HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Thursday, March 18, 1999

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[English]

The Chair (Mr. Joseph Volpe (Eglinton—Lawrence, Lib.)): Pursuant to Standing Order 108(2), we will resume our study on the state of organ and tissue donations in Canada.

This morning we have, again, two panels. On one panel are some people we have seen in the past. We have from the M.O.R.E. Program of Ontario, Mr. Gary Cooper, who is the executive director and a fine upstanding citizen and constituent of Eglinton—Lawrence. Some of you may have heard about that place. We also have Ms. Daria Parsons, who is the manager of Clinical Data Services from the Canadian Institute for Health Information. Good morning to you. From The Mutual Group, the president and chief executive officer, Mr. Robert Astley, is accompanied by staff and other members from The Mutual Group.

I'm going to start, but not because I'm prejudiced or because I want to show favouritism, with Mr. Gary Cooper and the M.O.R.E. Program of Ontario.

Mr. Cooper, I know you're familiar with the process, but let me just clarify it for everybody else. Please present a five-minute statement, more or less, and then after the three of you are finished, we're going to go to members on both sides of the table. Please don't be intimidated by the numbers around the table. They'll come and go over the course of the morning, as they are buffeted to and fro by their respective whips.

Mr. Cooper.

Mr. Gary Cooper (Executive Director, M.O.R.E. Program of Ontario): Thank you very much, Mr. Chairman.

I'm not sure it's a privilege to go first on a presentation like this, but I shall try to get through it in five minutes, and I'll read my comments, if I may.

First, I'd like to thank you for inviting me to appear before the committee to make additional comments on behalf of M.O.R.E., which is the Multiple Organ Retrieval and Exchange Program of Ontario.

I won't reiterate the aims of objectives of M.O.R.E. because we described them to you on February 11 when Graham Scott presented, except maybe to emphasize that our primary mandate is to increase the donation rate and to ensure fair and equitable allocation of organs in Ontario.

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As one of only a few Canadian jurisdictions with an automated allocation database system, M.O.R.E. can be used as a model for other provinces and indeed as a starting point for the design of a national waiting list, in which this committee expressed interest last time we appeared.

The M.O.R.E. Program believes we require a national clinical symposium to standardize definitions, data capture, and outcomes requirements to make such a system truly efficient. This symposium should provide the transplant community with an incentive to develop guidelines and preclude future unilateral design of data collection and information systems.

We believe that bodies such as CIHI and CORR should work with the provinces to build a uniform information system infrastructure, much like that under continual development by UNOS, or the United Network for Organ Sharing in the U.S.

There currently is under development a major document on Canadian general standard and safety of organs and tissues for transplantation that will require support and monitoring of compliance. The M.O.R.E. Program in Ontario does have a platform that could serve this endeavour, and it could be built upon, obviously, by the national groups that are available. But we would require significant collaboration, which I think everyone is encouraging here, and financial support.

In fact the M.O.R.E. Program does not have a system that is fully up to date with the latest developments in transplantation, I'm reluctant to say. It's not because of lack of capacity or expertise, but because of financial resources. For instance, we do not handle living related kidneys, and this is the fastest-growing answer to cadaveric kidney shortage in Canada. Nor do we accommodate data for multi-organ or split liver transplants in our current evolutionary system—two more fairly significant developments in recent years that we should be catching.

We also require more resources to provide the growing demand of researchers and clinicians with a long view of graft survival.

As M.O.R.E. commented to you on February 11, and virtually every other presenter before and after M.O.R.E., only a small percentage of potential donors is being identified in Canada. No one knows for sure how many of these are really missed in Ontario and Canada each year, but we know some jurisdictions are identifying more than twice as many per capita as we do in this country, and even they believe potential is considerably greater.

In order to increase our numbers, we require additional resources to study hospital medical records to determine the degree of the problem and establish reasons. The next step is to build on our hospital development programs to address these problems, with a combination of education incentives and guidelines and regulations, much of which you've heard many times before.

The M.O.R.E. Program is currently collaborating with a major metropolitan trauma hospital in Toronto. This is to establish a model program that we hope can be extended across Ontario, but without additional funds it will be very difficult to build on the project's anticipated successes.

The model in question is based on a combination of recently proven programs in Spain and Texas. I understand you're going to be hearing from people from Spain next week and you'll get more insight into what this entails.

Neither of the programs that we are basing ours on has been developed with restricted funding such as organ donation currently is experiencing in Canada. We can't stand by while waiting lists grow incrementally and cadaveric donor rates stand still.

There's no quick fix or single action that will increase organ donation rates in Canada. Canada needs funding to maintain a sustained effort to promote donation awareness in the hospitals, among the professionals, as well as in the public arena.

Most important, we need full-time professionals who are properly trained and supported on the front lines of organ donation.

Again, I refer you to the Spanish model that will be explained, and that has been in the past, but probably will be more clearly when the people come to you next week.

When asked to comment on costs associated with organ donation it's difficult to avoid reference to human anxiety and suffering. People still die on the organ transplant waiting lists in 1999. People waiting for organs do wait much longer than they did 10 years ago, and we know the situation could improve if all the potential resources were tapped.

This committee has heard many times during the last weeks that the estimated cost of dialysis, for instance, is about $50,000 a patient a year. In 1998 the average waiting for a kidney transplant patient in that year was 875 days, or 2.3 years, a low number for some people who have been on for four or five years. This would equal about $130,000 spent on dialysis during that wait alone.

Of course the saving reflected by a transplant is not real, because as soon as the dialysis place is vacated, there is another patient waiting to fill that same space and therefore the cost is the same to the system. What it does mean, however, is that another person is able to be dialyzed without the expense of creating an additional new place. Therefore this does remain a compelling economic argument for full capacity transplantation, notwithstanding the life-saving and quality-of-life benefits to be realized.

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The economic benefit is clear, but the human cost associated with death on the waiting list or a failure even to be listed borders on negligence in a health care system that fails to adequately fund a life-giving treatment that is cost-justified in every respect.

While practitioners in each of the organ groups currently meet at the provincial and national levels to approve mutually accepted allocation algorithms, which in themselves are not without flaws, there are wide variations and standards for listing waiting patients. In a system that depends for fair allocation on a variety of conditions that range through blood type, degree of sickness, and length of time on the waiting list, listing standards and a method of monitoring and confirming them are absolutely essential. Currently, waiting lists vary significantly from one transplant region to another, often in similar catchment areas with drastically similar demographic statistics, largely because listing criteria are different in each centre.

National conferences continue to work toward forming allocation rules, but more effort should be devoted to deriving uniform listing standards for patients waiting for transplants. With a critical shortage of organ supply, there must be irrefutable assurance that access to the system is fair for all. A centrally coordinated system to house and monitor listing criteria with professional committee support would offer that assurance. Indeed, coordination goes beyond creating uniform waiting lists and linking them with electronic allocation systems. We must coordinate the administration of organ donation as well. There are many systems that will tell you and have been telling you how this can be done efficiently, and you're going to hear more about that again next week.

A donor rate of greater than 30 per million population is possible, we believe—and I think most of the people in the field do. In Canada, we have the knowledge and experience to make that happen. What's been lacking is a cohesive effort among governments and transplant professionals—not in any particular order—to implement the many recommendations that have been proven in other parts of the world. I am happy to say, however, that I think transplant professionals are working more closely than ever before, and are dedicating more of their time than ever before, to make time on the waiting list as short a possible for thousands of Canadians who need or will need an organ transplant.

To conclude, I'd like to quote some senior spokespeople at a national conference I attended recently. I think we all agreed when they said: we support a comprehensive, integrated, and sustained transplant program in Canada, which is necessary to address this very serious public health issue as we approach the 21st century.

Thank you for your attention and for hearing us again.

The Chair: Mr. Cooper, thank you very much. You are precise. You were right on that five minutes. It reminds me of sporting events. They're always on time too.

Ms. Daria Parsons, from the Canadian Institute for Health Information. The microphone is yours.

Ms. Daria Parsons (Manager, Clinical Data Services, Canadian Institute for Health Information): Thank you.

The Canadian Institute for Health Information was formed in 1994. CIHI is a non-partisan, not-for-profit organization mandated by Canada's health ministers to coordinate the development of a national health information system for Canada. To this end, CIHI provides timely and accurate health information needed to establish sound health policies and effectively manage the health care system. Strong privacy principles and safeguards for the confidentiality and security of personal health information guide all CIHI activities.

The Canadian Organ Replacement Register is a program at CIHI. It's a national database that records and reports the level of activity and outcomes of vital organ transplantation and renal dialysis activities. The register provides statistics that monitor long-term trends for organ transplantation, organ donation, and dialysis activity, and makes comparative data available to facilitate better treatment decisions.

CORR is overseen by a board of directors whose members include physicians and representatives from the Canadian Society of Transplantation and the Canadian Society of Nephrology. An advisory committee is also responsible for data collection, analysis, and establishment of priorities.

I wanted to describe a little bit about CORR, the Canadian Organ Replacement Register. We receive data from 28 transplant hospitals for the transplant data. The waiting lists and donor data come from six provincial organ procurement organizations and two regional OPOs. The data collection is not mandatory. We retrospectively report on all solid organ transplants, all actual donors, and waiting list information. In our annual report, we describe provincial and national organ donation transplantation, dialysis, and waiting list statistics.

The majority of organ donors are multi-organ donors. Forty-eight percent of organ donors die from intracranial event, while thirty-two percent die from trauma, which includes motor vehicle collisions and gunshot wounds. We know the average age of donors is increased from 34 to 37 years over time.

You've heard repeatedly over the past six weeks that Canada's organ donation rate does not compare favourably to that of other developed countries. We know Spain had an organ donor rate of 29 per million in 1997 and over 30 per million in 1998. Canada's donation rate for 1997 was 14.4 per million.

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The number of people waiting for an organ transplant has increased from just over 1,800 to almost 3,500, according to statistics available as of September 1998. We know 81% of these people are waiting for a kidney and 8% are waiting for a liver, while 4% are waiting for a heart or lung. Overall transplant activity has increased by 40% over the previous decade. In 1997 there were almost 1,600 organ transplants done, 62% of which were kidneys and 22% of which were livers.

