International summit to drive conversation and collaboration around orphan drug policy

On March 14 and 15 the University of British Columbia (UBC) Emerging Research Cluster on Reimbursement and Pricing Policy for Drugs for Rare Diseases will host the 2019 International Summit on Orphan Drug Pricing and Policy. The event, to be held in the Robert H. Lee Alumni Centre, will provide a platform for sharing global perspectives related to policy and reimbursement of expensive drugs for rare diseases.

The Summit also provides an opportunity for participants to explore potential collaborations, with a goal to help inform a future research agenda and identify solutions that could be implemented on a global scale. Invited experts on orphan drug policy from as far afield as the Netherlands, Belgium, England, New Zealand, Singapore, Spain, Malaysia and the United States. Canadian participants include representatives from government payers, the Pan-Canadian Pharmaceutical Alliance, the Patented Medicines Prices Review Board, the Canadian Agency for Drugs and Technologies in Health, and Health Canada.

Over the last decade, UBC has developed a critical mass of faculty and clinicians with expertise in orphan drugs and rare diseases, an issue of growing importance for patients, care providers, and payers. The Emerging Research Cluster on Reimbursement and Pricing Policy for Drugs for Rare Diseases is led by Dr. Larry Lynd, professor, UBC Faculty of Pharmaceutical Sciences, in conjunction with colleagues from UBC Journalism, Anthropology, Medical Genetics, School of Population and Public Health, Biomedical Ethics, and the Adult Metabolic Diseases Clinic. The Cluster aims to contribute to the development of a consistent and transparent decision-making system for determining coverage of orphan drugs.

Supported by a grant from UBC’s Vice-President Research & Innovation Office, the 2019 International Summit on Orphan Drug Pricing and Policy will help support the Cluster’s goal of furthering international conversation around the funding and reimbursement of orphan drugs. 

“At UBC, we now have a critical mass of faculty from diverse areas of expertise with a specific interest in orphan drug policy,” says Dr. Lynd.

“This has allowed us to attract a group of very experienced individuals from around the world to further the discussion on potential international collaborative strategies to dealing with this growing issue in health care.”