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Revista chilena de neuro-psiquiatría

versão On-line ISSN 0717-9227

Resumo

NOGALES-GAETE, Jorge et al. Pilot national treatment program for Multiple Sclerosis patients belonging to the public health care system of Chile (FONASA) with immunomodulating disease-modifying therapies: First year report from July 2008 to June 2009. Rev. chil. neuro-psiquiatr. [online]. 2010, vol.48, suppl.1, pp.9-92. ISSN 0717-9227.  http://dx.doi.org/10.4067/S0717-92272010000100002.

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 chosen MS disease-modifying drug. The selected one for this particular stage of this exploratory program was interferon beta (IFNb)-la (Avonex) 30 mg considering similar effectiveness to other drug and administration once weekly. This also let us, in this institutional administration model, to interfere the less possible the patient's life and adequate progressively the national public health net. This program means a significant advance in the access equity to a treatment of high cost. In the 86% of the cases who qualified the month economical income of the family group is less than the amount required to pay a month of treatment so their access to treatment would be impossible through other means. The national reference center has carried out the tasks of selecting and evaluating all the patients for treatment, monitoring their evolution and defining any failure in the treatment. The clinical epide-miological basal data obtained is unprecedented information in our country probably being the most numerous group of patients with MS whose evaluation had been done by the same team and with a rigorous protocol in common. The information considered: general demographic data, clinical data, neurological exams, photographic record of security and diagnosis exams. The sample was evaluated through diverse scales: EDSS, Multiple Sclerosis Functional Composite, Brief Repeatable Battery of Neuropsychological Test in Multiple, Sclerosis, Fatigue Severity Scale, Profile of anxiety and Mood States, and Labor or Productivity Impact. The success in the first year of the exploratory program has allowed us to make progressive arrange-ments to extend the access criteria and decentralization the clinical process. In the second year we have achieved to advance in an increase in the amount of new 100 places for treatment, so that, more than 100% of the original places. The new challenges are now to improve the access in the diagnosis exams MRI and the differential diagnosis of MS. The independent perseverant and positive push and work done by the patients associations has helped and supported the MS pilot program though completely different ways putting in agenda of the communication media and political authorities the MS problem. As a result of this Pilot MS treatment program, patients requests and public health authorities decisions, by the end of 2010, by law "relapsing remitting MS" will be part of the explicit guarantees national program (GES-AUGE) considering unlimited amount of places for treatment, including all the first-line MS disease-modifying drugs, symptomatic treatment, rehabilitation and psychological support.

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