ABSTRACT Clinical relevance Few studies have investigated the economic burden of keratoconus to patients and society including a patient’s lifetime expenditure. Analysing disease cost is important in advocating funding and planning for appropriate management and treatment. Background Keratoconus can be an expensive disease, including costs associated with visual rehabilitation and surgery. This study aimed to assess direct and indirect expenditures incurred by keratoconus subjects, to estimate the lifetime per capita cost and the total costs of keratoconus per year in Auckland, New Zealand. Methods A cross-sectional study where participants with keratoconus were recruited from public and private clinics to complete an anonymous questionnaire. A keratoconus health expenditure questionnaire was used to assess direct and indirect expenditures for participants. Estimated lifetime per capita costs and total direct and indirect costs associated with keratoconus were calculated. Results Responses from 110 participants were recorded. Most participants (55.5%) were between the ages of 21 and 30, 59.1% were male, and Pacific People were over-represented (14.5%) compared to the national population. The prevalence of visual rehabilitation was low with 74.5% of participants never wearing contact lenses and 32.7% of subjects wearing spectacles purchased over 24 months prior. Few participants (26.5%) had subsidised care, including private health insurance with optical cover or the contact lens subsidy. Total direct and indirect costs are estimated to be NZD 30.9 million per year with an estimated lifetime per capita out-of-pocket cost of NZD 79,254. Conclusion Subjects with keratoconus experience significant direct and indirect costs with limited subsidisation from the government and private health insurance. The significant out-of-pocket costs required for managing keratoconus are likely a significant barrier to accessing appropriate visual rehabilitation in New Zealand.