HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Tuesday, February 2, 1999

• 0911

[English]

The Chair (Mr. Joseph Volpe (Eglinton—Lawrence, Lib.)): The meeting is called to order.

I want to welcome everybody back to the committee. Bonjour, mesdames et messieurs.

Pursuant to Standing Order 108(2), a study on the state of organ and tissue donation in Canada, we're going to begin our studies today with some witnesses, some who we've seen here before and others who promise to be most interesting.

This morning the committee will hear from the co-chairs of the National Coordinating Committee on Organ and Tissue Donation and Distribution. We have with us the co-chairs: Ms. Elizabeth Barker, who is also the director of acute care programs at the Nova Scotia Department of Health, and Dr. Philip Belitsky, who is professor of urology at Dalhousie University and has also been the director of the kidney transplant program at the Queen Elizabeth II Health Sciences Centre in Halifax and director of the multi-organ transplantation program.

The witnesses appearing from Health Canada, some of whom you will recognize, are André LaPrairie, who is the federal representative on the national coordinating committee as well as the project manager for the blood, tissue, organ and xenograft project, and Dennis Brodie, manager of the policy division of the Bureau of Policy and Coordination.

Welcome.

As well, we have two new committee members, one of whom is here. I want to bid Madam Karen Redman welcome to the committee.

It's a very timely appointment to the committee because this is the beginning of a brand new study and your input will give us a different and fresh perspective.

And I believe we have at least one more new government member. I'll wait until the member appears. Ah, speak of the angel: Dr. Bernard Patry was on this committee before. In fact, some of you who served on this committee at the beginning of the last Parliament will recall Dr. Patry and his contribution to the study on children's health.

I bid the two new members welcome. We're going to go immediately to the presentation provided for us by Ms. Elizabeth Barker and Dr. Belitsky.

I'm going to ask the government representatives to speak later. We have already received a presentation from you, but I think you probably have an update since the last time we were together.

• 0915

To our guests, I don't know how often you've been before committee but in our procedures here we like to engage in dialogue, so whatever presentation you may have, if you can go five minutes apiece, it would be great. I won't hold you to it because you've come a long way, but we try to limit ourselves to that and the rest of the time it's questions and answers.

Ms. Barker, you're first.

Ms. Elizabeth Barker (Co-Chair, National Coordinating Committee on Organ and Tissue Donation and Distribution): Thank you.

Good morning. I would like to thank the standing committee for the opportunity to be here as a witness. It's a privilege to be able to focus national attention on the issue of organ donation in this country.

The science of transplantation has progressed to the point where medical miracles are almost routine. This is due to advanced surgical techniques and immunosuppressive therapies. Transplantation is a solution for many kinds of organ failure. Moreover, transplantation will continue to figure prominently as a treatment modality. In fact, it has been estimated that in the next century up to 50% of surgical operations in a large hospital are likely to have something to do with transplants, not just of the big organs but of tissues as well.

However, every year people die because too few organs and tissues are available for transplantation. There's a chronic problem, as you know, of undersupply, and there are indications that the disparity will continue to grow between available organs and tissues and the demand.

The present organ donor rate is completely inadequate to meet the demand. In fact, the Canadian Organ Replacement Registry report stated that by December 31, 1997, there were over 3,000 people in Canada waiting for an organ transplant. The imbalance between the number of patients waiting for an organ and the available organs is increasing steadily. This growing gap is understandably very troubling for transplant professionals, advocacy groups and very sick patients.

A study commissioned by the Advisory Committee on Health Services, ACHS, suggested that the shortage of organs and tissues may be explained in Canada by a number of factors, including: ineffective hospital practices with respect to donor identification and procurement; inadequate knowledge on the part of health service providers; barriers to and disincentives for hospital and professional involvement in the identification process; and a lack of public action in donating organs in spite of general support and a stated willingness to donate.

The same review suggested that there were systemic problems with organ tissue distribution practices in Canada, including insufficient national standards and, with the exception of livers, no uniformly developed and applied formula for allocation of organs and tissues across provincial borders, as well as inadequate information systems. The study also suggested that there was room for improvement in the organization of provincial and regional procurement and distribution systems.

A 13-point national strategy was derived following consultation around this report. I understand you already have a large binder of information about this. The four key initiatives emphasized were: the development of national sharing algorithms, the development of national accreditation standards, the development and maintenance of a national tracking system and further investigation of the extent to which equitable access is currently achieved across the provinces.

As you know, I'm sure, Canada is an anomaly in the developed world in not having a formalized national mandate or system for the distribution of organs. There is a need for leadership and organization at the national level, but at the same time there appears to be a strong desire to build on what already exists. There are many good and committed individuals and organizations working to improve our performance, but they cannot succeed alone.

• 0920

The current national coordinating committee is a multi-year initiative arising from previous dialogues with professional organizations such as the Canadian Society of Transplantation, the Canadian Association of Transplantation, the Canadian College of Health Services Accreditation, CORR, CIHI and the Kidney Foundation.

It's based on the underlying belief that those organizations already involved are best placed to provide the necessary content, clinical knowledge and expertise. I understand the deputy ministers of health have identified this issue as one of their work program priorities and have collaborated and supported this initiative.

I would like to add, though, that there are no quick fixes, no single solutions and no magic bullet. There is an overwhelming need for national leadership to improve the rates of donation and to monitor the changes.

There is also a need to raise the issues around organ donation in the public consciousness and to make it an issue of national importance. Any national initiatives should be based on the principles of collaboration, partnership and buy-in from all those involved. I look forward very closely to the outcome of the standing committee's deliberations on this very important issue.

The Chair: Thank you very much. You're bang-on in five minutes.

Dr. Belitsky.

Dr. Philip Belitsky (Co-Chair, National Coordinating Committee on Organ and Tissue Donation and Distribution): Mr. Chairman, it's been suggested that surgeons can't speak without props. I wonder whether I could have your permission to use the overhead projector.

The Chair: I don't have any problem with that. We have a certain procedure here, though. Is your presentation in both languages?

Dr. Philip Belitsky: No, but we have a translator.

The Chair: You do? It's a little difficult for us, because it means we are doing something that might not work to the advantage of all the members around the table and might reduce their effectiveness.

I'm going to ask if I have consent around the table to go ahead with this.

Okay. Dr. Belitsky, please.

Dr. Philip Belitsky: Thank you very much.

I'd just like to describe transplantation in Canada. There are four issues that need to be addressed whenever transplantation comes up. One is the science and outcomes. The second is organ procurement, for which you can also read organ donation. The third is how organs are allocated. The fourth is safety.

I think we need to understand from the outset that the science and the outcomes of transplantation in Canada are equal to, if not better, than anywhere in the world, and underpinning all of our discussions and deliberations that fact must be remembered. We're dealing with a system that produces outstanding outcomes and has excellent science as its foundation.

The issue of safety has been dealt with, I believe, in our brief, and for purposes of brevity I won't deal with it.

I'd like to deal with organ allocation and organ procurement. It needs to be very clear: these are two entirely separate and independent phenomena that depend on different processes and have no interdependence or interrelationship whatsoever except for the fact that without organs you have nothing to allocate. If we had an abundance of organs, the issue of allocation would not be a problem. So we must not confuse the two or discuss either of them as though they were the other.

All the issues related to organ allocation are influenced by the conflict or controversy between utility and justice. Utility refers to the benefit of society. Justice refers to the benefit to the individual. This is no trivial matter.

• 0925

As a consequence, differences in algorithms of how organs are distributed are based in this country not upon self-interest or on being self-serving but upon differences in the relative perception of utility versus justice. These are always there in making decisions, and it happens every day.

Yesterday, I had to decide between making my originally scheduled flight to come here or doing an operation on somebody who was scheduled for that day and who had already been cancelled twice for other reasons beyond his control. That's a conflict between utility and justice, and I couldn't justify not doing his surgery and taking a later plane.

As a result of these differences in perception, all of which are justified and all of which are based upon an individual's ethical foundation, we also have the issues of certain organs like the heart having short times outside the body during which they can remain vital, so our allocation system will depend upon the organ, upon the preservation characteristics and upon geography and transportation.

