House of Commons Hansard #60 of the 41st Parliament, 1st Session. (The original version is on Parliament's site.) The word of the day was organ.

Topics

Organ Donations
Government Orders

7:50 p.m.

NDP

Pierre Nantel Longueuil—Pierre-Boucher, QC

Madam Chair, as we are in committee of the whole, I think it appropriate that I share a remarkable experience that got off to a very rough start in 2000.

A person died somewhere, but his or her heart continued its mission. One of my constituents, a friend who lived close to me at the time and was the father of four children, developed severe heart disease at age 32. That was Sylvain Bédard, who received a heart transplant 11 years ago.

Since that time, he has had a fifth child, and even has a number of athletic achievements to his name. He climbed Mont Blanc, near Chamonix. He climbed to 6,000 metres somewhere in Bolivia. It is a testament to his energy and an example of just how worthwhile the transplant process is. After 11 years, Sylvain Bédard is still in good health and remains an example to us all. He is a dynamo and his dynamism is highly infectious. He makes us feel like going to get some exercise.

Organ Donations
Government Orders

December 5th, 2011 / 7:50 p.m.

NDP

Libby Davies Vancouver East, BC

Madam Chair, I thank my colleague for sharing that very beautiful story. It makes us feel better when we hear those stories. For the people who made the donation of an organ, what caused them to do that? Was it because they had some individual knowledge through another family member, or was it because of a broader policy at work that connected with them?

That is what we want to get at tonight. We want to hear of many more situations where people became donors by signing up and they could literally give the gift of life to someone else. We want to hear more of these experiences and stories. We will only do that by encouraging a much better process and system in place.

I think the purpose of tonight's debate is to help illuminate that, to draw attention to what is going on and of the plight and the living situation of people who are waiting on donor lists to receive an organ. It is good to hear that story tonight.

Organ Donations
Government Orders

7:50 p.m.

Liberal

Hedy Fry Vancouver Centre, BC

Madam Chair, I am pleased to speak to this take note debate because it is an extremely important issue. I think about 4,700 people are currently on a waiting list for an organ donation. We know that some people die while waiting for an organ donation. This is again another preventable cause of death.

I know many people say that organ donations are in an experimental phase, that it does not really work, that if a person donates an organ it will not find it successful. Eighty to ninety per cent of organ transplantations are successful. This is an opportunity to actually save a life. it is important that we see it as that kind of preventive procedure where we can save a life, and that is really important.

I congratulate the Leader of the Government in the House of Commons for bringing this forward today as a debate. I think we know why and there is nothing wrong with this. The 35-year-old chief of staff to the Minister of Foreign Affairs suffers from renal insufficiency. People get renal insufficiency from chronic strep throat. There are lots of ways people can get renal problems. They are very common and often chronic infections can cause this to happen. He has been waiting for seven years for a kidney. It is interesting to note that over the time that he has been waiting, he has been receiving dialysis. The cost of dialysis is extremely high. The pain of dialysis and the problem of having to be attached to a machine for hours on end is an extremely difficult thing for a person to be doing for seven years.

Therefore, it is important to realize that this is not only something that can save a live, that can prevent a death, but it is also something that will help us to take our health care dollars and move them into areas where we can actually put more money in, instead of looking at cost effectiveness in the health care system. Getting someone an organ donation is a quick and easy thing to do.

I know that the gentleman in question, Mr. Keller, has launched a Facebook group called “Help Garry Find a Match”. I think he said, somewhat tongue in cheek, that he did not mind if that match were a Liberal, an NDP or a Green. While he is humourous and is trying to put a brave face on this, the reality is that there are 1,095 people in Ontario alone waiting for a kidney, that 195 Canadians died while waiting for a transplant, and that Canadians' organ donation for deceased donors is 15 per million. We can compare that with Spain with 35 per million, Estonia with 26 per million, Belgium with 22 per million, the United States with 21 per million and Italy with 20 per million. We are only 15 per million. Is it that Canadians do not want to donate their organs? When asked, 90% of Canadians said no, that they want to help,that they want to donate their organs. The question then is: Why not?

