Debates of Dec. 5th, 2011

Organ Donations

[Libby Davies, NDP, Vancouver East, BC]

Madam Chair, just as a follow up to my earlier question, in the same report that I referred to as background and research, one thing which bothered me was that it said that neither the CCDT, the Canadian Council for Donation and Transportation, nor Health Canada has devoted much attention to public awareness. No campaigns have been conducted since 2001 and 2002. The report I am reading from is from 2009. Maybe something happened in 2009 or 2010, but if that is not that case, it is worrying that the public awareness, education and getting people to sign up which, as the member has just said is so important in this whole issue, was not done.

I wonder if he has any comment on that. This is one issue on which there is commonality in the House. This is a very human issue. It affects constituents across party lines, of course. If we can encourage better public information, and if this was one of the mandates of the council, it worries me that we are not quite up to speed on doing the public awareness.

Maybe because he is the Parliamentary Secretary to the Minister of Health he has more recent information, but this report made it look like not much had happened since 2002, which is somewhat concerning.

[Colin Carrie, Conservative, Oshawa, ON]

Madam Chair, my colleague is correct in that there has been activity since 2009. I spoke about the Living Donor Paired Exchange Registry. It was launched as a three province pilot in January 2009. In 2010 Quebec signed on. It has become a Canada-wide registry. In Ontario, very recently www.beadonor.ca has come on line.

I would challenge the member and everyone in the House that we need to do more. This is something that day in and day out is not a high priority for people; people are working hard, running around, doing their jobs, looking after their kids. This is something on which we could make a true difference. As I have said, I have been honoured and graced to have treated patients in my practice who have had a transplant. The difference in their lives is huge. It is like giving them their lives back. It only takes a couple minutes to register. Each and every one of us should make that attempt.

[Libby Davies, NDP, Vancouver East, BC]

Madam Chair, I am pleased to participate in this very important debate this evening. In the rough and tumble of the life of Parliament, we can argue and disagree, but every once in a while an issue comes forward, and sometimes it is through a take note debate where there will be no vote, but at least we are able to express the concerns and issues we have around a particular issue. The issue of organ donation in Canada is a very important one. It is an issue that is deeply personal for the more than 4,000 Canadians who are waiting for organ transplants to save their lives.

Last year only 1,803 transplants were performed and there are many patients on waiting lists still. Unfortunately, the reality is that over 200 Canadians died last year while waiting for organ transplants. The greatest need is for kidney transplants. Seventy-five per cent of patients on the lists are waiting for kidney transplants.

We are all touched by this issue in various ways. I think of Garry Keller and what he and his family are going through. Our hearts go out to him and the struggle he is going through health-wise, as well as looking for a potential donor. This is very critical. Human stories are very difficult to share and talk about, but they help us understand what it is we need to do as members of Parliament, policy makers and legislators. I want to thank Mr. Keller for speaking out, helping inform this debate and bringing a sense of urgency of what it is that needs to be done.

We only heard recently about this take note debate, but over the past couple of days I contacted a couple of people who are very involved in this issue. I contacted someone who undergoes kidney dialysis and someone who is involved provincially in managing the liver transplant program. I would like to make a couple of comments about what these folks told me. It is one thing for me to talk about what is in a report, but when people hear it from those who are directly involved, it is ever so much more meaningful.

An individual who has been on kidney dialysis wrote to me today and said:

--to encourage all willing donors to sign their licenses, yes, but also to go on-line to register. If someone is in hospital dying (which is usually the case) the donor info pops up on the screen so the doctor can see that you are registered. If a family member is not right there or does not know, organs are then wasted.

This person went on to say:

...why cannot a national registry be created/maintained with this data so if someone does need a kidney suddenly (which is almost always the case) that the list of potential donors can be quickly [connected] and the appropriate action taken.

This is someone who is undergoing dialysis. That point is well taken. We have to understand what is behind it and that we need to do more.

I received an email from someone who is very involved in the system and is working with people who need transplants. This person said:

Every day people die and almost as hard, people are unable to be productive, contributing citizens while they wait...who are too ill to work and contribute. This applies to dialysis patients as well in many cases - they exist, but can't work at the same level as they would normally if at all....

The person went on to make the point:

It brings great comfort to the family of the deceased person to think they have made a difference in saving a life. Organ donation is the ultimate recycling. It seems odd to me that Canada with its reputation of helping others has one of the poorest organ donation rates in the modern world. We need to find a way to engage our people in organ donation including the people who have come here from elsewhere - using language, culture and reaching out to all.

That was an email from someone who works in the system coordinating the list in a province.