The important things about any allocation processes, whether they be regional, national or even in a smaller or larger unit, is that they be just, fair, transparent, developed with consultation and carried out in an open manner.

I'd like to describe the system for organ procurement or organ donation in Canada now. We have a federal structure. Provinces are responsible for health. Provinces primarily have the budgets for health. Each province has different traditions, different economies and different demographics. They all differ from each other. Within provinces there are differences. Between provinces there are different organ donation rates. Within each province there are different organ donation rates in different parts of the province. There are sporadic and uncoordinated promotion efforts that go on from time to time and with different degrees of intensity in different parts of the provinces and in different parts of the country.

With this kind of arrangement, we have a national organ donation rate of fourteen donors per million population per year, which is amongst the very lowest rates in countries that have the degree of development we do.

What's interesting is that not only does this describe Canada in 1999, this also describes Spain in 1989—a federal system with their equivalent of our provinces being responsible for health, different traditions and economies, etc. What they decided in Spain in 1989 was—as we've decided in this country—to change the way they did things. I'd like to share with you what they did and what the results were.

To accommodate to their political, economic and geographic circumstances, they developed a decentralized and non-bureaucratic system, both organizationally and in terms of accountability, in which they had national, regional and hospital coordination with a national coordinator responsible at the national level, the regional coordinator responsible at the regional level and the hospital coordinators responsible to the hospitals. This was a combined professional administrative arrangement much like our committee, with Elizabeth Barker representing government and me representing the profession.

As a consequence of the activity of this model, which took a while to implement because of all the differing circumstances that exist in their country, they had a progressive and continuous increase in their organ donation rate, from 14.7 in 1989—which is where we are today—to 27 per 1,000,000 population in 1995 and 29 per 1,000,000 in 1997.

Coincident with this, Spain is the only country in the western world that has had a significant reduction in waiting times for transplantation and in the size of their waiting lists. They have dropped their kidney transplant waiting list from almost 6,000 to 4,000 in the past eight years—which is unprecedented—as a consequence of their efforts. The death rate of people waiting for transplantation has plummeted dramatically to the lowest in the world.

• 0930

Today, we are like Spain was in 1989. If there is a recommendation I can make to this committee, it is that we develop and implement a Canadian model using the Spanish model as perhaps a template or model to build on, based upon the evidence-based results that have occurred as a result of their interventions.

Thank you, Mr. Chairman.

The Chair: Dr. Belitsky, thank you very much.

Before we turn to committee members, I'd like to get an update from André LaPrairie and Dennis Brodie. Dennis heads the national coordinating committee, right?

Mr. André LaPrairie (Project Manager, Blood, Tissue, Organ and Xenograft Project, Health Protection Branch, Department of Health): Actually, there's a bit of a mistake. It's not called the national advisory committee. Dr. Belitsky's and Elizabeth Barker's committee is really the national coordinating committee. I'm just Health Canada's rep on their committee.

The Chair: As you can see, the chair, who never gets confused about anything, is facing an equivocation in some terminology that he read.

André, maybe before you begin you could just clarify for the chair—because the committee is usually way ahead of the chair on these things—the composition of the body in question and where some of the membership might come from.

Mr. André LaPrairie: The membership of the national coordinating committee was provided in the documents we brought forward the last time we gave evidence. It's in section 1, and this is where the mistake is, because it's called the national advisory committee there. I can't remember whether the name changed or we were just using different names to mean the same thing.

The members are, along with co-chairs Dr. Belitsky and Elizabeth Barker, government representatives Anne Secord, from Saint John, New Brunswick, Maurice Beaulieu, from the Quebec Ministry of Health, Laura Pisko-Bezruchko, from the Ministry of Health in Ontario, and Prudence Taylor, who is with health strategies division of the Alberta health department.

In non-government representation, there are: Liz Anne Gillham-Eisen, representing the Canadian Association of Transplantation; Elma Heidemann, from the Canadian Council on Health Services Accreditation; Dr. David Hollomby, who is representing the Canadian Organ Replacement Registry; Dr. Norman Kneteman, representing the Canadian Transplantation Society; and Mary Catharine McDonnell, representing the Kidney Foundation.

That's the makeup of the national coordinating committee.

The Chair: I didn't want to digress from the main question and issue. I was just looking at the composition. You have one from the Atlantic provinces, one from Quebec, one from Ontario, one from all of the western provinces and one from the federal government.

André, go ahead.

Mr. André LaPrairie: Does that help?

Thank you for asking us back. I just thought I would say a few brief words to update you on our progress since we were last here. Like last time, Dennis Brodie is here to answer the hard questions.

The Chair: He did last time.

Mr. André LaPrairie: Yes, he did. He did very well, too, so that's why we let him come back.

• 0935

We'll see a draft set of standards addressing the safety of organs and tissues used for transplantation, which will be published by the Canadian Standards Association very shortly and will be available for review and comment from all transplant programs and other stakeholders that may be affected by the transplant standards.

The Chair: When you say “shortly”, are you talking about before the end of this month?

Mr. André LaPrairie: We hope by March. It's tough to speak for the Canadian Standards Association. They obviously have editorial duties to do, but we anticipate the standards very soon and will make them available to this committee.

The Chair: Thank you.

Mr. André LaPrairie: It has to be translated. I think that's the other part.

Also of note as part of Health Protection Branch's legislative renewal process is that Canada is proposing to modernize health protection legislation. This review will address human transplantation so appropriate definitions and regulatory frameworks will be applied instead of those currently used for drugs and devices.

Also of note, a federal-provincial committee on intraprovincial billing for transplantation is expected to release its report shortly, with “shortly” again meaning March of this year, I assume. This will also be made available, both to the national coordinating committee and this standing committee. We'll make copies available.

In addition, the therapeutic products program has now released its report on the National Forum on Xenotransplantation. It's being broadly distributed for information and comment. We'll also be providing forum recommendations in lay terms so they're understood by everyone, along with other background information on the definitions and issues surrounding xenotransplantation.

We're also releasing what we call a notice of intent clearly stating that in the absence of explicit regulation, xenografts, which are the live cells, tissues and organs from animal sources used in this procedure, will be considered therapeutic products and will be subject to the requirements of the Food and Drugs Act and regulations. We intend to develop a regulatory framework for xenografts that will address safety, efficacy and other regulatory issues surrounding the potential use of xenografts.

Our next steps include further consultation with all stakeholders and provinces as we develop the best methods to verify compliance with the organ and tissue standards. We'll continue to participate with the national coordinating committee and its strategies to improve transplantation in Canada, and there'll be further consultation with all Canadians as we develop a policy for the possible use of xenografts.

Thank you.

The Chair: Are there any hard parts, Dennis?

Mr. Dennis Brodie (Assistant Manager, Policy Division, Bureau of Policy and Coordination, Department of Health): Not yet.

The Chair: Thank you very much.

Keith, do you want to go first?

Mr. Keith Martin (Esquimalt—Juan de Fuca, Ref.): Thank you, Mr. Chairman. Merci beaucoup.

To all our speakers today, thank you very much for coming in front of our committee. I have a couple of quick questions.

Dr. Belitsky, you've hit one of the nails on the head very succinctly. You said that if we didn't have a problem with available organs, allocation would not be a problem. Perhaps you could tell the committee your thoughts on having a national organ-donor database where you could bring together potential recipients and potential donors in one database.

Also, can you tell us what you think about a mandated choice strategy such as one attached to the income tax form? As Ms. Barker mentioned in her excellent presentation, you illustrated four points already agreed upon by the federal-provincial task force, points such as the development of a national steering strategy, the development of a national tracking system and so forth. But I would submit to you that they do not address the central issue of the lack of organs available for donation.

Perhaps both of you can tell us your thoughts on having a system in which people would be able to tick off on an income tax form whether they would or would not like to be an organ donor. That would make a larger pool of people and give them more of an opportunity to actually become organ donors. As you said and as Ms. Barker said, everybody agrees that this is a good thing and we all think we should do it, but for some reason we don't actually put our John Doe or Jane Doe on the form.

