All the drugs that are fit to take

Each day in Canada, the government effectively puts a dollar value on people's lives by deciding which medications to cover. The issues of coverage and cost are magnified exponentially when it comes to expensive drugs for rare diseases. On one side, we have the rights of sick people to access medicine; and on the other, companies saying they have a right to make profit. Can we resolve this challenge fairly without accepting the prospect that some Canadians are just too expensive to help?

A panel discussion about the challenges of providing costly drugs for Canadians suffering from rare diseases

Each day in Canada, the government effectively puts a dollar value on people's lives by deciding which medications to cover. (Room's Studio/Shutterstock)

There's a consensus that the right to healthcare is a core Canadian value. But it's not always easy standing up for a value when the issue of affordability is staring you in the face.

Canadians are confronted by a recurring question: how do we efficiently run a system that is both financially viable, but also fair to the most number of Canadians? Is it possible to fund a high-quality universal system while also addressing growing wait times? What about in vitro fertilization?

How do we contend with the high cost of caring for both a growing number of premature babies and an aging population that is living longer and longer? 

One aspect of this affordability versus right-to-healthcare dichotomy is in the area of rare diseases which aren't so rare after all: they affect some two million Canadians. And medications for rare diseases can cost a small fortune.

There are other countries that have been doing much much better than Canada in pricing strategies.Recently, B.C. led the way in a set of negotiations on one of the rare disease drugs. They prepared for those negotiations by getting information from other countries on the actual price they were paying. There are many ways that prices can be hidden.- Dr. Sandra Sirrs

Private drug companies claim they have a right to charge what is fair but the actual cost of drugs is unknown leaving governments — both federal and provincial — in the dark when it comes to negotiating a deal to get sick people the medicines they need.

The business end of the problem means people with rare diseases and their families are sometimes left frustrated, waiting to find out whether they can have access to the very medicines that could save their lives.

This episode features a panel discussion put on by the New Emerging Team for Rare Diseases, a research project funded by the Canadian Institutes of Health Research and overseen by Dr. Larry Lynd at UBC Pharmaceutical Sciences.

It was presented last October at the UBC Global Reporting Centre. The project was organized by by Peter Klein, Emma Loy and Logan Turner. For more stories and interviews, visit their project

The discussion was moderated by IDEAS host, Paul Kennedy, and features Dr. Sandra Sirrs, medical director of the Adult Metabolic Diseases Clinic at Vancouver General Hospital; Dr. Millan Patel, a scientist at UBC and co-founder/research director of the Rare Disease Foundation; Darren Bidulka, a resident of Vancouver living with Fabry Disease; and Eric Lun, executive director at the BC Ministry of Health: Pharmaceutical Services Division.

**This episode was produced by Anne Penman and edited by Naheed Mustafa.