I suppose there are two things. One, there are a lot of myths associated around transplantation, and two, it is a very complex thing to do. If we are going to do something about this, we need to not only talk about it here today, not only feel really sad and sorry and say fine words, but we need to put in place the procedures, the processes and the infrastructure to ensure we can make organ donation a reality.

One of the things people do not know is that there are organs that can be donated by a living donor. In other words, people can donate one of their kidneys today. They can donate part of their liver today. They can donate part of a lung or part of their small bowel that will allow them to continue to live, work and have a great quality of life even though they have donated part of that organ or an organ. However, there are organs that can be donated after death, such as the heart, liver, kidneys, pancreas, lungs and the small bowel.

Some of the reasons that people have put forward is that we live longer in Canada, we have fewer motor vehicle accidents in Canada or we have fewer homicides in Canada. I do not necessarily think those are reasons when we look at Belgium and Spain. They have pretty safe and long living citizens. I think it is the system that is at fault here. The system is extremely complex.

Another reason that people do not want to donate their organs is not only because it is complex, but there are lots of myths around this. A lot of people think their religion prohibits them from donating an organ. Most religions actually support organ donation. A lot of people think that if they donate an organ, it increases the costs to the family toward the whole cost of the donation. It does not at all. Donations are covered under the Canada medicare plan. It is covered completely.

Other people think that because they have signed a donor card or because their driver's licence says they can donate, it automatically happens. It does not. In some countries it automatically happens, but in Canada we also have to get the family to accept. They have to agree to the organ donation.

There are lots of steps we can take in looking at the issue of organ donation. Some people think that if they have a disease or are chronically ill or they are over 70 or whatever, they cannot donate. That is not true. There are many parts of the body that are still very healthy. If someone's eyesight is bad, they can donate their sclera. There are lots of things people can do. Doctors will assess chronicity of disease and the health of the organ before they do the donations, so people should not worry about those things and just go ahead and do it.

One of the things that is really disconcerting is that in 2001, as my colleague said, there was a national transplantation organization set up, which has now been rolled into the blood donation group. Eighteen million dollars was given over five years to deal with this issue. The problem is that nothing has happened.

We do not need to reinvent this wheel. This is what we could do, and it is very clear. Doctors, the Canadian Medical Association and lots of people have talked about what we should do. One of the things we need is a national registry. We need to know across the country who needs an organ and their level of emergency. Second, in emergency rooms and ICUs we need to know who has passed away and who has a valid donor. We need to match each other up across the country. We need to standardize donation and the management of the whole organ donation process.

We need to look at a national oversight agency. Here is a piece of infrastructure that would keep this kind of standardization process going, keep a national registry and match the needs across the country. They do it in other countries. The United States has had a national registry and an allocation mechanism since 1984. It is called the United Network for Organ Sharing. It has a national wait list and mandatory organ sharing for prioritized patients. Across the country there is a helicopter or a plane waiting to fly an organ right away to somebody who really needs it. They do it in a fair and equitable manner. They look at the critical need, how far away it is and the likelihood of the patient being a good match. Those are some of the things we need to do if we are going to set up a system.

We need to look at sharing of best practices. Ontario, for instance, has the Ontario Trillium Gift of Life, which is exploring new ways of looking at automatically donating one's organ without the family's permission if one has an organ donation card or if it is on one's driver's licence.

These are important steps we can take to move the system forward and put the infrastructure in place. This is not rocket science. There are things we can do, and at the same time we need to remember that the sooner we do it, the better.

Let us not have this take note debate tonight in vain. Let us not just do the things we always do, which is talk, talk, talk. Let us hope that the government of this country will put in place right away the systems that are needed. It has the money. It has $18 million, but nothing has happened in the last five years.

Let us get things moving. Let us move forward. All the structures need to be in place and all the doctors know what needs to be done. Let us get a third party group with knowledge and information to get this going.

Organ Donations
Government Orders

8 p.m.

