Canadian Organ Donor Registry Act

An Act to establish the Canadian Organ Donor Registry and to coordinate and promote organ donation throughout Canada

Sponsor

Ziad Aboultaif  Conservative

Introduced as a private member’s bill. (These don’t often become law.)

Status

Defeated, as of June 15, 2016

Subscribe to a feed (what's a feed?) of speeches and votes in the House related to Bill C-223.

Summary

This is from the published bill. The Library of Parliament often publishes better independent summaries.

The purpose of this enactment is to establish the Canadian Organ Donor Registry. The Registry is a compilation of information on organ donors and recipients and a system that links to compilations held by third parties. The enactment provides for the confidentiality of all information contained in the Registry or accessible through it.

The enactment also provides for the development of a national strategy to promote organ donation in Canada and facilitate the exchange of information on organ donation between provinces.

Finally, it mandates an annual report.

Elsewhere

All sorts of information on this bill is available at LEGISinfo, provided by the Library of Parliament. You can also read the full text of the bill.

Votes

June 15, 2016 Failed That the Bill be now read a second time and referred to the Standing Committee on Health.

Canadian Organ Donor Registry ActPrivate Members' Business

June 13th, 2016 / 11:05 a.m.
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Winnipeg North Manitoba

Liberal

Kevin Lamoureux LiberalParliamentary Secretary to the Leader of the Government in the House of Commons

Mr. Speaker, it is with pleasure that I rise today to talk about the legislation. I must start off by commending the member in terms of the initiative that he has taken upon himself. I believe that the bill raises the very important issue of organ and tissue donation, something which is top of mind for a number of Canadians in all regions of our country. One only needs to visit a hospital to get a very good sense as to how serious an issue this really is.

Whether it is provincial, national, or here in Ottawa, governments are generally concerned about the issue of organ and tissue donation and what role we might be able to play in that. I would ultimately argue that all governments of all political stripes encourage Canadians, as a population, to do what they can by listing on donor cards their willingness to have their organs used if their life is terminated in some fashion or another, especially if it happens prematurely through a vehicle accident or something of that nature.

I say this because if we read through Bill C-223 it sets out some fairly decent objectives. In reading it, one would easily ask why we would not vote in favour of the legislation. I have had the opportunity to have a number of discussions over the years with respect to what the bill is attempting to do. At first blush, one would think that this is something that we as legislators should be acting upon.

As much as I appreciate the bill that we have before us, I believe it is not necessary. My understanding is that the government will not be voting or recommending that we vote in favour of the bill for good reason. No member of the House should interpret this in any fashion to mean that the Government of Canada is not sincere or genuine in wanting to play a strong leadership role on this very important issue. As I said, as much as possible we encourage Canadians to get engaged in this issue in one form or another, ideally, as I made reference to, in terms of considering the donation of their organs and tissue if their end comes in a premature fashion.

If I may, I would like to expand as to why it is that we are taking this position. It is important that we recognize that the federal, provincial, and territorial governments are committed to investing in improving organ and tissue donation and transplantation. Since 2008, all provincial and territorial governments, with the exception of the Province of Quebec, in collaboration with the federal government, have given Canadian Blood Services the mandate, and over $64 million in funding, for a nationally coordinated system.

It is important we recognize the jurisdictional responsibilities of what the bill is looking for. If we put the statement I just gave into proper context, one gets a better understanding as to why the bill is not necessary at this stage, as important as the issue is.

When we look at what Canadian Blood Services does with respect to the system I just referred to, it can be best explained in four points. First, it is responsible for developing and implementing a national strategic plan, including the mandate, and the roles and responsibilities in the nationally coordinated system. Second, it establishes leading practices, professional education, knowledge translation, and public education and awareness campaigns. Third, it enhances system performance reporting, including public reporting. Fourth, it develops and maintains the Canadian transplant registry and a national donor registry with three interprovincial organ-sharing programs.

Like many others no doubt, I can tell stories of constituents I have represented where the need was high. I think of a gentleman, Hank Horner, who has been a long-time advocate for organ donation. I have had numerous discussions with him. I am sure if he saw the legislation before us, he too would be tempted to support it.

However, I like to think that if we look at the bigger picture and at working with the provinces and territories, where there is jurisdictional responsibility, we here in Ottawa would do best, in terms of serving individuals like Hank, by working in collaboration with these different levels of government to make sure Canada establishes a world-class system that Canadians can truly believe in.

What Hank often argued for was that, as much as it was important to have a registry, the most important issue for him personally, and the individuals he had advocated on behalf of, was education. We need to be able to make Canadians aware of the importance of organ donation, and how not only does it save lives but it improves quality of life for recipients who have had the good fortune of receiving a transplant.

I have witnessed first-hand, as I am sure others have, recipients who have been gifted an organ. They had the operation necessary and the medications that followed. They will espouse how profoundly it has changed their lives. This gift has taken them off of machines. They no longer have to go into health care institutions, often on more than a weekly basis. It gives them that sense of independence. Therefore, I believe it is critically important for us to do what we can as legislators, as parliamentarians, to try to deliver those quality health care services.

What Hank would ultimately argue when he looked at a Manitoba driver's licence, for example, is that we have a driver's licence in which it is an optional issue. If one wanted to donate one's organs, one would tick off a particular box. I know that he, and others, were looking at the possibility of having a negative option where it is assumed that people would be prepared to donate organs, as opposed to having to tick off the box to voluntarily donate. I can appreciate the arguments for that.

I had encouraged Hank and others to work with the provincial government to look at creative ways in which they could improve the number of people who are prepared to donate organs, and the driver's licence is but one example. Another thing we often talked about was the issue of education and going into high schools. I know that Hank and others have done just that. They try to educate through our high school system, radio interviews and programs, community clubs, and outreach programs, which can really make a difference.

In essence, I commend the member for bringing the legislation forward. However, I would advise the member that there are already things in place to ensure that we are accomplishing what the member is hoping to accomplish with the legislation. Therefore, I will not be able to vote in favour of his private member's bill.

Canadian Organ Donor Registry ActPrivate Members' Business

June 13th, 2016 / 11:10 a.m.
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NDP

Don Davies NDP Vancouver Kingsway, BC

Madam Speaker, I rise with pleasure to address an important bill before the House, Bill C-223, an act which would establish the Canadian organ donor registry and coordinate and promote organ donation throughout Canada.

The bill proposes to establish a Canadian organ donor registry to centrally compile information on organ donors and potential transplantation recipients across the provinces and territories. The purpose of the registry would be to increase efficiencies associated with patient assessment and organ allocation to improve patient wait-times, hopefully to reduce them, for transplantation and reduce the number of lost transplant opportunities.

For years New Democrats have supported better national collaboration in organ and tissue donation and transplantation. Specifically, New Democrats have supported the creation of a national registry to achieve this objective, so we are glad to support this initiative put forward by my hon. colleague.

Let me give the House some key figures. Every year, 1,600 Canadians will be added to organ donor waiting lists. Over 80% of Canadians say they would donate their organs; however, fewer than 20% have made arrangements to donate. At any give time, approximately 5,000 Canadians are waiting for an organ or tissue transplant.

Canada's deceased donation rate is relatively low compared to other comparable countries. According to 2009 data from the International Registry of Organ Donation and Transplantation, Canada placed below countries such as Spain, Uruguay, U.S.A., Cuba, and the U.K. in donation rates. Canada's donation rate is less than half that of leading countries. One-third of Canadians who need a transplant will never receive one, according to Canadian Blood Services. We can and must do better.

New Democrats have been working hard in recent years to establish a national organ donor registry to save and improve the lives of Canadians in desperate need of transplants. Canada can do a better job managing the organ transplant system and the establishment of a national registry is a critical first step.

This is the latest in a series of similar private member's bills on a national organ donor registry that have been introduced over the past 15 years. The last two variations were introduced by New Democrat member of Parliament Malcolm Allen in the 40th and 41st Parliaments. A bill proposing a national organ donor registry has never been voted on at second reading.

The sponsor of the legislation, the member of Parliament for Edmonton Manning, has a son who was born with a rare liver disease and has required three life-saving transplantations over the course of his lifetime. The legislation is a combination of personal experience fused with public policy and I would like to congratulate the member for bringing it forward.

