Prof. Rob Hagendijk, Amsterdam. "The politics of rare diseases and orphan drugs"

Abstract: In 2012 a major controversy started in The Netherlands after a proposal was leaked to the media to stop reimbursing patients with Pompe or Fabry disease under the public health system. The high prices for drugs (between 150,000 and 800,000 Euro annually) and their low cost-efficiency inspired the proposal, then a draft to be discussed in the College for Public Health Insurance. The prime time TV coverage of the news caused public outrage and negative responses from all corners of society, including patients, professionals, columnists, members of the general public and politicians. The controversy calmed down a bit six weeks later, yet it took until late 2013 for a temporary solution for the next two years only to be arranged by the Minister for Public Health. The solution comprises price reductions, post-marketing research to improve cost-efficiency and increased European and international collaboration. In my presentation I will look at the controversy from a co-productionist perspective (Jasanoff, 2004, Hilgartner et al. 2015) and analyse how the biosciences and informatics become increasingly interwoven with major political and economic struggles. This controversy and associated ones elsewhere constitute public spaces in which broader legal, ethical, economic, political and technoscientific configurations are negotiated and defined. Looking at regulatory struggles about rare diseases and orphan drugs amounts to looking at the frontier of the new public health shaping up in an increasingly global order and political-economy.