OBJECTIVES: Retinitis Pigmentosa (RP) is a rare inherited retina disease that significantly impact patients’ lives, leading to complete blindness. In LATAM, there is scarce data on the burden of the disease. This cost of illness study describes the unmet needs and economic burden of RP in Brazil and Mexico, from societal perspective.

METHODS: we conducted a scoping literature review to collect data on RP management. Then, blinded, semi-structured, online, in-depth interviews with medical experts collected data on healthcare resource use, unmet needs and quality of life. Participants were from both private and public healthcare settings. Unit costs were obtained from published references and the results were reported with descriptive statistics.

RESULTS: 4 medical experts and 1-2 patient association groups per country were interviewed. An average (SD) of 203 (82) and 468 RP (112) patients are treated annually per expert in Mexico and Brazil, with approximately 20% being X-Linked RP patients on both countries. In Mexico and Brazil, 78% and 79% of RP patients present peripheral vision loss, and 33% and 23% are considered legally blind, respectively. The average of total annual cost per RP patient is 1.9k USD and 2.4k USD in Mexico and Brazil, respectively, with a total annual cost of 50M USD and 102M USD. Of the total costs, the largest proportion is related to indirect costs (53% and 61% in Mexico and Brazil, respectively), with 33% and 37% of total costs related to productivity losses. Main reasons include patients leaving their jobs or reducing working hours due to difficulty to adapt, discrimination, among others. The main unmet medical needs reported are lack of treatments and disease knowledge, and delayed diagnosis.

CONCLUSIONS: the results suggest a significant impact of RP, with most of the economic burden relying on indirect costs, such as productivity loss.