Thank you.

Dr. Philip Belitsky: You asked me the question first, so perhaps I could address it first.

• 0940

As we indicated in our brief, there are many steps involved in the process of organ donation and every one of those steps is important. You cannot have an effective organ donation system in place unless every one of those steps is addressed in an equal fashion and integrated and coordinated.

Having a mechanism by which you know who is interested in being a donor and who would like to be a donor is an important part of that. Having a registry may well be the best mechanism for this. I think it certainly needs to be tested and evaluated. There are glitches involved in setting up any system. There is evolution as you think you have one system set up right, and as you go along with the quality assurance approach you find you make modifications all the time.

In looking at a donor registry, probably the best example we can use is the one set up in British Columbia. I think it would be very worthwhile for us to see how this works, to see how it functions and evolves and to learn from them how best to have such a registry. Every effort should be made to encourage what they're doing in order for us to be able to learn from the experience, because this is a novel approach and hasn't been done elsewhere. As with all new things that have a lot of intrinsic merit, the implementation can sometimes be problematic.

I would like to see a donor registry. I would like to learn from British Columbia how best to do it and, learning from their experience, set it up progressively in other parts of the country to see how it works in other areas, ultimately having a system like you're describing either as a national activity or a network. With today's technology, it's possible to do it in many ways. I'm not sure what the best details are as to how it should be done, but certainly in principle it would be very worthwhile to have and to have functioning well in order to learn from the experience of those who do have it as to (a) what kind of results it produces and (b) how best to implement it.

With regard to mandated choice, that's a variation on the theme. It's another way of getting that information. There are many ways to do it. I'm not sure I could say that putting the information in one site or another is best. There should be some mechanism by which the information is available to those who have taken the important step of identifying a donor and to those who are carrying out the important step of requesting permission from the family. It would be helpful for them to have the information available. With regard to the mechanism by which it comes, I'm not sure what the best way is beyond the registry. At the moment, that is what seems to have the most promise.

The Chair: Madame Picard.

[Translation]

Ms. Pauline Picard (Drummond, BQ): Dr. Belitsky, I believe you are on the National Advisory Committee on Organ and Tissue donation and distribution. Is that correct?

[English]

Dr. Philip Belitsky: Oui, Madame. I'm the co-chair of the committee.

[Translation]

Ms. Pauline Picard: In your presentation, you seemed to say that the model or system implemented in Spain is, in your view, the most safe and efficient one. I apologize for not finding the time to read your brief, but it seems there is a country which has a good, low-risk system. Does your brief recommend that the committee study the Spanish model?

[English]

Dr. Philip Belitsky: No, I did not. The brief was an attempt to outline the major issues involved in the process of organ donation and distribution and to indicate by highlighting where I felt there was a potential role in the process for government.

• 0945

[Translation]

Ms. Pauline Picard: Does the mandate of the advisory committee include making recommendations to implement a national system in co-operation with the provinces?

[English]

Dr. Philip Belitsky: The mandate is to make recommendations to ACHS, which created our committee. We've been asked to appear before this committee as an independent activity, both as co-chairs of the national committee and, in my case, as a consultant to the committee because of my background in transplantation.

In my brief, I express the feeling as to where government may have a role to play in the process of organ donation and distribution. In my presentation here, I wear both hats.

[Translation]

Ms. Pauline Picard: Would you go so far as to suggest that the Standing Committee on Health study the Spanish model?

[English]

Dr. Philip Belitsky: Very certainly. In our instructions to our national coordinating committee, we ask that all recommendations they come up with in their deliberations be evidence based. We all have our biases. We all have our opinions. In an issue as important as this one, it's critical that whatever we bring forward as a recommendation be based on evidence wherever possible.

I can only make the same recommendation to your committee. Having seen an approach taken in another country very similar to ours in composition and politically, in the matters I have described it behoves us to study their system very carefully so we can learn from it, build upon it and create our own system based upon many of their principles, which I think will serve us well. It's evidence based.

Spain has the highest organ donation rate in the world. It is the only country that has had a dramatic reduction in waiting lists and waiting time for transplantation and, as I mentioned, it is the only country that has such a low rate of death among those waiting for a transplant. We have to look at it very critically and very carefully, learn from what they do, adopt whatever will work for us, modify it according to our circumstances and move ahead with it.

It's possible to spend months and years deliberating about whether we should do this or do that, but I think we can also go directly to where the greatest experience is and derive the greatest benefit from it.

Ms. Pauline Picard: Merci.

The Chair: Ms. Barker, I think you wanted to add something.

Ms. Elizabeth Barker: I just want to clarify the mandate of the coordinating committee. It was struck to carry out four specific elements. At the end, we have been asked to make recommendations to our parent body, the Advisory Committee on Health Services, for options on sustaining the strategy.

The Chair: Merci.

Mr. Myers.

Mr. Lynn Myers (Waterloo—Wellington, Lib.): Thank you, Mr. Chairman.

Dr. Belitsky, could we have a copy of that overhead presentation you gave?

Dr. Philip Belitsky: Certainly.

Mr. Lynn Myers: I was interested to hear you thought there were three constituencies you would be seeking differing contributions from in this case. You identified the public, of course, and institutions and health care professionals.

• 0950

On the point of health care professionals, there were two things that struck me. The first was, “demonstrate awareness and acceptance”, and the second was, “acquire the skills necessary to perform” the roles. I wonder if you think there is a problem now. More to the point, how should that be addressed? What can be done to correct that if in fact there is a problem?

Dr. Philip Belitsky: Keep in mind that when you are working in an intensive care situation, you have many competing factors on your mind.

Your first priority, your first concern, is to deal with the matter at hand: you have a critically ill person who needs all of your attention. You must focus your attention on that and direct all of your best endeavours towards doing what you can to achieve the recovery of that person. If that fails, there's a certain sense of failure, of exhaustion, of being overwhelmed by it, which you really never get used to. It's hard to walk away from, so it's easy to forget that maybe the person could be an organ donor. Also, some people involved in that kind of activity feel their responsibility ends with the death of the individual and transplantation is somebody else's responsibility.

You want to do whatever you can to alter that, but on the other hand, acknowledging that such a thing exists, you also need to have processes available by which you can accommodate it. You need to be able to say to somebody, “I know your feeling about this. Let's just agree to disagree on this, but let's agree on the following. Let's agree that if you have difficulty with this we will have somebody else step in at the appropriate time to deal with it, approach the family and carry on with the process of organ donation.” You need to have that in place. If you don't have it in place, organ donation does not occur.

What's interesting with the quality-assurance approach the Spaniards have taken is that they've learned that the biggest source of new donors since they introduced their system has been donors who would have been overlooked in the hospital if not for the existence of the hospital coordinator, whose job it is to identify potential organ donors every day. It's this gap that has accounted for the largest proportion of the increase.

So yes, we need to address those issues, but sometimes you need to acknowledge that there are just some people you can't change. They do such a good job at what they do that you can't fire them and you can't make that a condition of their employment. You need to have some other mechanism in place in order to be able to accommodate it. I hope I've answered your question.

Mr. Lynn Myers: You have, actually, and very well. Thank you. I appreciate that.

Mr. Chairman, I have a subsequent question, either for you, Doctor, or for Ms. Barker.

It seems to me that of the many things this committee can do in this process there is an awakening of awareness and an educational value in terms of broadening the perspective on this particular point and letting Canadians know that we think this is a very important issue. I was really interested in your point about the need, then, for effective public education and the awareness program.

I thought you made two very good points: first, it has to be sustained over time and, second, it has to be monitored for both performance and quality assurance. Could you speak to that? I think that's key in this whole discussion.

Ms. Elizabeth Barker: The issue of public awareness is a key one. Again, this is an area that the Kidney Foundation, for example, has been trying to put many of their efforts into. This committee could be invaluable in helping with that issue, in bringing it to the forefront of public consciousness and raising it to a national level of awareness.

