Libby speaks out in support of organ donation

House of Commons
December 5, 2011

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Ms. Libby Davies (Vancouver East, NDP):

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.

For more information on how to sing up to become an organ donor, go to: