Bill C-316 (Historical)

An Act to amend the Canada Revenue Agency Act (organ donors)

This enactment amends the Canada Revenue Agency Act to authorize the Canada Revenue Agency to enter into an agreement with a province or a territory regarding the collection and disclosure of information required for establishing or maintaining an organ and tissue donor registry in the province or territory.

Canada Revenue Agency Act

[Kevin Waugh, Conservative, Saskatoon—Grasswood, SK]

Mr. Speaker, I am pleased to rise tonight to speak in support of the private member's bill brought forth by the member for Calgary Confederation, Bill C-316.

This legislation would amend the Canada Revenue Agency Act to allow Canadians to use their annual income tax returns to register as organ and tissue donors. The agency would be able to enter into agreements with provincial and territorial governments to collect this valuable information, which would then be passed on to the provinces and the territories and be used for the purpose of establishing or even maintaining their organ donor registries.

No information would be passed along to an individual's province or territory of residence unless that individual had authorized the Canada Revenue Agency to do so in the income tax return. As a result, respect for the privacy of Canadians would continue to be of the utmost importance under the bill.

Bill C-316 seeks to address a very serious problem within our health care system facing many Canadians.

Canadian Blood Services estimates 4,500 people across this country are on wait-lists every year to get critical organ transplants that have the potential to save lives. Unfortunately, these organ transplants are not always readily available and the consequences are devastating. To this effect, Canadian Blood Services also reports that on average, 250 Canadians die each year waiting for a transplant. It could be someone's mom, dad, grandma or grandfather.

In 2016 alone, over 4,500 people were waiting for transplants but only 2,835 organs were transplanted. Two hundred and sixty people died that year while waiting for organ transplants. These tragic losses are totally unacceptable and Canadians recognize this major problem. However we can fix this problem and make change for the better. We need to take action to help as many Canadians as possible receive the potentially life-saving organ and tissue transplants that they desperately need.

One of the primary goals of the bill is to give Canadians an annual opportunity to register as organ and tissue donors in a way that is totally simple and cost effective. Provinces and territories would still have the constitutional authority over the establishment and the maintenance of these organ donor registries.

The bill would also allow provincial and territorial governments to use existing resources within the Canada Revenue Agency to assist in the collection of organ donor information in a way that respects the privacy of all Canadians.

The bill is so important because it would make it easier for all Canadians to register as organ donors by simply including the information on their income tax returns.

The Canadian Transplant Society states that while over 90% of Canadians support organ and tissue donation, fewer than 20% of Canadians have actually made plans to donate. For Canadians who wish to register as organ and tissue donors, the process should not be complicated. Canadians should be able to indicate their choice to be an organ or tissue donor in a way that is clear and accessible for all Canadians. Bill C-316 seeks to support this objective for the sake of both organ donors and the thousands of Canadians waiting for critical organ transplants each and every year.

Bill C-316 represents a sensible solution that has the potential to help thousands of Canadians in need and benefit the lives of many more.

Tonight I would like to share two stories with the House, one of an organ recipient and the other of an organ donor family.

Shammi Rathwell is a constituent of mine in Saskatoon—Grasswood. I have known Shammi and her husband, George, for many years. Shammi was 42 years old when her doctor detected a heart murmur. Medication did not fix the issue, and after open-heart surgery to repair a valve, it was determined that the only option to correct this issue was a heart transplant. Shammi, in September 1991, went on the list. She was fortunate. Two months later, she was called.

To quote Shammi, “From the beginning, my transplant went very well. I did have a brief rejection early, but once that was resolved, I have been able to live a full and productive life. It will be 17 years this coming November. I have watched my girls grow, become educated. In fact, one just got married, and I can't wait someday to be a grandmother. I am so thankful to my donor for the gift of life. The family must have been in deep grief and yet made the decision to donate the organ which saved my life. I don't know who my donor family is, but I think of them very often and thank them every day.”

Shammi Rathwell fully endorses Bill C-316.

The second story I want to share with members deals with the tragic accident of the Humboldt Bronco bus this past April that claimed the lives of 16 people.

Logan Boulet was one of the players who died in that accident on Friday night, but the story of this heroic 21-year-old certainly needs to be told. Just the summer before, in Lethbridge, a mentor of Logan's, an athletic trainer named Rick, suddenly passed away. Logan found out that Rick had signed the donor registry earlier in Alberta. He decided then that when he turned 21, he too would respect Rick and follow him to sign the registry in Alberta.

When this tragic accident happened on April 6, his parents, Bernadine and Toby, who I spoke with at length last night in Lethbridge, knew to carry out the wishes of their only son, Logan. Saturday morning, in the hospital in Saskatoon, Bernadine had one simple request. Her request was to hear Logan's heartbeat for the final time. She laid her head on his chest before the doctors proceeded with the successful organ recovery.

