OBJECTIVES: Analyze Progressive Primary Multiple Sclerosis (PPMS) from different perspectives: cost of the disease from international view, and use of healthcare technologies and their associated cost from national official databases.

METHODS: An extended review of literature of the costs of PPMS in databases such as Medline, Embase, Econlit and INAHTA and gray literature (academic events) was conducted. The Social Protection Information System (SISPRO), official source in Colombia, was consulted to calculate the use of resources. The costs per year and the transition probabilities according to the EDSS scale in PPMS from published information were taken as reference to calculate the cost of progression in Colombia, since the country does not have this information available.

RESULTS: 187 articles and posters were found and 18 were selected. In Colombia based on the orphan disease patients census (2013), the costs per MS patient with non-disability was 8.153 USD and with disability was 10.079 USD. SISPRO (2009-2017) showed that patients with MS required 15.119 health procedures, 1.579 hospitalizations, 8.819 consultations and 1.262 emergency care. The direct costs, based on published information, in EDSS from 4,0 to 7,0 were: 5.790 USD/patient with an estimated progression time of 7,9 years. Only 15% of these patients can be employed full time and 40% of the main caregivers lost 40 working-days/year which is significantly higher than in other MS subgroups. In Colombia, the progression cost from EDSS 4,0 to 7,0 in 252 patients with PPMS, according to the 2016 national registry, was 1.233.889 USD. All costs are base year 2016.

CONCLUSIONS: PPMS is chronically disabling disease and generates increasing economic burden to the healthcare system, high economic dependence of patients and significant loss of productivity for caregivers. Therapeutic alternatives that control progression would significantly contribute to minimize the social and economic impact of this pathology.