Of the recommendations that CIHI would like to make to the standing committee, the first one has to do with national donor identification. Again, this has been presented repeatedly. A true picture of the actual number of potential donors is not available from existing data in Canada. Based on organ donation rates in other countries, such as Austria and Spain, an organ donation rate that approaches forty donors per million appears possible.

The following steps would facilitate an increase in organ donation in Canada. An accurate reporting and analysis of deaths in Canada would provide information on the number of potential donor. A required referral of all potential donor deaths to organ procurement agencies would allow for the identification of all potential donors and could therefore facilitate the identification of barriers to organ donation that must be overcome. A centre-specific reporting system would facilitate donor activities by providing benchmarking of best practices, and a system of local follow-up with health care workers to review missed donors would complete the process.

The second and third recommendations are national real-time waiting lists for recipients in order to facilitate timely organ sharing and a national real-time donor registry to facilitate matching organs to recipients.

In summary, the Canadian Institute for Health Information supports these recommendations and will collaborate with lead organizations on initiatives identified by the Standing Committee on Health to improve organ donation in Canada.

Thank you.

The Chair: I'm tempted to say that was brilliant, because you ended off by engaging the general public in an acceptance of the role of this committee. That's kind of personal on my part, so thanks a lot.

Let's go to Mr. Robert Astley, from The Mutual Group.

Mr. Robert M. Astley (President and Chief Executive Officer, The Mutual Group): Thank you, Mr. Chairman and members of the committee. With me today is a colleague, Ms. Annie Côté-Kennedy, who is director of communications. Annie is responsible for our corporate social responsibility activities in Canada and is also a member of the Links to Success committee, which I believe you heard about in previous testimony.

I'm very pleased to have the opportunity to outline our vision for the next step in increasing the rate of organ donation. It's a cause we believe in, and that our staff and our agents across the country believe in. We're confident we can help to create significant improvements in this health care issue. I'm here today to reaffirm our commitment and also to stress the urgent need for a coordinated national approach led by the federal government.

The Mutual Group's involvement in organ donation has several components. We've worked to build awareness and to address the misunderstandings that undermine the organ donation process. We've also demonstrated our commitment by supporting transplantation-related research studies in hospitals and by working with partners such as the Kidney Foundation of Canada and the Canadian Association of Transplantation.

After several years as a major supporter, as demonstrated by our investment of more than $3.5 million since 1992, we are dismayed, just as others are, to find that there is a growing shortage of available organs. Since 1991, the waiting list for transplantation has increased by 68%, but the organ donation rate has increased by only 6%. As Ms. Parsons has indicated, more than 3,000 Canadians are waiting for organs right now.

The reason for the growing gap between need and availability is not primarily a refusal to give. On the contrary, our research shows that 77% of Canadians are willing to give if they are asked. Despite our efforts to promote organ donation and to support groups in the organ transplantation community, we estimate that less than half of the potential donor families are ever given the opportunity to say yes.

Although we believe we have succeeded in sensitizing many Canadians to the need for organ donation, our investment has not resulted in sufficient action so far. We are frustrated too by the barriers to successfully increasing the rate of organ donation. For instance, there is no widespread, easily accessible source of information about the potential organ donor population. There's little incentive for hospitals to become involved. Health care providers are reluctant to approach the families of potential donors and they're not familiar with the process for referring a potential donor.

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But the most significant barrier to success is the absence of a cohesive national strategy under the leadership of a strong central body. The current system of uncoordinated efforts and organizations across different provincial jurisdictions is not generating the increase in organ donation that our health care system needs.

The Mutual Group has a substantial stake in the success of Canada's organ donation system. Every year we are contacted by numerous organizations involved in this cause. We want to ensure our investment in this vital health care issue is making a difference. We want a recognized national strategy that will guide us in deciding which initiatives to support on the route to achieving broad national goals.

We're prepared to continue our involvement through financial contributions and the efforts of our staff and sales force, but it's time for us to reassess how our support can make the greatest impact.

As I said, we believe the solution lies in a national strategy with well-defined goals and accountabilities led by one organization with a clear mandate and the resources to ensure improvements are made. We have experience with the cause of organ donation and a respected position in the circle of partners directly involved in this work.

Through the 3,000 members of our sales force, we also have a network that reaches Canadians in communities from coast to coast. We want to be an active partner in this national program, not just an organization that writes cheques.

However, we believe that only the federal government is in a position to take the lead in creating a nationwide system that would benefit us all. We urge you, as a committee, to develop a national strategy that sets out clear expectations and responsibilities, supported by an infrastructure that is adequately funded and integrated into the existing provincial health care systems.

Help us make sure that the families of potential donors are asked, and that when they agree, someone benefits from this gift.

Thank you.

The Chair: Thank you, Mr. Astley. You were very quick and to the point; dare I say blunt. Thank you.

I'll go to Mr. Martin first.

Mr. Keith Martin (Esquimalt—Juan de Fuca, Ref.): Thank you very much Mr. Chair. I thank all of you for coming today to give us your words of wisdom. Especially, Ms. Parsons, I want to thank your organization for providing my office with a lot of very important information that has helped us to work on this issue for some time.

I have a couple of questions. Mr. Cooper, you mentioned the issue of donor awareness. There's a lot of evidence to suggest that more than 80% of the Canadian public—I think it's in the low nineties—actually support organ donation. If we look at British Columbia, with the amount of money that's poured into organ donor awareness—and it's significant—you often see advertisements to be an organ donor. Yet, when we look at the bottom line, their organ transplant rates are 12 per million, and they've been doing this for some time.

I would submit to you that the reason this is so is that we do not marry the advertisement with the opportunity to put an X by the spot to be an organ donor. In other words, they're not both sitting there side by side. So I would like your opinion on how we can do that.

Mr. Astley, you eloquently lamented the fact that despite the good efforts you've made and the money your organization has put in—in the order of $3 million plus—you're frustrated by the fact that you haven't seen an increase in the number of donors. Perhaps you can reflect on the same question I'm asking Mr. Cooper. Thank you.

Mr. Gary Cooper: Thank you, Mr. Martin. I think the issue is very much as you state, and I think B.C.'s attitude toward registration is a very positive one in that one of the advantages of the registration system they have is that there's continual awareness associated with it. People are being talked to about donation; they're being asked to sign a card, or a facsimile of a card, if you like, a registration form that sticks with them, and there's accompanying TV and radio advertising, and so on.

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One of the concerns I have about that, of course, is the cost. It's an incredibly expensive system. I've been very supportive of what they're doing from the beginning, mostly because it has a huge awareness factor tied to it and it's a continual awareness factor. Organ donor awareness week is something that this government should be very proud of establishing on a national basis, but I think we need a 52-week awareness program. I think organ donor awareness week sits to establish a pattern that needs to be continued.

Just getting back to the registration and the awareness, I think the awareness that's associated with registration could be equally easily done with respect to the issuing of health cards, which is done by every province. Many provinces are doing it to a degree, and everybody is contacted by the province on a fairly regular basis. If there was a link perhaps between the health card and the B.C. registration system, fine, but I do think there should be something done on a national basis, so that awareness and donor acceptance, or acceptance of donor responsibility, are tied in. I think that is absolutely essential.

I think professional awareness is another thing we should be addressing with some vigour.

Mr. Robert Astley: You're absolutely right that the willingness of Canadians to agree to organ donation when they are asked and when the discussion has taken place is indeed quite high. We believe that awareness building should continue. It would be easy for that to drift away. That's the one aspect, the potential organ donor population and their families.

This is a very complex issue that involves health professionals, the infrastructure, and cross-provincial border issues. It may very well be that the greatest lack of awareness is in some of the front-line medical staff, who are under tremendous pressures and who may not have the information or the skills to recognize when donor-potential events have occurred, or have the training to approach donor families who are in a time of considerable personal crisis. So there are many aspects to the communication. General public awareness is one, but there are other aspects, particularly as we see it, within the medical community.

Mr. Keith Martin: Do I have any time left?

Thank you for your answers.

While I don't disagree with the need for extra training in the medical community, I would suggest that's not a primary problem. We engage in some very, very sensitive discussions with our patients. Telling a family they have just lost their two children in a traumatic car accident is one of the most painful things I've had to do, and many of my colleagues do the same thing.

Asking a family to donate the organs of the deceased loved one is something we already do, just because it's congruent with a lot of the training we have. But one of the problems I think we face, as medical practitioners, is just not having the people who have put the X down, and having to try to ask the family during this horrendous time in their lives.

Again, I ask you, how do any of you on the panel see having a greater opportunity to get people to put an X down on some kind of card? While I understand the health cards are a suggestion, I don't know about you, but I don't remember the last time I've looked at my health card or had a chance to review it. It was many, many years ago. So do you not think there's a chance to do this every year, Mr. Cooper, as you've mentioned?

Mr. Gary Cooper: My interest in the health card is that—of course you're much younger than I am—I see my health card fairly frequently, and one of the—

Mr. Keith Martin: My time will come.

Mr. Gary Cooper: After all you're a doctor—heal thyself.

Mr. Keith Martin: It's not working, let me tell you.

Mr. Gary Cooper: The advantage I see in the health card is first, registration, because everybody does become registered as a health card carrier, if you like. The health card then would serve, I would hope, as an indicator as soon as you become a patient and the person in the hospital becomes aware you're a patient. They swipe the card and it tells them you have signed an intent, if you like. That intent, as in the B.C. system, can actually be shown to the family. I agree with you totally, if there has been good discussion among the family members or good publicity among the public about organ donation, it's going to be a lot easier for the professional who asks. But I do think if the indicator you're talking about is available to the health professional and it's something that can be used in quotes, with respect to talking to the family, then it should be to an advantage.

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I'm not against the way the B.C. system is set up. I'm just recognizing how little we have to spend in Ontario for awareness, and there's basically nothing for registration. It's a totally insurmountable problem right now.

I may disagree with you a bit, in that I, and I think a lot of my colleagues, see a major problem still in the training of health care professionals to do it.

