True “costs” of neurological illness in human immunodeficiency virus patients in a “free” health facility

Objectives: Human immunodeficiency virus (HIV) infection and neurological illness cause heavy financial burden to the patients. The economic costs of each of the disease have been reported in many studies, but the toll of both together on the patients has not been studied clearly. As neurological illnesses are seen in up to one-third of HIV patients, the combined costs need to be understood. Even with free public health services, there are out of pocket expenditures on the patients. Material and Methods: In the tertiary Government General Hospital, Guntur in India, we studied the out-of-pocket costs of time and money borne by 50 HIV-seropositive individuals hospitalized for a neurological illness during April and May 2019. We obtained data from the patients and caregivers by face-to-face oral questionnaires. Results: The median duration of HIV infection was 2.5 (IQR 0.4–7.8) years. A high proportion of our patients (20/50) was diagnosed with tuberculous meningitis. The total median time lost by each HIV-seropositive patient due to neurological illness (private consultation, travel, and hospital stay) was 27.5 (8.7–134.3) days. The total median financial burden due to neurological disease requiring hospitalization (travel, food and medicine, wages lost, private consultation expense, and loans incurred) on each patient was ₹19,150 (855–59881). Conclusion: HIV patients with neurological illness are burdened by heavy costs of time and money. They are forced into debt and lose substantial wages, most of it due to private consultation.