Health systems sustainability and rare diseases

Research output: Chapter in Book/Report/Conference proceedingChapter

Abstract

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.

Original languageEnglish
Title of host publicationAdvances in Experimental Medicine and Biology
PublisherSpringer New York LLC
Pages629-640
Number of pages12
DOIs
Publication statusPublished - Jan 1 2017

Publication series

NameAdvances in Experimental Medicine and Biology
Volume1031
ISSN (Print)0065-2598
ISSN (Electronic)2214-8019

Keywords

  • Austerity
  • European reference networks
  • Fiscal equity
  • Health equity
  • Health system sustainability
  • Resilience
  • Rare disease

ASJC Scopus subject areas

  • Biochemistry, Genetics and Molecular Biology(all)

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  • Cite this

    Ferrelli, R. M., De Santis, M., Egle Gentile, A., & Taruscio, D. (2017). Health systems sustainability and rare diseases. In Advances in Experimental Medicine and Biology (pp. 629-640). (Advances in Experimental Medicine and Biology; Vol. 1031). Springer New York LLC. https://doi.org/10.1007/978-3-319-67144-4_33