Health Systems Sustainability and Rare Diseases

• Published in: Advances in experimental medicine and biology Vol. 1031; pp. 629 - 640
• Main Authors: Ferrelli, Rita Maria, De Santis, Marta, Egle Gentile, Amalia, Taruscio, Domenica
• Format: Book Chapter Journal Article
• Language: English
• Published: Cham Springer International Publishing 2017
• Series: Advances in Experimental Medicine and Biology
• Subjects: Austerity; Delivery of Health Care, Integrated - economics; Delivery of Health Care, Integrated - organization & administration; European Reference Networks; Fiscal equity; Health; Health equity; Health Equity - economics; Health Equity - organization & administration; Health Services Accessibility - economics; Health Services Accessibility - organization & administration; Health system sustainability; Healthcare Disparities - economics; Healthcare Disparities - organization & administration; Humans; Program Evaluation; Rare Diseases - diagnosis; Rare Diseases - economics; Rare Diseases - epidemiology; Rare Diseases - therapy; Resilience; Austerity; European Reference Networks; Health equity; Health system sustainability; Fiscal equity; Resilience
• ISBN: 9783319671420; 3319671421
• ISSN: 0065-2598; 2214-8019
• DOI: 10.1007/978-3-319-67144-4_33

The paper is addressing aspects of health system sustainability for rare diseases in relation to the current economic crisis and equity concerns. It takes into account the results of the narrative review carried out in the framework of the Joint Action for Rare Diseases (Joint RD-Action) “Promoting Implementation of Recommendations on Policy, Information and Data for Rare Diseases”, that identified networks as key factors for health systems sustainability for rare diseases. The legal framework of European Reference Networks and their added value is also presented. Networks play a relevant role for health systems sustainability, since they are based upon, pay special attention to and can intervene on health systems knowledge development, partnership, organizational structure, resources, leadership and governance. Moreover, sustainability of health systems can not be separated from the analysis of the context and the action on it, including fiscal equity. As a result of the financial crisis of 2008, cuts of public health-care budgets jeopardized health equity, since the least wealthy suffered from the greatest health effects. Moreover, austerity policies affected economic growth much more adversely than previously believed. Therefore, reducing public health expenditure not only is going to jeopardise citizens’ health, but also to hamper fair and sustainable development.