In 2011, Canada's organ and tissue donation transplant communities in collaboration with Canadian Blood Services produced a document entitled “Call to Action”, which formally recommended the establishment of an integrated, interprovincial organ donation and transplantation system. The “Call to Action” document recommended the establishment of this interprovincial system by 2017. The authors of the document believe that a nationwide coordination would allow Canada to better reach our potential in organ and tissue transplant donation. They called for the creation of a system that would be consistent across the country, easily accessible, available online, and used to legally authorize donations based on the wishes of the donor.

A national registry would not only improve the availability of organs to patients in need but could also reduce provincial health care costs on those on waiting lists as they are treated more quickly. It would also address the disparities in wait-times across regions and provinces by increasing the efficiency and the supply of donor organs and tissues.

New Democrats support sending the bill to committee to permit an in-depth study of its provisions and perhaps to see if any improvements could be made.

Due to the important life-saving potential of the bill, it is vitally important that Parliament get the details right. For example, we believe that the special status of Quebec must be addressed within the legislation.

Bill C-223 lacks some of the implementation details included in Mr. Allen's former national registry bill, including the right of Quebec to operate a parallel registry as they do today with blood and tissue collection.

In addition, the bill gives substantial power and responsibility to the health minister rather than delegating responsibility for the administration of the registry to the registrar, as did the former bill. This should be studied, as well, to determine the best approach.

Finally, in Bill C-223, both reporting mechanisms to Parliament and the process for provincial affiliation to the national registry are not detailed when compared to the former bill. These details require closer study.

Parliament should also study the experience of other jurisdictions that have implemented presumptive organ and tissue donation, that is, a system where people are deemed to agree to be a donor unless they explicitly opt out, as a means of dramatically increasing potential donations to save lives. This is not in the bill currently, but it is an idea that is well worth exploring to ensure that every single Canadian man, woman, and child, has access to necessary organs and tissues if they need them to save their lives.

In 2014, the NDP also supported removing the ban on certain organ and tissue donations made by men who have sex with men. Efforts to create a national registry should go hand in hand with efforts to remove this unscientific discrimination and replace it with a science-based behavioural screening process.

It is particularly appropriate to reflect today on this item, and to express my shock and revulsion at the hate crime committed this weekend in Orlando, Florida, where approximately 50 people were targeted and murdered for their sexual orientation. I think I speak for everyone in the House in expressing our solidarity, our prayers, our comfort, and our expression to stand with the LGBTQ community, not only in Orlando but in North America and across the world. This kind of hate crime has to be denounced firmly by everyone.

The bill is timely in a number of ways, but particularly in terms of urging the government to take immediate measures to end the current discriminatory policy governing blood and organ donations in the gay men community. That would be a good first step to start building the kind of science-based policy, the understanding and smart policy, that makes everyone feel included in our country.

New Democrats will continue to work positively and across party lines with our Conservative and Liberal colleagues to build a better health care system for everyone in our country.

I believe that the Liberal government will not be supporting the bill. I would urge Liberals to reconsider that position. Second reading is an opportunity for every member in the House to express our agreement or not with the spirit of the bill. Notwithstanding that we may have some concerns about particular details, we should be able to discuss those details at committee. Therefore, I urge all members of the House to stand together and support this important bill, to support it in spirit and in principle. Any concept or policy that helps organ and tissue donation become more available to Canadian men, women, and children in our country is something we should be giving every opportunity to debate and to put into law.

I would be remiss if I did not point out that there have been some missed opportunities in this regard. The former government had a full four-year term to take action on establishing a national registry, particularly after the release of the April 2011 “Call to Action” report, and the subsequent election of the previous Conservative government, just a month later, in May 2011.

It is unfortunate that four years have been allowed to pass. However, as my father used to say, “Wisdom comes so seldom that it ought not to be rejected simply because it comes late.” I am happy to see that a member of the Conservative caucus, the member for Edmonton Manning, has put forward the bill.

I urge all members of the House to give the bill the study it requires, to support it at second reading. Let us see if we cannot make the improvements we need to make at committee to get everyone's vote in favour of the bill and implement it as soon as we can, for the health of all Canadians.

Canadian Organ Donor Registry ActPrivate Members' Business

June 13th, 2016 / 11:25 a.m.
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Conservative

Len Webber Conservative Calgary Confederation, AB

Madam Speaker, I am honoured to rise to speak in support of Bill C-223, an act to establish a Canadian organ donor registry and to coordinate and promote organ donation in Canada.

First I would like to thank my colleague from Edmonton Manning for bringing forward this private member's bill and recognizing the importance of organ donation. I listened intently to the member's speech at second reading back in April, and it was a very passionate and moving speech.

What you did for your son Tyler was incredible. You as a living donor, I consider a hero.

Canadian Organ Donor Registry ActPrivate Members' Business

June 13th, 2016 / 11:25 a.m.
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Conservative

Len Webber Conservative Calgary Confederation, AB

Madam Speaker, through you, I thank and praise the hon. member for Kitchener—Conestoga for sharing his emotional experience resulting from a tragedy which occurred on May 2, 2011 in which he lost his wife Betty, and for supporting Betty's wishes to allow her organs to be donated after her neurological death because she wanted to give them in order to save the lives of others. It was a selfless and incredible gift.

Three years ago, I had the privilege to also bring forward a private member's bill on organ donation, as a member of the Alberta legislature.

The intention of the bill was to create a provincial organ and tissue donation agency. The bill progressed, was adopted into a government bill, and eventually passed unanimously by all members of the House.

The bill incorporated four key pillars, four components, to its content.

The first pillar was to implement an awareness campaign strategy to have advertising, billboards, literature, and bus benches. It was to encourage people to talk to their families to discuss their wishes in the event of a tragedy where their families may have to choose whether or not to donate their organs.

The second pillar was to implement an electronic donor registry.

The third pillar was to implement the training of health care staff throughout the province of Alberta, so that every hospital would have trained staff, ready on a moment's notice, to take advantage of an opportunity that may exist to procure organs in order to save lives.

The fourth and final pillar was to implement the intent to donate on a driver's licence. At the time, in order for people to indicate their wishes to donate organs, they had to sign on the back of their health care card. I found that unacceptable in today's world. The key to making a registry successful is to make the decision easy to make and easy to execute.

I strongly support the idea of getting one's consent to donate organs when someone obtains or renews a driver's licence or a health care card. However, we could even go further and ask it as part of a passport process or other formal registration process. Imagine if we could get the option to declare that a person is a willing organ donor on their income tax return form?

Today Alberta has over 250,000 people registered in its newly implemented organ donation electronic registry, and the numbers continue to grow.

Recently a team of experts at the University of Alberta's Mazankowski Alberta Heart Institute made history by completing a record 31 organ transplants in just 10 days, indicating the progress that we have made in Alberta. However, there is a lot more work that needs to be done.

I have visited the University of Alberta Hospital transplant ward, and I have seen the results. I have met numerous people who have received the gift of life. What a moving experience it was. The emotions, the tears, the gratitude that these people had upon awakening, knowing that they had received a gift. It is something that I will never forget.

I have seen the need for a coordinated organ donation strategy first-hand, but I have also seen the results of a unified government that puts aside political stripes to support a positive cause.

This is not about partisan politics; it is about saving lives. I can only imagine the positive outcome of what a coordinated national effort could accomplish.

I, along with other members in this House, currently sit on the Standing Committee on Health. Our team is currently studying the issue of national pharmacare. This initiative is not about overstepping the boundaries of our provincial and territorial counterparts. It is about leveraging our strengths as a country to improve the system of pharmacare for all Canadians. Why can we not do the same thing with our organ and tissue donation procurement system in Canada?

Our Standing Committee on Health has already agreed to look into the issue of organ and tissue donation in Canada. It is only appropriate that we send the bill we are currently debating here in this House, Bill C-223, to that committee, to form part of the study and discussion.

It is not just our constituents and some politicians asking for this, but it is also experts in the field of transplantation right here in Canada, experts such as Dr. Lori West, director of the Canadian National Transplant Research Program. This is a national research network funded by the Government of Canada, dedicated entirely to increasing access of Canadians to transplantation and improving transplant outcomes. She is also the director of the Alberta Transplant Institute and chair of Canada research in cardiac transplantation.

