When the people spoke in 2011 and sent me home to Toronto after a brief but very good time in the House of Commons, I was hired to be president and CEO of the Asthma Society of Canada, a small but mighty health charity.
I was fairly quickly elected to the governing council of the Health Charities Coalition of Canada. That is the group that the 30 or so health charities and patient groups in Canada are members of. We look at particular policy issues that are stumbling blocks or barriers for us to advancing the health of Canadians.
At our coalition, we made the decision to get into the area of genetic testing. With the discovery of the human genome, medicine was changing every day. Our old laws and old practices were not keeping up. Everything about our world in health care was changing.
They have not yet discovered the asthma gene; they've discovered biomarkers to recognize why different medications don't work. They used to do it by trial and error. Until a couple of years ago, everything was by trial and error in the area of asthma. We now have biomarkers that tell people why certain medications work.
In other diseases.... This year, for example, they discovered the gene for cystic fibrosis. A few years ago they discovered the genes that are related to breast cancer, ovarian cancer, cervical cancer, now prostrate cancer, multiple sclerosis, Alzheimer's, and rapid onset and early advanced Alzheimer’s. They now have a genetic component for that.
As a patient organization, we found that none of the governments in Canada was moving quickly on this. We looked at the American model; we looked at another model, in Europe, and said, let's do this. That's when Bev Heim-Myers, one of my colleagues, started working with Senator Cowan on this bill.
It seemed a natural fit for me to pick it up. I'm not a lawyer—there's a reason I'm not a lawyer, when I read that list of acts—however, I understood the bill from the health perspective. What I was hoping was that the lawyers would give us a break. That was my goal on this one, to say that the health impact of this is so important and that people's lives could be affected so positively that it's important.
One story I got was that companies were now looking at.... It wasn't so much life insurance that was the problem, but are you going to hire someone who carries a gene when someone else doesn't carry that gene, even though they might have a 5% chance of actually developing this disease because of all the other factors? We now have documented cases of employers choosing one person over another because of the experience of providing health care benefits or drug benefits.
That's not the way we work in Canada. We share risk, we work together on it, and that is pervasive. I would say that is a fundamental principle that we're trying to engage in.