Virginia A. LLera, MD, is an Argentinian-born physician trained in psychiatry. Following the diagnosis of a rare disease in her daughter, Dr. LLera became aware of the many difficulties facing Latin American rare disease patients. She consequently founded the GEISER Foundation in 2001, a regional initiative designed to pool rare disease resources. Here, Dr. LLera describes for OrphaNews Europe the situation of rare disease patients in Latin America and the Caribbean as well as the initiatives underway to address their needs:
Latin America is a subcontinent characterised by sharp social and economic contrasts. With few exceptions, the Latin American and Caribbean countries are small economies whose development has been slowed by poorly organized administrations and a lack of policies with long-term objectives. In this context, the fact that both the Pan American Health Organization (PAHO) and the World Health Organization (WHO) consider that the greatest inequities in health care provision, distribution and expenditure are found in Latin America and the Caribbean comes as no surprise.
Living with a rare disease is a dramatic experience in Latin America and the Caribbean, since this region lags behind in economic and educational development, and inequalities in sanitary conditions permeate even the most basic social determinants of health, such as food, housing, education, or work. The lack of assistance available to rare disease patients involves deficiencies in economic and educational structures and impinges upon the natural rights of minority groups.
Nevertheless, Latin America and the Caribbean may turn out to be key participants in the search for solutions for rare disease sufferers as far as access to diagnosis and treatment are concerned. Latin America and the Caribbean can make important contributions towards improved health care management for a number of reasons: the region has a large pool of patients, specialists, researchers and other human resources; it can help bring down global development costs and produce diagnostic and therapeutic tools affordable to the populations of developing countries; and it may expand the health care market considerably, thereby lowering investment risks for the industry.
Rare diseases constitute the most inequitable area in health care, even in countries that have the most equitable health systems in the world. Thus, quite paradoxically, even though Latin America and the Caribbean show the greatest inequalities in health care, this region could become an important contributor towards balancing the issue on a global scale.
At present there is no firm rare disease legislation in place, nor is there an organization comparable in magnitude or experience to the European framework. People living with rare diseases find themselves discriminated against by today's health care systems, a situation which encourages them to network with other patients who may suffer from completely different medical conditions but share similar social and sanitary problems. For this reason, several non-governmental organizations (NGOs) created by affected individuals and their families, specialized physicians or other vested interests, have set up support and advocacy groups, some of which form part of international associations. These groups, however, have little real chance to change the situation in Latin America and the Caribbean, because global health care patterns follow priorities that do not adequately reflect the particular concerns of this region. Hence, there is a need for an organization that can encompass all of these initiatives on a regional level and interact with counterpart organizations in the United States and in Europe on an equal footing.
A first step toward union and organization was born in the Andean city of Mendoza, Argentina, where a group of health care professionals, patients and families affected by rare diseases created the GEISER Foundation (Group of Linkage, Research and Support for Rare Diseases), an umbrella organization designed to liaise with all of the rare disease associations in Latin America, identifying their shared needs and interests and fostering political, social and educational action to promote the common good. GEISER regards the problems pertaining to rare diseases and orphan drugs as matters of global interest and therefore seeks to bring together regional associations and organise them at the same level as their counterparts in the developed world, following the lead of the European Organization for Rare Diseases (EURORDIS) and the American National Organization for Rare Disorders (NORD). GEISER is building the power to draw resources and direct them towards achieving its goals, and considers its most valuable asset the unwavering determination of tens of associations scattered across Latin America that have already endorsed the Foundation's ideas. During the past five years, the GEISER Foundation has organised regional meetings with very positive response, and currently is working to arrange the first Latin American conference on rare diseases, scheduled to take place in Buenos Aires, on 27-29 March, 2008. It is expected that on such an occasion, a sub-continental organization capable of interacting with EURORDIS and NORD will be created to collaborate with these allies to change the history of inequalities in rare diseases in Latin America, the Caribbean and the rest of the world.
Indeed, the issue of rare diseases and orphan drugs should be addressed rationally from a global perspective, in order to accelerate changes and maximise available resources. Since there are very few rare disease patients in each region, they cannot depend upon local policies or conditions; rather, they should be able to rely on international strategies designed to develop unified diagnostic and treatment methods, a single, profitable channel of health products distribution and an organised network to facilitate access to health care resources. The coordinated participation of all Latin American countries is essential to cooperate with multicenter studies and research centers working on diagnostic and treatment techniques, and to promote initiatives for regional development and harmonised sanitary, legal and educational policies. At the same time, such participation will considerably expand the market for health care products, thus helping improve investment returns and reduce costs.
One of the aims will be to make access to diagnosis and treatment more readily available within the region. In order to achieve this goal, it will be necessary to reach international consensus on regulations and funding. Should some of these changes be implemented in the region, they will also have an impact on the rest of the world. Measures taken to address regulatory and intellectual property issues in the field of rare diseases could also be adapted to rectify inequities in neglected diseases, which are one of the most pressing problems in Latin America and the Caribbean.
This could be the first opportunity for Latin America and the Caribbean to begin serious work on harmonised, comprehensive policies; surely the experience and benefits derived from such work will have a positive influence on other social and sanitary structures in the region.
Contact Virginia LLera