Dr. West wrote all of us in this House just last week and said:

We believe that we have the opportunity to use this bill as the beginning of a national conversation toward improving organ donation in Canada. We strongly encourage your government to send this bill to the Standing Committee on Health (HESA) where we can work together with patients, researchers, health charities and government agencies to create a framework that will improve the national system to increase and support donation and transplantation.

In April of this year, the hon. Parliamentary Secretary to the Minister of Health said, right here in this House:

...our government recognizes the need for improvement in the organ and tissue donation and transplantation system in Canada. Collaboration, consultation and engagement with the provinces and territories as well as key stakeholders are necessary to address the complexity of the changes that are required in the system.

She says it is necessary to collaborate, consult, and engage with the provinces and territories, and key stakeholders. Why do we not send this bill to the health committee?

The hon. member and the hon. parliamentary secretary should talk to their caucus, talk to their colleagues, talk to the Minister of Health, and encourage support for this bill to go to committee so it can form a critical part of that deliberation.

In closing, rather than continuing to work in silos, our provinces and territories must work together under a national umbrella in order to improve organ donation in this country. We know registries work for organ and tissue donation. We also know that the larger the pool of donors, the better. It only makes sense that we combine our efforts and truly develop a national database that will help achieve our goal to save lives. Even if we are able to save only one life from our efforts, it will have been worth it.

I implore my colleagues here in this House to vote to send this Bill C-223 to the Standing Committee on Health, where the committee has already agreed to study this issue.

Canadian Organ Donor Registry ActPrivate Members' Business

June 13th, 2016 / 11:30 a.m.
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Conservative

Tom Kmiec Conservative Calgary Shepard, AB

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.

Canadian Organ Donor Registry ActPrivate Members' Business

June 13th, 2016 / 11:40 a.m.
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Conservative

Garnett Genuis Conservative Sherwood Park—Fort Saskatchewan, AB

Madam Speaker, it is a pleasure to rise to address this very important bill proposed by my colleague from Edmonton Manning. I want to commend him at the outset. This is a great initiative, the kind of substantive initiative we would hope to see coming forward in private member's bills. The member is drawing from his own experience and knowledge of a particular area but is also bringing forward a proposal that is meaningful and that would have a positive impact for many Canadians.

This bill would create a national organ donation registry. When we look at the solution, it is important to start with what the problem is we are trying to solve. Some of the speeches that have been made on this bill have suggested that everything is fine. We have a current system in place, so let us just leave the current system in place. However, that is not good enough, because in 2014, almost 300 Canadians—278, to be precise—died waiting for organ transplants. Almost 300 families were affected by someone dying in their families simply because they were waiting for organ transplants. Perhaps not enough people had signed their donor cards, or perhaps there was not an effective system in place to ensure that they got the organs they needed. In 2013, the year before that, 246 people died.

Canada ranks relatively poorly when it comes to this area. In 2012, Canada ranked 20th in deceased organ donor rates. Many countries that are, generally speaking, similar to us, including Spain, the U.S., France, and the U.K., do better than Canada does in this respect. This is not because Canadians are less generous or less concerned about the health and well-being of themselves, their families, or their neighbours.

We need to recognize that we have a problem here. We are under-performing when it comes to supporting those who need to receive organ donations. Let us recognize that problem. I hope this bill will move forward as part of that solution and will also stimulate further discussion about how we can move forward and make this decision better. Maybe, as well, this debate will stimulate awareness among Canadians about the importance of being an organ donor.

The solution my colleague from Edmonton Manning has proposed is to have a national organ donation registry. As much as health care is predominantly a provincial jurisdiction, the bill proposes that there could be more effective national coordination. We could work together as a country to make sure that we are implementing best practices and getting the best use of organs and the best donations we could. This is a great initiative. This is the kind of area on which we should be working together as a country.

As a Conservative, I believe deeply in the principle of subsidiarity, that we should allow provinces and municipalities to operate in their own areas of jurisdiction without undue influence. However, this bill would create a mechanism for collaboration between different jurisdictions. It is an area where collaboration makes sense, where the sharing of information and working together, such that different regions help meet needs in other regions, is just transparently better for everyone. It is the kind of initiative that other levels of government would respond to very well.

It is a simple solution, one that would not tread on anyone's toes, so to speak. It would confront this very real problem, which is that people in Canada are dying because they are not getting access to the organs they need. Perhaps those people could get them under a better developed, better worked out, and better constructed system, as my colleague is proposing.

I hope that members will take their responsibilities seriously as they study this bill and consider how they vote. We have heard from the parliamentary secretary an indication that the members of the government will not be supporting this bill. However, I encourage all members, whatever party they are part of, to reflect on the potential of this initiative to save the lives of many Canadians and the potential to make an actual, substantial difference. That is our job here, after all. It is not to line up along party lines but to think about how an initiative like this could have a positive impact and really matter for people who are suffering and need the help.

My colleague from Calgary, who spoke before me, did an excellent job outlining this.

The objections we have heard are just not substantive. Yes, this is something new. There is a sense that there are existing initiatives and that we should just leave them in place.

Sometimes there is a tendency in government to want to just leave things the way they are. The old way may not be perfect, but we should just leave it the way it is. However, when there is a real need to move forward, because there is a definable negative impact from the current system and there are improvements needed that could and should be made, I think it behooves us to look for those solutions and not just say that we have an old system that is working and that we should just stick with it. I think we should be prepared to do more than we are doing.

There was some discussion about the issue of jurisdiction. This is one of those areas where, while respecting provincial jurisdiction, we should be open to the idea of national leadership and national coordination and co-operation. When there are clear economies of scale, because everyone has the same organs, whether they are in B.C., Quebec, or the Maritimes, there is no reason not to work together to achieve the kind of positive outcomes we can.

I would add that there is an opportunity to see the bill not as the end of a discussion but as the start of an important discussion. I think there are many other options we should explore, building on the leadership of the member for Edmonton Manning, to say how we could do more to encourage organ donations.

We could build on this through enhanced public education, working with provinces on education in schools so that young people growing up are aware of the impact of organ donation and what it can do to help the quality of life of those in their communities. We could be looking at other kinds of programs that have been tried. One option might be a reverse-onus type of program where instead of people opting in as organ donors, people who do not want to be organ donors have to opt out. There would be a presumption of being opted in until an individual opts out.

These are models that have been explored and tried in other places. They are not part of the bill, but recognizing the challenge we face, which the member has brought forward, I think there is an opportunity for us to explore that conversation.

I would emphasize again, for the government and for all members as they think about how they vote on the legislation before us, that the current system is not good enough. When we have a large number of Canadians dying because of a lack of access to organs, and we have Canada under-performing compared to other countries, there is a problem and there is a need to respond in some way.

We are one country, and we can and should work together. We should not hide behind jurisdictional arguments to say that there should not be some kind of national coordination. Yes, of course we have to be respectful of provincial jurisdiction in this area, but that does not mean there cannot be collaboration across the board.

Yes, this is something new. This is a new idea that is different from the system we are using right now. However, that is not sufficient reason not to move forward.

If members have doubts about the bill, this is a vote at second reading that would allow it to go to committee. It would create an opportunity for further study, for Canadians who have been affected by this issue to come forward and tell their stories and for experts, legal and others, to propose modifications and improvements to the bill.

Let us not end it now. Let us move the bill forward to second reading. If members have doubts about it, I encourage them to vote for it at this stage, at least, because it will make a difference. It will make a difference to Canadians who are affected by this issue. It will make a difference as we start a conversation about how we can build on this to save more lives and have a positive impact on the health and well-being of Canadians.

I will be voting for the bill. I am pleased to do so, and I encourage all other members to do so as well.

Canadian Organ Donor Registry ActPrivate Members' Business

June 13th, 2016 / 11:50 a.m.
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Conservative

Ziad Aboultaif Conservative Edmonton Manning, AB

Madam Speaker, I would like to deeply thank my colleagues, the hon. members for Vancouver Kingsway, Calgary Confederation, Calgary Shepard, and Sherwood Park—Fort Saskatchewan, for their eloquent speeches, their efforts, and their support.

Before I begin my speech, I would like to comment on the parliamentary secretary's speech this morning in which he stated that this bill is unnecessary. Almost 300 Canadians are dying needlessly every year. This bill tries to do something about it by trying to put forward an act that would help reduce that number or perhaps wipe it out completely. It is unfortunate that the parliamentary secretary is taking such a political position on something that would be touching Canadian lives and Canadians' health and future every day.