Too, the issue about monitoring the effectiveness is key, because it has to be a sustained initiative, not just one that has an initial impact and then drops off. Sustaining that awareness and that initiative would be very effective.

Dr. Philip Belitsky: In some respects, you can approach this as a corporation would in trying to establish itself and develop and grow. A company would never think of trying to market its products by saying every once in a while, “Maybe we should let people know about this.” Companies do it in an ongoing and sustained way.

• 0955

At the same time, this kind of campaign is linked to a marketing campaign that takes place at the grassroots with their salespeople and representatives. It's linked to a production campaign so they can have their product on hand. It's linked to a distribution campaign so they know they can get their product out as quickly as possible to the new customers they're going to acquire. This has to go on all the time.

It's the same here. We know what to do, but it's never been put together. There has not been a coordinated, focused, sustained activity that deals with this issue and is accountable and evaluated regularly, and in which the people who are involved have their performance evaluated by output, that is, by what has happened to organ donation during their tenure of office. We've never had that. We need to have some kind of organized, coordinated, sustained thing.

This is why the Spanish model is so effective. There's nothing magic about the Spanish model. All they've done is put the whole thing together. That's all. They've had the wisdom to recognize that because of differences in different parts of their country they have to adapt to local circumstances and the best way to do that is to have some national coordination—not national regulation or national imposition, but national coordination—with all the legwork taking place at the local level, with coordination at that level, with coordination of the regional activities and with coordination of the whole at the national level in trying to identify where there are issues that need to be addressed, where holes need to be plugged, and how the whole process can be made better.

Therein, I think, lies the answer to having it coordinated and sustained.

Mr. Lynn Myers: Thank you very much.

The Chair: Mr. Thompson.

Mr. Greg Thompson (New Brunswick Southwest, PC): Thank you very much, Joseph. It's nice to be with you.

Is it Miss, Mrs. or Dr. Barker?

Ms. Elizabeth Barker: It's “Mrs.”.

Mr. Greg Thompson: Mrs. Barker, I'm impressed by your brief. I had a chance to read it last evening. My question goes to the relationship between the financial crisis in health care and that waiting list. On page 2, you go through the number of patients awaiting an organ transplant. I guess what you're saying in your brief is that part of it is a result of the lack of organs. Is that correct?

Ms. Elizabeth Barker: Yes.

Mr. Greg Thompson: Okay. Is there any relationship between that lack of organs and the health care financial crisis we're experiencing? The point I'm making is that because of the high tech there are very few institutions in Atlantic Canada where an organ transplant can take place. Is that right?

Ms. Elizabeth Barker: That's correct.

Mr. Greg Thompson: With regard to the critical mass of surgeons and whatnot required, if I'm correct, Halifax is the only place.

Ms. Elizabeth Barker: Yes.

Mr. Greg Thompson: So an organ transplant procedure is not possible in P.E.I., New Brunswick or Newfoundland.

Dr. Philip Belitsky: May I address that? We recognized that a long time ago and developed an Atlantic regional program so we provide the transplant services for Atlantic Canada. We structured it as a regional program so the policies and practices of our program are created in consultation with people who come from the other Atlantic provinces. We present ourselves as the funnel through which people come from the rest of Atlantic Canada to have their transplants and then go back to their communities.

We also, as a consequence of that, have continuing medical education activities, ongoing educational programs and ongoing consultations with doctors and the others who look after these people who have transplants and who need transplants in the other Atlantic provinces. We've tried as much as possible to make it a regional program.

• 1000

In order to carry out transplantation and do it in a cost-effective way, you need to have a critical mass of resources, services and skills available. The only way to make it worthwhile is to have a volume of transplants that makes the whole process cost effective so your cost for transplantation is as low as it can be. This is what we tried to achieve.

At one point, the province of New Brunswick had been interested in making a program, but when we discussed what would be involved in order to provide the outcomes that the public not only demands but should get, as they added up the figures it became apparent that it was cheaper to have the transplants done in Halifax rather than New Brunswick.

But this doesn't exclude people from New Brunswick from having transplants. Our donor pool is from the same catchment area as our transplant patient pool, so all the donors who arise in Atlantic Canada have the right of first refusal, so to speak, in Halifax. Again, we've tried to engender the idea that since the service is provided for the people from Atlantic Canada, they therefore have an obligation and responsibility to provide the organs to help their own citizens even though transplantation doesn't take place in the other provinces.

Mr. Greg Thompson: Thank you, Doctor.

Again, going back to that number on page 2 of Mrs. Barker's brief, you say, “By December 31, 1997, 3,072 patients were awaiting an organ transplant.” What is the system capable of handling? Is the number you're talking about there the number across Canada? Is that correct?

Ms. Elizabeth Barker: That's in the whole of Canada.

Mr. Greg Thompson: So what is the system capable of? In other words, if those 3,000 people suddenly show up on your doorstep, what sort of a situation are we then looking at? I'm going back to that relationship between the available organs and the ability to perform those procedures and whether or not we have the facilities to meet that need.

The Chair: Dr. Belitsky.

Dr. Philip Belitsky: We can accommodate everybody who needs a transplant.

There are almost no people in this country whose entire efforts are devoted to transplantation, because you don't do transplantation every day all day. You do transplantation when the organs are available. We'd welcome the opportunity to do more transplants for more people because the services and the facilities are there and, with the way in which we are able with contemporary technology and science to put people through, they can be accommodated.

The average length of stay in hospital for people who have a routine kidney transplant has dropped from two and a half weeks to five to six days in our centre. The throughput is there and they could be managed in the outpatient area or back in their communities.

So I don't believe that's an important issue. It's one that has to be addressed. We've been looking at it on an ongoing basis. We feel that across the country the demand can be accommodated if it can be satisfied.

Mr. Greg Thompson: Do I have another question, Joseph?

The Chair: I'll come back to you.

Mr. Greg Thompson: Thank you.

The Chair: Madam Caplan.

Ms. Elinor Caplan (Thornhill, Lib.): Thank you very much. I'm really pleased to have a chance. I have a lot of questions, so let me know how much time I have.

The Chair: You get the same time as everyone else. Then I'll come back to you.

Ms. Elinor Caplan: I've listened very carefully. I'm not familiar with the makeup of the Spanish model, but the fact that it is responsive to regional differences in the country is obviously very appealing.

Are you proposing within that model, for example, that each province could—and should, perhaps—have their own donor registry, if we could link them in some way, as long as it's a shared list across the country? Is that the proposal?

Dr. Philip Belitsky: No. I don't know if that specific question of yours can be answered. It really hasn't been studied. A donor registry, as I mentioned earlier, is one part of the whole and may help to bring the whole together. But it's one part of the whole, and if it turns out that for logistical, monetary or practical reasons a registry is best within a province, then so be it. If it's best within a region, then so be it. But it's not necessary to confine all of this.

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Ms. Elinor Caplan: Do you mean to be flexible—

Dr. Philip Belitsky: Exactly.

Ms. Elinor Caplan: —as long as they link together or you get a consensus on how it would work best in each part of the country?

Dr. Philip Belitsky: The two key words you mentioned were “flexible” and “consensus”. Given the interest and commitment of so many people in solving this problem, the flexibility and the consensus will not be difficult to obtain. It will take a lot of work and a lot of consultation, but it can be obtained.

When they began the Spanish system, they said they weren't sure how it was going to play out and they recognized it was going to be difficult. In some aspects, it was extremely difficult. Again, we can learn from their experience and derive benefit from that.

Ms. Elinor Caplan: What I'd like to have from you is whether you know what some of the barriers are. From the presentation and the work of your committee and the work across the country, it seems to me a lot of work has been done. Are there barriers to implementation? If you were recommending to this committee—other than talking to the Spaniards to see how they got started—what would you recommend as first steps towards implementation as opposed to just studying this until we're all exhausted from studying it?

Dr. Philip Belitsky: The first thing is to have a statement and a commitment that this is what should be done. Again, now wearing my hat as a private citizen who happens to have the opportunity to speak before this committee because of the position I hold as co-chair, I think the federal government has to say, “This is what we want to happen and we are establishing an entity, a group of people whose mandate it is to do the appropriate consultation, with a view to implementation.”