Conservative

Joy Smith Kildonan—St. Paul, MB

Madam Chair, I know we have to sometimes be reminded that the delivery of health care is in the domain of the provinces and territories. At the federal level, basically what the federal jurisdiction does is take care of the safety of the organs themselves.

Even though there has been a decrease in deceased donor donations, there is a rise in living donor donations. We can look to that in a very positive way to see the things that are being done across the country right now.

This debate tonight, as members opposite have stated in the House, is a very important debate because it raises awareness, especially when one of our own, Garry Keller, is in need of a kidney. When those close to us and our loved ones are affected, we want to raise the awareness. Again, each one of us can do a part.

I would like to ask the member opposite, as I did the other member, to tell us some things that she could do to create some concrete awareness of the need for kidney donations, and in particular right now, in terms of Garry Keller's kidney donation. I think this awareness exercise is very important, so what are some of the things that she could do personally to raise this awareness and to search for a donor?

Organ Donations
Government Orders

8 p.m.

Liberal

Hedy Fry Vancouver Centre, BC

Madam Chair, personally I could do very little unless I wanted to give Mr. Keller one of my kidneys. It is not about what I can personally do; it is about what the government can do.

It is one thing to say that the provinces deliver services, but everywhere that deals with organ donation, we have to be able to talk about a national registry. It was the federal government that put together the $35 million over five years to look at pulling together some kind of national infrastructure to do this. It just has not worked because since then all the necessary work has not happened.

We need to talk about how we work with provinces. Obviously the doctors in the provincial systems will actually do the donation, the operation, and get the transplant done, but we need to have a registry so that if a doctor in Ontario knows someone needs a donation of a kidney and knows that Alberta has someone in an ICU who just passed on, we could get that kidney here quickly. This is the kind of thing we need to talk about. We cannot keep looking at small, narrow jurisdictions. This is the kind of thing that lends itself to federal leadership. The federal government cannot walk away from this. It started in 2001 to do something; it is time to move and to put the structures in place.

The CMA has given us great ideas on how to do it. I read them out and I do not want to read them out again, but there has to be an oversight of a third party that is able to do this. There has to be a national registry. There has to be standardization across the country for organ donation. It has to be done in a fair and equitable manner, but we need to know where there is an organ, where there is a donor and where there is a donee. We need to know it immediately. This is something that must happen as soon as an organ is available.

Organ Donations
Government Orders

8:05 p.m.

NDP

Libby Davies Vancouver East, BC

Madam Chair, because the member for Vancouver Centre is from British Columbia, as I am, I wanted to say something about the program in B.C. Its new program was started in 1997, and was the first of its kind in Canada in that it created a new remote access computerized registry to record an individual's decision on organ donation.

Although we had a process before, it was really very flawed. First of all, it was only available to B.C. drivers, so it obviously missed a huge segment of the population. Most importantly, the information regarding organ donation was not accessible to health care professionals in an immediate and consistent fashion, and obviously we know that time is of the essence.

We have had a new system since 1997. It allows individuals to make an educated choice of, for example, which organs they want to donate. It gives a choice, which is then legally recorded.

It seems to me that B.C. has had a pretty good system. I appreciate the member's comments that having this consistently across the country is what is lacking. I do not want to single out any province and say it is not doing very well, because each province has tried to do it, but surely in this situation we can have a national registry, as the member has pointed out, and have consistency, so that we can get maximum results.

For me the biggest issue is to also raise awareness about organ donation generally with the public. Why--

Organ Donations
Government Orders

8:05 p.m.

NDP

The Chair Denise Savoie

I must give the hon. member for Vancouver Centre time to respond.

Organ Donations
Government Orders

8:05 p.m.

Liberal

Hedy Fry Vancouver Centre, BC

Madam Chair, actually there is a website called the donation group. It talks about organ and tissue donation and about some of the myths that I mentioned, such as religion, chronic diseases, age, et cetera. It answers those questions and it points where to go if we are looking for donations. However, this is not good enough, because individuals and their families cannot make it happen. Even physicians cannot make it happen unless there is a matching list.