Canadian Blood Services has said that Canada is one of the few countries in the western world without a national coordinated system for organ and tissue donation and transplantation. The system as it stands today is at capacity and is struggling to cope with current needs and projected future demand.

I return to where I started, which is on the issue of public policy. We have a responsibility as parliamentarians to ensure that our government is actually following through on recommendations that have been made. The Canadian Council for Donation and Transplantation was set up in 2001. I have no doubt that this body, which acts as an advisory body to the conference of deputy ministers of health, has done good work. I am not disputing that. However, we have not made the kind of progress that is needed on an overall pan-Canadian strategy. In some provinces there are very good systems. I was just speaking with one of my colleagues from Quebec, who told me that in Quebec there is a very well-organized system. There is good public awareness. I hope we will hear from the member later in the evening. He could share some of the experiences of what he knows to be happening in Quebec.

The fact is, as with many issues, it is uneven across the country. This report was done in 1999 by the health committee to draw attention to the gaps, inadequacies, and lack of an overall policy. It is rather disturbing and worrying that here we are many years later and not an awful lot of progress has been made.

Those are very important questions. We are debating some of these issues as we look at the health accord that was signed in 2004. As we approach the new health accord in 2014, a lot of questions that Canadians, advocates, the medical community and the health community are raising are around accountability, follow-through, knowing that we have procedures and programs in place to ensure that the systems are working the best they can, whether it is for organ transplants or for any other medical procedure.

I have concerns that on this issue we are not doing everything we could do, even on the level of public awareness. Obviously, we have to encourage people to come forward and to sign up, either online or in the various other ways of doing it, depending on where they live. There has to be a public awareness campaign.

As I remarked earlier to the parliamentary secretary, according to this report from 2009, there has not been an overall campaign, a big public awareness campaign in terms of multi-media, since 2002. This is a very critical factor.

We need to make people aware, particularly in multicultural communities where people may not be very familiar or comfortable discussing this issue. Surely, it is incumbent upon us to ensure that this information is out there in culturally appropriate ways, in different languages, in local communities, as well as in national campaigns to make it clear and to encourage people to sign up either as a living donor or to donate their organs when they become deceased.

Sometimes these are not pleasant things to talk about but it is part of our life process and it is a conversation that we should open up. Maybe, as members of Parliament, we can help open this up. I implore the government to look at this report from 1999. This is a job not yet finished on a very important issue.

I want to end by expressing admiration for the 4,000 Canadians who are waiting for an organ transplant. I recognize the struggles, hardships and difficulties they go through, some of whom are not able to work or are in pain. They probably all have a sense of anxiety. We say to them tonight that we know this and we need to act and follow through.

[Joy Smith, Conservative, Kildonan—St. Paul, MB]

Madam Chair, I thank the member opposite for her comments tonight. We can honestly hear the concern the member has for kidney disease transplants and transplants of different organs, as well as stem cell transplants.

The issue of kidney disease is something that a lot of people are dealing with, as well as other organ transplant issues. When I put on a big event in Parliament on October 6, 2010, we were then talking about OneSwab, OneMatch, OneLife, which was a stem cell donation needed for cancer patients. Our government contributes to the prevention of kidney disease through the Canadian Diabetes Society, the aboriginal diabetes initiative and the integrated strategy on healthy living and chronic disease. Chronic disease is something the health committee is studying right now. My heart goes out to Mr. Keller because I can see the trauma that families go through.

What specifically and personally has the member done or intends to do to make people aware? This is bigger than government. Each Canadian must contribute in a very meaningful way. Could she please tell the House some ideas she has to personally contribute to this awareness program with regard to the need for kidneys?

[Libby Davies, NDP, Vancouver East, BC]

Madam Chair, the first thing we are doing is having this discussion and debate tonight, which is a very important element.

We represent 308 ridings across the country, from the north to the south, from large urban ridings like my riding of Vancouver East, to vast rural areas. One thing we could all do, and I will commit to do, is to get out more information locally. We have a great opportunity and an enormous privilege to communicate with their constituents. Maybe that is one thing we can all say we will do tonight, on an individual member of Parliament level, that we will send out information to our communities. In my case, because my community is very diverse and there are many languages, I would try to do that in a multilingual way.

However, I do feel that we need to go beyond that. This is a big issue that affects thousands of people. It is very important that we give some feedback to the government and say that more needs to be done at the national level in terms of public awareness and a coordinated system across the country, as I tried to describe in my remarks. I am not an expert on this, but we understand public policy and we know we need to put a system in place that works. We have very sophisticated technology these days. It is not rocket science. It is something that can be done.

Those are a few suggestions and maybe more will come up during the evening.