You're an unusual person in the sense that you've been very aware of donation and the need for transplantation, as a health care professional, but I've worked with physicians for more years than I can remember—and I admit that—and I don't think there is the kind of awareness among all health care professionals that you have. I think it needs to be done. I think there needs to be a lot of work done, and you're going to hear more about that—as you already have a bit—from the people in Spain. We're actually embarking on a small microcosm of that kind of system now.

So I agree with you totally, but I just don't think we can do it all. I'd like to be able to do it all the way you'd like to do it, and maybe you can make it happen.

The Chair: Ms. Parsons, did you want to comment on that?

Ms. Daria Parsons: I think I agree with what Gary has said.

The Chair: Mr. Astley.

Mr. Robert Astley: I would only echo perhaps the words of Mr. Cooper, particularly to indicate that we know there are many health care professionals who understand this issue intellectually and emotionally, and indeed carry through on the wishes of the donor families and seize opportunities. We would refer to a study that was done by the Kidney Foundation that indicated that some 83% of nurses and 75% of physicians were in fact reluctant to approach the family of a potential donor at a time when it's clearly a very emotional and traumatic period. Nevertheless, those may be times when opportunities are missed and potential life-saving donations are missed.

So we do see that there is some need for awareness and skill training, certainly for the general population, which is what we've been involved in, and also for many health care professionals.

The Chair: I wonder if I can just take from what you just said and maybe piggyback onto what Mr. Cooper was talking about a moment ago, which is the issue of taking the health card, swiping it, and immediately identifying whether someone is a potential donor or not.

Now, I've had occasion to be in hospitals in the most recent while, and it strikes me that at least in Ontario—let me go from that perspective—what is beginning to happen is not so much the use of a health card.... I have one of the original ones, because I am older than you are. They don't really swipe that card, they take a number. What they've started to follow as a practice is issuing a hospital card. If you go to, say, St. Michael's, Toronto General, or Humber Regional, they all have a separate health card that gives every particular that anybody could ever imagine about you. They're not interested in your health card except for the number, for billing purposes.

What would be the case then...and this is probably most directed to you, Mr. Cooper. Does that emerging practice amongst hospitals counter what Dr. Martin is talking about in terms of having a national registry for identification purposes?

Mr. Gary Cooper: Well, it shouldn't. The system in Ontario has changed recently. In the last couple of years, I think, there's been a regulation that you don't go to the physician's office or the hospital without producing your health card, or you have to stand outside on the corner or something. You do have to produce a health card. And you're right, when you go to a hospital environment, they make their own cards so that you're identified within that system. The swiping is something that is not happening now. If you swipe your health card now at a doctor's office, you get your name, address, phone number, the fact that you are registered in Ontario, etc., but there's not a lot of other personal information, as I understand it, including those few cards that have decals on the back of them that say you are an organ donor. I don't believe that is actually printed out; it's only on the card itself.

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That's not to say it couldn't be done and couldn't easily be done through the health card. Witness the Ontario government's many years of studying a smart system, which is supposed to be an electronic system that will make it easy to identify electronically everything everybody ever knew about you, including your pharmaceutical history, your chiropractic history, your physician, and so on. So another line on there with respect to organ donation, and perhaps one that's a little brighter than the others—I mean a little deeper and coloured—shouldn't be too difficult.

We're talking about things that aren't necessarily readily available, and I suspect that the hospital card would be an easy translation of that. My understanding from some of the people I've talked to about the smart system they're developing is there probably wouldn't be a need to have a hospital card if this information about your history of hospital visits and doctors' visits and pharmacy visits were all in one place.

I don't think it's pie in the sky, but it's not right there right now, and I do think it's very possible.

The Chair: But from an immediate practical term, the point I was getting to is if the practice I've just indicated is one that is becoming more and more common, would not the moment at which the patient is brought into the hospital and all that information is retrieved be the most appropriate moment for asking a question about potential donors?

I've walked into the hospital for a test—I wasn't hoping to be a donor or anything—but presumably at the time they asked me my information to generate this particular card, the person could quite easily have said, Mr. Volpe, have you ever thought about being a donor; can I put you down for this? That would be as a very first step, because from the way I understand Mr. Martin's approach to this, at some point somebody has to be asked if they want to be a donor.

That is my understanding. I think colleagues may have a more profound one. But the first step in any public awareness campaign must be that somebody has to be asked the question or answer the question.

Mr. Gary Cooper: Do you mind if I respond to that?

The Chair: No, that's why I asked it.

Mr. Gary Cooper: I think the problem with that one is—and I've heard it from physicians over and over again, and Dr. Martin might be able to add to this—the physicians have been generally quite reluctant to have the question of organ donation, or indicating your willingness to be an organ donor, presented in the office or in the hospital setting.

I don't know about hospitals. I hope maybe we can turn that around. But there is a reluctance to have patients confronted with this: Should you die some place down the road when you've entered a hospital or a doctor's office, would you be prepared to do this? I know this from episodic experience, not any study or anything. But I do think that could be a problem, not that it doesn't make a lot of sense at one level, but I do think the medical profession would be, or tends to be, a little reluctant to address that.

I think it's really on the registration and the impersonal side of it, where it's an administrative responsibility to give the information you need to get your health card, just like you would your driver's licence. I think there is a little bit of reluctance.

Maybe Dr. Martin would comment on that.

Mr. Keith Martin: May I say something?

The Chair: Do you want to cut in on my time, Mr. Martin?

Mr. Keith Martin: I never want to cut in on the time of the chairman at all.

The Chair: Go ahead, Keith.

Mr. Keith Martin: I'd like to add to what Mr. Cooper said.

Mr. Cooper, you may wish to differentiate between reluctance and actually acting out on them. With the push for discussion of living wills with people, I think there's a greater and greater acceptance over the last five or ten years of people, physicians, and medical personnel who are prepared to discuss this issue with their patients at a very pragmatic level. But I don't think—and I've never seen this since I've been in medicine, 16 or 17 years now, since medical school began—there has been an opportunity. No one has ever said to the health care professionals, to the physicians, please discuss this with your patients.

One of the things I push for is to have one of these cards along the lines of what they have in B.C., which says, do you want to be an organ donor, and have you discussed this with your family? Have every one of those little forms sitting on a patient's chart. At some time it's very easy to discuss that, or they can be given to the patient to be taken home or filled out right there and sent in by the physician's office.

So I don't think anybody has ever done that before, and it would be a great way, on an ongoing basis, to do the asking that Mr. Volpe is talking about that no one is doing—or not enough of it, I would say.

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Mr. Gary Cooper: I'm willing to try.

Mr. Keith Martin: Yes, it would be a really good experiment.

The Chair: It's kind of a rhetorical observation. It doesn't necessarily require time. But that's not a problem.

Let's go to Mr. Myers.

Mr. Lynn Myers (Waterloo—Wellington, Lib.): Thank you very much, Mr. Chairman. I want to thank all the witnesses for their testimony this morning. I think it's most enlightening.

I noted with some interest that you had a geographic connection with Mr. Cooper. I also want to point out that Mr. Astley comes from the region of Waterloo, in an area that Ms. Redman and I share, and so we know first hand—this is an important point—the good work Mr. Astley and The Mutual Group do in the area of By Mutual Consent. This is a very fine corporate citizen and a very fine corporate entity that we're dealing with here, and we very much appreciate the comments that are being made and the efforts you've made over the past.

I liked what you said about the national coordinated strategy. I think that makes a lot of sense in a way that's very meaningful and certainly underscores what we as a committee are looking at in a long-term kind of way, and I think we need to move as fast as we can in this area.

My question really is to you and to Mr. Cooper, in an overall sense. That is, we've been talking about raising the level of awareness of Canadians. For example, British Columbia showed us messages that they get out and commercials and things that are important to them. I wonder if you could elaborate a little bit on that.

I'm also interested in the notion of professional training, and I see on page 5 of your brief, Mr. Astley, that you talked about that, and, Mr. Cooper, you made some comments.

I think you referred to that study, Mr. Astley, about the reluctance. You did not add the second part, that only 35% of nurses and 55.4% of physicians indicated that they in fact know how to refer organs.

So I'd like a further comment on two of those, and then I have a subsequent question, if I might, but really, the whole issue of awareness and how to get that through, the messaging, commercials, whatever vehicles are necessary—Ms. Parsons, maybe you could add to that as well—and also this notion of this lack of understanding on the part of professionals and what needs to be done there in a way that makes sense for Canadians.

Mr. Robert Astley: Thank you. We believe very strongly in consumer education on an ongoing basis. That has been an important part of By Mutual Consent, the program we have been sponsoring for approximately the past six years.

That needs to continue, because awareness can easily drift away. We know from all of our marketing research and commercial ventures that messages disappear after a while. They need to be continually repeated. That's an important part. The rest of the entire infrastructure and skills and training need to be considered as well. Consumer awareness and consumer knowledge, or patient awareness and patient knowledge, is one piece, but it's by no means the only piece.

You're right, I gave only the one set of statistics from that study, which Ms. Côté-Kennedy reminded me came from the University of Victoria and then was quoted by the Kidney Foundation. That is why we see the need for a comprehensive approach that looks at all of those aspects on an ongoing basis. So we are very much in support of the national strategy, as you've indicated.

Thank you.

Mr. Gary Cooper: I'm now in the position of agreeing with Mr. Astley. I think a national strategy for public awareness is absolutely essential, and organizations like his are going to have to continue to support those national strategies. If organizations like yours—that is, our government that you represent—can make it a federal issue or a national issue, then it's going to be much easier for us all. Cooperation among all of the organizations that do this, governments and voluntary and arm's-length organizations that are engaged in public awareness, is essential. It's going to make it a lot easier for the other problem you identified, and that is, the physician, the nurse, or the health care worker who is put in the position of doing the asking.

The statistics that are being quoted are ones that we keep hearing all the time, and we do have to do something about increasing awareness among the public. But it's absolutely essential that if the crunch comes, the educated people, the professional people who are dealing with the patients, have to be engaged in extra education on how to do it.

• 0950

As I mentioned briefly in my remarks, we've just embarked upon a program in Toronto where we are introducing a full-time staff person—right now it's only funded for a year, but it's probably going to continue—into a large hospital. This person's responsibility will be to organize organ donation: to educate the professionals; to set up a committee; to train the people in three or four departments of the hospital who are most likely to come in contact or be in touch with the donor coordinators in the area; and to make sure the system works better than it has been up to now.