Even though Logan has passed, Bernadine and Toby know that their son's heart is beating somewhere today in Canada. The Boulet story will be told many times, not only in this country but in the world, as both parents have agreed to speak about their ordeal to help others better understand the importance of organ and tissue donations. They, by the way, fully endorse Bill C-316.

Since Logan's tragic passing, almost 100,000 Canadians have registered to become organ donors. It is clear that Logan's selfless decision to become an organ donor has made a lasting impression in this country.

Let us spin ahead to next year, April 7, 2019, which is exactly one year after the passing of Logan Boulet in the RUH hospital in Saskatoon. The Canadian Transplant Society will proclaim “wear green shirt day” in Canada. Green, of course, is the colour of the Humboldt Broncos, the team he played for in the Saskatchewan Junior Hockey League. “Wear green shirt day” will be in recognition of Logan, along with many other organ donors in this country.

It is clear that the benefits organ donors provide to people in need is invaluable, and this bill would offer a simple solution that would help provide these benefits to as many Canadians as possible.

[Don Davies, NDP, Vancouver Kingsway, BC]

Mr. Speaker, I rise today to speak to Bill C-316, an act to amend the Canada Revenue Agency Act (organ donors). I would like to once again express my congratulations and thanks to the hon. member for Calgary Confederation for all his hard work on this issue.

This legislation would give authority to the federal government to coordinate with the provinces and territories to allow Canadians to register as organ donors through their federal tax filings.

Canada's New Democrats will be supporting this measure, because we believe that it will help to increase registration rates. Organ donation registration has been proven to be transaction based, and tax filings represent a transaction that millions of Canadians engage in every year.

Indeed, this legislation aligns closely with the NDP's long-standing advocacy and legislative work around organ donation.

For over a decade, New Democrats have been working to create a pan-Canadian organ donor registry to coordinate and promote organ donation throughout Canada. Legislation to create such a registry has been introduced by New Democrat MPs on five occasions: in 2002, 2003, 2008, 2009 and 2013.

Unfortunately, our federal government over the last 16 years has not been able to muster the will to implement this policy.

In February 2016, the Conservative member for Edmonton Manning, whose own son has been the recipient of three donated livers, reintroduced this private member's legislation, Bill C-223, with the unanimous support of the NDP. Unfortunately, the Liberal government voted to block that bipartisan effort. Canada's New Democrats were profoundly disappointed to see the Liberals rush to this determination without even sending the bill to committee for study.

One donor can save up to eight lives and benefit more than 75 people. However, at 18 donors per million people, Canada's current donation rate puts us in the lower third of developed countries. In fact, Canadians are currently dying on wait-lists because our organ donation rate is so low. In 2016, there were 4,500 Canadians on the recipient wait-list, and 260 died waiting for a transplant.

In order to address this unacceptable shortfall, the House of Commons Standing Cornmittee on Health agreed to study Canada's organ and tissue donation procurement system in March 2016, once again as a result of the initiative of my hon. colleague from Calgary Confederation.

As part of this study, the committee heard from a range of witnesses, including representatives from Canadian Blood Services, provincial organ donation and procurement organizations, researchers, health care providers and charities. The committee learned that although some jurisdictions in Canada are considered centres of excellence in organ donation and transplantation, others lack the resources and capacity to adopt best practices in this area.

As a result, the rate of donors varies significantly by region in Canada. In 2013, Quebec had the most deceased donors, with 20.2 per million population. Manitoba and Saskatchewan, on the other hand, had only 7.2 per million. British Columbia is Canada's living donor capital, with 28 living donors per million people.

The committee also heard that limited public awareness and public discourse about organ donation mean there are also challenges related to consent for organ donation in Canada. In addition, witnesses called for more research and better data collection across Canada to help identify potential organ donors within healthcare systems and improve treatment outcomes for transplant patients.

New Democrats hope that the committee's report, tabled earlier today, and its seven recommendations will place a renewed focus on the need for federal leadership to improve Canada's organ and tissue donation system.

In particular, we are pleased that the report contains a recommendation calling for study of a presumed consent or opt-out system for organ donation, an idea that New Democrats believe could make a huge difference in the number of organs available to save lives. Unlike Canada's current opt-in system, an opt-out approach would automatically register all citizens for organ donation unless they choose to indicate otherwise.

Countries with opt-out systems consistently record higher donation rates than opt-in countries. Indeed, this approach has helped to make Spain a world leader in organ donation over the past 25 years. In Austria, the donor rate quadrupled after instituting opt-out legislation, and similar regulations in Belgium doubled kidney donations.

I would be remiss not to mention that during the committee's study, it became clear that there is tremendous confusion over whether gay men are eligible to be organ donors in Canada.