We in this House have an opportunity to do good or ill for Canada. I am asking all honourable Members to make a choice to do good and support Bill C-223.

Health professionals and transplant advocacy organizations are calling for an improved organ donation system in Canada. Working together, we have the power to benefit all Canadians. We need a national organ donor registry.

We have also heard from some today who have concerns about the proposed registry. I appreciate their opinions. However, I urge all members to not allow the naysayers to influence their vote. I am asking members to carefully consider this issue and this bill and to do the right thing. If members feel that this bill has flaws, then they should make suggestions as to what needs to be done to improve it. It should be sent it to committee, as all of the members on this side and the NDP said earlier today. There, witnesses from across the country can talk about organ donation, transplantation, and the need for improvements in the system we now use.

This is not some abstract theory we are debating. For many Canadians, this literally is a matter of life and death. I have mentioned before that I am an organ donor and that my son is a three-time transplant recipient. Without those operations, he would have died.

In 2014, there were 2,356 organ transplant surgeries performed in Canada. At the end of the year, more than 4,500 Canadians were still waiting for the call that an organ was available for them. I deeply understand how they feel. In 2014, 278 Canadians died waiting for organ transplants, and 246 died the year before. In 2012, Canada ranked 20th out of 75 countries for deceased organ donor rates. Spain, the United States, and the United Kingdom are among the countries that are doing much better than we are.

This is not a partisan issue. This is not an area in which we should be playing politics. This is not something that should be subject to bureaucrats protecting their turf and saying that this bill should be rejected because it does not conform to their vision of the way things should work. The system needs to be improved, and this bill would do that.

When we first spoke about Bill C-223, the Parliamentary Secretary to the Minister of Health told us “the bill would duplicate existing initiatives between the federal government, provinces, territories, and the Canadian Blood Services.” That is not the case. The bill gives the Minister of Health the legislative authority to determine how the registry is set up. It does not duplicate existing initiatives. However, it does provide a national vision.

Those in transplant advocacy groups are asking for this legislation. They say that what is in place is a good start but is not good enough.

Medical professionals and patient organizations have been telling me that Canada does not have a true organ donation registry and that we must have one.

The parliamentary secretary also said that another reason the bill will not be supported—

Canadian Organ Donor Registry ActPrivate Member'S Business

April 15th, 2016 / 1:25 p.m.
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Conservative

Ziad Aboultaif Conservative Edmonton Manning, AB

moved that Bill C-223, An Act to establish the Canadian Organ Donor Registry and to coordinate and promote organ donation throughout Canada, be read the second time and referred to a committee.

Madam Speaker, I wish to speak today in support of my Bill C-223, an act to establish the Canadian organ donor registry and to coordinate and promote organ donation throughout Canada, which I hope will receive support from all members of the House.

As you may be aware, I myself am an organ donor. In 2003, I made a living donation. I gave part of my liver to my son Tyler. This was not something I did lightly. It is a dangerous operation for both the donor and the recipient.

For Tyler, it was life or death. I love my son. The choice was easy.

At that time, I was becoming increasingly aware of the unmet need for organ donations in Canada. There are literally thousands of people waiting for that telephone call that will change their lives and the lives of their family members. Tragically, for more than 200 Canadians each year, the time runs out before the call comes.

More than 90% of Canadians support organ and tissue donation in theory, but less than 25% have made plans to donate. Canada's organ donation rate is among the world's worst, yet one donor can benefit more than 75 people and save up to 8 lives.

Sometimes, organ compatibility is not enough. Shortly after that transplant, the portion of my liver that Tyler received began to die. For me to donate again was not possible. Another donor was needed or my son would die.

On Christmas Eve 2003, it looked like Tyler's time had run out. His life expectancy was now days, perhaps hours. Almost miraculously, a liver became available from a Quebec man who had just died. We were told it was not a perfect solution. It would only buy time, but time was what we desperately needed.

My wife Liz and I were so thankful to the family of that anonymous donor. In their grief at the loss of a loved one, they cared enough to think of others. We will be forever in their debt. Their gift gave us our son when we thought we would lose him.

Having experienced the organ donation system first-hand, I became acutely aware of the need for a more coordinated effort in this area, both locally and nationally. I became an advocate for all those like Tyler, those in need of a life-saving transplant. All too often, it seems to me, the difference between life and death is one of simple awareness. People do not know the good they could do. Such awareness is key.

While some provinces have a large percentage of citizens who have indicated they wish to be organ donors, others have very few, far below the national average. As I stated earlier, Canada is far behind other countries in the percentage of citizens who have let authorities know of their willingness to be organ donors. I have been told by many of the people I have met who work in this area of medicine that there is a real need for a national registry, such as is proposed in this bill. Representatives of awareness groups, health care organizations working in the transplant field, and donor and recipient families have been overwhelmingly positive in responding to the bill. Everyone I have met with has had one simple question: how can we help?

To return to my story, with Tyler's second transplant, our journey was not yet over. We knew in 2003 that the liver he received was not a long-term solution. After a decade it too began to fail. Once more we entered the medical system, our emotions a mixture of hope and fear. There were no guarantees. We knew the statistics. We knew the odds. We prayed yet again for a miracle.

Once again a grieving family offered a loved one's organs for the good of the community, and a match was made. This time we hope Tyler has a liver that will be with him for the rest of his life. We are so grateful to have a healthy son, now a young man beginning to make his way in the world, someone of whom we are very proud.

Our good fortune brings with it a sense of not only gratitude but also responsibility. I firmly believe that it is incumbent on each of us to give back to our community, to work to make it a better place. Tyler's health problems have caused me to become an advocate for increased awareness of the need for organ donations in Canada. I promised myself and him that if the day should ever come when I would have the opportunity to make a positive difference on a national level, I would do so. The time to do that is now, and I hope I have members' support.

Why this bill at this time? What need would it serve?

This legislation would serve a huge need. In 2014, for example, 2,433 solid organs were transplanted in Canada. That is a 25% increase since 2009. These transplanted organs included 1,430 kidneys, 537 livers, 226 lungs, 161 hearts, and 79 pancreases.

One of the things a national registry would do is improve the wait times for Canadians who need a transplant. Right now that can vary considerably from province to province. If an individual needs a new kidney, for example, it can take more than four years to make it to the top of the list. If an individual needs a new lung, that could take 19 months.

Far too often people on the transplant list do not live to receive a donation. The number of patients on the waiting list for kidney transplants is approximately two and a half times higher than the number of transplants performed. More than 1,600 Canadians are added to wait-lists each year. The demand for organs is increasing, but the supply is not maintaining the pace. We are falling behind.

Transplantation is expensive, but there is a quality-of-life issue as well for those in need, and as it turns out, the cost to our health care system is actually lessened by transplantation. Once a patient receives a transplant, that patient can return to a relatively normal existence, their extreme medical difficulties behind them. For example, a kidney transplant candidate is very likely to be on dialysis, a procedure that will no longer be necessary after the patient receives a new kidney. That saving alone can be about $50,000 annually. Medical treatment should not be about dollars and cents, but it is good to know that we can do the right thing and save money for taxpayers at the same time.

An integrated system such as proposed by the bill would have a major impact on patient outcomes. This registry would facilitate organ donations in all of the provinces and territories and greatly assist medical professionals in providing timely aid for those in need, saving lives in the process.

A national organ registry has been discussed for years. Now is the time to do something about it. We have the opportunity to do something positive that will save Canadian lives. That, it seems to me, is what Parliament should be doing.

Without a national registry, it is all too easy to imagine someone not receiving the gift of life simply because the need was not known. When a kidney, lung, or heart becomes available on one side of the country, doctors should instantly be aware on the other side.

A national donor registry would give the gift of time to health care professionals. With many transplant opportunities being time-sensitive surgical procedures, anything that can save hours or minutes in uniting donors and recipients is going to be a literal lifesaver.

The time for talking about a national organ donor registry is over. It is time for action.

Canadian Organ Donor Registry ActPrivate Member'S Business

April 15th, 2016 / 1:40 p.m.
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Conservative

Ziad Aboultaif Conservative Edmonton Manning, AB

Madam Speaker, actually, there would be no interference. We have a national universal health care system, and each province has its own budget to run its own health care system.