We hope if this experiment is successful—and we have a lot of reports that this kind of thing works well in other jurisdictions—we'll be able to use this as a model for the rest of Ontario, because our mandate is to deal with Ontario. I do hope we may be able to use it as a model for the rest of the country. It does seem to be something that needs to be done. It's going to make it a lot easier for people. The citizens of the country are supportive. I don't know exactly how we can adapt “put your money where your mouth is”, but if 80% of the people think organ donation is good and 35% of the people sign donor cards backing that up, we need to do something to close that gap.

I think what you people are doing is going a long way towards making that a good beginning to seeing that difference.

Mr. Lynn Myers: Mr. Chairman, may I ask Ms. Parsons if she has anything to add?

The Chair: Sure.

Ms. Daria Parsons: No, I don't, thank you.

Mr. Lynn Myers: Thank you.

Mr. Astley, I wanted to go back to page 5 of your brief again. I was very interested in your note about the lack of incentives for hospitals. I wondered if you could elaborate a little bit on that.

Then I also want to ask all of you if you think there should also be incentives for individuals in some sort of tax relief. We've heard that, actually, at this committee, in terms of an incentive, either for the family or the estate, or something through the tax system. I wondered if you've ever given that consideration or if you have some views on that. If not, that's fine too.

Mr. Astley, maybe you could start with the incentives to hospitals.

Mr. Robert Astley: Yes. The issue we wanted to highlight there was not one that we claim to have special expertise in, but we do observe that hospitals across the country are under tremendous pressure these days from funding, from patient loads, and from the shortage of beds for intensive care treatment. We note that at a time when those pressures are particularly intense and when health care professionals view their primary mandate as maintaining life, harvesting organs from what might be viewed as a failure—a patient has died because of a cranial accident or whatever—is not at the top of their priority list.

Indeed, from the entire funding point of view, there's very little that would cause the hospital to say that this is going to be a priority for them, that it will help to make them more effective and help them produce statistics that they can take to the Ministry of Health and the province and so on. That's our observation, but I don't think we would claim any particular special expertise in health care administration and hospital funding and so on.

The second issue of incentives at the personal level for organ donation is an issue that I must say we had not talked about and debated, and we certainly don't have a strong view on it. My own personal view—I'll qualify it in that way—is that it's an area I would tread very cautiously in, because it could poison public opinion. I think one would need to be very careful about going down that route. It could very much impact those individuals who see this as a responsibility to society and might see it being turned into a commercial venture.

Mr. Gary Cooper: In our presentation a few weeks ago, we did make reference to the fact that there have been studies indicating that particularly at a time when hospital funding and health care funding—and any other kind of funding—are under a great deal of pressure, as they are these days, there are disincentives in a sense, particularly to some smaller institutions that may be potential donor institutions but are going to incur what would seem to most of us to be fairly nominal costs, which would then interfere with the annual budget and other programs in the hospital, the ones they could probably more likely identify as life-saving programs. Organ donation sometimes isn't seen immediately as being life-saving. It's sort of seen as taking advantage of a bad situation. There should be some kind of fund available for those institutions.

• 0955

In a couple of recent studies, one that I only know of informally, which I think was communicated to you in the last couple of days by the people from the Toronto Hospital or some people who maybe represented other work organizations at Toronto Hospital, they established that the cost of identifying and maintaining a donor, which is really not covered in the system right now, is something in the area of $6,000 to $7,000 on average. It seems like a fairly small piece of the pie, but if it's going to increase donors, you're going to save not only a lot of money but a lot of lives.

Another report from a committee that I was actually involved in is from the joint policy and planning committee that we referred to the last time we were here. They make a similar recommendation for funds of that nature. I do support that. I think that's wise.

Also, from the point of view of individual incentives, I share Mr. Astley's concern that if you get too far away from altruism in organ donation, you have to be very careful to identify your position and to support it. There are some jurisdictions, for instance, that will pay funeral expenses for families whose loved one has been an organ donor. I think Mr. Martin has talked a little bit about identifying donors through tax returns, but I don't think there's been any reference to any tax rebate for donors or to anything of that nature. There are some jurisdictions where that is under consideration.

Personally—and our organization hasn't discussed it at any length so I can't speak for the organization—I would tread very carefully on that kind of thing. I think altruism is extremely important in this area. I'm inclined to stick with the goodwill and caring of the people of Canada. This country tends to still have that among its people.

The Chair: Mr. Cooper, this committee has had before it the formal representation that we consider that, but it's good to get your views on it.

Now, you flashed a copy of a report that you shared in the preparation of...?

Mr. Gary Cooper: This secret report I have here in my left hand?

Voices: Oh, oh.

Mr. Gary Cooper: I'm certainly happy to leave this one with you.

The Chair: This is great because I was just going to ask you for it.

Mr. Gary Cooper: As long as you don't tell anybody I gave it to you, you're welcome to it.

The Chair: We'll just put it on the worldwide Internet. Thank you very much for that.

I have a couple of questions, but I'm going to go to Madam Redman now.

Mrs. Karen Redman (Kitchener Centre, Lib.): Thank you, Mr. Chairman. I have a few questions.

I'd like to thank all of you for coming here to give us your interventions.

Mr. Cooper, I really agree with one of the comments in your brief, which was that there is no quick fix or single action with respect to organ donation. That's the thing that has sort of hit me between the eyes as we've gone through this fascinating process.

You reference the Spanish and Texan models and talk about how neither one was developed with restricted funding such as what exists in Canada. Has anybody quantified the kind of funding that is deemed necessary if this is to become a federal initiative?

Mr. Gary Cooper: When you ask me whether anybody has, I can tell you that I have. Then we'd have to go from there. I can also tell you that I've read a fair bit about the Spanish model, and we have based our small pilot project in Toronto, which I mentioned to you, on some aspects of the Spanish model and on some of the Texas program, which is run in a similar way, with people in hospitals with a centrally coordinated organization behind them.

We are acting in Ontario as this central coordinating area, and right now for this pilot project we have, I think, something like—if you're sitting down—$85,000. It's not much money, but if you put one of those people in each of the trauma hospitals in Ontario—I'm not sure how many there are—and have it working on an 18-hour basis or preferably on a 24-hour basis in an on-call system and so on, you're talking about a lot of $85,000s. For all of Canada, it would be a considerable amount of money, but in the whole scheme of things, not a great amount of money, I think.

I refer you to your visit from the people from Spain, next week, I think. They will give you some details. I don't see why—because we've looked at it in other committees in which I'm involved and there seem to be a lot of similarities between our situation here in Canada and that in Spain. It doesn't sound like a lot of money, and I don't really think it is. I can't tell you precisely what the cost is, but I think it's very manageable. Right now the problem is that we aren't spending an awful lot of money on organ donation, and I think probably not enough on transplantation. But certainly in relation to the two, organ donation or the supply side is on the short side.

• 1000

Mrs. Karen Redman: Ms. Parsons, I'd like to have a clarification with regard to something in your brief. Under the collection of organ donation and transplant data, you referenced six provincial organ procurement organizations and two regional OPOs. Are they provincial bodies or non-governmental bodies? Are they funded by the provincial government?

Ms. Daria Parsons: Yes. The two regional are in Alberta.

Mrs. Karen Redman: Would they be funded by that province, then?

Ms. Daria Parsons: Yes.

Mrs. Karen Redman: I find your statistics to be really interesting. I've been a member of the finance committee since I became a member of Parliament, and I have never been moved to tears the way I was when we heard from the parents of young children who were waiting for organ donors and the parents of children who had been donors.

Are the children's rates broken out in the statistics?

Ms. Daria Parsons: They're not in what I presented to you. In the reporting we do, we include a section on pediatrics.

The Chair: Could we get that?

Ms. Daria Parsons: Certainly, I'd be glad to forward that to you.

The Chair: Just send it to the clerk, and we'll distribute it to all committee members.

Mrs. Karen Redman: I would appreciate that. As much as we talk about whether we should use income tax returns, the health card, or the driver's licence, it strikes me that there's no one approach to this. Somehow it has to be in the public knowledge that this is a good thing to do. I think there's probably nothing more tragic than having the family be asked at that time, and yet it can be such a gift to enable somebody to enjoy a very long and full life.

Mr. Astley, I really appreciate the leadership The Mutual Group has taken. We ran into each other yesterday, and I was saying that it's always a delight to see that somebody from the hometown is continuing to provide leadership.

When we looked at the Spanish model, one of the things that was pointed out is that there's a 40% turndown rate in Spain, and in Canada, when families are asked if they would consider having their loved one be a donor, our turndown rate is actually very low.

Where we're not doing a good job is in asking the people. As a sort of segue from what I asked Ms. Parsons, when it's a child, obviously, it's a family decision. Whether or not we've indicated it on our health card, our driver's licence, or wherever, obviously, that piece of consulting with the family needs to happen.

You talked about the non-governmental organizations, such as the Kidney Foundation, and you referenced Alana Kainz, the widow of a sportscaster, I believe. I think that did much to create public awareness, and having someone like that helps to rally communities when people are looking for bone marrow transplants, for example.

So my question would be, how can we do a better job at that? Have you looked at who are the appropriate people within a hospital? Dr. Martin has talked in the past about how sometimes it's not appropriate to have the attending physician involved. We've heard from critical care nurses that sometimes it's difficult for them when they're doing exactly what you talked about, which is trying to be successful in having the person survive, and the reality is they're not going to be. Is there a mechanism or a better group to make sure we ask the right questions in a sensitive way at the appropriate time?

Mr. Robert Astley: I think that's a very profound issue, and it really does go to the heart of the emotional trauma all parties are feeling at a time of crisis. On the basis of what we understand from our experience, I would support that some thought be given and some mechanisms be put in place so that it may not be the attending physician or the critical care nurse who is put in the position of asking. That means there need to be others around who have the training and the skills and who are available to do the asking.

• 1005

My wife is a voluntary, on-call chaplain at one of the hospitals in Kitchener, and she knows from personal experience the stress nurses on the floor are under at a time when they have many patients around them and they don't have enough support. They simply are unable to take the time to speak to and counsel the family.