One could be forgiven for confusion on this point, since sexually active gay men are currently banned from donating blood in Canada. However, under regulations first enacted in 2007, men who have sex with men are eligible to be organ donors on a case-by-case basis. Apparently in our country, one can take a gay man's heart but not his blood.

Helen Kennedy, executive director of the LGBTQ2 advocacy organization Egale Canada, has described this approach as outrageous.

Dr. Paul MacPherson, an HIV researcher with the Ottawa Hospital Research Institute's chronic disease program, has been clear that this ban does not match the science.

For men in stable long-term relationships, the risks associated with blood donation are exactly the same as those for a heterosexual couple. Given this, Canada should adopt a blood donor policy that is evidence-based, gender neutral and behaviour-based.

Although, by this standard, Canada's organ donation system also perpetuates harmful stereotypes based on risk categories that cannot be justified by the science. This policy leads to confusion for potential donors and an inconsistent application of the rules, which can have immensely tragic consequences.

When the Prime Minister spoke to Egale Canada this past May, he appeared to agree that the rules for blood and organ donation needed to be changed. In fact, he named “discrimination in blood and organ donation” as among the next frontiers of the LGBTQ2 movement.

However, it is difficult to comprehend the Prime Minister's call for advocacy when it is already within his power to end this discriminatory federal policy. In fact, in the last election, the Liberal Party pledged to end the ban on gay men donating blood, saying that this policy ignored scientific evidence and must end. Instead, the Liberal government simply reduced the celibacy period from five years to one year. This perpetuates discrimination against gay men. The New Democrats call for it to end now.

It is time for the Liberal government to finally live up to its word by ensuring Canada's blood and organ donation policies are truly non-discriminatory and based on science.

I wish to conclude my remarks today by strongly encouraging all Canadians to register as organ donors and to discuss their wishes with their loved ones. One donor can save up to eight lives through organ donation and enhance the lives of up to 75 more through the gift of tissue. There is always the potential to be a donor, so people should not let anything stop them from registering.

Each potential donor is evaluated on a case-by-case basis. Current or past medical history does not prevent anyone from registering. Individuals with serious illnesses can also sometimes be organ and tissue donors.

All major religions support organ and tissue donation or respect an individual's choice. Age alone is not a barrier to being a donor. Therefore, I ask people to please consider giving the gift of life.

I wish to reiterate the NDP's support for the vital initiative before us today and affirm our commitment to ensuring every Canadian who needs an organ or tissue transplant receives it. No one should ever die because the call did not come in time.

[Pam Damoff, Liberal, Oakville North—Burlington, ON]

Mr. Speaker, I just put on my “Be a Donor” ribbon and assume I am allowed to wear it in the House.

I am pleased to rise today to speak in favour of Bill C-316. I want to applaud the member for Calgary Confederation for all of his tireless efforts on improving organ donations across Canada, first in Alberta and now here in the House of Commons.

Organ donation rates across the country are, quite frankly, pathetic. Here in Ontario, more than 85% of residents are in favour of organ donation, but only one in three Ontario residents has registered his or her consent to donate. This trend is similar across the country. There is clearly a disconnect between people's wishes and their actions and, sadly, without an individual registering in advance, the family is often faced with this decision at a time of crisis, dealing with the loss of a loved one when so many emotions are in play. Too often we have not discussed our wishes with our loved ones.

We know that health care delivery is a provincial responsibility and I applaud the member for finding a way to engage the federal government in this important issue while still respecting our constitutional jurisdictions. This bill would make it easier to gather information: a simple check mark on one's income tax return and, voilà, the information is passed on to the province of residence. A province can choose not to participate in the program if it so wishes. This is so important because while our provincial counterparts have made tremendous strides to raise awareness and registration rates, we are still not seeing donor registration rates rising as they should.

In 2012, when I was an Oakville town councillor, I was part of a group of Oakville residents who formed the Oakville Be a Donor group. It grew out of a call from Oakville resident Jennifer Malabar, who challenged the mayor and council to register as organ donors. Jennifer developed a kidney disease while pregnant with her first child, Arya.

Facing an eight-year wait for a kidney transplant or the prospect of dialysis, Jenn was the recipient of a kidney from her husband Hitesh Patel, on their wedding anniversary no less. Hitesh later joined me for the Courage Polar Bear Dip wearing a Be a Donor T-shirt to raise awareness for organ donation. They later welcomed their second child, Sage, and the family continues to thrive.

Through the Oakville Be a Donor group, I met the most amazing people: Bev Cathro, who donated her kidney to her young daughter, and Ron Newman, affectionately known as the “Dialysis Dude”, who received a kidney transplant and lived dialysis free for many years, but is now back on dialysis as he waits for another donor. Ron continues to advocate and also organizes the Halton Kidney Walk every year.

Julie Pehar, whose experience was a different one, came to our group having lost a loved one and having made the decision to donate his organs.

