Olga Temina

Between market, informality, and activism: access to medicines in Russia

Department of Health, Ethics and Society, Faculty of Health, Medicine & Life Sciences, Maastricht University, [email protected]

Supervisors: Prof. Klasien Horstman, Dr Olga Zvonareva

Background

I have obtained my MA degree in International Sociology from Saint-Petersburg State University (Russia) drawing from background in Economics (BA). My master program was designed in collaboration with Bielefeld University (Germany) where I also received training. For my master thesis I conducted qualitative research investigating role of gender in self-perception of education- and work-related experiences of male and female medical workers occupied in non-traditional professions in the UK and the Republic of Ireland.

Summary PhD Project

Medicines for treatment of oncological and orphan diseases are extremely expensive, often experimental, and usually needed urgently but they are rarely easy to receive, especially in countries where access to healthcare is hampered or complicated. Russia is one of such countries – rapid liberalization, marketisation, and deep economic crisis of the 90-s severely affected public healthcare and its accessibility, and even now with stabilisation and improvement of economic situation the problem of access to highly specialized and life-saving medicines remains.

In the assemblage of long-lasting financial, structural, and legal problems that complicate access to medicines, NGOs and activist movements attempt to improve the patients’ situation. Patient activism in “western” context which is quite receptive towards social movements is a well-studied phenomenon, especially in STS literature. However, health activists in Russia operate in a very different environment where bottom-up activism is unfavoured and suppressed. Nevertheless, health activists do not just manage to survive and to help concrete patients, but they also succeed in initiating systemic changes.

In my research I aim to answer the following questions:

• How access to medicines for patients with orphan and oncological diseases in Russia is constructed and maintained?
• What practices actors use along the way?
• How do patient movements and activists co-produce knowledge? What political epistemologies are produced?
• How is informality employed in construction of access?
• How does digital transform access to medicines?

To answer these research questions, I will draw from three theoretical fields: informality studies, STS and digital sociology. Methodologically, I will employ tools of qualitative research such as semi-structured interviews and observations.