That's when some other professional, knowing the graveness of the situation, could come in and make an intervention that would be helpful and as well achieve the objective of encouraging the organ donation. What the consequences of that would be and how that would be structured is really not for us to say. But I do think this is a very important aspect of the whole emotional interpersonal issue.

Mrs. Karen Redman: Do I have time for one last question?

The Chair: Sure.

Mrs. Karen Redman: Mr. Cooper, what's the most appropriate role for the federal government to play in all of this?

Mr. Gary Cooper: I think I would have to agree with what many people who have recently appeared before you have been saying—and I think we stated it earlier when we made our presentation—that is, it's becoming clearer and clearer that we need some federal coordinating group.

Just after I became involved in transplantation, I was taken by the announcement a couple of years ago by the federal-provincial-territorial group that was meeting to discuss organ donation and transplantation in the country, and it is still meeting to do so. When they made an announcement about their report, they circulated the 13 or 14 strategies to all of us who were involved and asked those of us who were involved at the provincial level how we could bring everybody together nationally without having—I think I may be misinterpreting a little bit—a national body; in other words, what could the existing organizations and the existing governments do. One of the reasons is probably because health is a provincial responsibility. But it did seem to me to be an odd sort of approach to manage what I think is a service that should be available to all people in the country.

I do believe there has to be some kind of federal coordination. I'm not sure I was asked this direct question, but I responded to the clerk a little while ago about what we as an organization saw as being the responsibilities of a national coordinating group. I stole a little bit from a committee Ms. Côté-Kennedy and I sit on, which met a couple of weeks ago, where we talked about this very issue. We listed several things that really boil down to providing data collection and using more effectively organizations such as that of Ms. Parsons—that's not to suggest her organization isn't effective, but providing an environment where it can be used more effectively—and establishing national standards, which is being done now, but on a less formal basis than maybe it could be. It could perhaps—and I bite my tongue as I say this—even introduce some more standards and guidelines and maybe even regulations—that horrendous word—that govern the way people are listed and identified, the way allocations are made, and this kind of thing. That's not to say it isn't being done efficiently across the country, but I think that even as big as this country is, it would serve us all well if we were to have some umbrella organization, not just to introduce another bureaucratic control but to bring together people, as opposed to administer. I'm not sure that's the right word. But I really think there needs to be some coordinating group.

Mrs. Karen Redman: Is it fair to ask Ms. Côté-Kennedy if he got it all right, or did he leave anything out that you could add?

Ms. Anne Côté-Kennedy (Director, Communications for the Canadian Customer Business Unit, The Mutual Group of Canada): No. He certainly represented the group's deliberations.

I think one piece I need to say speaks to the asking and the value one derives from giving. In speaking to one of your committee members from a donor family that lost a daughter 15 years ago, a two-year-old, what he has expressed to me, in just speaking one on one, is how the fact they were able to bring meaning to this otherwise incredibly difficult situation helped in their grieving process. The way he has described it, as the incentive and value a donor family derives that's beyond monetary or support in any other way, is the fact that they provide meaning out of an otherwise incredibly difficult situation. That message is one that I think is valuable to have translated to the potential donor families through a trained professional.

• 1010

Mrs. Karen Redman: Thank you.

The Chair: Thank you very much, Madam Redman.

Would The Mutual Group demonstrate interest in establishing a system whereby the professionals who would be...? I don't want to attribute any specific role to them, but Mr. Astley, in your presentation, you talked about professional medical providers who weren't appropriately trained or prepared to address the issue when the issue of organ donations would come up. Has your group thought in terms of perhaps working together with a coordinating body like the one both Mr. Cooper and your colleague have suggested, and provide the educational training infrastructure for that to happen?

Mr. Robert Astley: Mr. Chairman, we would certainly be interested in having those kinds of discussions. We recognize right up front, though, that we are not health care professionals and we would not want to blunder in where we would create ill will and not be effective. But in a coordinated approach, yes, we would be interested in being involved in those kinds of discussions.

We do have skills in providing motivation and training because we have people across the country who do that every day, and we develop programs for them using multimedia approaches and different techniques. So yes, we would be interested in that, provided we believed it was within a good, effective, coordinated strategy and that it was going to make a difference.

The Chair: I'm pleased that you were able to coordinate the steps around that music really well.

Mr. Martin.

Mr. Keith Martin: Thank you very much, Mr. Chairman.

I have a couple of quick points just along the lines of the excellent comments Mrs. Redman made. In terms of dealing with the training issue, which you've addressed very well, do you think a model that can be used is what we have in many hospitals, regardless of their size? We have rape crisis teams, people who are existing staff people, so you don't need to expend money on new staff persons. These persons have some extra training.

Perhaps one can do that through the justice institutes. We have one in British Columbia. I don't know if there are justice institutes in other provinces, but they provide medical training, such as advanced cardiac life support, advanced trauma, and also other training. Maybe this is a course that could be co-funded between the feds and the provinces to provide that extra training for a few designated personnel who could be on call on a 24-hour basis, so you would have a team of people and that call is split up.

The second point is that perhaps we can take a leaf out of the programs in B.C. to address the issue one of you mentioned—I don't know if it was you, Mr. Astley—about the cost of procurement. But a way perhaps of dealing with that is to have a pool of funds, again co-funded by the feds and the provinces, where they both put money in so there's always a pool of money that will go for transplantation. That money can also go to reimburse hospitals who are procuring organs, so there is never a lack of funds for providing this essential health care service and hospitals are reimbursed so there isn't that penalty for engaging in this. What do you think about that?

Mr. Robert Astley: Again, I'm delving into areas that are by no means the areas of expertise of me or my company, but those kinds of initiatives would, I think, make a good deal of sense within a comprehensive framework. Certainly the idea you proposed of having specialist teams that might be on call that would have the skills in potential organ donation situations could make a good deal of sense. I think those are very, very important possible solutions that need to be considered.

Mr. Keith Martin: We already have trauma teams that are called in. If there's a trauma in the hospital and say I'm on call, we call in a trauma team, so the surgeon comes and the anaesthetist, etc., to help out. One of those people involved, either physician or nurse, can be trained in the art of dealing with families under these circumstances.

The Chair: Mr. Cooper.

Mr. Gary Cooper: You make some very interesting points.

• 1015

The M.O.R.E. Program of Ontario currently does have a minor program, if I can characterize it as that, just because of the funding, where we have what we call regional communications coordinators. At one time we had about 25 nurses, most of whom were critical care nurses or people who had special experience in emergency care or whatever, who would work for us. When I first came on I think it was a day a month. They spent that time educating people in their hospital and surrounding hospitals about organ donation, and they often were available on a gratis basis for asking or being involved with teams that were engaged in organ retrieval, and so on.

We decided we needed more time from these people and that we could only use fewer of them because we had limited funds, so we now have about eight or nine who are working one day a week doing this kind of thing. It's along the line of being on 24-hour call, and most of the 24-hour call, I'll admit to you, is not paid.

One gratifying thing is in the hospitals we had to choose not to have these regional communications coordinators or these internal experts—people who, as you suggest, are already there and therefore know the system and know the people. Almost all of them said they weren't making a lot of money out of it before anyway so they continued on as volunteers. We should have just cancelled the whole program. We would have probably had new people at no cost at all.

So it's very gratifying, but you can't call on people to do that all.... Nurses are very busy people, and most of these are nurses. They obviously have other priorities sometimes and they're not available. So the idea of having crisis teams or 24-hour teams is a good one, and using people from inside the institution I think is a very advisable thing to do, because, as you say, they're already attached to the organization. They know the institutional culture and this kind of thing.

Mr. Keith Martin: I'd like to make a comment, if I may.

We're already on call 24 hours a day and no one is reimbursed for that. A way to reimburse the nurses, though, would be a call-in fee. If they get called in, they get paid a fee, just as when physicians are called in they get a fee.

Mr. Gary Cooper: You in B.C. have an advantage that we in Ontario don't. It's very seldom that I'm ever able to identify that, except for your mountains and your ocean and your gorgeous scenery and the weather. There are very few things that I—

The Chair: You know he's actually a Toronto boy.

Mr. Keith Martin: I got lost on the way going out to Mississauga.

Mr. Gary Cooper: To come from Toronto is a good thing to do.

You mentioned something that made my ears perk up—the federal-provincial funds to cover the cost of procurement in B.C. I don't know. Maybe the federal funds haven't got east of the mountains. I don't think we have a federal-provincial fund to pay for the cost of procurement in Ontario.

Mr. Keith Martin: There isn't. They fund the whole amount right now—

Mr. Gary Cooper: B.C. does.

Mr. Keith Martin: B.C. does. But I thought as an enticement, if there were, to have a federal-provincial co-funding of this to make sure that all the provinces have a pool of funds, we wouldn't see the kind of tragedy that occurred in Toronto where a gentleman with cystic fibrosis lost two lungs just because there wasn't enough money to pay for a hospital bed and a nurse to take care of him in the ICU.

Mr. Gary Cooper: Where do we sign?

The Chair: Ms. Parsons, with respect to the database for CIHI, who funds that? Is that completely federally funded, or is it a combination?

Ms. Daria Parsons: We have bilateral agreements with many provinces and we collaborate with Health Canada and Statistics Canada.

The Chair: So the funding formula is?

Ms. Daria Parsons: The specifics of it I would have to get back to you on.

The Chair: All right.

Ms. Minna.

Ms. Maria Minna (Beaches—East York, Lib.): Thank you, Mr. Chairman. I actually want to pick up on what you started with Ms. Parsons, if I could, with regard to the CIHI.

I'm trying to understand how the organization came to be. Was this established by a bilateral government agreement of some kind, or did it sort of evolve on its own?

Ms. Daria Parsons: It evolved from NHIC, the National Health Information Committee.

Ms. Maria Minna: Okay.

Am I right that it's also looking at the implementation of the 13 recommendations with regard to...am I right on this one, Mr. Chairman? We were discussing this yesterday with regard to the 13 recommendations or the 13 strategies. This is not—

The Chair: Not for Ms. Parsons, no.

Ms. Daria Parsons: May I respond?

The Chair: Certainly.

