Epigraph Vol. 13 Issue 1, Winter 2011
The History of the Chilean League
Excerpted from a full report by Carlos Acevedo
The Chilean League Against Epilepsy (LICHE) began quietly in 1953 when Dr Alfonso Asenjo started it at the Neurosurgery Hospital in Santiago, Chile where it remained for its first 30 years. It was run entirely by the volunteer efforts of the physicians’ wives, with the primary goal of delivering antiepileptic medicines to the hospital’s patients, because, at the time, epilepsy-related treatment in Chile was located solely at that one hospital. It operated out of a small building next to the hospital until 1982, when the host of a television show donated a small house in downtown Santiago, at some distance from the Neurosurgery Hospital. This small but generous donation proved to be a key step for the future of LICHE.
Because of its new location, the previous physician members could no longer participate regularly, so a new Board of Directors consisting of six physicians and six volunteers was established with the primary goal of expanding the reach of operations. Very quickly the Board decided that a major effort should be made to get antiepileptic therapy to all Chileans in need. They used the non-profit status of the organization to develop a unique Drug Bank to sell antiepileptic drugs at a discount to those who could afford them and to use the profits to subsidize the costs to patients with limited or no financial resources. They obtained drugs at reduced cost or donated from pharmaceutical companies and sold them to patients with insurance or financial means at a discount of 20% below what they would pay at a standard pharmacy. Initially there was only one drug provided, but with time, as the demand grew, more drugs were added, until all became available. To make this plan work, physicians referred their patients to the Drug Bank, and, over time, it has become the primary source of medicine for patients with epilepsy. Social workers have been involved from the early stages, as they evaluate patients for their financial means and needs and determine what an appropriate contribution is from the patient for the medicines received. In 2009, the Drug Bank provided $894,000 in subsidies to its clients for the purchase of medications, and the number of visits had grown to 533,000, an increase from 360,000 in 2005.
The growth in the Drug Bank has been spectacular. Starting from a single house in downtown Santiago, it expanded to seven Drug Banks within the city, and there are now Drug Banks in the country’s major cities, serving 90% of the population in Chile. The success of the Drug Banks and the hard work and commitment of the volunteers has allowed LICHE to expand its services. First, it created a social work system that advised people on issues involving family, education and work. Next to come were two educational centers, one to work with children with epilepsy and learning difficulties, and the second for adolescents and adults with epilepsy and mental disabilities to train them to work and to provide a sheltered work environment. Finally a free standing clinical center was established to diagnose and manage epilepsy of varying complexities. This center includes a laboratory for following blood levels of drugs and for recording EEGs.
The creation of the Drug Bank was not something done on a whim. There were a number of legal and regulatory issues that had to be resolved, and LICHE worked closely with the authorities in assuring that all requirements were met. With each new drug added, there were regulatory steps that had to be taken. As the program grew and was successful, it was also recognized that patients with epilepsy had other comorbid conditions that needed treatment. As a result, drugs for psychiatric issues were added to the list of medicines provided by the Drug Bank. Psychiatrists and neurologists routinely send their patients with epilepsy to the Drug Bank for their medicines and in 2009, there were over 533,000 visits to LICHE’s facilities. This volume of activity cannot be supported by volunteer efforts alone, so over the years a group of professionals, including business managers have been employed to assure that operations run smoothly and meet regulatory requirements. They also make sure that the program appears in the media from time to time so that the efforts of LICHE are more widely recognized and that public support continues.
The success of this program, which has quietly been delivering high quality services to patients for decades, has been the result of a very original idea on how to assure that patients with epilepsy can obtain their medications, the hard work of many volunteers, and the commitment of patients, physicians, social workers and teachers among many others, to a common cause of helping one another. This outstanding example of an epilepsy success story began in a small room next to a hospital almost 60 years ago, and received the essential boost from the gift of small house that became the center a national effort driven by the energy of many.
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