What we are proposing is this. We are proposing that the Minister of Health needs to be able to bring all the provinces together, let them coordinate, and let the national registry be mostly utilized in the best interests of the people waiting for organs. If we did not need it, we would not see Canada ranked among the lowest in performance in that area.

The national registry would be run by professionals, NGOs, all third parties, and even individuals. I have heard from so many different areas across the country, and it is a must. We need a national registry. It is a must. It will never interfere.

It is up to the Minister of Health to put together the best mechanisms to coordinate the efforts of all provinces.

Canadian Organ Donor Registry ActPrivate Member'S Business

April 15th, 2016 / 1:40 p.m.
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NDP

Alistair MacGregor NDP Cowichan—Malahat—Langford, BC

Madam Speaker, I congratulate the member for Edmonton Manning for bringing forward this legislation. It is a wonderful bill. However, I have a question for him.

In 2014, the NDP supported removing the ban on certain organ and tissue donations made by men who have sex with men. Efforts to create a national registry, we believe, should go hand in hand with efforts to remove this unscientific discrimination and replace it with a science-based behavioural screening process.

In 2014 also, the member of Parliament for Esquimalt—Saanich—Sooke moved a motion in the House of Commons calling for the government to do just that.

The goal is the same. We want to link donors with people who need the organs. If we get this bill to committee, would the member support bringing something like that forward?

Canadian Organ Donor Registry ActPrivate Member'S Business

April 15th, 2016 / 1:40 p.m.
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Conservative

Ziad Aboultaif Conservative Edmonton Manning, AB

Madam Speaker, I thank the hon. member on the NDP side for his support. It is great to hear.

What we were suggesting is that the minister should be able to find the proper mechanism to coordinate all the efforts. We want to make this bill as perfect as it can be, to serve every Canadian waiting in need and to save the 200-plus lives that we are losing every year because proper coordination is not in place.

With all respect to the efforts and activities happening right now in that area, they are not enough. We need a national eye on that, and only Health Canada is able to do that. I support every effort going into making this legislation as perfect as it can be.

Canadian Organ Donor Registry ActPrivate Member'S Business

April 15th, 2016 / 1:40 p.m.
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Liberal

Ken Hardie Liberal Fleetwood—Port Kells, BC

Madam Speaker, I congratulate the member. I have found in my short time here that quite often private member's bills really do reflect the spirit that this place should have, coming forward in the national good.

What I hear is the need for leadership, directed appropriately at the government side. Is the member aware of any impediments or opposition to the kind of national coordination which he has called for? Has he heard from any of the provinces that suggest there may be some barriers here?

Canadian Organ Donor Registry ActPrivate Member'S Business

April 15th, 2016 / 1:45 p.m.
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Conservative

Ziad Aboultaif Conservative Edmonton Manning, AB

Madam Speaker, as far as reaching out to different areas, from coast to coast to coast, everything we have heard is extremely positive. Everyone said that it was time, that they needed a hero to carry this and take it through. We have been waiting a long time to have a blessing on the federal stage, or someone who will carry this torch through.

I do not necessarily want to be the hero, but I have a good cause. I am a donor, and my son was a recipient. I and my family have been faced with this since 2003. We got to know so many cases across the country.

We have spoken about the necessity of organ donations, and there has been nothing but positive feedback. With this historical opportunity, I hope the minister will get on it and the government will do the same.

Canadian Organ Donor Registry ActPrivate Member'S Business

April 15th, 2016 / 1:45 p.m.
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Brampton West Ontario

Liberal

Kamal Khera LiberalParliamentary Secretary to the Minister of Health

Madam Speaker, I rise today to speak to Bill C-223 and to highlight our government's efforts to improve the organ and tissue donation and transplantation system in Canada. Let me begin by thanking the hon. member for Edmonton Manning for bringing this important topic to the attention of this House and for his advocacy on this important file. As a registered nurse, this issue is extremely important to me as well.

Our government recognizes that organ and tissue donation and transplantation saves lives and improves the health status of Canadians. Transplantation is a unique and complex service, for it depends on the donation of an altruistic gift from one person to another. It involves several hospital departments and medical disciplines. It crosses provincial and territorial boundaries, and it has a significant safety component.

Organs are our scarcest resource and are in high demand. According to the latest statistics released by the Canadian Institute for Health Information, in 2014 there were 2,356 transplants performed. However, over 4,500 Canadians were waiting for an organ transplant. Of those, 3,400 Canadians were waiting for a new kidney. While the number of patients waiting for an organ varied by organ type, Canadians waiting for a new kidney accounted for more than 77% of those waiting.

The need for organs will continue to increase because the Canadian population is aging, and because of the persistent shortages of certain organs, especially kidneys. End-stage kidney disease is a primary cause of kidney failure. According to the latest statistics, there were more than 5,200 newly diagnosed cases in 2014, of which 36% had diabetes, a most preventable disease, as a main cause. These numbers suggest that we can do more, and our government is firmly committed to working closely with our provincial and territorial counterparts and key stakeholders in the health community to provide the very best results for Canadians as it relates to organ and tissue donation and transplantation in Canada.

In the area of health, it is important for the federal government to work together with the provinces and territories, and in accordance with the Constitution of Canada, which indicates our federal, provincial, and territorial governments' respective powers. Under the Canadian Constitution, the provinces and territories are responsible for delivering care services within their jurisdiction, including the donation and transplantation of organs and tissues. The federal government has a key role to play in improving the organ and tissue donation and transplantation system in Canada, and that is exactly what we are doing through strategic investments and overseeing the safety of the system.

Since 2008, the federal government, the provinces, and the territories have invested over $64 million to support the efforts of Canadian Blood Services to coordinate a nationally focused organ and tissue donation and transplantation system. The Canadian Blood Services is a national not-for-profit charitable organization that manages the blood supply in all provinces and territories, and works collaboratively with Héma-Québec for the Province of Quebec. Together, the Canadian Blood Services, in conjunction with the federal government and the provinces and territories, has been collaboratively making progress towards improvements in the organ and tissue donation and transplantation system in Canada.

One of the major improvements has been establishing the Canadian transplant registry, a national donor registry that has three interprovincial organ sharing programs. Two of these interprovincial programs relate specifically to kidney donation and transplantation. The first is the paired kidney donation program, which facilitates the matching of kidneys between living donors and recipients. The second is the highly sensitized patient program, which facilitates sharing of kidneys for hard-to-match patients. The third is an interprovincial program that is the national organ wait-list, which facilitates the sharing of organs among high-needs patients.

Currently work is under way to formalize existing guidelines for interprovincial sharing of high-status organs such as hearts and livers. The Canadian transplant registry is guided by interprovincial policy and informed by evidence-based leading practices. It is a single window that ensures that our organ donor list is comprehensive, timely, and readily accessible. In addition to investments in the Canadian Blood Services, the federal government is responsible for regulating the safety of the donation system and transplantation of organs and tissues by ensuring the safety of cells, tissues, and organs for transplantation.

Organ and tissue donation and transplantation is a complex health service that our government takes seriously. Improving the system requires federal, provincial, and territorial leadership, as well as key stakeholders support. This is not an easy task.

However, I am pleased to say that through this collaborative approach between federal-provincial-territorial, and stakeholder partners, we are making real progress to improve the system. Over the last decade, the number of deceased organ donors has gone up by 44%. Although more people are donating, there is still more to do to meet the need for more organs.

When looking at transplant trends in Canada, between 2005 and 2014, the number of lung transplants performed increased by 52% and the number of liver transplants performed increased by 27%. However, there is still more to do, and our government will continue to support this work to ensure that Canadians have access to a world-class system of donation and transplantation of organs and tissues.

Regarding Bill C-223, an act to establish the Canadian Organ Donor Registry and to coordinate and promote organ donation throughout Canada, the government agrees with the objective of improving the donation and transplantation of organs and tissues in Canada, but does not support this bill for a number of reasons.

First, the bill would duplicate existing initiatives between the federal government, provinces, territories, and the Canadian Blood Services. It would also duplicate provincial and territorial efforts. For example, provinces and territories already have legislation on organ donation and tissue transplantation, and many of them already have registries of organ donors that are linked to an already existing Canadian registry of organ donors.

