Programa piloto para pacientes beneficiarios de Fonasa, que padecen Esclerosis Multiple: Tratamiento con Inmunomoduladores en el Sistema Público de Salud de Chile. Informe del primer a?o, 10 de julio 2008-30 de Junio 2009

摘要

Multiple Sclerosis (MS) is a chronic disease of the central nervous system. It is manifested in the young adult who presents at the beginning alternation between transient neurological dysfunction and normality, followed by a progressive level of disability. MS affects the quality of life in the young adults in their full productive and creative age limiting not only in their personal lives but also affects to the whole society in terms of "dreams and life projects". Besides, this illness also influences the family group who has to assume progressively the help and care for the patient. In healthcare aspect MS implies intensive and progressive resources. In Chile, although we don't have epidemiological studies that indicate which is the MS prevalence it exist a projection that states 14 per 100.000 inhabitants. Considering a population of 16.5 million of inhabitants our expectative of patients with MS is of 2310 cases in our country. The MS immunomodulating injectable disease-modifying therapies are of high cost and were not available in a regular way in the state health care system of Chile (FONASA) that attends the 70% of the population; the other 30% has different prívate health insurances. In 2008 the ministry of health decided to initiate and pilot (exploratory) program which had a great meaning and impact concerning to start offering immunomodulating therapies to relapsing remitting MS, for patients belonging to FONASA system. The pilot program was thought with a double mission, on the one hand to achieve that a very limited group of MS patients belonging to FONASA system (80 cases) from all over the country had access to immunomodulating injectable disease-modifying therapies of high cost in a regular way. The second objective was to obtain clinical and epidemiological information which let us to evalúate the clinical and administrative obstacles generated by the incorporation of this treatment in the public health net. As the effectiveness of this treatment has been very well documented it wasn't considered as an objective in this program. The chosen number of 80 cases to be treated in the first year of the pilot program (June 2008-2009) wasn't related to any study methodology, special sample o literature review conclusions, it was just determined by the relation of máximum amount of the available economical resources assigned at the starting of this initiative. In that moment the dilemma was to wait for more resources or simply to take the opportunity and push forward making progress in the daily hard working routine. Probably the 80 cases represent 10% of the relapsing remitting MS cases, belonging to FONASA system, with classic indication to treat with immunomodulating therapies (non progressive forms with EDSS < 7). The pilot program has been fulfilled successfully for the 80 cases during the first year. At the present (December 2009) there are 110 patients in treatment from Arica to Punta Arenas what means we have advanced in a significant way not only in the patient's treatment but also in the territorial equity access in a long but very centralized country. Taking as reference Santiago the capital of the country, Arica is 2069 kilometers in the northern boundary and Punta Arenas is 3115 kilometers in the south. The first criteria used to choose the patients to be admitted in the program not only answered to effectiveness and safety purposes, proper of any kind of treatment, but also gave an ordered and sensible offer of a place which were presumably insufficient. With this protocol the 100% of the patients who were able to fulfill the inclusión criteria could enter to the program. For this program we made the option for the institutional administration of the injection treatment directly observed having in the mind the objectives of: preventing that it was just the selected beneficiary who received the treatment and monitor the adherence and adverse effects. The administrative modality was determinant in the cho