Sarah Taylor and Keith Childerhose is a love story that played out as Keith struggled to breathe. In need of a lung transplant, Sarah took to social media to publicize Keith's challenges. They appeared in the news as Keith waited for a double lung transplant.

Keith was failing quickly and was on life support. He had been living with diffuse panbronchiolitis from the age of 25 and had been fighting the disease for 15 years. This severe and rare disease caused fluid to continually build up in his lungs, similar to cystic fibrosis. On life support, the news came that Keith was heading into a 10-hour surgery as a donor had been found. In one of the most touching photos ever taken, with Keith hooked up to an IV and tubes, looking into each other's eyes, Keith touched Sarah's nose as she touched his hand.

The good news is that the surgery was a success and brought much-needed attention to the need for organ donation. In a lovely twist to the story, the two were engaged, then won a wedding package and were married in 2013. As wonderful as Keith's and Sarah's story is, sadly, across our country there are too many stories like Keith's that do not have a happy ending.

Our Oakville Be a Donor group gathered together the Interfaith Council of Halton, community leaders and politicians to create a poster to be displayed around town. How pleased I was recently to visit the Halton police station and see our poster still hanging on the walls of the offices.

Despite our efforts to raise awareness, registration rates across Canada are dismal. I want to share some statistics from the Ontario Be a Donor website. In Ontario, there are over 1,500 people waiting for a life-saving organ transplant. This is their only treatment option and every three days someone will die because they did not get their transplant in time.

One donor can save up to eight lives through organ donation and enhance the lives of up to 75 people through the gift of tissue. Age alone does not disqualify someone from becoming a donor. The oldest organ donor was over 90, and the oldest tissue donor was over 100. There is always the potential to be a donor, and it should not stop someone from registering. Anyone over the age of 16 can register.

Current or past medical history does not prevent someone from registering to be a donor. Individuals with serious illnesses can sometimes be organ or tissue donors. Each potential donor is evaluated on a case-by-case basis.

All major religions support organ and tissue donation or respect an individual's choice.

Organ and tissue donation does not impact funeral plans. An open-casket funeral is possible.

Right now, there are over 1,100 people in Ontario waiting for a kidney and 252 people waiting for a liver, and 46 of those on the wait-list are under the age 17.

When we register, we give hope to the thousands of Canadians waiting for a transplant. Those on the transplant wait list are often living with organ failure, like my friend Ron Newman. Tissue donors can enhance the lives of recovering burn victims, help restore sight and allow people to walk again. Transplants not only save lives, they return recipients to productive lives.

As I speak today in support of Bill C-316, I want to remember my friend Bob Hepburn. Bob was a generous and kind soul, a teacher-librarian who was a role model for hundreds of students at Abbey Park High School in Oakville and best friend to Tim Robertson. Bob was generous beyond words, so much so that he was twice a living donor, once donating his bone marrow and another time his kidney. Bob died quite suddenly a few months ago, and those to whom he had given the gift of life came to his funeral.

I thank my colleague across the floor, the member for Calgary Confederation. I know that this is an issue he has been committed to for years. I am proud to call him a friend and even prouder to have been asked to be a seconder of this bill. It is my sincere hope that Canadians will soon have another simple option to register as donors on their income tax returns, thanks to his private member's bill.

Those who are watching today should talk to their loved ones about their wishes and go online and register today. In Ontario, they can go to www.beadonor.ca right now. It only takes two minutes to register.

I ask all members of this House for their support for Bill C-316. This bill would create a simple way for Canadians to register as organ donors. It is my sincere hope that when Canadians file their income taxes in the near future, they can just click on a box to have the federal government notify their province of residence of their wish to register.

[Len Webber, Conservative, Calgary Confederation, AB]

I will continue from where I left off, Mr. Speaker.

The Humboldt Broncos tragedy last spring highlighted the issue across Canada when Logan Boulet signed up as an organ donor just weeks before his tragic death. This incredibly kind gesture prompted thousands more to register, but it is still not enough. While over 90% of Canadians say that they support organ donation, only 25% are registered. In the meantime, hundreds die every year waiting for a donor. Sadly, Canada has one of the lowest donation rates in the world. A single organ donor can save up to eight people and a single tissue donor can help up to 75 individuals.

My bill, Bill C-316, proposes a very simple, very effective method to increase the size of the organ donor base here in Canada. It would also help update existing databases, but most important it would save lives. I am proposing that we use the annual tax form to ask Canadians if they would like to become a registered organ donor and if they consent to have this information passed to their provincial government for addition to its existing organ donor registries.