Ms. Elinor Caplan: That's not what your committee did.

Dr. Philip Belitsky: No. Our committee is in its infancy, just like you dealing with this is in its infancy. I would hope, as Elizabeth does, that we could work together on this and that we could benefit from your deliberations in terms of them helping us with our acquisition of information and knowledge and assigning responsibilities to different individuals.

Just to help you understand what our committee has done, as Elizabeth mentioned earlier, out of the 13 elements deemed to be important we've taken the four core elements we feel are most important to anything that will enhance organ donation and distribution. One is to look at what happens in hospitals. The second is to look at how these so-called organ procurement organizations function and how they should function. The third is how organs should be allocated. The fourth is how this could be tied together electronically, but we're holding the fourth in abeyance until we find out from the first three what they'd recommend as the important thing so we know what to ask the fourth to do.

With regard to the process by which this is being done, organizations have indicated that they have a special interest in each of the three items I mentioned earlier. With the consensus of our committee, we've asked them to make proposals as to how they're going to approach their component of it, how much it will cost and how they're going to function. We would then enter into a contract with them to achieve this and put together the recommendations in a final report.

Ms. Elizabeth Barker: I'd just like to add at this stage that the issue of the Spanish model will be put on the table at the next meeting of the coordinating committee. It hasn't had that full discussion yet. But I would say at the same time that the deliberations and the research of this committee, if you choose to look into the Spanish model further, would go a long way towards helping to advise our committee on the pros and cons. We would certainly, as a coordinating committee, benefit immensely from the wellspring of research this standing committee will be doing. With regard to any of the briefs, documentations and analysis you would like to share with our committee, we'd deeply appreciate that too.

Ms. Elinor Caplan: I think it's very important, Mr. Chair, that there's a desire in this committee to actually help make things happen. When we talked about doing this, it was not only to raise public consciousness but hopefully to see some implementation of a program that would be inclusive and would achieve the goals and objectives we all share.

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I would hope that this committee would decide, first, to do the research, and second, to share it, not only with the coordinating committee but in regard to being as helpful as we can in moving this agenda along.

Do I have any more time?

The Chair: Not now.

Madam Ur.

Mrs. Rose-Marie Ur (Lambton—Kent—Middlesex, Lib.): Thank you, Mr. Chair.

I thank you for your presentation. It was most interesting. I come from the London region and this certainly is a topic in the media in southwestern Ontario. I was reading background information on this in which the library material stated there was transplantation back in the sixth century and only now is it looked at as routine. Talk about a snail's pace. It gives new meaning to it. It's time to pick up the pace on this. I thank the department for that information. I found it quite interesting.

In other information, you said in regard to a 13-point approach that your committee does not endorse a formal national structure, that you would be not financially supportive of it. I understood that you feel each province should probably do its thing. How would we ever get anything national with each province doing its own thing?

Ms. Elizabeth Barker: I'd like to speak to that issue. That comment was based on some of the interviews with key stakeholders that were done for the 1996 report. One of the questions we asked was about putting in place a formal national committee. That research is from about 1995. Again, that is three or four years ago. Things may have changed since then. It may very well be that on the basis of strong evidence, such as whether the Spanish model does indeed prove that a strong central coordination works, public opinion or professional opinion may have altered in the last number of years.

But that was certainly from 1995 information. Like anything else, those assumptions are worth going back to, worth revisiting. In the process of continuous quality improvement, if you like, or continuous evaluation, we have to examine some of the things that were said to see whether they still obtain or whether there are better ways of doing business.

Mrs. Rose-Marie Ur: How long do we study and examine? This is really important. I think it's reflected in my first statement. We have to take for granted some of the research they've done with the Spanish document and, as the doctor said, with regard to donors in B.C. Once they have gone to all that effort and have documented it, how much longer do we have to weigh the pros and cons?

Ms. Elizabeth Barker: Not too much longer, I hope. I certainly think it's time for action.

Mrs. Rose-Marie Ur: Exactly. That's what I'm saying.

Ms. Elizabeth Barker: Certainly that's the message we're getting.

Mrs. Rose-Marie Ur: Right.

You mentioned B.C., but you never really went into what kind of system they have set up. You were quite impressed with what they had there. Could you expand on that, Doctor?

Dr. Philip Belitsky: I was in Vancouver last Monday and spent the afternoon with Bill Barabble, the CEO of British Columbia Transplant, which is a separate organization that is different from any transplant entity in this country. They've looked at the whole issue of organ donation and the various steps associated with it and attempted to systematically go through them, just as we've been discussing earlier, to try to integrate them, sustain them and monitor them in order to be able to continually fine-tune and develop the highest organ donation rate they possibly can. It doesn't happen overnight.

Again using the Spanish experience, they found that incrementally, but with significant increments each year, there was a progressive increase in organ donation. We have to watch how it unfolds. What we do have as our evidence that a systematic approach works is the experience in the place where it has happened.

We focused on what happened nationally because we're appearing before a national committee right now, a committee of the national government, but the same principles have prevailed and led to success in smaller organizations and jurisdictions wherever they have been applied.

• 1015

You can look at various areas of the United States where their organ procurement organizations, which are separate, free-standing entities committed to dealing with all the logistics and other aspects of organ donation allocation, etc., have adopted a systematic approach, have assigned people responsibilities and have followed through, monitored and continually modified. They have had outstanding success.

So whether it's on a national level, as in Spain, keeping in mind that they have a decentralized approach to it, not a mandated national approach, like “you must do this in Saskatoon” and “you must do that in Halifax”... It's how it is going to work best for you in those places. In Texas, Pennsylvania and Minnesota, in smaller jurisdictions where they've applied a systematic, integrated approach, it has worked marvellously. There have been dramatic increases in organ donation. In individual hospitals where they have looked at a systematic, monitored and sustained approach, they've had dramatic increases. So to make it happen, all it takes is the approach rather than the geography.

One of the questions that always comes up is, do we need to have a presumed consent law? Do we need a law that says everybody is deemed to be a donor unless they opt out? Will we, a priori, have high rates of organ donation? That has proved not to be the case. There are now only four countries in the world out of the 12 or 15 that introduced this legislation that still actually have it operative: Finland, Sweden, Portugal and Austria. In other countries where they have introduced it, they just don't use it because the population won't accept it. I wouldn't accept it, but that's my bias, you see. Yours may be different.

The prevailing sense and the prevailing opinion in countries where it has been introduced is that most of them don't use it. They still obtain family consent. Once you're going to do that, and if that's what people want, you need to have a system in place to deal with how to best identify donors, how to obtain family consent, etc.

The Chair: You've raised an interesting question. In our blue documentation, which I think all of us received, there's a risk management framework, which I think came from Health Canada.

I'm wondering, taking off from the point you've just made, about the current state of federal regulations in relation to organs and tissues. There are some in place for blood, for semen, for artificial insemination, etc., but would these be sufficient? And if they are, would that not make some of the recommendations we're anticipating from the Canadian Standards Association less relevant?

Dr. Philip Belitsky: I don't believe I have the information to answer that, but André does.

Mr. André LaPrairie: You want to know how the proposed standards would fit in with what they're looking at.

The Chair: Yes.

Mr. André LaPrairie: Currently, the standards are focused on the safety of organs and tissues for transplantation. They describe methods for the screening of donors, the tests that are applied, the quality assurance you put in place and the documents and records you keep.

The Chair: Are those in place provincially as well?

Mr. André LaPrairie: Not right now. These are proposed standards. Part of the plan is that we will reference them in the food and drug regulations. That would make them law. Then everyone will have to follow them, much as they do for blood and for what we have in place for semen-banking. The advantage of a standard, though, is that it can actually include other things that would not fit within the federal regulations. You could have a section on informed consent. Theoretically, there could be sections on the identification of donors and what hospitals may have to do.

• 1020

We would reference those sections in the food and drug regulations, but they would be national standards and provinces could use them to say to hospitals, “This is the national standard and you'll have to demonstrate you're in compliance.”