The member talked about British Columbia; it has a good program, and there is also a good one in Ontario, but she is absolutely right. One of the things we have to remember as a federation is that we cannot always say that this is so-and-so's jurisdiction. There is a role for federal government leadership in terms of setting up and creating best practices, creating a clearing house for best practices and creating a national registry to help someone needing an organ in B.C. to know that there is one in Alberta. Would it not be sad to know that someone could have had an organ and lived if they had known there was one in Alberta that he or she could get?

It is really important for the federal government not to shirk its responsibility in this area.

Organ Donations
Government Orders

8:05 p.m.

Liberal

Frank Valeriote Guelph, ON

Madam Chair, I want to thank the member for Vancouver Centre for her thoughtful and informed remarks. They bring to mind an event I attended in the summer, the Heart and Stroke Foundation's Mother Daughter Walk. I met a very lovely woman there, Janet Parr, who had the opportunity to give some of the opening remarks. She spoke to me later of the incredible need for organ donation. She herself has embarked on an incredibly onerous campaign to raise awareness in our community and elsewhere.

I thank my friend for her remarks about the need for awareness.

I read an interesting statistic that said 90% of Canadians have indicated that they would want to be an organ donor, but the system is too complicated. Could the member tell the House about those complications and what might make them uncomplicated?

Organ Donations
Government Orders

8:10 p.m.

Liberal

Hedy Fry Vancouver Centre, BC

Madam Chair, what is needed to make it uncomplicated is a registry of some kind. Then we would know how many people need organs and what types of organs are needed. It should be a registry that is linked to all the ICUs in the emergency rooms across the country so that we can find a donor. That is the simple thing to do.

When we talk about provincial jurisdictions, we should remember that it was a conference of federal, provincial and territorial deputy ministers of health in 2001 that set up the existing Canadian Council for Donation and Transplantation as a national organ donation oversight agency. They put $35 million over five years into it. The structure is already there; now we have to give it teeth, because it is obviously not working very well. I think it is very important that we have a conference of the deputy ministers of health right away to talk about putting some teeth into what is an already funded and existing structure.

Given that B.C. and Ontario have driver's licence and organ donation cards, we can look at how to mandate the fact that if I sign my organ donation card as well as my licence and have an accident, then automatically that organ is put into the system. We would not have to go families to get them to okay this, as it would have already been okayed.

Organ Donations
Government Orders

8:10 p.m.

Labrador
Newfoundland & Labrador

Conservative

Peter Penashue Minister of Intergovernmental Affairs and President of the Queen's Privy Council for Canada

Madam Chair, I thank the House for the opportunity today to talk about the critical importance of organ donation. I would like to talk about the role research plays in improving the lives of those Canadians who are receiving donations of lifesaving organs.

Our government recognizes the vital role that organ transplantation has played in improving the health of Canadians. We also believe in supporting research in order to help innovate in product development.

Canadians have been at the forefront of the worldwide organ transplant revolution. We have played major roles in every aspect of organ transplants, from surgical techniques to advanced research.

In February the Canadian Institutes of Health Research, or CIHR, hosted an important workshop that provided an opportunity for 60 members of the transplant community to gather and discuss key research challenges and opportunities. Ongoing research in this area is critical as organ donation will continue to be a critical part of the health system.

I would like to tell members about innovative and groundbreaking research initiatives that are being funded by our government.

Over the past four years our government, through CIHR, has committed close to $23 million to research kidney disease. For example, CIHR has invested $3.3 million in examining whether specific therapy aimed at reducing viral damage to the transplanted kidney would have a better outcome than standard therapy.

CIHR provided funding of over $825,000 to study the long-term medical and psychological risks of donating a kidney. This study will improve the ability to select the most suitable donors and will improve and enhance the information that is provided to Canadians interested in becoming donors.

Kidney disease takes a daily toll on Canadians and on their families. This disease can also be a cost burden on our health care system.

The Canadian Institute of Health Information, or CIHI, estimates the cost of dialysis treatment per patient, per treatment to be $60,000. Over a five year period, the cost savings of a kidney transplant is approximately $250,000 per patient. Another way to look at this would be to consider that the more than 15,000 Canadians living with transplanted kidneys means that $800 million can be invested in other areas of the health system.