Before I go further, I must thank the 20 members of Parliament from all parties in the House who have stepped forward to officially second my bill. I will just let that sink in. There are members from all political parties in this House who have signed on as official seconders to this bill. That is a rare occurrence indeed. This extraordinary non-partisan approach demonstrates how a sensible idea can bring us together as a House to improve the lives of all Canadians. This collaborative approach has extended to the health committee, the committee that I serve on along with nine other colleagues of mine who have been extremely supportive of improving the organ and tissue donation situation here in Canada, and I deeply appreciate the support on this issue and with this bill.

This is not a political issue; it is a human issue. Any one of us could be in need of donor organs or tissues at any time. Just asking this simple question could increase the number of donors. Just recently, donor registration jumped up 15% in British Columbia when drivers were asked directly at licensing locations across the province if they wanted to be donors. It jumped up 15%, so we can imagine what we can do on a national scale.

Tax forms, by law, are restricted to collecting data for the purposes of taxation only. This is why we need to amend the law to allow for this common-sense approach to a national problem. My bill is modelled on the successful inclusion on the tax form of the question asking Canadians if they want Elections Canada to be kept informed of their current information. My bill has been crafted in keeping with this successful precedent.

Other initiatives to improve organ donation have been voted down in the past here in this House of Commons, as some felt the proposals were an infringement on provincial jurisdiction. My bill would not infringe on the provincial responsibility of managing donor lists; it would just support their existing work. My proposal is so simple and could be implemented so quickly. The federal government, via the Canada Revenue Agency, already successfully shares data every day with all the provinces and territories via encrypted networks with strong and reliable privacy safeguards. In addition, the existing infrastructure would support this change at virtually no cost. The CRA already shares dozens of data fields of information on every taxpayer with the provinces and territories and this would simply be one more data exchange. The tax form is a way to update this information annually via a legally binding document. It would allow for provincial lists to remain current and relevant.

While some methods used by the provinces such as driver's licences and health care cards help register donors, as they do, none has as far a reach as the tax form.

The existing voluntary online method of registering is neither proactive nor fully effective. For example, those who move from one province to another rarely update their information. The tax form approach overcomes these common problems.

As the federal government would simply be collecting the data and passing it to the provinces, we would not be opening the jurisdictional can of worms. The federal government would not be encroaching on provincial jurisdiction because we are not setting up a federal registry. We would provide the information to the province and it would use the information as it sees fit. The provinces would still maintain their own lists. We would just be supplying them with data for that purpose.

When someone dies, the tax department is often one of the first government agencies to be notified. This too would help update provincial registries and keep them current. This is a huge opportunity for the House to show leadership in organ and tissue donation efforts.

Stakeholders have been universally supportive of the bill, and the thousands of affected families with loved ones on waiting lists will welcome this additional help. One stakeholder, the Ontario Trillium Gift of Life Network, is the largest registry in Canada. Its CEO, Ronnie Gavsie, says:

...we would support creating an opportunity for Canadians, when filing their income tax returns, to register their consent for organ and tissue donation.... The online income tax return becomes a gateway and an annual reminder to drive Canadians to organ and tissue donor registration.

We share with you the goal of substantially improving awareness of organ and tissue donation and improving health for Canadians by increasing the number of life-saving transplants.

The federal agency responsible for organ donation is Canadian Blood Services and its vice-president, Dr. Isra Levy, said:

Just like our colleagues, we support a transactional touchpoint that will raise the awareness, especially if it leads to the conversation.... But for sure this is something to be welcomed.

Elizabeth Myles of the Kidney Foundation of Canada has written to the Prime Minister expressing the foundation's support for this change. Dr. Amit Garg of the Canadian Society of Nephrology, a society of physicians and scientists specializing in the care of kidney disease, and Dr. West of the Canadian National Transplant Research Program also expressed their strong support for the bill. The list goes on. Support for this legislation reaches far and wide across the country, into every community.

The health committee just tabled a report on organ donation this very morning in the House, with a number of key recommendations. The committee wanted to know what role the federal government could play in strengthening Canada's organ donor donation and transplantation system. One of the key recommendations in the report deals directly with the debate we are having right now. If this bill is passed, it would go a long way toward fulfilling that key recommendation. We have the opportunity to leverage the resources of the federal government to help our provincial and territorial partners improve their registries, and I hope we do.

I and, most importantly, 4,600 Canadians awaiting life-saving transplant hope we can count on all MPs to support the bill.

I want to deeply thank a particular individual, a friend, Mr. Robert Sallows of Calgary. Robert received a double lung transplant 13 and a half years ago, at the age of 17, which granted him a new lease on life. Since having the transplant he has been very active within Alberta and Canada, raising organ and tissue donation awareness. He helped me immensely with the passage of my bill in the Alberta legislature, which created the Alberta organ donor registry. Sadly, Robert has recently entered the palliative care process. I want him to know that his determination, his struggle and his advocacy for organ and tissue donation have provided me with so much inspiration and motivation to improve the lives of others in need of a transplant.

I dedicate this effort to my friend, Robert Sallows.