Or you could use the current accreditation system for hospitals through the CCHSA, the Canadian Council on Health Services Accreditation. That would then make it part of their process. When they review the hospital's performance they will say, “If there is a national standard saying you must have a committee in place to support organ and tissue donation then you should be auditing your deaths every year to see that you're not missing any donors.” Then the accreditation process could capture whether or not hospitals are in compliance.

The Chair: Just to sum up, is it your view or is it the general view that the standards would be much more effective than, say, regulations at the provincial and/or federal level?

Mr. André LaPrairie: Dennis will jump in if there's anything I miss.

One reason we like the standard is that a standard is easier to update, especially in areas of science. It also involves more stakeholder participation. It solves many of the problems that Krever noted in his report when he looked at the regulations in the Food and Drugs Act. They were unclear. They're written more for legal purposes than for the purpose of actually following them. For many reasons we think the standard is a better approach to take. Our role by referencing the standard means that we make law the parts that are important. Certainly the screening of donors to make sure that HIV screening is done, etc., is something that requires a level of law to cover it.

Another flexible part of the standard is that it can also include things that are not part of a food and drug act that focuses on the safety of a product, so it can deal with performance standards and can look at things outside the jurisdiction of the regulations. Again, there are positives to it.

If you wanted to make it a standard practice that every hospital identify all potential donors and refer them to a donor committee or if you say every hospital should have education in place to support its professionals so they can adequately approach families, that can be a standard. It doesn't require federal law to enforce it, but there are other methods already being used to make sure the hospitals are meeting national standards through the accreditation process. That would be the means to do it.

The Chair: Thank you.

Madam Wasylycia-Leis.

Ms. Judy Wasylycia-Leis (Winnipeg North Centre, NDP): Thank you, Mr. Chairperson.

I hope I'm not covering any ground that was already covered. I came in a bit late and I apologize. I did want to ask the question that I think has been raised at least in part this morning around the role of this committee on this issue of organ transplantation.

It seems to me that Parliament has played a role up to date in terms of recognizing that there's a problem and in the passage of Keith Martin's bill—at least in this committee. I think there's an acknowledgement everywhere that it's a serious concern. There's a national advisory committee, of which you two are the co-chairs, actively working with federal and provincial governments, and we have a very detailed strategy, a 13-point plan distributed to the committee last December.

My question is, what is the role of this committee? Is there a problem with this plan? Should we be rehashing this plan? Has it been thoroughly vetted? Is there more work we need to do on simply developing a plan? Or can we assume that this plan has been thoroughly vetted and discussed at federal-provincial levels and that in fact what's needed now is more action from this committee to put pressure on different levels of government? In terms of all of this, where do we fit in?

Dr. Philip Belitsky: The ultimate mandate of the committee Ms. Barker and I co-chair is to present a report with recommendations. The recommendations may be accepted all or in part. They may be rejected. They may be put on the shelf for some future date. We have no idea what will happen with this report.

• 1025

The report timeline was three years. We thought perhaps that was a little lengthy. We took it down to two years because there is some work that needs to be done. Unfortunately, if the report receives approval and if there is then an initiative to implement the report, it will take an additional few years to work out all the details and discussions and developing consensus and negotiations in order to make it function across the country. One could take that approach and allow that time to go by, and that may be the wish of your committee, or it may be the wish of your committee to recommend that the deliberations lead to implementation.

The Chair: Yes, there are varying points of view, Dr. Belitsky. If you decide you want to change careers, there's a good opportunity for you in the diplomatic service. We've become accustomed in this committee to asking the general public appearing before us about our own relevance and you've answered it very well.

Madam Wasylycia-Leis, continue, please.

Ms. Judy Wasylycia-Leis: I have some follow-up questions on your response. You didn't answer my question about the current state, then, of this strategy that is now at the federal-provincial level, this 13-point plan. Are there problems with it? Is this what you're starting with and then further refining in order to present recommendations? What's wrong with this plan? What should we be looking at?

Dr. Philip Belitsky: The strategies were a starting point. There has been nothing done about the strategies except to identify the four important ones and to initiate steps to have deliberations start on them and out of them have recommendations derive, from which ultimately a report with more general recommendations will be made to the organization that created the committee, the ACHS, the committee composed of the deputy ministers of of health of the federal, provincial and territorial governments.

Ms. Elizabeth Barker: I'd like to add to that. For three of the areas, there will be standards development. There has been some money assigned to enter into a relationship with the organizations to actually develop those standards. Those areas are where the contracts, if you like, or the contractual arrangements, are to be let. But once the standards have been developed—and the developing of standards is quite a process, as André can tell you—they then have to be applied provincially. Those are some specific tasks that will initially actually come out of this report.

There are a number of other areas, though, which need attention, such as raising the issue to a national profile, public attention, public awareness and professional education and awareness. There are a variety of other issues which ideally should occur concurrently but are not right now within the mandate of the committee to tackle, because the work involved in developing the standards and assisting those organizations to develop the standards is fairly time-consuming. André can speak to that, too, to the work involved in standards development.

The Chair: Thank you very much.

Mr. Elley.

Mr. Reed Elley (Nanaimo—Cowichan, Ref.): Thank you again for coming here and sharing with us this morning. This is not a purely academic topic to me. I have a little daughter who may need to have a kidney transplant in the near future, so it's certainly something that concerns me—as it does many Canadians.

However, our research people have given us a synopsis of the chronology of this particular issue in candid terms of committees having studied this, and it seems like a lot of different committees have studied this and there is a lot of good information available about it.

• 1030

In view of that fact—that we've had many people look at this issue over the years and we have a lot of good hard facts on it—what is the obstacle? What's the main obstacle here that we have to get over to get this thing working in Canada?

Dr. Philip Belitsky: The main obstacle has been that no one in a position of authority has ever taken the initiative to say, “This is a problem. It needs to be addressed. Let's address it. You do it.” That's the obstacle.

Mr. Reed Elley: By using the words “position of authority”, who are you zeroing in on?

Dr. Philip Belitsky: On the federal government at the national level, provincial governments at a regional level, health authorities at a even more regional level and hospitals at a very local level. All the initiative has come from the people involved in the field of transplantation.

Many meetings, conferences, and consensus conferences—endless—have been held. Looking out my hotel window, I see the convention centre here, which was the old railway station. The first consensus conference I ever attended on this subject was in that building, which has to have been 15 years ago. I was reflecting as we were having breakfast that not too much has changed in that time except for some local initiatives that have begun—some sustained, some fallen by the wayside—but there's been no driving impetus behind it. I'm not pointing a finger at anybody. I'm just saying that—

Mr. Reed Elley: It's all right. You can point fingers. We need to get to the bottom of this.

Dr. Philip Belitsky: —it's not anybody's fault. It just hasn't been considered important enough to take up on almost a uniform basis at the same time in many jurisdictions. But again, I think this committee can do wonders with its recommendations.

Mr. Reed Elley: And it shouldn't take too long.

Dr. Philip Belitsky: I wouldn't think so. I hope not.

Mr. Reed Elley: I hope not.

I have another question. You used the Spanish model in your presentation, Dr. Belitsky. Can you tell us anything more about the Spanish model and how they actually implemented this, anything that would go beyond simply the three levels of coordination? There must be more than that. Can you elaborate?

Dr. Philip Belitsky: Sure. First of all, they did it with some difficulty. It's not easy because of the diversity in their country. It won't be easy here because there are many constituencies that feel they have the answer as to how things should be done. They will want to have their own piece in it. It requires a lot of discussion and consultation.

But it needs to be recognized that all the real action takes place at a local level. You need to coordinate the thing up to different levels. One of the first things the Spanish recognized was that they had to be flexible, that they had to avoid a bureaucracy. As André described, once you have a bureaucracy you start imposing regulations. Regulations are not entirely appropriate here because you need to be able to adapt to change and it takes too long to change regulations. At the national level, they recognized that the national coordination would be for things common to all of the jurisdictions.