Therefore, ensuring that there is a supply of organs for transplantation is significant, not only for the transplant recipients and their families but also for our health care system.

Do members know that kidneys are the organs in highest demand and are also the most commonly transplanted organs? Three-quarters of the nearly 4,000 Canadians on the waiting list for an organ donation are waiting for a kidney. The fastest growing group of organ recipients is those aged 60 and older.

Our youngest citizens have also benefited from the expertise developed by Canadian surgeons in performing organ transplants in children and young adults. In 2010, 49 young Canadians received a kidney transplant. Today, transplantation has changed this reality and offers a new lease on life to a growing number of Canadians, both young and old.

Unfortunately, there is far more demand for organ transplantation than there are available organs. In 2010 more than 4,000 Canadians were on waiting lists for organ transplants, including those in Newfoundland and Labrador.

One of those Labradorians is Cassandra Rich, my niece from my home community of Sheshatshiu, whose story I would like to share with the House.

Cassandra is 21 years old and was born with kidney disease. Diagnosed at the age of three, she was referred out of province and when she was nine to a specialist in Nova Scotia. She typically spent approximately five months out of each year in a hospital in Halifax until she reached end-stage renal failure, requiring dialysis.

Cassandra is worried most about the impact this has had on her mother, Christine, a single parent. With English as a second language and the isolation of out-of-province care, it has been difficult for Christine to be away from her reserve and her family for long stretches of time due to Cassandra's illness.

In addition to Cassandra's health problems, she also has a severe peanut allergy, making her medical issues that much more difficult and her mother's dedication to Cassandra's well-being that much more important.

Although her mother reassures her that there is nowhere else she would rather be, Cassandra carries with her a sense of guilt at the disruption her illness has caused in her mother's life. Cassandra travels 100 kilometres round trip, from our community to the town of Happy Valley-Goose Bay to have four-hour-long dialysis sessions three times a week.

When asked how organ failure has affected her life, she talks about how she can no longer take holidays, go in the bush with her family, or participate in activities like swimming due to the port in her chest. She is careful about what she eats and drinks and feels that people treat her differently and she cannot take part in social activities that other young adults her age enjoy.

Despite her challenges, Cassandra has kept up with her workload in school and graduated at the top of her class. She wants to be a pharmacist. Last year, she completed the aboriginal transition program offered by the university. She was recognized by the college for her courage and commitment to her education and positive attitude. She occupies herself by painting and working as a part-time secretary at the Sheshatshiu Innu School.

Cassandra has been on the organ transplant list for the past year. Ongoing dialysis treatment and becoming a successful candidate for organ transplant has brought with it a new set of medical challenges. The port in her chest, where the dialysis line is connected, must be changed every three months in the city of St. John's, Newfoundland, which is a two-hour flight from Happy Valley-Goose Bay. In addition to the quarterly journey to prepare for an eventual organ transplant, she undergoes medical testing, scans and blood work every two months.

Like all others on the list for organ transplant, Cassandra has no idea when a kidney might become available. She remains hopeful and has a bag packed and ready should she ever receive a call.

Cassandra's story is yet another example of how important the issue of organ donation is to all of us.

One area recognized as having potential for increasing the supply of lifesaving organs is the practice of living donations.

Living donations take place when a living person donates an organ or, in some cases, a part of an organ, for transplant in another person. Oftentimes, these donations occur among family members or may involve close family friends. Sometimes, however, Canadians choose to donate an organ, or part of an organ, anonymously or as a paired exchange, a selfless act that deserves our collective praise.

Organ transplantation has given hope to thousands of Canadians and their families. The advances that have been made in the field over the past decades are significant. We can certainly applaud the role that Canadian research has played, and will continue to play, in organ transplantation to see the best outcomes for all Canadians.

It is now with hope that I encourage Canadians to seriously consider becoming an organ donor and that, more important, they make their wishes known to their families and loved ones.

Organ Donations
Government Orders

8:20 p.m.