[Len Webber, Conservative, Calgary Confederation, AB]

moved that Bill C-316, An Act to amend the Canada Revenue Agency Act (organ donors), be read the second time and referred to a committee.

Mr. Speaker, for those who may not already know, I have been a long-time advocate of organ and tissue donation in Canada. In fact, a few years ago I passed a bill in the Alberta legislature as an MLA, resulting in the creation of the Alberta Organ and Tissue Donation Registry. It also put in place a strong and robust education and awareness program that included adding donor hearts to our Alberta driver's licences.

However, the reality is 4,600 Canadians are still awaiting a life-saving transplant and we need to do more to find those critical matches to save more lives. This is an issue that transcends political lines and offers us, as parliamentarians, the opportunity to make a difference in every corner of this country.

The Humboldt Broncos tragedy last spring highlighted the issue across Canada when Logan Boulet signed up as an organ donor just weeks before his tragic death. This incredibly kind gesture prompted thousands more to register, but it is still not enough because while over 90% of Canadians say they support organ donation, only 25%—

Organ Donation

[Len Webber, Conservative, Calgary Confederation, AB]

Mr. Speaker, I am pleased to present a petition in support of my private member's bill, Bill C-316, which comes up for second reading next week. The petition is submitted by members of the National Capital Region Gift of Life Network.

The petitioners from around Ottawa-Gatineau call on the House to improve the organ donation system in Canada by making the process to register as an organ donor easier. This would be achieved by adding a simple question to our annual tax returns.

Every organ donor has a potential to save eight lives, but we need to make registering to be a donor easier. Hundreds of Canadians die every year waiting for a lifesaving transplant. We can do better.

[John Oliver, Liberal, Oakville, ON]

Mr. Speaker, I am pleased to present a petition today signed by Canadians requesting that Parliament support Bill C-316, an act to amend the Canada Revenue Agency Act regarding organ donors.

Today there are 4,500 Canadians awaiting a life-saving organ or tissue transplant. The majority of Canadians support organ and tissue donation. However, only 25% are registered as donors. Bill C-316 would make it easier for Canadians to indicate their desire to donate their organs and tissues through their annual tax returns. This information would then be shared with the provincial and territorial governments so that the names of those Canadians who want to help save lives could be added to existing donor registries.

[Len Webber, Conservative, Calgary Confederation, AB]

Thank you, Mr. Chair.

I again want to thank the committee for allowing this study to happen here today.

I also would like to thank our witnesses here today, our presenters, for coming all this way, in particular, Dr. Lori West for mentioning in her presentation Bill C-316, which, if passed, would allow Canadians to indicate their desire to be organ donors through their annual tax filing.

Also, thank you, Laurie Blackstock, for your story and your volunteerism and your advocacy, and thanks to your husband as well for his great gift of life.

Mr. Oliver did a very good job of summarizing what we have been hearing the last couple of days with regard to what we can do as the federal government to help support the organ and tissue donation system here in Canada. The additional comments you made here today are very helpful.

I do have some specific questions really quickly here.

One is to you, Dr. Lori West, regarding your presentation and the document you provided. First, thank you for your great work in research as well. You mentioned here that you have a solid track record of success, which you do. One thing in particular, I noticed here, is that you uncovered the legal, social, institutional, and professional challenges that contribute to the family veto of previously registered intent to donate. I would like you to elaborate on that. Are we seeing many situations in which families are vetoing the wishes of the potential donor?

[Dr. Lori West, Director, Canadian National Transplant Research Program]

Good afternoon, everyone.

Thank you for inviting me today.

Thank you, Mr. Chair and committee members, for dedicating your time to addressing the many challenges of organ donation and transplantation in Canada.

Like Dr. Kneteman, I am part of medical teams. I am a pediatric heart transplant physician and a scientist in transplant immunology, so I can bring that expertise to our conversation today.

We really applaud your efforts in convening this study on what we can do across the country, as a country, for the tens of thousands of Canadians whose lives can be saved or improved with a cell or organ transplant.

We also thank you for inviting the Canadian National Transplant Research Program to be part of this discussion. We appreciate the importance of the opportunity to inform you about our program and our successes and to provide suggestions for what the federal government might do to increase donations, increase access to transplantation, and improve transplant outcomes.

I think all of us here today understand the life-saving and economic benefits of transplantation. We all recognize the importance of Canadians registering their intent to one day become an organ donor, should the occasion arise. Last month's tragedy in Humboldt certainly was evidence of that, inspiring more than 100,000 Canadians across the country to register online to become organ donors.