Another reason why this bill will not be supported is because it would shift federal, provincial, territorial responsibilities. For example, the recommendations proposed with regard to the national strategy for consent, confidentiality, health policies, and procedures are all responsibilities of provincial and territorial jurisdiction.

Looking more closely at the issue of privacy, Bill C-223 would require that the federal government collect personal health information on organ and tissue donation and transplantation. This is already being done by the provinces, territories, and Canadian Blood Services, with appropriate data-sharing agreements to meet provincial and territorial privacy requirements.

Introducing new federal legislation at this time would raise provincial and territorial concerns about jurisdiction over the delivery of health care in the area of organ and tissue donation and transplantation. This could become an impediment to the work that is currently under way. Our government's approach is to build stronger partnerships with our provincial and territorial counterparts.

Bill C-223 anticipates an increase in organ donation rates. However, the evidence does not support registries as a way to improve donation rates. The evidence has found that there is no relationship between the number of registered donors and donor numbers. In fact, donor numbers tend to remain flat even when there is an increase in registries.

Recent provincial and territorial experience shows that registries alone do not impact donation rates without an optimal identification and referral process. Provinces and territories found that 85% to 90% of donors had not indicated a decision to donate unless they were approached. Bill C-223 would not lead to increased donation rates and would not provide further benefit to Canadians.

In conclusion, I would like to reiterate that our government recognizes the need for improvement in the organ and tissue donation and transplantation system in Canada. Collaboration, consultation and engagement with the provinces and territories as well as key stakeholders are necessary to address the complexity of the changes that are required in the system.

Our government will continue to support the organ and tissue donation and transplantation system improvements that are under way. We are committed to producing results for Canadians to ensure that Canada has an accessible, safe, and comprehensive world-class organ and tissue donation and transplantation system.

I look forward to working with my colleague, the member for Edmonton Manning on this file.

Canadian Organ Donor Registry ActPrivate Member'S Business

April 15th, 2016 / 1:55 p.m.
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NDP

Alistair MacGregor NDP Cowichan—Malahat—Langford, BC

Madam Speaker, I would like again to offer my congratulations to the member for Edmonton Manning for bringing forward this legislation.

I am proud to be one in the long line of New Democratic Party members of Parliament to speak in favour of this issue over the years. It is absolutely crucial that we support the creation of a pan-Canadian registry for organ donations in collaboration with the provinces and territories.

This is the latest attempt of a parliamentary colleague taking up the NDP's torch from the 40th and 41st Parliaments where former MP Malcolm Allen tabled similar bills. In this Parliament, a Conservative colleague is sponsoring the bill and I truly hope that through debate we can come to an all-party consensus.

It is unfortunate to hear that the Parliamentary Secretary to the Minister of Health has indicated that the government will not support the bill. I really thought this would be an easy bill for Parliament to pass, but unfortunately it is not.

Back in 2011, Canadian Blood Services and organ and tissue donation transplant communities produced a call to action. This call to action formally recommended the establishment of an integrated interprovincial organ donation and transplantation system by 2017. That is next year.

Every year that we do not act upon this, more Canadians will not get the help they need. According to the Canadian Transplant Society, 1,600 Canadians will be added to organ donor wait-lists every year. This means that at any given time there are approximately 5,000 Canadians who are in need and waiting for an organ or tissue transplant. This is no small matter. These Canadians waiting for transplants often live with severe medical conditions and they must also endure end-stage organ failure.

We know based on surveys that over 80% of the people in this country would donate their organs but fewer than 20% of us have actually made arrangements to do so. Our country's deceased donation rate is relatively low when we put it up against other comparable countries. This is in part due to there being a lack of a nationwide registry that would unify the provinces and other actors that are currently operating independently.

Talking about the benefits of having a registry, my colleague rightly pointed out some clear benefits to this registry, but I would like to highlight some of my own thoughts on this legislation.

The national registry would improve the availability of organs to patients in need of transplants. This is the most obvious benefit, but something else that should be brought up is that it is likely also to reduce provincial health care costs. The reduction in people waiting with severe medical conditions caused by easier access to organs for patients in need would allow costs to come down and also would reduce wait times for other health care needs.

While mentioning wait times, by increasing the efficiency in the supply of donor organs and tissues, a national registry would be fairer and more equitable when it comes to waiting for transplants as right now there are wild disparities in wait times across regions and provinces.

This gives the call to action a very clear context for why such a registry that is accessible, consistent, and allowed to legally authorize donations based on the wishes of the donor is so important.

With all of this in mind, New Democrats are supporting the bill to go to a parliamentary committee so that we can perform an in-depth study of this piece of legislation. The bill is potentially life-saving to many of our fellow Canadians and it is vitally important that we get the details right.

To make sure we get these details right, we should look at the experiences of other jurisdictions before we get rid of the bill wholeheartedly. We have to look at jurisdictions which have implemented presumptive organ and tissue donation as a means of dramatically increasing potential donors to save lives. Right now, we are unfortunately behind countries like Spain, Cuba, Uruguay, and even the United States on donation rates.

We should also, as I mentioned earlier in a question, be speaking about the current discriminatory practice in blood, tissue, and organ donations. New Democrats moved in 2014 that the Government of Canada take immediate measures to end the current discriminatory policy governing blood and organ donations from men who have sex with men. We believe that efforts to create a national registry should go hand-in-hand with efforts to remove this unscientific discrimination and replace it with a science-based, behavioural screening process. It is time for evidence-based decision-making. This would ensure that all potential donors are treated with equal dignity and respect.

The Liberal platform during the election also promised to end this discriminatory ban. Therefore, I think we can find common ground in the House on this issue.

Other reasons for bringing this bill to committee lie with some of the issues we believe need to be worked out. The bill would give substantial power and responsibility to the health minister, rather than delegating it to the administration of the registry, to a registrar, not to mention we would need to make clear the reporting mechanisms to Parliament. There should be a clear, detailed process for provincial affiliation to a national registry.

The parliamentary committee study would give members a chance to hear from witnesses on this bill, something which is incredibly important. These witnesses would inform our opinion on what the final outcome should be.

There are clear details that need to be worked out on this legislation, but we are also in need of it to pass as soon as possible.

This debate makes me remember the struggle of Hélène Campbell a few years ago to find organ donors. She was looking for a double-lung transplant. Instead of just waiting on the list, she was able to raise international awareness to her plight and to the lack of organs that were required for people to heal. She was featured on The Ellen DeGeneres Show in the United States, and also had a public exchange with Canadian pop star Justin Bieber over social media, which raised awareness and reportedly led to a surge in donor rates.

Personal stories like these enable people to make personal decisions to become organ donors. She was able to get the organs needed and was greeted by the then federal health minister upon her return home.

Hélène's personal story was subjected to media attention and led to some very positive results. However, there are still many more personal stories that are not told internationally but still require just as much immediate attention.

The statistics are clear, and they are dire. Over the past decade, more people have waited for a transplant than the number of operations actually performed in a given year.

With respect to seniors, which is something I take very seriously as the NDP's critic for seniors' issues, there is an increase in end-stage kidney disease linked to the growing aging population in our country. Over the next two decades, our senior population is expected to double. Therefore, this is a particularly strong issue among many and it will get out of hand even more if there is not swift and specific action on that front.

The New Democrats have been highlighting tragic stories in the House for many years. We asked the government to address the issues of desperate Canadians heading overseas to buy organs on the black market, only to see the origans fail when they got home. These Canadians ended up in hospital and, tragically, some died.

We should not be putting the citizens of our country in that kind of a situation.

The situation is currently unacceptable. I think we could move forward swiftly with this legislation if only we had the government's support. We really should be hearing witnesses and discuss the implementation of a national organ donor registry. At least give the committee time to hear from experts on this matter.

We owe it to the people of our country who are living with a stressful wait of organ and tissue donations. They need to see federal leadership on this issue to ensure Canadians get the health care they need.

I would like to again congratulate the member for Edmonton Manning. I know he is personally affected, with his son, and has gone through this. As members of Parliament, when we bring personal stories like his to the House, it brings the betterment out of us. We leave the partisanship behind the door when we bring forward an issue that we know will truly benefit Canada.

I am proud to stand as a member of the New Democratic caucus to lend my full support to getting this bill to committee.

