Grant: Doctoral Award - Frederick Banting and Charles Best Canada Graduate Scholarships

Understanding pharmaceutical development is vitally important to understanding the current state and future directions of our medical system. Through an ethnographic, multi-sited project, I intend to explore the dynamics of research and development of what are called 'orphan drugs': pharmaceuticals developed to treat rare and/or neglected diseases, many of which are priced between $100,000.00 and $850,000.00 per person per year. The high prices of these drugs have become the subject of much debate, especially vis-à-vis publicly funded prescription drug programs like the ones in place in Canada. Historically, rare diseases were seen as 'orphans' of the pharmaceutical industry as the patient population was seen as too small to be profitable. Treatments for some of these diseases are now becoming available as a result of international incentivizing legislations like the United States' 1983 Orphan Drug Act. Rare disease research is becoming increasingly popular with big pharmaceutical companies as their patents for drugs for more common diseases run out. This means that we may see an expansion in the availability of orphan drugs for rare diseases, but lowered costs are not anticipated. This project will examine how different institutional, legislative, and cultural dynamics and relationships are shaping orphan drug development. It will also investigate the forces that shape the translation of rare disease research in to marketable pharmaceutical therapies. The research will provide a better understanding of how knowledge about rare genetic diseases gets translated in to therapeutic practice. It will also illuminate the ways that orphan drugs are creating, mediating, and transforming discussions of the ethics surrounding the accessibility of health care technology. This research is timely, as the cost and sustainability of therapeutic development is a key aspect of debates surrounding the viability of universal health care coverage in Canada and internationally.