Madam Speaker, thanks to the member for Calgary Confederation's contributions at the provincial legislature in Alberta, the province has an electronic organ and tissue donor registry of which I am a donor. I subscribed myself thanks to that new system that he introduced. He is also one of the very few members of the legislative assembly when he served there who actually passed two private members' bills. I hope that fortune and that ability passes on to the member for Edmonton Manning who is pushing for a very wise bill on organ and tissue donor registry.
I have a Yiddish proverb to share with the House, “He who looks for light work goes very tired to bed.” I view the government's response to this private member's bill as a search for that light work. Personal stories on organ donor registries and about specific issues of public policy seem to have a higher impact on the backbench members of the government who might be allowed a free vote on this.
Let me share my personal story. I have three kids. My two oldest kids, Maximilian and Jolie, will both need some day the donation of a kidney to continue living. It is inevitable. There is no cure for the condition that they have called Alport syndrome and they were born with it. For a parent who has to experience that, it is profound and changes one's outlook on life. That is why I became a donor. That is why I became involved in the Kidney Foundation of Canada as a board member for the southern Alberta chapter as well.
Through that involvement I met lots of people on the Kidney March, a three-day 100 kilometre walk through beautiful Kananaskis country. I shared tents with organ donors and experienced people doing dialysis in the camp at night. They would do a 25-kilometre walk and then do dialysis in the camp, and then start completely fresh the next day because the dialysis cleaned out all the by-products in the body that come from exercise. They literally could walk another 30 kilometres the next day and they were not as tired.
I met incredible people with incredible stories of perseverance and strength. They want something like this bill. They need something like this. I met a gentleman who lost both of his kidneys on a trip to Morocco with his friends. He had an emergency flight back to Canada and they were able to save his life, but he is on a second kidney donation now. He does marathons across North America. He is literally the first one to finish the 100-kilometre walk. I tried to keep up with him and I am able-bodied and younger, but I had a tough time keeping up with him. On the second day it is a 38-kilometre walk and he finished first. It is incredible what people can achieve.
I am thinking of my kids and what they went through from the moment of diagnosis and the doctors explaining what would happen to them. An organ and tissue donor registry is the first step. We are not talking about creating an entirely new registry, we are talking about coordinating the actions being done in the different provinces. I know we already have three of these and they coordinate different facets of this. That is why I think this private member's bill goes beyond that and talks about an actual strategy on organ donation and lays out nine further points for a national strategy.
Most strategists talk about simply ideas, a principle, a thought that, although important, does not have what the member for Edmonton Manning has included here, which is nine specific areas that we could look at. I have met with specialists in this field across Canada. They are surgeons responsible for explaining to family members that their loved one is deceased or they are the ones doing the organ donation procedures. All of them say that these nine areas are an improvement that we can lend to the system, so why not legislate on it because that is what we are here to do, to pass good laws and make sure bad ones do not pass.
When I read the Parliamentary Secretary to the Minister of Health's argument, I found three excuses I want to highlight and explain why they are not good excuses.
The duplicating of existing initiatives was one excuse. This does not duplicate. We can simply repurpose current work to meet the demands of this legislation. To say they would duplicate would indicate that work is already being done, but national organ and tissue donation rates are nothing to be proud of. They have barely improved over time. Real improvements would be to go after the structural issues and bottlenecks in the system.
Furthermore, this is probably the absolute weakest argument that can be made, because if we are already doing the work, then why not seek the path of least resistance, agree with the legislation, and simply pass it so it can be studied at committee. To say that there are existing initiatives basically says this legislation simply encapsulates what already exists, which is fine, but let us move on to the next point.
The other one the parliamentary secretary mentioned was the shift in responsibilities. She mentioned consent, confidentiality, health policies, and procedures that they are, indeed, mostly within provincial jurisdictions. My issue with that is this. Is there not a better way to coordinate it, perhaps by doing it formally, maybe in a voluntary system, which the member for Edmonton Manning included in his private member's bill? Section 5 of the law creates a voluntary opt-in, so it is optional for the provinces to participate in this. Success will breed a willingness to participate as well, so that as these different parts begin to do their work, as donation rates improve and there is success, more provinces will want to participate. Although it is within their jurisdiction, there is a voluntary component.
Provinces can voluntarily coordinate with the federal government and other provinces in order to improve the system. I will give the example of pensions. Pensions are a provincial jurisdiction, not federal. The Canada pension plan is coordinated across all provinces in Canada. Why can we not do the same thing? The same principle applies. It is not a shifting of responsibility to the federal government, saying we want a national pension plan that is transferrable from province to province; it is simply the coordination of work.
When I worked at the provincial legislature and orders in council were passed, it was basically with the consent of the different provinces and consultation with the federal government about the coordination of the pension plan, to make sure that the provincial laws and regulations that were passed were consistent across the board so that Canadians who moved across the country would have the same pension plan system, wherever they went. Why can we not have that for organ and tissue donation systems? It makes sense and I do not understand where the problem is. I do not understand why this would have been brought up as an issue.
The third point that the parliamentary secretary made was about the privacy of persons due to the collection of related personal health information. I have run into this a few times now. This was probably the most bizarre reasoning at committee. In clause by clause on Bill C-14, I wanted to introduce an amendment on written consent before the procedure, and I was told that this would impede the privacy of the person involved.
Privacy should never be used as a bottleneck or a pit trap for public policy improvements, especially when people can voluntarily surrender their privacy for the sake of a public policy goal that they agree with. We are not going after people who do not want to donate, we are trying to make it easier for people who do want to donate, to be connected with individuals who need organ or tissue donations because their lives are in danger or they have medical conditions that require organ donations.
Of course, this is voluntary and privacy should not be used in this way as an excuse not to do something, especially when the individuals involved want to help. I meet countless living donors who are so happy to have contributed to and extended someone else's life. The connection between donors and the people they have donated to is very deep. I have seen this countless times. I saw this at the Kidney March as well.
Those in need of organ or tissue donations will not stand for this type of bureaucratic logjamming. I find it is straight out of Yes, Minister. It is like we have seen this all before. It is worthy of Sir Humphrey Appleby saying that policy administration is different from the administration of the policy, and we cannot encapsulate this in the legislation. If it is being done already, let us put in the legislation. If we can coordinate better, let us do it through legislation.
Again, I do not see a reason why we cannot do this. None of the parliamentary secretary's objections, to me, stand up to scrutiny. I would urge the backbench government MPs, where I sometimes find kindred spirits, to support this bill. Let us take it to committee. If there are amendments to be made, we can do it there.