However, even with increasing numbers of Canadians being aware of the importance of organ donation, last year in Canada we had fewer than 800 deceased donors and only about 500 living donors. There are 4,500 Canadians officially on the wait-list, and I think it's really important to recognize—and this isn't necessarily generally recognized—that thousands more Canadians could be added to the wait-list. The wait-list numbers really don't reflect the true impact of this problem. This is not a niche area. Tens of thousands of Canadians could benefit from transplantation if there were any hope of finding a donor, so many Canadians who are in need never make it onto wait-lists. I think we need to bear in mind that this is a much bigger problem than what is reflected in those numbers alone.

Our system is falling short of its potential to transform lives in Canada despite the gains that have been made in recent years to return patients suffering from many types of chronic diseases, malignancies, and organ failure back to good health. Furthermore, once a person receives a transplant, we need to optimize the long-term transplant outcomes so that retransplantation isn't needed, which of course further accentuates the difficulties of finding sufficient organ donors so that transplantation can become truly a cure for these diseases.

I think it's important to recognize—and certainly we believe also—that this is solvable. This challenge is not impossible. Canada has the technologies, the people, the resources, the researchers, and the assets to solve this problem. It's not like a problem about which we would say “if only we knew this” or “we didn't know that”. This is a solvable problem. We can take much information from places in which there have been successes around the world, and I know we do, and that has been part of the discussion.

Increasing donation and increasing access to transplantation require a strong national partnership at many levels. It starts with having strong and well-funded provincial organ donation agencies, as you heard about on Monday from a number of individuals from different provinces. It requires clear linkages with health charities and with patient groups, creative partnerships with Canadian biotechnology and the pharma industry, and a well-funded national health delivery policy and coordinating agency through Canadian Blood Services, as will be noted by Dr. Kneteman and as was discussed by Isra Levy on Monday. Also critical is a strong and independent national research network that can provide the evidence, the evaluation of evidence and strategy, new knowledge, and new discoveries that will have rapid impact.

To this point, in 2013 the Canadian government, through the Canadian Institutes of Health Research, funded the Canadian National Transplant Research Program, the CNTRP, the goals of which were to put together a framework of research to unite donation and transplantation researchers across the country and across the many disciplines that make up this very complex landscape. Only in that way can we really have high and realistic hopes of moving forward.

This initiative was a result of strong partnerships among several CIHR institutes, including Infection and Immunity; Cancer Research; Nutrition, Metabolism and Diabetes; and Gender and Health; as well as our ethics office and many of our partners who you are hearing from or will have heard from, such as the Kidney Foundation of Canada, the Canadian Liver Foundation, Canadian Blood Services, les Fonds de recherche du Québec - Santé, Genome BC, Cystic Fibrosis Canada, Astellas Pharma, and several others.

What we've created in Canada now is a national research structure that is unique in the world. It unites bone marrow transplant researchers, donation researchers, and solid organ transplant researchers. There is actually no other program like it globally, and it has really become the envy of our international collaborators and partners.

I'll give you a few examples of our major accomplishments over the last five years, because I think they may help inform some of the ideas and proposals that you're thinking about in your discussions in this committee.

The CNTRP has linked researchers at 31 academic institutions and universities across Canada with central leadership provided by the University of Alberta and the Université de Montréal. We've brought together more than 150 investigators, more than 200 trainees, and more than 200 collaborators focused solely on these issues. We're supporting more than 75 tightly interlinked national-based studies that link donation, solid organ transplantation, and bone marrow transplantation together, importantly bringing the science and the clinical research together with health economics, health law experts, ethics researchers, and policy experts. On the hard sciences side, we are linking these with relevant areas in chemistry and engineering. On the humanities side, we are linking them with social scientists, policy scientists, and with machine-learning and artificial intelligence experts. All of these have an important role to play in moving this kind of work forward to have real impact on what we are considering.

We've brought patients and families into our structure as key research partners. Having the public as part of these research efforts ensures not only that we are addressing their priorities but also that we, within a research framework, are accountable to the financers of research. This helps us to evaluate the impacts and propose new projects that are directly influenced by the patient priorities.

We've launched and are supporting the world's largest clinical study in deceased donation with our ODO partners. The study is ongoing and it is transforming donation research in Canada and around the world, with many important international partners.

We've launched national trials using these new—you may have heard about them—“organ in a box” ex vivo perfusion devices. These take organs, and instead of putting them in a bucket of ice and moving them from place to place, keep them alive, functioning, and in much better condition for transplantation. This means that, with the geographical realities of Canada, we can deal with these things and move things around. These are all very creative approaches that are needed in order to really impact these questions.

We're also proposing international strategies to address transplant tourism and organ trafficking, and looking at factors that impair both access to transplantation and outcomes across the full age span, as well as integrating sex- and gender-focused research and, importantly, equity across various diverse groups.

We're addressing issues that impact access and outcomes for Canada's rural, remote, and indigenous populations and other vulnerable groups that are often overlooked.