Ms. Daria Parsons: One of the core board members sits on the ACHS, the Advisory Committee on Health Services, which has the 13 recommendations.

Ms. Maria Minna: Okay.

I'm just trying to work my way through all the different bodies and where it all fits in, because there are so many different pieces here.

• 1020

So your organization has evolved out of something and it's funded by some federal-provincial accord, and it does primarily information. Then there's CORR, which does collection as well.

I have a number of questions. Do you see your sort of organization becoming this national body that everybody is talking about, or a part of it, or is it CIHI plus CORR, plus the other one that's doing the 13 recommendations, that will pool together, eliminate, and create one national...? I'm trying to sort out the different pieces and come to some sort of recommendation at the end of the day, because everybody has said we need a national strategy, a national organization. We seem to have a number of national groups, but there doesn't seem to be in all of this a collaboration or a pulling together of what have you.

The Chair: How bold do you want to be, Ms. Parsons?

Ms. Daria Parsons: The Canadian organ replacement register is a program within CIHI. It's one of 18 databases and registries we have.

At the Canadian Institute for Health Information, as I described generally, we have data on physicians, on nurses, hospital admissions, and on trauma. We've been working to set up a national trauma registry, so there's a wide variety of databases we have. The information I have on CORR is retrospective, so the information I've presented to the committee today is showing 1997 data.

What we're saying we need, and it's in the recommendations I've read for all of the witnesses who have been before the committee, is a national organization with a real-time wait list and real-time donors. That is certainly different from the business CIHI is currently in. It's something we would have to take to our board.

So my presence here today is to say, this is what we do know in terms of national data. We know the number of people on a waiting list retrospectively. We know the number of donors retrospectively. I can tell you all you want to know about livers and lungs and hearts being transplanted for 1997.

Ms. Maria Minna: You don't deal with tissue at all then?

Ms. Daria Parsons: We do not deal with tissue at this time, although certainly there's a lot of discussion happening around development of a national tissue registry.

Ms. Maria Minna: Mr. Cooper, in your paper you mention that there is a Canadian general standard on safety of organs and tissues for transplantation under development at the moment. Who is involved in it? Is it M.O.R.E. or CORR and CIHI who are involved? Is everybody involved, or is it some people who are involved? What stage is it at?

Mr. Gary Cooper: My understanding of that group is it's basically a physician committee that's sponsored by Health Canada. I don't know whether people are here from there, but, yes, it's sponsored by Health Canada. I think you heard from Dr. Paul Greig, who was one of the significant authors of this report and who also is on the board of CORR and CIHI, a few weeks ago. It actually does provide an example of the ability to bring things together on a national basis, and Health Canada was the major instigator of this.

Ms. Maria Minna: So we have a lot of pieces. What we need is somehow to pull all of them together into one cohesive organization that can handle all of the different aspects.

Mr. Gary Cooper: I think people are coming to that conclusion. As I mentioned earlier about the federal-provincial group that we've been talking about, in each one of the 13 strategies they circulated to us—and I may have the numbers wrong—they asked or commented on what group they thought should be the lead group in the strategy. On many occasions they mentioned a group you've heard from called the Canadian Association of Transplantation.

The Canadian Association of Transplantation is an organization without a secretariat. It has very very little funding, from dues that people like me pay—very small dues—and they're a very active and good group of people who are involved in transplantation. But there were suggestions throughout this report that the leadership come from this organization to do fairly significant things. To me it seemed it would be an unreasonable expectation that a group without any funds, or any structure of the nature that you would need to do this kind of thing, is being identified as the lead group.

So I think this is why everybody is coming together and saying there are some great ideas out there, there are some great needs, and there are obviously institutions in place already that could be built upon, but somebody needs to get the plans together and approve them and get them going.

• 1025

Ms. Maria Minna: If I could finish, Mr. Chairman, my sense is—and I may be totally wrong in this—that if we were to develop this national group, maybe some of the existing groups might collapse because of duplication.

Mr. Gary Cooper: I suspect that's certainly a possibility, but there aren't an awful lot of the existing groups in the sense that there are only a couple of provinces that have more or less large organizations that deal with organ allocation.

Ms. Maria Minna: I mean at the national level.

Mr. Gary Cooper: But at the national level I can't imagine that. The national groups that are functioning effectively in organ donation right now, in addition to Health Canada, which has a group of people who do a lot of good and hard work in organ donation, are organizations like Ms. Parsons', which is obviously something to be built on, not to be built over. I think it would strengthen her organization, for instance.

The other organizations are more or less voluntary, such as the Canadian Association of Transplantation or the Canadian Transplant Society, which is mostly physicians. If we bring them together, I think it would give them a strength; it's still the federalist approach.

The Chair: You'd probably find some sympathetic ears around the table, although I would say they wouldn't resonate homogeneously. But thank you for your perceptions.

Mr. Cooper, it's been delightful to have you here, as it has been to have you here, Ms. Parsons and Mr. Astley and Madame Côté-Kennedy.

I thank all of you for what has been, I think my colleagues would agree with me, probably one of the most frank exchanges of views. It could not have come at a better time, because we're getting towards the end of our study and the kinds of insights you shared with us today are right along where we want to be, i.e., we're becoming more and more focused. We thank you for being what I'll term “blunt”. I used that word in regard to one of the representations and I meant it in all of its positive elements.

Thank you, each and every one.

We'll suspend for about two minutes while we have our second panel.

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• 1035

The Chair: Thank you, colleagues. Let's resume with panel two this morning.

With us today we have representation from two groups. From the University of Western Ontario, it's my pleasure to welcome Dr. Bhagirath Singh, who is professor and chair of the Department of Microbiology and Immunology. Welcome, Doctor.

From Health Canada we have Sandra St. Germain, who is chief, Canada Health Act, Compliance and Administration, Health Insurance Division, and the chair of the Coordinating Committee on Reciprocal Billing from the Policy and Consultation Branch. With her is Mr. Bruce Davis, who is the director of the Health Insurance Division, also from the Policy and Consultation Branch. Welcome to both of you as well.

I noted that all of you were here during the course of the last panel, so without any allusion to chronology, you're old hands at what's happening. I'll go to Dr. Singh first.

Dr. Bhagirath Singh (Professor and Chair, Department of Microbiology and Immunology, University of Western Ontario): Thank you, Mr. Chair.

My remarks will be in a direction that is quite different from what you heard this morning and what you may be hearing later on. I want to bring a perspective that relates to research and its role in organ transplantation.

Let me, first of all, thank the standing committee for giving me an opportunity to address you about the role of research and the knowledge gaps that exist in improving the safety and quality of life of recipients in Canada.

The critical issue I would like to focus on this morning is the fact that due to the shortage of organs available for transplantation, there is an immediate need to focus on research to maintain the viability of transplanted organs in patients so they remain functional for a long time. Second is to improve the quality of life of transplant recipients, and third, to assess whether an alternative source of organs, such as xenotransplantation, has a place in solving this crisis.

Canada has been a leader in clinical organ transplantation research. In 1980 Dr. Calvin Stiller at the University Hospital in London, Ontario, was the first to do clinical trials on cyclosporine, a drug of choice currently for organ transplant rejections, and that has saved thousands of lives around the world and millions of dollars of health care costs.

There are two areas where research gaps exist currently. The first is developing new technology so that the need for immunosuppressive drugs can be reduced or eliminated completely. This will reduce the toxic side-effects of drugs that are used to suppress the immune system and, in many cases, that may actually enhance the graft rejection. There is a question of quality of life of transplant recipients for those who are treated with these drugs, and for this purpose alternative methods have to be developed so that tolerance to the grafted organs is maintained with the use of drugs.

New methods to induce tolerance will not only help maintain the grafts without drugs, but will improve the knowledge of how the body's immune system can be used as a friend to maintain the transplanted organs. This will allow more life-saving transplants to occur, improve the quality of life of the transplant recipients, and also reduce the health care costs. It will also reduce the demands on our current supply, as many recipients require more than one transplant over their lifetime.

The second area where the research knowledge gap exists is in the field of xenotransplantation—that is, temporary or permanent transplants of organs derived from animals such as pigs into humans. Xenotransplantation has to be considered as a serious alternative due to a severe shortage of donors. Many patients are waiting for organ transplants. One example is the people on kidney transplant lists, which you have heard quite a lot about during your hearings here.

The major challenges in this field are the lack of knowledge about how the xenografts are rejected, the potential transmission of viral infections, and ethical considerations. Therefore new, safer immunosuppressive treatments have to be evolved, and the basic understanding of xenograft rejection requires new research and innovation.

There is a serious lack of understanding of potential xeno-organ transplants. The issue of public support is critical in this area, but this can only come from more basic research and addressing the issues that are of concern to the public. Ethical issues aside, the main area of concern for the public may be the potential risk of transplantation of animal viruses or pathogens from xeno-organs to humans.

• 1040

Without research and subsequent developments in this area, there will always be these unknown risks. The only way this issue can be addressed is by careful investigation in a controlled environment by experts in the field. This will allow for development of new technologies, and potentially a new biomedical industry may come out of these investigations. A small but sustained investment into research to understand and dissolve the potential problems that can arise from xenotransplantation is very critical, a point made very strongly in a recent editorial in the Globe and Mail, March 8, 1999.

Apart from this, medical research not only saves lives, it also creates wealth and jobs in the new knowledge-based economy. This fact has been recognized by the federal government through the establishment of a number of networks of centres of excellence in biomedical fields. The proposed Canadian Institutes for Health Research to replace the Medical Research Council, and investment in the Canadian Medical Discoveries Fund by Canadians, definitely support this vision. I understand your committee has played a significant role in these developments. On behalf of my colleagues across Canada, I therefore thank you for your support, one and all.

However, the current investment in research in organ transplantation in Canada by the federal government is alarmingly low—and I enclose the figures in a table here. The overall funding for immunology research from the MRC in 1998-99 is around $10 million, out of an annual budget of $276 million. That represents about 3.6%. During 1998-99, MRC has provided approximately $1.2 million to organ transplantation research, which is barely less than 0.5% of its budget. On the other hand, in 1998-99, the National Institutes of Health in the United States allocated $294 million U.S. for transplant research. Even after adjusting this for population differences, the U.S. spends thirty times more per capita on transplant research than Canada does. Xenotransplantation research only received a meagre $35,000 from MRC during that same year.