Conservative

Joy Smith Kildonan—St. Paul, MB

Madam Chair, my colleague's speech was very moving. I know when something like this happens, when there is kidney failure and a kidney donation is needed in one's family, or any kind of organ donation, it very much hits home.

The member mentioned the living donor exchange. It is a national registry. Our government has taken a real leadership part in it within the last five years. Donations are something that is extremely important to the community.

Could the member expand a bit on the living donor exchange that has been set up? This national registry that is very important to kidney donation.

Organ Donations
Government Orders

8:20 p.m.

Conservative

Peter Penashue Labrador, NL

Madam Chair, in addition to that question, the important question is around the accomplishments in research on organ transplantation in Canada.

In 2010 the Government of Canada, through the Canadian Institutes of Health Research, committed over $10 million to research directed to transplantation. Every year thousands of Canadians receive transplants of solid organs. Transplantation is now the preferred treatment for end-stage organ failure and stem cell transplantation is an established therapy for many conditions and can be a cure certain cancers.

Regenerative medicine is a growing field in Canada. This emerging field is allowing scientists and engineers to create organs to be regrown from the patient's own cells. This research involves harnessing the power of stem cells, which can renew themselves and differentiate into many other cell types. This research field is early stages and will take time to fully develop.

However, some regenerative therapies are already being used in clinics today. As our understanding of stem cell advances, it is becoming clear that this field has the potential to transform medicine and provide treatments for the world's most devastating diseases.

Canadian researchers are making important discoveries about how stem cells function at the genetic level. This new knowledge will allow us to develop new therapies for important health issues, such as health disease, muscle disease, multiple sclerosis, vision loss, diabetes, brain and spinal cord injuries.

For example, Dr. Ren-Ke Li from the University of Toronto is working on identifying the optimal cell type and conditions for transplantation to regenerate damaged heart muscle. His research is using cell and gene therapy to promote blood vessel formation and to prevent the complications of heart surgery. If successful, cell transplantation should significantly improve heart function, increase patient longevity and quality of life.

CIHR has also supported the research of Dr. Jevnikar and his team from the University of Western Ontario. They are looking at how and why organs and tissues are damaged during transplantation in order to find ways to extend the life of transplanted organs.

Despite current anti-rejection drugs, transplanted kidneys, for instance, may last only 10 years in half the patients. This research initiative will lead to innovative treatments that will improve the lives of transplant patients in Canada.

Organ Donations
Government Orders

8:25 p.m.

Conservative

Joy Smith Kildonan—St. Paul, MB

Madam Chair, it is very important to have these questions and comments on the record. I have to thank the minister because our government has recognized the need to continue to improve organ donation. So many people need it.

It is a symbiotic relationship where the provincial and territorial jurisdictions take care of the delivery of health care and at the federal level we take care of the health and safety of the actual organs. That is why our government, along with our provincial and territorial partners, asked the Canadian Blood Services to develop a plan for an integrated organ and tissue donation and transplantation system. They are currently review the Canadian Blood Services call to action.

Perhaps the minister could make some comments on this initiative, the call to action initiative which includes proposals to improve the performance of donation?

Organ Donations
Government Orders

8:25 p.m.

Conservative

Peter Penashue Labrador, NL

Madam Chair, the question that is more pertinent to the issue I have just raised is what the government is doing to address increasing kidney failures among Canadians. The Government of Canada directly contributes to the prevention of kidney disease through the Canadian diabetes strategy, the aboriginal diabetes initiative and the integrated strategy on healthy living and chronic disease.

Over the past four years, the government, through the Canadian Institutes of Health Research, has committed close to $23 million to research directly related to kidney disease. The Government of Canada plays a role in the regulation of the safety of organs and tissues used for transplantation through the Safety of Human Cells, Tissues and Organs for Transplantation Regulations.

The federal government has already invested close to $120 million in the past decade in areas of organ and tissue donation and transplantation to help prepare the ground for system transformation. This includes almost $69 million in transplantation research from 2000 to 2010, close to $49 million to CBS and to OTD processors, the Canadian Council for Donation and Transplantation.