Mr. Speaker, I welcome the opportunity this evening to participate in the debate on the private member's Motion No. 426 which addresses the very complex issue of rare diseases and disorders and the toll it takes on the lives of an untold number of Canadian.
It may seem like something of an oxymoron to say that because, at first glance, a person might think that if the diseases and disorders are so very rare then how can it be that so many people's lives are affected. The reality is that there is a vast array of rare diseases and uncommon disorders that afflict the lives of a great many Canadians and, in many cases, cost them their lives, but the number of Canadians affected by any one of those rare disorders or rare diseases is relatively small.
That poses some very serious challenges for the individuals who are suffering from the effects of those rare disorders and diseases, for their families and for the health care system.
I want to say at the outset how much I admire the leadership that has been shown by the member for North Vancouver, not only in bringing this issue to the attention of parliamentarians and educating us, through a variety of means, about the real impact of the current inadequacy of our health care system to respond to this situation, but for going so much further than that, so much further than just making us aware.
I am one of many members of Parliament who was privileged to be in attendance at an awareness event that was co-sponsored with the Speaker of the House. I want to express my appreciation to the Speaker for having shown an interest and a commitment to support the efforts of the member for North Vancouver when he hosted an event here on Parliament Hill. Some of the good work that does get done is not often evident to the public. The member and members of his family shared the devastating story of losing first one and then a second grandchild to a rare disease for which there was no treatment available that might have saved or prolonged the life of those grandchildren.
I want to express my deep admiration for the courage and persistence the member has shown in bringing this issue forward. To state the obvious, the member, having done this, will never bring back his loved ones but I think it has been evident that this is a labour of love and it is not only in support of his son and daughter-in-law but also other families who are struggling with similar circumstances. I am sure it cannot be easy to again and again muster the energy, the inner resources and the courage to share that story because it is so devastating.
Not only did the member himself but his son, who suffered the loss of his two young children to a rare disease, stood among parliamentarians to tell this very difficult story about such a deep loss to him, his wife and the extended family.
However, the efforts did not stop there. The member serves as president, or certainly did, although I am not sure if he still does, of an organization formed to bring this fight to life, an organization known as CORD, the Canadian Organization for Rare Diseases.
This has been a persistent information campaign and advocacy group to bring to the light of day, to bring to the attention of Canadians, to lobby parliamentarians and to say that our current government's response to the plight of so many people is simply inadequate.
Some might ask, how can we expect to develop the kind of resources that would be needed, very expensive treatment regimes and pharmaceuticals, when only small numbers of people are afflicted by each of these different disorders?
If one closely examines the motion brought forward by the member, some very practical considerations are contained in it. I do not have time to go through them in detail, but they seem eminently reasonable and practical. There is nothing unrealistic about what has been put forward. I think that is why there has been absolutely no hesitation about members coming forward to indicate their support.
The fact is we are one of the few remaining countries in the developed world that does not have a comprehensive policy to address this very challenging problem. We do not have an official definition of a rare disorder. Nor do we have an orphan drug policy. There is no reason for us not to move on this. I hope all members will see the wisdom of supporting the motion.
I know the member from Quebec has raised a jurisdictional question. It is really a question about what often arises in regard to Quebec's handling of similar social-economic policies. I hope this would not in any way, shape or form be used as a reason not to achieve unanimous consent on the motion.
Although there has been some compromise, some elements lost in the motion as a result of the government indicating that it would support some amendments, it is nevertheless some kind of progress that we can move forward to put in place some very specific recommendations. It is unfortunate that the government, as I understand it, has insisted that the requirement for it to come forward with report within six months not be contained in the motion. Instead the government has indicated 12 months is the only timeframe to which it is prepared to commit. At least it gets us on a path to begin to look seriously at what kinds of policies and programs need to be put in place to deal with this.
When I first began to become sensitized to the devastation of the rare diseases and disorders, which have such an impact on families, I knew only second-hand of some of the persons who were struggling with such disorders. As chance would have it, during the last year, I had a very close family member who was stricken initially by a completely undiagnosed illness. It went on for a considerable period of time. It turned out to be an extremely rare disorder. The good news is there is progress in dealing with such disorders.
One very important thing in the motion is the recognition that there needs to be accommodations for the kinds of clinical trials that would be conducted and what the regulations to govern those trials would be. We are talking small populations, and one has to accommodate that reality.
It is too easy to say that we cannot really do that, that this is very expensive. An appeal was appropriately made to the intended universality of the Canada Health Act that because we had small numbers afflicted by these various rare disorders and diseases, that did not mean people should not expect to be covered by the intended provisions of the act. Regardless of where one lives and how much money one has or one's family has, people should receive as close to equal treatment as is possible.
I am very pleased we are now looking at this motion, which I hope will be universally endorsed. With the modern breakthroughs in scientific advances and modern research, this is an area in which there is no question we can make enormous gains and have a huge impact on the lives of people who are afflicted by such diseases and disorders, on their families and on the health care system to apply these new breakthroughs in knowledge.
The most shocking and obscene thing is the amount of money spent on using new information and technology to develop new weaponry, weapons of war, for example, as if this is some kind of a step in the direction of civilization. We need to recognize that we have to harness new knowledge and new research advances for the betterment of humankind. What better example could we have than the one now before us, as a result of the hard work by the member for North Vancouver. He would be the first to—