Health committee  The bioethics group? No, we exist in the United States. There is a panel of about nine of us led by Dr. Art Caplan, who is probably one of the foremost medical bioethicists on the planet. We take action when needed. For instance, if there's a grey area in terms of decision-maki

Health committee  Yes. In that particular case of cystinosis, I can speak confidently about it, because once that drug from the other company—the more expensive drug—became approved and was working its way through the negotiation process, I had a lot of cystinosis patients reach out to me. They sa

Health committee  Well, for example, for these patients with cystinosis, the system is being forced into providing and reimbursing a drug that may cost $400,000. There's one in the pipeline with Health Canada, about to be approved, which will probably cost $50,000. As Dr. Midgley said, it does vir

Health committee  If I listen to Dr. Coyle, I hear him saying that we value a society that will provide an exponential amount of money for people who make themselves sick over the course of their lifetime by smoking, by drinking. There's no question that you get lung cancer; we're treating it and

Health committee  I'm saying we should be able to look at those most critically in need—those patients, like my group of patients, who will be dead before we decide to fund it. I guarantee you, we will decide to fund this drug in this country. Most drugs that are granted priority approval move on

Health committee  I've heard of pharmaceutical companies—and I have dealt very directly with pharmaceutical companies—that have levelled that threat. We've been able to work with them very collaboratively to ensure that our patients maintain access. Part of the problem that the pharmaceutical com

Health committee  I do and I think it would be ideal, but once a reimbursement deal is in place with governments, I do feel that the burden should shift back over to the publicly funded health care system. I do know that it is scaring companies away from wanting to do clinical trials here. That'

Health committee  Thank you. Distinguished members of this committee, I am the executive director of The Isaac Foundation, an organization that is dedicated to providing advocacy and support to patients dealing with a wide range of ultra-rare disorders and needing access to rare disease treatmen