Evaluating health policy and legal responses : how to reduce barriers and improve access to orphan drugs for rare diseases in Canada

Abstract : Rare diseases are debilitating conditions often leading to severe clinical manifestations for affected patients. Orphan drugs have been developed to treat these rare diseases affecting a small number of individuals. Incentives in the legal framework aimed to recoup the research and development cost of orphan drugs for pharmaceutical companies have been implemented in the United States and the European Union. At the present time, Canada is still lacking a legal and policy framework for orphan drugs. Several problems at the federal and provincial levels remain: lack of research funds for rare diseases, discrepancies on orphan drug policies between provinces, difficulties to access and reimburse these high price drugs. Recommendations and measures are proposed, such as a pan-Canadian (national) scientific committee to establish evidence-based guidelines for patients to access orphan drugs uniformly in all provinces with a disease specific registry, a formal agreement for a centralized Canadian public funding reimbursement procedure, and increasing the role of “guardian” for prices by the Patented Medicines Review Board in Canada. These recommendations and measures will be beneficial for the implementation of a policy framework for orphan drugs in Canada.

Local savings and credit organizations : towards an innovative approach for rural Zimbabwe

Résumé : L'épargne et le crédit sont reconnus comme deux éléments clés du développement économique. Or, jusqu'à ce que les membres défavorisés d'une communauté aient accès aux ressources et services financiers, ils seront toujours privés de la participation au processus du développement et des bénéfices qui pourraient s'en suivre. La recherche indique que les services des prêts offerts par les institutions officielles ne parviennent que rarement aux plus pauvres de la société, qui sont obligés par conséquent de dépendre des intermédiaires informels comme les groupes d'épargne et les usuriers. Diverses organisations sur place comme les coopératives ont essayé de répondre aux besoins du développement des communautés défavorisées. Dans ce contexte, nous ferons d'abord le bilan historique et international des coopératives d'épargne et de crédit (i.e. les caisses populaires). Ensuite, nous analyserons quatre autres tentatives récentes qui eurent pour but de créer de nouvelles formes d'institutions financières, de les développer de telle sorte qu'elles offrent un degré d'accès raisonnable, sinon privilégié, aux ménages de revenu inférieur. L'analyse de ces cas-ci (venant du Zimbabwe, de l'Inde, du Ghana, et du Bangladesh) permettra d'identifier leurs caractéristiques communes et divergentes. À partir des résultats de cette analyse, un projet pilote au Zimbabwe fut initié pour élaborer une stratégie appropriée qui faciliterait le développement d'un réseau de caisses rurales. L'analyse théorique, la mise en pratique du projet, ainsi que les conclusions subséquentes soulignent l'importance de la participation directe des communautés à l'élaboration des organisations populaires. Il est évident que ces méthodes sont de loin plus efficaces que celles basées sur des politiques et des structures uniformes et compréhensives.||Abstract : Savings and credit are recognized as key elements of economic development, but until such time as disadvantaged members of the community have access to financial resources and services, they are obstructed from participating fully in the development process. Experience has shown that formal institutional credit bas rarely reached the poorer sectors of society, who have had to rely on informal intermediaries such as savings groups and money-lenders. Local organizations such as co-operatives have attempted to respond to the development needs of disadvantaged communities, and the historical and international record of savings and credit co-operatives (i.e. credit unions) is examined in this context. Four recent initiatives to design and develop new forms of financial institutions that give fair if not favoured access to low-income housebolds are also identified. These cases (from Zimbabwe, India, Bangladesh, and Ghana) are examined in an effort to identify common and divergent characteristics. Following from this analysis, a pilot project in Zimbabwe was initiated in an effort to elaborate an appropriate strategy for development of a network of rural savings and credit organization. The theoretical analysis, field exercise and subsequent reflections highlight the need for participatory methods of organizational design and development, rather than any all-encompassing structural or policy guidelines.