So at the national level, let's look at it to see if we can develop policies, for example, for implementing a national organ donor registry. How can we introduce national standards that might relate to using certain kinds of donors? What kind of research can we do in a simple way to help us make the system better?

The national coordinator is responsible and accountable to someone in the Department of Health nationally. At the regional level—which you could read as provincial as a start for us, but it doesn't have to be, again with regard to dealing with the flexibility—that regional coordinator is responsible to the equivalent of the minister or deputy minister of health in the provincial legislature, so you have horizontal accountability. At the hospital level, the coordinator is responsible to the medical director of the hospital.

• 1035

So you have horizontal accountability, which is easy to deal with on a day-to-day basis, but vertical coordination in terms of the kind of issues they deal with. At the regional or provincial level, it's easy to foresee that you have a group representing all the hospitals involved, where you can say, “What kinds of problems are you having? We had that problem and this is what we did to help it out and fix it.” You have this kind of collaboration.

The representation at the national level is from each of the regions, but it's not a bureaucracy. When you read their book, you see that they describe the difficulty they had trying to arrive at a name for these people. They called them coordinators because that has the magnificence of ambiguity. They're not directors and individually they don't have a lot of authority, but they help to make the thing work because of how they've put it together.

What I found most useful, as did my colleagues, was a booklet they put out describing their trials and tribulations, their principles, the issues they dealt with, how they went about it, how they organized it, how they changed over time and how they modified. It's not magical. I'm not suggesting we do exactly what they did. What I'm suggesting is that by taking an approach that is systematic, integrated and continuous and has some kind of structure to it, it's possible to achieve what they did. It's all evidence based.

Mr. Reed Elley: I think Mrs. Barker wants to speak.

Ms. Elizabeth Barker: The other issue, too, that accompanied the Spanish model was a sustained, ongoing marketing strategy about the issues for the general public. They've marketed it outside the country. The Spaniards are very proud of where they've come from. They speak at international conferences as well. They're sustaining the momentum and the pride in what they're doing. That, I think, feeds on itself and shows in the results.

Mr. Reed Elley: Mr. Chairman, would it be possible for each member of the committee to secure a copy of the Spanish book about which Dr. Belitsky is talking? We might see if that's available. I think it would be very helpful for us. If it's as helpful as it was to you, it should be to us too. Thank you very much.

The Chair: The only problem we might have is that it's in one language only.

Mr. Reed Elley: Is it just in Spanish?

The Chair: No, in English.

Ms. Elizabeth Barker: It may be in other languages. We don't know. This is multinational.

Mr. Reed Elley: I'm sure it must be in French.

The Chair: We'll make it available in whatever language we can find it if committee members accept it the way it is. I think we're looking at something like that, Madam.

Dr. Philip Belitsky: Given what Elizabeth has said about how they have been talking about this internationally, I would suggest that if they have a book in English they would also have one in French—

Mr. Reed Elley: I'm sure.

Dr. Philip Belitsky: —and in German and so on. A telephone call to their organization should allow that to be received very quickly.

The Chair: We'll take your question as a suggestion, Mr. Elley. Our staff will look into seeing if we can get the appropriate copies for members.

Mr. Reed Elley: Thank you.

The Chair: Thank you very much for those very pointed questions.

Madam Redman, your inaugural question in the committee.

Mrs. Karen Redman (Kitchener Centre, Lib.): Thank you, Mr. Chairman. I'm really pleased to be here. I am new and I haven't read the 13-point strategy, but I find all of this really fascinating.

Ms. Barker, you actually answered one of my questions, which was about the comprehensive marketing strategy. I would say that despite the best structures or process we need people to sign those cards.

Have you looked at models other than the Spanish model? It strikes me that's one you obviously feel is analogous to our situation. Have we looked at other components of different models?

Ms. Elizabeth Barker: Not recently. The book on the Spanish model has just recently come to our attention, which is why we're very enthused. It seems to be the international model that is outstanding in terms of sustaining results and is very similar in its development; where they were is where Canada seems to be today. I think those similarities are what made us look at it more closely.

The Chair: Dr. Belitsky.

Dr. Philip Belitsky: I'm going to overstate the case just a little, not a lot. There is no other model.

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There are many organizations that exist regionally, nationally and internationally in Canada and elsewhere. In Canada, there are Quebec Transplant, MORE, British Columbia Transplant Society and what we have done. Internationally, there's UNOS in the United States, Eurotransplant, which bridges half a dozen countries, Scandia Transplant, which bridges all the Scandinavian countries, France Transplant, etc.

All of these organizations originated to deal not with organ donation and procurement but with organ distribution and organ allocation. It's important to remember that if you're going to be dealing with or consulting those organizations. That was their mandate. As almost an addendum to that mandate, they were also to “deal with the promotion of organ donation”, but it wasn't their mandate.

You will find no organization that is solely responsible for organ donation. However, if you were to go to individual smaller organizations like Life Gift Organ Donation Centre in Texas or the equivalent organization in Pennsylvania, or if you were to go to The Partnership for Organ Donation, a non-profit organization in the United States out of Boston that has assisted and helped many smaller institutions like hospitals or procurement agencies, in everything they recommend the thread running through it all is the integrated system that's coordinated and sustained.

Mrs. Karen Redman: Probably for my own edification as much as anything, is part of your mandate to look at what is working in Canada? It strikes me that although we're not where we want to go, we have seen some growth. Is that part of what you're looking at, at what exists now? I'm thinking of the non-government health organizations that are probably more on the cutting edge than government is right now.

Ms. Elizabeth Barker: Yes, which again, I think, is reflected in the membership of our committee. We have non-government people. There's some very good work being done out there by organizations such as the transplantation society and the Canadian Association of Transplantation. The Kidney Foundation is a leader in this. So the answer is yes, and again looking at models, it would be integrating and building on what's being done. That, too, is one of the key underlying principles with the Spanish model.

Dr. Philip Belitsky: I have two things to say. One, everything Elizabeth says is right, but none of these are sustained, integrated, organized and coordinated. Also, when we have asked organizations that have been taking the responsibility for dealing with the items of the 13 strategies we deemed important, we've asked them to start with an absolute clean slate.

Before you do anything, make sure you find out what there is out there in the world—which includes our world—and make sure everything you're going to recommend is as evidence based as possible. They will be looking at whatever has been reported and published and about which they know personally. Hopefully that will work.

Mrs. Karen Redman: I have just one last question. Has it been part of your mandate to look at or has anybody with your organization looked at the presence of this in the training of health care providers to make sure this is an issue that's taught with some kind of...more than three hours of nutrition, which is what some medical people get?

Dr. Philip Belitsky: Hopefully that will come up in the recommendations.

Mrs. Karen Redman: Do we know what's happening now? Is somebody looking at that?

Dr. Philip Belitsky: It varies. No one is looking specifically at it, but it will be part of what they will be looking at. It varies from place to place across the country.

The Chair: Dr. Martin.

Mr. Keith Martin: I have two quick questions and one comment.

Thank you very much for emphasizing both the point of action and illustrating that against the backdrop of the repeated studies and repeated agreements that have gone on before this for at least 15 years, Dr. Belitsky, as you mentioned, and the fact that the need is there. In fact, as we look in our crystal ball towards the future with the hepatitis C crisis and the need for livers and an increasing incidence of diabetes and the need for new kidneys, that is going to become even more urgent in the very near future, along with the financial incentive to actually increase the number of transplants because of the cost savings.

I have two quick questions. One, in the Spanish model coordination was part of it, but in Spain they did a number of other things. Perhaps one or both of you would like to quickly express some of the things Spain did beyond the three levels of coordination they employed.

• 1045

Also, as Ms. Redman mentioned, in Canada we've done some very good things. In the province of Quebec, I believe they have reimbursed the hospitals when they procured organs. Once they reimbursed hospitals for the costs incurred in procuring those organs, the level of the number of organs available jumped quite substantially. Perhaps you could expand upon that.