Canadian Organ Donor Registry ActPrivate Member'S Business

April 15th, 2016 / 2:05 p.m.
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Conservative

Harold Albrecht Conservative Kitchener—Conestoga, ON

Madam Speaker, it is an honour to have the opportunity to speak to Bill C-223, an act to establish the Canadian Organ Donor Registry and to coordinate and promote organ donation throughout Canada.

This is monumental legislation and I am very proud of my colleague, the member for Edmonton Manning, for introducing it, as it will absolutely save lives.

My comments this afternoon will come from a different perspective than most of those who will have the opportunity to speak to the legislation. I do not presume to be an expert on organ transplant issues. Therefore, I ask the indulgence and patience of my colleagues as I share some of my personal journey over the past several years, some of whom may already know it.

On the May 2, 2011 election night, as my wife Betty and I were watching the early results of the election along with a campaign volunteer, Betty suddenly experienced a headache. Within seconds she collapsed to the floor. While she was breathing normally and had a strong pulse, there was no response. Minutes later, following a 911 call, local volunteer firefighters from the New Dundee detachment were on the scene to provide assistance. They were followed very closely by EMS personnel.

Betty was taken by ambulance to Grand River Hospital, placed on life support, and immediately transferred to a major health centre for more specialized care. ICU personnel and surgical specialists cared for her. They explained in some detail that Betty had experience a spontaneous intracranial hemorrhage and that in spite of surgical intervention attempting to stop the bleeding, their best efforts had been unsuccessful. The intense bleeding had applied extreme pressure to sensitive brain tissue and brain function had ceased.

After consultation with neurosurgeons and ICU doctors regarding Betty's neurological death, we now were faced with the question of the possibility of organ and tissue donation. We were then introduced to a team of very compassionate personnel representing the Trillium Gift of Life Network. They presented the options to us and provided the answers to all of the questions that were raised by me and my three adult children. There was no doubt in our mind as to what Betty would want to do. We knew that she would want to continue giving in the same spirit of generosity in her death as she had always done in her life.

Betty and I had also discussed this issue openly each time we renewed our driver's licence, and had always both agreed that should anything ever happen to either of us we would be open to the question of organ donation. We would want to help in that way.

As I reflect on the difficult journey of our grief during that difficult time, that journey of grief has been made less difficult by two key factors: first, our personal faith journey as followers of Jesus Christ, and our confidence in the resurrection and the certain hope that he gives us; and, second, our decision to follow through on Betty's wish that upon her death, if possible, her organs be donated.

Why not help out one of those thousands of people who are currently on the waiting list for a specific organ? Many of those who are waiting are still in the prime of life, and organ donation can make the difference between life and death. Our decision, while not easy, was made somewhat lighter knowing that someone else would possibly receive the gift of life, even as we journeyed into our own grief and loss.

As an aside, on a technical note, let me assure members of the House and Canadians that we can rely on the safety of organ transplants in our country. This is because of Canada's strong organ transplant community, and Health Canada's work in establishing rigorous safety standards and requirements through the implementation of the safety of human cells, tissue and organs for transplantation regulations.

In the years and months following Betty's death, the Trillium Gift of Life Network followed up regularly with letters of support, offering access to resources, and letting me know of the health status of the organ recipients. Five people had received the gift of life through organs that were transplanted: heart, liver, lungs, and two separate kidney recipients. In addition, others have benefited from the gift of her eyes, bone, and muscle tissue, which will aid in the transplant process. I know that because of our decision to donate, there are now at least five people enjoying fuller, richer lives, and even more who are benefiting from tissue transplants.

We are in a death-denying society. No one wants to think he or she will die before 80 or 90. Because of amazing medical advancements, many people will live to that age, and even beyond. However, we have no guarantee, as my family discovered so quickly, and with no advance warning of any kind. We know that 4,000 Canadians are waiting for organ donation at any given period.

In Ontario alone, more than 1,500 people are waiting for a life-giving transplant. More than 1,000 of those people are waiting for a kidney transplant.

It is easy to register one's intention to donate. In Ontario, one can simply go to the website beadonor.ca. Elsewhere in Canada, one can go to www.transplant.ca.

Right now, only 20% of Ontario's residents have registered their intent to be an organ or tissue donor. Why not go online right now and register?

In addition to registering, it is important for individuals to discuss this matter with their families. They should let their families know their decision and then register at beadonor.ca. This decision could very well save a life and offer hope.

Thousands of adults and children are counting on us and our fellow Canadians to give the gift of life. It is time that we as a nation closed the gap between the need for life-saving and life-enhancing organs and the supply of organs that are available. Why not take steps now to make a difference? It could be anyone: a son, a daughter, or a granddaughter who will be the recipient of our or someone else's good decision to register to donate our organs.

I think all my colleagues will understand why I seconded this fantastic initiative by my colleague. It really is unacceptable that 200 Canadians die each year waiting for an organ transplant when only 20% of Canadians are registered.

Canada needs a national initiative that raises organ donation awareness and encourages people to register to be a donor.

As I said at the beginning of my talk, a Canadian organ donor registry would save lives, and I am hopeful that all parties in this House will unanimously support this extremely important legislation.

Let me just add that I ask the government not to hide behind potential jurisdictional challenges and to support Bill C-223.

Canadian Organ Donor Registry ActPrivate Member'S Business

April 15th, 2016 / 2:10 p.m.
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Liberal

David Graham Liberal Laurentides—Labelle, QC

Madam Speaker, I rise today to speak to Bill C-223 and our government's efforts to improve the organ and tissue donation and transplantation system in Canada.

Indeed, the member for Edmonton—Manning has put an important issue before the House. Evidence demonstrates that organ and issue donation and transplantation saves lives, improves the health status of Canadians, and is cost effective for the health care system. It is, in a word, important.

For example, in 2014 2,356 Canadian lives were saved through organ transplants. Patient and family testimonials attest to the improvements in longevity and quality of life of patients receiving organ transplants.

Transplantation is also cost effective for our health care system. For example, the most cost-effective treatment for end-stage kidney disease is transplantation. Dialysis costs between $40,000 and $60,000 a year. A kidney transplant costs approximately $40,000, followed by approximately $10,000 in transplant drug therapy. Over time, that would lead to over $100 million in cost savings for the health care system per year if all patients waiting at year end received a transplant.

Our government is committed to working closely with our provincial and territorial counterparts and key stakeholders to provide the best results for Canadians as it relates to organ and tissue donation and transplantation in Canada.

As my colleague, the hon. Parliamentary Secretary to the Minister of Health noted, the government of Canada is doing its part by recognizing that improvements are needed in the organ and tissue donation and transplantation system in Canada. Together with the provincial and territorial governments, we have invested over $64 million since 2008 to support the Canadian Blood Services' efforts to improve the system. This funding supports its work in establishing three vital interprovincial organ sharing programs under the Canadian transplant registry.

We know from recently published statistics from the Canadian Institute for Health Information that over the last decade the number of Canadians waiting for a new organ has been higher than the number of transplants performed within a given year. In fact, we know that more than 4,500 Canadians were waiting for a transplant in 2014.

With an aging Canadian population, we expect that there will be a higher demand for organs over time. This means we must collectively focus our efforts on increasing the number of organ donors across Canada. One donor alone can save up to eight lives and benefit more than 75 people.

We can all help. Organ and tissue donation is a unique opportunity to make a concrete difference in the life of someone else. Three ways that have been proven to increase the number of organ donors across Canada are strengthening public awareness, improving health professional education, and implementing leading practices.

Our government is committed to encouraging Canadians to become organ donors through active public awareness campaigns. Since December 2013, Health Canada has had a web page on the Healthy Canadians website to promote organ and tissue donation across Canada and assist Canadians with registering as donors with their provincial and territorial organizations through an interactive map. I would invite all my colleagues in the House to visit the website.

April17-23 is National Organ and Tissue Donation Awareness Week , and our government, the provinces and territories, and Canadian Blood Services are sending messages to Canadians and promoting events to raise public awareness.

Our government is committed to encouraging all Canadians to consider becoming donors. It takes a few minutes to take the important step of registering to donate. Canadians are also being encouraged to discuss organ and tissue donation with their doctors and their families and friends. It is important that they know your wishes and you know theirs.

In addition to raising public awareness, the other proven methods of increasing the number of donors are through improving health professional education and implementing leading practices. Health care professionals are a critical factor in improving the number of donors. Opportunities may be missed if physicians are unaware of best practices, do not know the patient's wishes regarding donation, or do not ask families about donation.

