Spatial Justice in Cross-border Healthcare. The Case of European Reference Networks for Rare Diseases

Authors: Tom Schwarzenberg*, Leibniz-Institute for Regional Geography
Topics: Political Geography, Medical and Health Geography, Geographic Theory
Keywords: Cross-border Healthcare, European Integration, Borders, Brexit, Rare Diseases, Spatial Justice
Session Type: Paper
Day: 4/6/2019
Start / End Time: 9:55 AM / 11:35 AM
Room: Marshall South, Marriott, Mezzanine Level
Presentation File: No File Uploaded


Equal access to healthcare is increasingly becoming an issue of European Integration. Complex negotiations of EU patients’ rights as well as numerous border-transcending pilot projects point towards changing Geographies of healthcare in the EU. This contestation of historically nationalized boundaries of welfare distribution, however, is persistently crossed by claims of territorial sovereignty in the field of health policy. Recent Brexit debates, for example, have vividly mirrored the fragile balance between national prioritization and European cohesion. While domestic NHS-funding was prominently instrumentalized by Leave campaigners, notions of ‘taking back control’ have equally been opposed by insecurities in terms of cross-border treatment opportunities for UK citizens. In order to better understand this characteristic tension between territorially selective healthcare systems and increasingly entwined medical infrastructures in the EU, the paper empirically focuses on the newly established European Reference Networks for Rare Diseases (ERNs). At present, these ERNs unite over 900 healthcare providers across the EU constituting 24 highly specialized networks. While each network is dedicated to improving individual diagnosis and treatment of a particular rare disease group, this ambitious endeavor faces multiple challenges; ranging from financial compensation and data security to reviving protectionism in EU politics. Based on a series of qualitative interviews with involved actors, the paper reflects on how this gap between border-transcending ambitions and opposing regulatory mechanisms is navigated within the respective cooperation practices. It will thereby be illustrated, how the constitutive reference to volatile notions of spatial justice in healthcare simultaneously transcends and incorporates notions of bordered health systems.

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