Social Medicine

Rare diseases, affecting fewer than one in 2,000 individuals, often receive inadequate attention in pharmaceutical research. This neglect leads to exorbitant treatment costs and limited options for patients with conditions such as cystic fibrosis, Duchenne muscular dystrophy and various genetic disorders. 

At York University, Conor Douglas is addressing these challenges through the Social Pharmaceutical Innovation (SPIN) project, which aims to enhance the development and delivery of treatments for rare diseases. He has coined the term “social pharmaceutical innovation” to describe a collaborative model that unites patients, NGOs and public sector entities to improve access to affordable treatments.

“We need to eliminate the barriers that prevent individuals from accessing essential care,” says Douglas, a professor in the Department of Science, Technology and Society.

The SPIN initiative involves partnerships across Brazil, Canada, France and the Netherlands, supported by funding from the Trans-Atlantic Platform for Social Sciences and Humanities. By leveraging insights from social innovation research, SPIN addresses critical issues related to treatment availability and affordability. “The science is ready for implementation; it won’t make an impact unless we tackle social, political and economic systemic challenges related to research, regulation and coverage of medicines for rare diseases,” he emphasizes.

Grounded in a commitment to social justice, the project acknowledges that many drug innovations originate in public research institutions, but often become privatized. This shift can inflate prices, rendering essential medications unaffordable for many patients. The initiative aligns with York University’s mission to promote social equity and supports several Sustainable Development Goals, including good health and well-being, as well as reducing inequalities.

A significant achievement of the project has been a clear definition of social pharmaceutical innovation itself. This clarity has resonated with organizations such as BioCanRx, facilitating collaborations on public-sector treatment manufacturing and exploring alternative pathways for drug development.

According to Douglas, transforming entrenched drug development processes presents challenges, due to established practices and substantial financial interests. Ongoing work for SPIN will focus on fostering collaboration with Health Canada and provincial health systems to challenge conventional industry practices. The aim is to support initiatives that might otherwise be overlooked due to market failures.

With the establishment of York University’s new School of Medicine, there is an opportunity to integrate these efforts into the training of future health-care professionals who are committed to addressing health equity challenges. “Change is underway,” asserts Douglas. “A different way of doing things is possible.”  ■