All the drugs that are fit to take

All the drugs that are fit to take
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This piece was originally published in CBC.

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.

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 organized by the Canadian Institutes of Health Research and Global Reporting Centre, presented last October at the University of British Columbia.

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.

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.

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