Over the last decade, the skill level among clinicians in the organ and tissue donation and transplantation community has increased through professional education on leading practices. For example, through the Canadian Blood Services' initiative, new leading practices have been developed on topics such as donor management, death determination, and end-of-life family conversations and consent. These leading practices are being shared and implemented across the country through training health care professionals and changing health care policies or procedures for organ and tissue donation and transplantation.

Our government applauds these efforts and is committed to continuing to work with the provinces and territories, the Canadian Blood Services, and other key stakeholders to enhance the organ and tissue donation and transplantation system in Canada.

Our government strongly supports the objective of improving the organ and tissue donation and transplantation system but believes that Bill C-223 would not lead to improved donation rates. As my colleague the hon. Parliamentary Secretary to the Minister of Health noted, the evidence does not support registries as a way to improve donation rates.

The other measures proposed in the bill would duplicate the collaborative initiatives already under way with the provinces and territories, and with Canadian Blood Services. The proposed measures would also infringe on provincial and territorial jurisdictions for the delivery of health care in the area of organ and tissue donation and transplantation.

Provinces and territories are already investing in strategies known to improve organ donation rates, such as professional education, implementation of leading and best practices, compilation of quality data to support performance management and public reporting, investments in research and innovation, and enhancements to health system capacity.

We believe that introducing national legislation without adequate consultation, engagement, and buy-in from the provinces and territories and other key stakeholders would be detrimental to the system improvement work that is already under way. It is an implementation, jurisdiction, and co-operation issue, not necessarily a philosophical one.

Our government is committed to improving the organ donation rates to ultimately improve the organ and tissue donation and transplantation system in Canada.

Our government commends every living and deceased donor and their families who have saved the lives of thousands of Canadians. We applaud every Canada who has registered to become a donor, every organization that is promoting organ donation awareness, all health care professionals who are enhancing their skills through training, and every health care institution that is implementing new policies and procedures to improve organ donation.

Together we can make a difference. Together we can produce results for Canadians. Together we can ensure that Canada has a world-class organ and tissue donation and transplantation system.

I would like to congratulate the member for Edmonton Manning for his hard work on this file, and I look forward to the debate continuing.

Canadian Organ Donor Registry ActPrivate Member'S Business

April 15th, 2016 / 2:20 p.m.
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NDP

Rachel Blaney NDP North Island—Powell River, BC

Madam Speaker, first I want to thank the member for Edmonton Manning for bringing the bill forward and also sharing his very personal story.

I am so pleased to speak in support of Bill C-233 . Last week, my son Henry donated blood for the first time. His commitment came from having a cousin who battled leukemia and at this point is healthy, as his mother watches and waits.

Often when we know what we can do to help, we do it. For many years I was a volunteer with a hospice. Every Saturday evening, I would sit with the palliative patients and their families. Some of these families were still holding out for an organ donation to save their family members. It was incredibly hard to sit with these families who could do nothing but hold onto hope.

We know that every year 1,600 Canadians will be added to the organ donor list, while 5,000 Canadians are still waiting. These numbers tell us a story. They tell us the story that we need to do better.

A national registry would make a significant difference. It would help people across this country. It would increase access, address disparities, and increase efficiency. It would be a national program that could bring all the provinces and territories together to make a difference, to give people a second chance in this life.

In my riding of North Island—Powell River, I have a constituent named Debbie Hooper, who is a 56-year-old grandmother. She has been waiting three years by her phone, waking every morning hoping the call will come that means her lung disease will be fixed by this amazing gift of an organ transplant.

Across this country, people are facing challenges that many of us have never experienced. We have to do our due diligence as people who have been elected to sit in this place to make sure we are helping save the lives of people in this country, and that we are creating accessibility.

I have heard from the other side, and I am so sad to see that the bill will not be passed by the other side.

We need to send the bill to committee. We need to be hearing those witnesses from across this country. We need to hear how it is going to work. We are asking that the bill be before committee so that we can see potential solutions that would make a difference and give people their lives.

Brenda Small is another constituent who received a transplant, and she said something extremely poignant. “It’s the worst day of somebody’s life and the best day of yours. I cry every time I think about it.”

If we are not doing our work, bringing forward this issue to committee, having the discussions we need to have so that we can make the best decisions, bringing together the provinces and territories to see how we can do this more effectively, then we are not doing our jobs.

I ask, please, for people to take this into their hearts, to think as we are supposed to in the House of Commons, and to make a decision that looks after the people of Canada.

I thank the member for his hard work. I am thankful for the history that we have in this place of multiple members bringing forward private member's bills in this same theme of creating a united country, acknowledging that we have a universal health care system, and making a change that will save lives.

Canadian Organ Donor Registry ActPrivate Member'S Business

April 15th, 2016 / 2:20 p.m.
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Conservative

Bradley Trost Conservative Saskatoon—University, SK

Madam Speaker, I have to admit that I was not anticipating getting to speak today, until a couple of minutes ago, but I appreciate the opportunity to stand in the House on this private member's legislation. One thing I would like to do is explain to new members in the House why, even if they are not at this point convinced of the legislation, the bill needs to go to committee.

I heard the parliamentary secretary's arguments earlier today about jurisdictional issues, and the various problems that this bill may have, but I will remind hon. members, particularly government members, who, of course, will naturally have a certain degree of deference for the parliamentary secretary, which no one is disputing, that this is a bill that seeks to solve a real problem. It is helping to save people's lives. The principles underlying this I am sure every single member of the House agrees with. The parliamentary secretary and members of all parties have said that.

I ask hon. members on the other side to think about this and vote for the bill at least at second reading. Why? We are voting for the principle of the bill. The underlying principle, is to save lives. This is what the hon. member was trying to point out with his very compelling personal story of his great courage with his son and so forth.

Yes, the details of every piece of legislation sometimes are not perfect and sometimes they need to be worked out. However, this is what we need to think about and why this legislation needs to go to committee, so that we can make a better and more perfect piece of legislation to advance this cause.

No one in the House disputes that more lives could be saved if more Canadians were interested in signing up and supporting organ donation to save lives. However, if we end this piece of legislation before it gets to committee, we won't have the ability to understand, argue in a positive sense, and figure out ways to improve the system that we have in Canada.

I have been in the House for a few years, on both sides of the aisle, previously in government and this is the second time in opposition. I realize governments tend to be a little hesitant in supporting private members' legislation that the government is not deeply invested in, but in the previous session, I was the second most likely Conservative member in the House to break party ranks, often because I believe things should be voted on and sent to committee to be discussed and thought about. I was sometimes the only Conservative to back NDP or Liberal legislation. When speaking with voters after having voted for legislation that was not perfect, I never found that people told me it was not a perfect bill and that I had made a mistake by voting for it. That is why I am making the case for what we are doing today.

I will admit that I do not completely understand the differences and the jurisdictional issues between the provincial system and the federal system. I do not totally understand what all may be involved, but I do understand this absolute one simple fact, that this is an attempt to make a system better, a system that is not world class, that is not first, that is not the best. On something this serious and substantive, human life, we should absolutely give our all.

That is why I am asking all members, even if they are unsure of the legislation, to give this piece of legislation a chance. Organ donation saves lives. It is one of the most noble causes we will ever be able to support around here, because there is nothing more precious than human life.

I encourage all hon. members to think about this. Even if they are not completely convinced of the merits of the legislation, they should remember to vote for it in principle at second reading so that we can make it better.

I am happy to have had the time to share my words with the House.

Canadian Organ Donor Registry ActRoutine Proceedings

February 19th, 2016 / 12:05 p.m.
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Conservative

Ziad Aboultaif Conservative Edmonton Manning, AB

moved for leave to introduce C-223, an act to establish the Canadian organ donor registry and to promote organ donation throughout Canada.

I rise today to introduce my private member's bill to establish the Canadian organ donor registry and to promote organ donations throughout Canada.

More than 200 Canadians die each year waiting for an organ transplant. Their deaths could be prevented if only more people were aware of the need and willing to help. As someone who has been an organ donor and who has seen the need first-hand in my family, I understand only too well how the lack of national coordination can sometimes lead to tragedy. A national registry would help save lives. I urge all members to support this bill and promote organ donations throughout Canada.

(Motions deemed adopted, bill read the first time and printed)