The total research funding for transplant research by all federal, provincial, and non-profit groups in 1996-97 was less than $2.5 million. Considering that we spent $6 billion to $8 billion on R and D in Canada, the Canadian research effort in transplantation is low key by any measure. We must address the issues that require research, not only at the bench but also at the bedside, with the newest tools and techniques of molecular and cellular biology. This may require reallocation of funds for transplantation research if Canada wants to become a leader in the emerging science of xenotransplantation. The international pharmaceutical giant Novartis has realized the potential of xenotransplantation in Canada and has established a research chair in xenotransplantation at the University of Western Ontario in the name of Dr. Calvin Stiller.

The final remarks I have relate to whether xenotransplantation is possible and should it be done.

Canada pioneered the discovery of insulin in 1922 for the treatment of diabetes. For more than sixty years after the discovery by Dr. Fred Banting, patients are still treated with insulin derived from animal sources, pork and beef. Technology developed in the 1980s finally allowed for the production of human insulin. This Canadian discovery saved millions of lives around the world. The same potential exists in xenotransplantation in the next decade.

Xenotransplant research will allow for development in new technology to prevent graft rejection. Also, ongoing research in cell and tissue growth, which is termed tissue engineering, may eventually lead to development of new technology in the next century, allowing us to regenerate human organs in test tubes for transplant from the cells or organs of the patients themselves. We eventually wouldn't have to go to xenotransplantation. This is already happening with skin grafts for burn patients.

Transplantation research has long-term potential to develop new therapies and will allow jobs and new industry in high-tech biomedical fields. It is a well-established fact that in the global economy, no research equals no new knowledge. Without new knowledge, no new products, no new industry, and no new jobs will be created. We always hear about importing technology. I can assure you that if you do not have your own technology, there will be no new industry and no new jobs created because of the lack of knowledge.

My plea is that Canada, through its federal and provincial governments, make a commitment to its citizens that they should have a reasonable expectation of obtaining a transplant if one is needed, in a reasonable timeframe, and have the best possible quality of life after transplantation. Canada should develop a Canadian institute of organ transplantation research under the new proposed Canadian Institutes for Health Research umbrella to address the scientific, medical, and ethical issues to commercialize any invention that may result.

• 1045

In conclusion, Mr. Chair, a strong recommendation from your committee for an enhanced focus on research on all aspects of organ transplantation and organ donation will be the best outcome for patients and their families, as well as for our health care systems.

Thank you for taking the time to listen to my presentation.

The Chair: Thank you, Dr. Singh.

We'll now go to Health Canada.

I don't know how you want to separate this out, Sandra and Bruce. Who shall speak first?

Dr. J. Bruce Davis (Director, Health Insurance Division, Intergovernmental Affairs Directorate, Policy and Consultation Branch, Department of Health): I will start, and we'll try to keep our combined presentation within five minutes, which will be a challenge.

The Chair: I'm a little shortsighted today, so I may not be able to see the clock all that well. You'll have to bear with me.

Dr. Davis, and then Madame St. Germain.

Dr. Bruce Davis: Thank you, Mr. Chair, members.

Sandra St. Germain is with me today. She's from my staff and she chairs the committee on reciprocal billing. I did many years ago, and I stay in contact with that quite closely as well.

Our purpose today is to provide some information on how the provinces and territories and the federal government work together to pay for services received by their residents outside their jurisdictions. This is particularly important with respect to transplant services. That's because, as you know, there are only certain specialized centres and certain provinces that provide those services, necessitating that people often have to travel for these services, thus the services occur outside the jurisdiction.

Maybe we could start with a description of our reciprocal billing process.

The essence of reciprocal billing in Canada, and one of our advantages, is that it's a simple process. It's something you can't do with an employer-based system. It is really akin to a single-payer system like the one we have in Canada.

When you're out of province, the out-of-province patient receives the insured service. The host hospital or physician accepts the card of the patient even though it's from another province, it delivers the service, and it then bills the plan of their own province. The host plan pays the hospital or physician and then bills the patient's home plan. So the provincial plans settle the bills, removing the complexity from the doctor and from the patient.

The Coordinating Committee on Reciprocal Billing was established in 1991. It reports to one of the series of advisory committees that exists for provinces and territories and the federal government, the Advisory Committee on Health Services. Its objectives are to operationalize the portability provisions of the Canada Health Act, and also to identify, discuss, and resolve administrative complexities dealing with interprovincial arrangements. It's one of the advisory committees that I'll be mentioning, because there are several of those reporting to deputy ministers.

Here are the principles of reciprocal billing that are accepted by the provinces and by the federal government akin to the portability provision: acceptance of the host rate—and that's built into the portability provision of the Canada Health Act; acceptance of the payment as billed—in other words, no dispute of it at the billing point; the use of national rates for out-patient and high-cost procedures, and Sandra will give you a bit of background on that; simplicity in design for ease of administration for the patient and for the doctor; and a minimum of exceptions. There is a list of exceptions that is used for reciprocal billing. As I recall, however, it's only on one page and it's getting shorter.

For the Coordinating Committee on Reciprocal Billing, Health Canada provides the chair, through Sandra, and the secretariat as well, through my division. There are four provincial members on it—Newfoundland, Quebec, Ontario, and Alberta—and the other provinces are contacts, effectively. We keep them advised, and we sometimes have meetings of the contacts as well.

My last overhead just puts in perspective the committee structure that exists for the federal, provincial, and territorial governments. There are of course the conference of ministers of health and the conference of deputy ministers of health, both of which meet several times a year, and there are advisory committees underneath them.

• 1050

As you see on the list for the advisory committee on health services, there is the reciprocal billing committee, which reports through the advisory committee on health services. Basically, the reciprocal billing committee handles administrative types of issues, but if a policy issue does arise, it is referred up through the advisory committee on health services.

I'll turn this over to Sandra.

Ms. Sandra St. Germain (Chief, Canada Health Act, Compliance and Administration, Health Insurance Division, and Chair, Coordinating Committee on Reciprocal Billing, Policy and Consultation Branch, Department of Health): I guess what we're saying is that we have to work together. There's a provincial role as well as a federal role, and although the provinces and the territories are essentially at the delivery end of the role, the coordinating committee works on a number of things.

National rates, as Bruce mentioned, is one thing. That's where it fits into your deliberations, that is, organ donation and transplantation fit under high-cost rates, which are a particular responsibility of our committee.

I provide a facilitator-secretariat-nudger-prodder type of role sometimes. In the course of doing our organ donation transplantation study, which I'll talk about later, we actually took on the lead because it was quite complicated and involved a lot of communications.

We are fairly technical and administrative, as Bruce has said, and in that respect, I think some of the documents we've provided today should be good background. I won't begin to try to explain it because I could probably confuse you in two seconds flat. At the same time, they're good for reference, I think, in terms of getting beneath the surface of some of the issues.

Just for your information, I had to smile when I looked at this, at the responsibilities. I first got involved with reciprocal billing when I worked in Alberta for Alberta Health Care and was part of the team looking at trying to cost heart-heart/lung transplant when it first started in Edmonton. Then I moved to Ontario, became part of the Ontario government, and became part of Bruce's reciprocal billing committee at that point.

Lo and behold, I'm now chair of the committee. So I've fulfilled all those particular roles, and again, I'm very pleased, as part of an administrative group, with just how supportive it is and how well we've been able to work together on a whole host of issues related to the portability of health care services. The other thing is that portability is working in Canada. It's used for most services.

Before I get to the rates—and those rates are in your brief—I'll describe the process a little. It's certainly not rocket science that we're talking about here when we develop national rates for organ transplantation or any of our other high-cost rates.

We've tended to use consultants. In the past, we've had three consultants to carry out studies periodically. They've identified particular hospitals that provide the high-cost services, collected data from them, and in the process identified basically average rates. It's part of the simplicity of our design.

Recently we've actually developed our own working group. We will now have a standing committee on hospital rate reviews. That's kind of exciting in that we are in partnership with CIHI—who we just heard from—who will help us work with probably a much more progressive methodology than what we've used in the past.

One of the documents you have before you is a Loyd study completed in 1996. It gives you the basis for rates and for development of the current rate structure. Along with that, we did look outside, especially to B.C., because they did have some rates as well, and although these are not exactly the same as what they have in terms of costing, they're in the same ballpark, so it gave us the reassurance that we were not out of line in the studies we had done.

We've often worked on our rates in an outline process through consultants, but we're trying to align ourselves now to the broader process of information that's provided via hospitals to CIHI in order to come out with more progressive rates.

Where we have no data or where we can't get data, we tend to use what we term the “host rate”, which is the provincial per diem for that particular facility. That is something the committee does not get particularly involved with, other than establishing a fairly simplistic methodology.

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Generally, we work on consensus. We've reached consensus that the rates for high-cost procedures for transplants have been accepted in ICUs by all jurisdictions when we're talking about people who go outside of their own province for a transplant. These are the rates we have in place right now. The conference of deputy ministers approved the overall process in 1987, and we've just managed to update it over time. That too is in part of your brief.

You'll see how the rates have changed over time. Generally they've gone down. They're meant to represent fair compensation for services rendered by a province to a resident of another province, with both sides in agreement. These rates have been in effect since 1996, from the Loyd study I talked about.

In terms of some of the issues, though, that came out of the Loyd study, which went beyond these rates, we began to look at some of the costs related to donors, actually, and at the relationships between the billing partners, which included not just the provinces and the hospitals, but also transplant centres themselves.

Rules of application have been developed by our committee for billing purposes for organ transplants. I'm trying to make this as simple as possible. In essence, donor costs are paid for by the province in which you are insured. If I'm a donor, I'd be paid for those costs associated with identification, and maintenance would be through Ontario and would be paid at a per diem rate—depending on how long I was there.

The recipient costs really are the ones that have been probably the most well developed in terms of the high-cost rates that we have developed, the ones that I just showed you. Organ procurement and organ transplantation are essentially included in those rates and are billed to the home province of the recipient. The transplant centre would bill Ontario and Ontario would bill Alberta, if it was an Alberta recipient, at the rates I showed you.

