When the system fails: Barriers to type 1 diabetes medication access and the emergent role of social media support

AIMS: People with type 1 diabetes (T1D) often face systemic failures in healthcare delivery. As a result, some turn to social media to seek assistance from others within the T1D community. This study explores the challenges people with T1D face in accessing insulin and diabetes devices, the resulting health consequences, and the strategies they use to navigate these obstacles. METHODS: Thirty adults with TID or caregivers of youth with T1D (25 adults, 5 caregivers) who had sought support through social media for diabetes medications and supplies participated in semi-structured telephone interviews. Qualitative thematic analysis generated themes about the types of barriers encountered, how individuals responded and the health consequences of barriers to medication and supply access. RESULTS: Themes reflected multilevel barriers to diabetes care, including system-wide failures in access, coordination and delivery; difficulties affording insulin and diabetes devices; personal sacrifices and rationing behaviours in response to access challenges; and serious health consequences resulting from delayed or disrupted care. People encountered challenges with coverage, benefits, and approvals from insurers, pharmacies and durable medical equipment companies, and overlapping problems with affordability. Some experienced life-threatening situations, such as diabetic ketoacidosis, when unable to get needed medicines or supplies. The accessibility of the T1D community through social media was seen as a valuable resource during emergencies when no other options were available. CONCLUSIONS: This study underscores the substantial barriers individuals with T1D encounter when accessing essential medications and supplies within the healthcare system. The findings highlight the pivotal role of social media in facilitating rapid support from the T1D community during times of urgent need. Addressing these systemic challenges is essential for enhancing healthcare access and improving health outcomes for individuals with T1D.