Dr. Philip Belitsky: I'll deal with the latter first. There was a coincident increase in organ donation. It was short-lived and not sustained. The question has arisen as to whether the decision to reimburse hospitals with a very modest amount of money for their efforts to cover the cost of maintaining donors actually played any role at all in the burst of short-lived activity.

This is what we see: there is no predictability to organ donation. Every time we see an increase in organ donation we think it's something we did, but then it falls off and we wonder why. I sound like a broken record, but I can't emphasize this enough: everything we've heard today reinforces the need for a coordinated, integrated and sustained approach at all levels. It doesn't matter whether it's a Spanish model or somebody else's model or our model or your model. The integration and coordination and sustained nature of it make it work. Then you look at the different components, fix up each component and make each component work better all the time. That's what makes it work.

It sounds like you could probably better inform the committee about the other aspects of the Spanish model, unless we missed some other aspects of it.

Mr. Keith Martin: Thank you.

Ms. Elizabeth Barker: In the current environment, where the provinces' health care dollars are extremely stressed and under a great deal of pressure, I would suggest respectfully to be mindful of anything that would put additional pressures on provincial coffers for development of infrastructure or any of those issues. That would certainly be a consideration for the provinces.

The Chair: Judy Wasylycia-Leis, and then I'll finish off with Elinor Caplan.

Ms. Judy Wasylycia-Leis: Thank you, Mr. Chairperson.

I'd like to go back to an issue the chairperson touched on, which is the question of the regulatory framework around which organs and donations are regulated. Were you consulted with respect to the paper entitled, Proposed Risk Management Framework to Address the Safety of Tissues and Organs for Transplantation in Canada? Or has that been referred to you for your critique and input?

Mr. André LaPrairie: I can probably answer that one. The document was originally provided to the Advisory Committee on Health Services for comments. Also, when we had a preliminary meeting of this national coordinating committee it was made available at that time. The members had an opportunity to see it and to basically look at it as part of the foundation of the work they're doing.

In other words, if you're going to have sharing of organs between provinces, if you're going to entertain any of these other activities the national coordinating committee is looking at, the first thing you need to have is standards for the screening of donors and the record-keeping, etc., that go along with it. That was the purpose of the document.

Dr. Philip Belitsky: That initiative antedated and was separate from the creation of our committee.

Ms. Judy Wasylycia-Leis: So my question still holds: are you now looking at this document as part of all of your deliberations, since it seems that this paper actually recommends a significant shift from a precautionary approach with respect to organs and transplants to a risk management model that raises a lot of red flags? I'm wondering to what extent you will be involved in giving opinions on this approach and how it factors into the work you are doing on behalf of this national coordinating committee.

Dr. Philip Belitsky: The creation of that document was a good example of a partnership between government and health professionals. The people participating in its creation are people who are held in the highest regard and are respected by everybody in the transplantation community.

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We'll be looking at it, but as a means of integrating it into a broader organ and tissue schema rather than looking at it in any fine detail.

The Chair: Thank you.

Madam Caplan.

Ms. Elinor Caplan: I still have a lot of questions. The presentation has been—

The Chair: There's a minute—

Ms. Elinor Caplan: Can I have the extra minute?

The Chair: —but Madam Wasylycia-Leis wants it.

Ms. Elinor Caplan: Actually, there is a follow-up question in regard to you referring to Mr. Martin and the points you were making. No matter what the approach is, I think you left the accountability portion out of the essential components. You had integration and coordination, but in my view, based on past experience, we've often left out the accountability, which hopefully will be part of a quality assurance and continuous improvement model you referred to before.

We know there are some examples in this country. You mentioned B.C., which you say is something we should be looking at because it is working well. That's a regional approach. Also, I have some past history and experience with the establishment of the Multiple Organ Retrieval Exchange program in Ontario. All of the information I have indicates it is not working well. I look at it in a continuous improvement mode and say, “What can we learn from that well-intentioned initiative?”

It disappoints me that it isn't working well because often what has happened in the past... I'm going to give you back your words. You said that we should say “this is what we want to do, this is the priority and let us do it”, but unless accountability is built in how do we then know what we're going to have will achieve the objectives we all wanted to achieve? What can we learn from how we have done things in the past or how others are doing things so we can build in the appropriate accountability? Again, this is accountability to Canadians in every part of this country.

The issues I also found interesting were some of the issues around “if you give the hospitals some money, maybe they will do this”. I see this as a values issue. That is, we have the technology and the ability to provide people with this service. It is a very cost-effective service. Certainly, kidney transplants not only save lives; those people go back to work and live healthy productive lives, whereas the cost of maintenance on dialysis and the quality of life and all of that... There's no question that transplantation should be a priority.

How do we instill those values and create that kind of culture? You've told us that a few dollars here and there isn't going to do it, that it's about getting people to understand they have a role to play, to be accountable. I heard you say that. What's your advice to this committee about our recommendations to ensure that whatever we set up has those values and that culture?

Dr. Philip Belitsky: Say it. If you say it, it will be created that way. The issue of accountability is obviously very important. As I mentioned earlier, there are very few people in this country, if any, whose job evaluation depends upon maintaining a certain level of organ donation. That's certainly one level of accountability.

There is also accountability to the public. I think we not only have to be accountable, we have to be totally transparent in what we do. We have to be able to stand up and say we are part of this system and we are very proud of what we do.

When I was going to visit hospitals in smaller communities to try to promote the organ donation systems within their hospitals, the staff would ask me what would happen if they're doing a retrieval in the middle of the night and the cleaner calls the local radio station and says, “Do you know what they're doing in this hospital?” The answer is easy. Once you have your system set up, you go to the media. You call a press conference and say, “We are part of this system and we're proud of it. This is what we're going to do for you and for the people in our community who need to have transplants.”

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You need that accountability, that transparency and that sense of pride—and success breeds success. We've seen this everywhere. As the system proves successful, it will breed its own success. In British Columbia they've made a start. How will it turn out? I don't know. At least they've made a start towards trying to make an integrated, coordinated and sustained effort, with accountability.

Ms. Elinor Caplan: What's a realistic timeline for starting implementation? I heard something that distressed me, which was, “you're just beginning”, whereas we've been presented with a 13-point strategy. You say that's just the beginning. A number of us around the table were hopeful that maybe we could see implementation shortly after the committee finished its work. What's realistic as far as a timeline goes for implementation of a program that will give Canadians greater access to donations and a greater number of donors and achieve the kind of system that... I'm not talking about completion. I'm talking about beginning a national campaign.

Dr. Philip Belitsky: Our committee's sole mandate is to produce a report. It is not our mandate to implement anything.

Ms. Elinor Caplan: Three years from now?

Dr. Philip Belitsky: Yes, two or three years from now to present a report... If you were to ask me, I'd like to start tomorrow, but in implementing anything like this we need to remember that it's always an evolution. You never have it just right. You never have it exactly the way you want it. You're always working it through.

How long will it take to complete? There's no answer to that. How long will it take to start the process moving once it is initiated? It'll probably happen very quickly because there are people who are very motivated to participate.

Also, you've all had this experience: once you begin to look at something you find parallel activities going on while you're doing your work in trying to deal with it. Hopefully by the time you reach a point where you have a report it's no longer necessary because everybody has been working at it to make it work right. I don't know whether that will be the case with our committee. I'd like to be able to believe that. I see parallel endeavours in different parts of the country and I hope they are able to be very effective as time goes on.

Ms. Elinor Caplan: I have one little question.

The Chair: I thought it would be great to end with such a positive response.

Ms. Elinor Caplan: It's one little one, and that is, would your committee be insulted if this committee recommended that it actually become an implementation committee as opposed to a committee producing a report in two or three years?

Dr. Philip Belitsky: I don't see it, but you never know what kind of response you'll get.

The Chair: Madam Barker, Dr. Belitsky, Monsieur LaPrairie and Monsieur Brodie, thank you very much for your patience. We started late. You were diligent in your responses—I sound like I'm giving you a report card—and I thank you very much for the time you've given us and for the responses you have provided. I'm sure they will be helpful.

We're going to break for five minutes, committee members, and then we're going in camera.

[Proceedings continue in camera]