[Pierre Nantel, NDP, 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.

[Libby Davies, NDP, 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.

[Hedy Fry, Liberal, 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.

[Joy Smith, Conservative, 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?

[Hedy Fry, Liberal, 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.

[Libby Davies, NDP, 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--

[The Chair, NDP, Denise Savoie]

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

[Hedy Fry, Liberal, 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.

[Frank Valeriote, Liberal, 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?

[Hedy Fry, Liberal, 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.

[Peter Penashue, Conservative, 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.

[Joy Smith, Conservative, 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.

[Peter Penashue, Conservative, 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.

[Joy Smith, Conservative, 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?

[Peter Penashue, Conservative, 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.

[Anne Minh-Thu Quach, NDP, Beauharnois—Salaberry, QC]

Madam Chair, I would like to thank my colleague opposite for his heartfelt speech.

There are a lot of problems in terms of delays obtaining organ donations and transplantations, and very little research is carried out when it comes to recipient lists. While people wait, would the member opposite agree with the federal government investing money so that more research can be conducted in the area of recipient lists? Just as there is a need for donor lists, there is also a need for recipient lists, so that—

[The Chair, NDP, Denise Savoie]

Order, please. The hon. Minister of Intergovernmental Affairs has the floor.

[Peter Penashue, Conservative, Labrador, NL]

Madam Chair, I apologize. I missed most of the translation of that question. However, I will say there was an important transplantation workshop organized by CIHR in Montreal and certain positions came out of that.

Every year, thousands of Canadians receive transplants of solid organs, stem cells and pancreatic islet cells. End stage renal, liver, lung, heart, pancreatic and small intestine failures are now treated by organ replacement. For cancer, stem cell transplantation can be a cure. However, there are currently more than 4,000 Canadians on waiting lists for organ transplants, far more than accommodated by our current rate of organ donation. Achieving long-term survival accompanied by a good quality of life remains a challenge. The health and economic burden in Canadian society is steadily rising and the aging demographic creates increasing demand for donor organs.

In addition to these challenges, CIHR transplant workshop participants identified the need for improving both quality and quantity of living and deceased donor organs; improving our understanding of the immunological mechanisms and pathways mediating transplantation-related infection, inflammation and immunosuppresssion in humans; overcoming rejection and establishing the long-term tolerance to grafts; developing improved therapeutics to sustain graft survival with fewer adverse side effects, and expediting their uptake into clinical practice; establishing tailored transplantation policies and programs for children and other vulnerable populations; and developing national standards of clinical care and mechanisms for long-term follow-up of Canadian transplant recipients.

In order to address these challenges, CIHR transplantation workshop participants recommended that teams and networks would foster collaborations across the field of research; partner with public and private sector for the purpose of forging the necessary linkages among the transplant communities; support a common platforms, infrastructure, databases and operating procedures; and encourage training.

[Anne Minh-Thu Quach, NDP, Beauharnois—Salaberry, QC]

Madam Chair, I am very pleased to be able to speak today on the crucial importance of organ donation.

Donating one’s organs or tissues means giving the gift of life to someone who truly needs it. Obviously, consenting to donate one’s organs is not an easy decision and a number of factors may also influence that choice. In any event, more and more people are dying while still waiting for an organ to be offered by a generous person. The gap between the number of organs available and the number of patients waiting continues to grow. The number of people desperately waiting for the telephone call that will change their life is also growing steadily. It is therefore important for us to discuss this, to think about it and to develop strategies that will improve the situation.

In spite of recent efforts to increase the number of organ donations, the number of organs available in Canada has stagnated. The two reports published in 1999, one produced by the House of Commons Standing Committee on Health and the other by the National Coordinating Committee for Donation, led to only meagre progress and did not result in the adoption of a long-term, Canada-wide strategy orchestrated by the provinces and the federal government.

Canada is still far behind other countries such as Spain, France and the United States in terms of the number of post mortem organ donations. In fact, Spain’s rate of post mortem donors is twice as high as Canada’s. Of course, that figure depends on a number of other factors, including the traffic accident rate, for example.

According to statistics from Transplant Québec, a provincial organ donation agency, the number of organ donors fell from 151 to 119 between 2008 and 2010, while the number of people needing transplants rose from 1,159 to 1,241 in the same period. The trend is therefore very similar in Canada. We need to redouble our efforts if we want to be able to close that gap.

There are solutions to consider, however. On average, each donor contributed to nearly four lives, and a single donor can save as many as eight lives. Saving lives is therefore within the reach of all of us. So what can we do to increase the number of patients who receive an organ donation?

