improving technologies (e.g., artificial pancreas, continuous glucose monitors) for managing T1D emerges as a priority in this survey. While waiting for a cure, technologies offer a solution to improve the quality of life for people living with T1D when accessible (e.g., reimbursement by insurance companies). Although new versions are constantly being developed, there are still many improvements to be made to the technology itself, such as reducing the size of devices, improving the performance of artificial pancreases, increasing the wear time of devices, and providing better communication between devices (e.g., smartwatches).

Other major issues

The survey also highlights other key concerns, such as the need to increase efforts in prevention, diagnosis and strategies for mental health (e.g., distress, exhaustion, eating disorders). The search for better treatments (e.g., new, more effective or safer insulins, evaluating the place of drugs commonly used in type 2 diabetes) and dietary strategies (e.g., simplifying carbohydrate calculation) also emerges in the top 10 priority themes.

People living with T1D also stressed the importance of considering aging with the disease, particularly by better understanding its evolution over time and addressing aging specific concerns. They also expressed the need to improve access to care and health resources for all through online training platforms, especially for those living alone, the elderly, those in remote areas, marginalized groups, or those with lower socioeconomic status. Other priorities include reducing the environmental impact of diabetes-related waste by promoting the use of reusable devices, reducing administrative burdens by simplifying paperwork and insurance forms, and researching new strategies to facilitate physical activity and its management.

Caretakers highlighted pediatric specific concerns, such as improving the transition to adult care (moving from pediatric to adult care services during adolescence and early adulthood). They also stressed the need for more T1D training for various key people who might be involved in the person’s care (e.g., for people living with the disease, family, caregivers, healthcare professionals, schools, bus drivers). Another important priority pointed out by relatives was the importance of improving screening of at-risk individuals and prevention of T1D, in particular through the use of genetic testing or medications to delay T1D development. Finally, they highlighted the need to find ways of protecting residual pancreatic function at the time of diagnosis (i.e. pancreatic cells that may still be functioning), which could greatly simplify the management of T1D.

Calls to action

In addition to the results of this survey, the experience-sharing in the BETTER registry – the Canadian registry of people living with T1D (or LADA) – is helping to strengthen the collective effort to improve access to treatments and technologies. With over 3,800 current participants, this registry represents a valuable resource. The greater the number of participants, the more influential the registry will be in supporting these advocacy initiatives!

The priorities identified in this survey are not mere wishes, they are calls to action, crucial indications of where concrete improvements could really make a difference. As such, they provide a solid basis for discussion, food for thought, and concrete action to collectively improve life with T1D.