Accepted Paper:

The politics of rare diseases and orphan drugs in Europe  


Rob Hagendijk (Universiteit van Amsterdam)

Paper short abstract:

A co-productionist analysis of EU health policies for rare diseases. How scientific, political, ethical and economic concerns get reconfigured in ways that may affect future EU public health systems and societies writ large.

Paper long abstract:

The paper studies changes in how 'rare diseases' and 'orphan drugs' are dealt with in Europe. These policy domains are relatively small, but they are key elements in the changing landscape of public health. Combined with associated tensions in public health insurance systems they form a key testing ground for struggles about public health writ large.

Advances in the biomedical sciences, pharmaceutics and also informatics play an important role in all this. The European Medicines Agency (EMA) has been established in connection with these, but also as a part of neoliberal reforms of markets and governance. More recently patients, doctors and the EC have managed to establish 'rare diseases' as a distinct domain of emerging European public health policy. I will argue that on-going development processes have not just implications for medical practice, but also for the boundaries between market and state, medical professionals and pharmaceutical companies and for the position of public health insurance.

My analysis draws on the co-productionist approach developed in STS. In my view developments in the area of rare diseases and orphan drugs offer a vantage point for such a detailed co-productionist analysis. I will also draw on and discuss insights from politico-economic analysis, law, and European integration studies. Drawing on my own involvement in developments in the field or rare metabolic diseases, I will present some of the fault lines, on-going struggles and topical structures and their wider intellectual and political implications.

Panel T017
STS for pharmaceuticals and public health policy