After five years, the CNTRP has demonstrated the power of creative collaboration, and this has been emulated by several new health research networks both in Canada, such as for antimicrobial resistance and Lyme disease, and importantly, around the world including the British Transplantation Society, the Transplantation Society of Australia and New Zealand, the organization in Germany, and so on, which are asking how they too can build national networks that can have this kind of power on outcomes.

The CIHR and its partners have recently provided support for a three-year extension of our basic infrastructure, but the challenge is to find sustained funding to support this important research and to grow this network.

To this end, we're proposing ideas that were impossible five years ago. We're proposing a larger vision to fulfill every transplant donation, every donation opportunity in Canada, to not miss any, to basically get rid of the waiting list, and to turn transplantation into a cure. We call this our "one transplant for life” challenge, which we've included in the materials for you.

We believe that the CNTRP can help integrate, execute, and evaluate strategies and ideas being discussed by your committee, and we're eager to work with you.

We'd provide abundant multidisciplinary expertise, and we can bring relevant partners to the table to continue to work with you on these issues. We know we could help with some of the examples that were proposed by Ronnie Gavsie on Monday and that will be proposed today, such as a public education campaign, working with CBS to evaluate a national death audit program, and so on.

Of major importance, as I conclude, is support for Bill C-316, which is a real example of the creative nature that's needed to look at why we cannot afford to be stymied by the makeup of our country. We can turn it to our benefit and really use those sorts of strategies to get where we want to go.

In conclusion, we think this is a perfect opportunity to move forward. We're very excited about this committee's attention to these issues, and we thank you again for allowing us to present today.

[Marilyn Gladu, Conservative, Sarnia—Lambton, ON]

Thank you, Chair.

Thank you to the witnesses.

I want to follow up on my colleague's question because we ran out of time. His Bill C-316 will give everyone the opportunity to opt in on their income tax form as an organ donor. I'd like to hear from my friends in B.C. Do you think this is a good idea, and is there anything you would add as an improvement?

[Len Webber, Conservative, Calgary Confederation, AB]

Ms. Gavsie, you mentioned the need for increased opportunities on the federal level with respect to channels to registration. I would be remiss if I did not mention my private member's bill that is coming forward here very soon, Bill C-316, which if it is passed, would allow Canadians to indicate their desire on their income tax forms of whether they would be organ donors. I have many official seconders from all parties, including numerous individuals in this room.

Thank you for that.

There are 25 million Canadians who file taxes annually. Can you comment on this proposal, all our witnesses, and what impact you think this would have? Do you see it as a positive thing? Do you see any concerns with this bill?

Organ Donations

[Len Webber, Conservative, Calgary Confederation, AB]

Mr. Speaker, I am pleased to present a petition, in support of my private member's bill, Bill C-316, which was submitted by members of the national capital region Gift of Life Network.

Coincidentally, it is also tax season across Canada. The petitioners are calling on this House to improve Canada's organ donation system. This would be achieved by making the process to register as an organ donor easier by adding a simple question to our annual tax returns. With 4,700 Canadians awaiting life-saving transplants, imagine how many lives we could have saved if this were already in place for this tax season.

Organ Donation

[Len Webber, Conservative, Calgary Confederation, AB]

Mr. Speaker, I am pleased to present a petition in support of my private member's bill, which I expect will come up for debate in April, Bill C-316. The petition was submitted by members of the National Capital Region Gift of Life Network. Petitioners from around Ottawa and Gatineau are calling on the House to improve the organ donation system in Canada. This would be achieved by making the process to register as an organ donor easier by adding a simple question to our annual tax returns. Becoming an organ donor is the easiest way to save the life of a fellow human being. These are signatures of caring Canadians who want to see our organ donor system work better so that we can save more lives every day.

[Kevin Waugh, Conservative, Saskatoon—Grasswood, SK]

Mr. Speaker, I am pleased to present a petition in support of a private member's bill, Bill C-316. This sensible proposal has been brought forward by my colleague from Calgary Confederation.

The petitioners call on the House to improve the organ donation system in Canada by making the process to register as an organ donor much easier. This would be achieved by adding the simple question to our annual tax returns.

Currently, 90% of Canadians support organ donation, but only 25% are registered. Forty-six hundred Canadians are currently awaiting a life-saving transplant. We know that making the registration process easier would save more lives in our country.

[Matt Jeneroux, Conservative, Edmonton Riverbend, AB]

Mr. Speaker, I am pleased to present a petition in support of private member's Bill C-316. This sensible proposal has been brought forward by my colleague and friend the member for Calgary Confederation.

The petitioners are calling on the House to improve the organ donation system in Canada by making the process to register as an organ donor easier. This would be achieved by adding a simple question to our annual tax returns. Currently, 90% of Canadians support organ donation, but only 25% are registered. Some 46,000 Canadians are awaiting a live-saving transplant. We know that making the registration process easier will save more lives.