Because health is under provincial jurisdiction, the federal government can play a coordinating role in raising awareness and in initiating a dialogue with the provinces to establish a national organ donor registry and possibly adopt measures that have been successful elsewhere. We should also consider creating a more effective registry of recipients and way of searching for matches between the two registries. Establishing a national registry would therefore facilitate the process of identifying people who need a donation or people who are prepared to donate. The registry could be associated with income tax returns or the census form. Then everyone who worked on their finances at some point during the year would have to think about the importance of organ donation.

There is not always a lot of leeway in terms of time when an organ transplant is needed. The less time people have to wait, the greater the chances of success. Information is needed before a transplant is done, such as blood group, tissue type, the size of the organ, the urgency of the procedure, and so on. A national registry that was managed effectively could mean a higher success rate.

Let us talk about awareness building. There have been no further campaigns since the 2001 and 2002 national campaigns, which followed the recommendations from the two 1999 reports. The focus should instead be on a long-term awareness-building strategy in order to ensure, among other things, that health care professionals can discuss these matters with their patients and that families discuss organ donation more. Moreover, according to the doctors I consulted, families can sometimes be an obstacle to organ donation following the death of a loved one.

We know that doctors do not necessarily have the resources or the time required to make requests of the families of the deceased. More money should therefore be invested to give doctors the tools they need and to help health care professionals obtain family consent in order to proceed with the removal of organs from a deceased person.

This certainly is not the best topic of conversation around the dinner table at holiday time, but it is an important subject to discuss with our loved ones. If, upon reflection, you consent to donate your organs and tissue upon your death, it is crucial that you share your decision with your loved ones, which may also have a positive effect in terms of how others think.

Building awareness is important as it helps to debunk myths and address public fear. For example, many people are afraid that if they give prior consent, less effort will be put into saving their lives. In fact, this fear may explain the discrepancy between the number of people who are in favour of donation and the number who actually sign their donor card. In fact, this discrepancy may also be due to simple logistics, but if doctors were able to discuss this myth, people would be reassured and might be more likely to sign their donor card and discuss what they have done more openly.

Moreover, we could also encourage our provincial counterparts to explore the question of presumed consent. Canada currently uses a system based on explicit consent. In other words, consent cannot be presumed given unless the individual in question has signed an official statement indicating his or her consent.

In some countries, such as Spain, where the post-mortem donation rate is very high, consent is presumed, which means that it is assumed that the individual automatically agrees to donate his or her organs upon death, unless the person, while alive, has expressly refused organ donation. Those in favour of presumed consent argue that, according to polls, the majority of Canadians are in favour of organ donation, but very few of them complete their donor card. In short, although I am not explicitly suggesting that we should adopt this kind of approach, it is nevertheless worth serious and in-depth consideration.

Finally, the Health Canada standards for potential donors could be revised. Currently, these standards exclude homosexual men, because men who have had sexual relations with other men in the last five years are excluded. This is an outdated standard because we now have the tools required to screen for blood and organ diseases. There is a lack of dialogue in the medical and research community concerning Health Canada's standards.

In light of the growing gap between the number of available organs and the number of people in need of an organ, we must act very quickly. We will have to be creative and work closely together with the provinces and territories. There are enough examples elsewhere for Canada to find practical and achievable solutions. Canada must develop a public awareness campaign to facilitate and encourage organ donation, explain how the organ donation process works, and do more to create a national registry of donors and recipients.

[Joy Smith, Conservative, Kildonan—St. Paul, MB]

Madam Chair, I would agree that it is not only government, but it is also personal awareness of the need to sign the card to donate an organ because it is a gift of life to many people.

The Government of Canada contributes to the prevention of kidney disease as well, and that is done through the Canadian Diabetes Society, the aboriginal diabetes initiative and the integrated strategy on healthy living and chronic disease. That is one piece of it.

Tonight when we are talking about the actual national strategy for donation, I would like to draw attention to the living donor exchange, which is a national registry. Even though the availability of deceased donors has gone down somewhat, the living donor exchange, which involves a person who actually chooses to donate a kidney to another while still alive, is of paramount importance.

I would agree with the member opposite that it is an awareness thing. That is why earlier tonight I asked in the House, as the member for Vancouver East so eloquently pointed out too, what does each one of us as a Canadian have to do?

So it is a combination of both.

I would ask the member opposite to elaborate a bit more clearly on some more things individual Canadians could do, coupled with the partnership with government, to make this awareness more available. We do not talk about it over the Christmas dinner table, but maybe that is something we should do, because it is a matter of time when people need organ donations. Perhaps the member could expand on that thought a bit more for the House.