Background and aims Prior investigations into the economic costs of Systemic Lupus Erythematosus (SLE) among affected individuals have primarily been quantitative and focused only on direct costs. Given that SLE predominantly impacts patients during their prime working years and symptoms can be complex, this research employs a qualitative approach to explore and contextualise the direct as well as indirect costs incurred by Canadian patients with SLE.

Methods Semi structured in-depth interviews were conducted with 8 key informants (3 expert physicians, 5 representatives from patient advocacy groups) and 28 adult SLE patients. Interviews were audio recorded, transcribed verbatim and coded for recurring themes.

Results Findings reveal that the early manifestations of the disease significantly rerouted the course of participants’ economic livelihoods, often to part-time precarious employment and in some cases forced them to leave the workforce all together. A lack of health insurance benefits and poor health coverage for complementary care created additional expenses. Openness about diagnosis within the workplace varied greatly amongst participants, though all noted the challenges created by a general lack of information and public awareness about SLE. The use of workplace accommodations was met with mixed success and greatly depended on the work setting.

Conclusions Changes within Canadian policy could improve access to resources for promoting healthy lifestyles and disease management for those with SLE which, in turn, would serve to enhance economic security. This research adds deeper understanding to the widespread and multifaceted costs associated with SLE, elucidating the long-term consequences of SLE and its implications for social policy.