The Chair: Sandra, let me interrupt you for a second. Could I just clarify something? When you're talking about per diem rates, you're talking about the hospital per diem rates. Are you including the physician in that rate?

Ms. Sandra St. Germain: No.

The Chair: That's a separate rate.

Ms. Sandra St. Germain: That's correct. Physician rates are processed through the medical portion of reciprocal billing and are separate from the hospital rates.

The Chair: Do they go through the same process?

Ms. Sandra St. Germain: Yes. They would tie to the hospital rates. So wherever the hospital costs went, the associated physician costs would go as well.

The Chair: Thank you. Sorry for the interruption.

Ms. Sandra St. Germain: As I said, it's basically simple, but it can be complicated, especially if you start to add other variables.

One of the things we have come to realize is that the initial rates, especially the rates we have now, have been developed with the focus on the transplantation centre as being basically the centre that does, if not the identification, the actual receiving of the patient at some point and the testing and the work-up for maintenance and then the actual organ removal and transplantation. Transplantation centres have had a major role to play.

What we're seeing is the non-transplant centre—which came up this morning as well—where you aren't necessarily going to complete the whole range of services for transplantation. That's the centre where you start to look at donors, at how they're maintained, at the whole care program on donors and, as well, at the potential that there could be organ procurement at those centres, which would then get moved to a transplant centre.

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So I'm raising that as part of one of our directions for the future, to support more the organ donation side rather than the transplantation side, which seems to have only some reasonable costing and at least a fairly well-developed process.

On bone marrow and stem cell rates, we have just introduced these rates in September 1998, in the course of doing the work we're doing. We used to have just a broad bone marrow transplant rate. Stem cell transplants and the use of your own blood and bone marrow, and so on, for purposes of procedures such as treatment of breast cancer, raised this issue, or it was raised several times, and we've actually developed a costing and billing methodology here. Again, it can be complicated, but the bottom line is that it has been accepted by all the provinces and territories, and these are the rules that go with it.

The other thing we gleaned from the Loyd study was that when transplantation centres were acquiring unrelated bone marrow from outside Canada, they would often be hit with a very high bill. It used to be just assumed that they would cover it as part of the transplantation rate, and we have recently had that changed to be an add-on cost, so they can actually add that invoice on to the rates you saw earlier or, I should say, that are a part of these rates.

In summary, what I'd like to leave you with is that our coordinating committee—I'd like to think, because there's a federal role here as well as provincial—at least has taken steps at an administrative level to try to work through some of the issues and act on them. We have interprovincial agreements in place, and I think that was one of the surprises that occurred when we were asked to participate in the Advisory Committee on Health Services project on organ donation and transplantation and their overall strategy. I don't think it was well understood that these agreements are in place already and did not need to be in place. So this actually allows a basis for further development without actually having to develop new agreements and in fact removes the barrier for anyone who is travelling in Canada or has to go outside of their own province for a transplant.

As we said before, we have acceptance of the national rates, and we have full commitment of all provinces and territories to work on any reviews, so that you always balance. Here's the province that provides the service and here's the province that has to pay for the service because they don't have it in their province. In recent years that has been quite an area of controversy, so we've had some exciting meetings on that to balance that picture.

But the other course of looking at this really fascinating topic is that we fit into a much bigger picture. As an administrative group, we fit in after the identification, after the donor is maintained, after the transplantation. So we're a billing process. Our role is mainly to ensure that there's fair and reasonable compensation, but we will not in ourselves be able to influence the broader policies, other than to be there when they come and we can support it.

I will say, though, that even though, for your information, reciprocal billing in Canada accounts for less than 0.5% of all the billings that are carried out in Canada for hospital and medical services, just under 10% are organ transplant billings. So it shows again what Bruce said. There are transplant centres in Canada, but they are not in all provinces. There's a recognition that probably they don't need to be in all provinces, but again, it reinforces our need to be able to be on top of the rate and ensure that there's fair compensation. So that in itself has some significance within our own scope.

Recently, as I've mentioned, we've improved some of our rates and our billing rules. We're looking at adding new ones, in particular for pancreas-kidney and others that may be coming up as more common kinds of procedures. But we're also looking at, again, the methodology change to make it more reflective of actual costs. We are looking at working with ACHS as part of their strategy, and clearly they've delegated one strategy to us. We're looking at working with CIHI so we're not reinventing the numbers over and over again.

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We've also looked at the broader picture in trying to bring information together on all provincial plans and programs, what works for some that might be of value for the future and others. That study will be ready soon, hopefully. I had really hoped we could have had it for you today, but it has to go through our own process of sign-off with all the provinces and territories. Hopefully that will be out in the next week so there will be time for you to look at it.

It started with the Loyd study. It aligned our efforts with ACHS. We surveyed all provinces and territories on their current process, issues, programs, and needs. We collected data from other sources, such as CIHI and the Red Cross, because we found in doing the study that it was not an easy task to try to get information. We showed, as I said, that there is some need to improve our compensation, especially on the donor side. Hopefully that means we will fit into the overall picture in Canada, in a very small administrative role, but hopefully one that will be well supported.

Our report will go to the national advisory committee on organ donation and transplantation, on which André LaPrairie is also a Health Canada representative. Again, hopefully what we have in our report and the work we have done and will continue to do will continue to stimulate the discussion and be there when you need us to work on some of these administrative issues.

Thank you.

The Chair: Madame St. Germain, thank you very much.

Before I go to Mr. Martin, I wonder if I could pursue that question I asked you a little earlier. Do you actually break out physicians' costs from your per diem costs?

Ms. Sandra St. Germain: That's as long as the physician is billing on a fee-for-service basis. You may find the anesthetist is that way. It depends on how hospitals are arranged. But, generally, if there is a fee-for-service rate associated with that, it would be billed separately, and that is not included in those rates.

The Chair: So the costs you have on the chart I'm looking at on the last page of your brief don't include, then, the physicians' costs. They're completely different from....

Ms. Sandra St. Germain: That's right. They're added to.

I guess that's one of the difficulties with getting data. Because we have a coding structure for billing purposes, we can pull out the high-cost hospital rates, but for medical services, we can't, because it doesn't have that coding structure. I think that's one of the interesting aspects of working with CIHI; we can start to work with more detailed data and perhaps get a better picture from that angle.

The Chair: So you're telling the committee that this is a work in progress in terms of narrowing the gap in that information vacuum.

Ms. Sandra St. Germain: Yes, in particular for interprovincial billing.

The Chair: So Ms. Parsons, who is still here, would probably say, yes, we're doing that, right?

Ms. Sandra St. Germain: We talk.

The Chair: I'm sorry to have taken up this time.

Mr. Martin.

Mr. Keith Martin: That's okay, Mr. Chairman. I owed you one.

Thank you, all of you, for coming in front of the committee today.

Dr. Singh, there are two groups of thought that we've heard in this committee on the issue of xenotransplantation. Early on, one group from the United States said that xenotransplantation is safe; we have a 30-year body of evidence to look at, and by all accounts it is safe to pursue. The other group said, no, we must proceed with a great deal of caution because of the risk of slow viruses getting into our population, not to the extent that it's going to affect the patient requiring the organ, because they'd be dead long before anything happens to them, but primarily because of transmission within our species.

I'd like you to tell us if you think xenotransplantation is safe.

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There is a second question I'd like to pose to you. I found it intriguing to look at the figures in terms of research. With the government putting more money, both in 1997 and 1998, in their budgets toward research, I found it remarkable to see that the amount of money was so low. Is it that the MRC is not investing in xenotransplantation and is choosing to put its money in other things, or has your money actually globally gone down? That would be counter to what my understanding is at this point in time.

My next question is in terms of determining whether xenotransplantation is safe, and in the private sector funds I see the $2.5 million you have there are public funds. They don't include private funds.

Dr. Bhagirath Singh: That's correct.

Mr. Keith Martin: HPB would be the one to go and oversee whether or not any xenotransplantation activities are safe to be introduced into human populations. Do you know if they have money to do this? Are they observing this at all?

Dr. Bhagirath Singh: Let me start with the funding issue first, because it's clear that priorities are set, not according to what is needed but according to research that is current and that is ongoing. In many cases, the lobby groups affect the funding, not in Canada, but more in the United States. But it's true that MRC certainly has gotten more money, and there's no question that they're devoting more resources toward all kinds of research.

Certainly, it will be up to this committee to make that recommendation that transplantation is an area where more funding is needed. Certainly there are lobbying groups of all sorts, from cancer to diabetes to heart and stroke and so on, so those national priorities have to be set at some point. For transplantation, I think this is the time to set that priority.

Mr. Keith Martin: So would it be fair to say that MRC has suddenly dropped funding for xenotransplantation, or are they just diverting it to other places?

Dr. Bhagirath Singh: MRC has no global policy of funding research. They fund whatever research comes forward before them, for that possible research. However, having said that, there has to be some sort of a priority as to what is important. I found the figures very low for the area of xenotransplantation.

Mr. Keith Martin: You can hardly clean your test tubes with that amount.

Dr. Bhagirath Singh: You're absolutely right. I can give you the numbers for the United States. They're going from $294 million to $331 million for the next fiscal year. I think we are far behind in this research in Canada. Not that we don't have experts. I think the experts have to be lured into working in this area of research. Many of them simply don't have the time or interest to pursue it if there is no funding for this type of research.

Mr. Keith Martin: One of the big questions is the ongoing debate—is xenotransplantation safe or is it not, to the best of your ability?

Dr. Bhagirath Singh: Well, according to the best of my ability, the answer is somewhere in between. The answer is we don't know whether it's safe. The reason is that we don't have enough information. Whatever information we have is, it's safe up to a point, but nobody has gone to that point where you have asked the question, would the recipients of those organs be exposed to those sorts of challenges? The answer is, we do not know.

The time is right now to actually get into that debate and ask in a cautious, maybe first a phase one clinical trial, are these transplants safe? This is because we can control them. We can monitor them and we can assess the risk, given the technology in the current climate.

Mr. Keith Martin: To my knowledge, there is no record of any transmission of any slow viruses to the human population or in fact any other disease through xenotransplantation. To my knowledge there's no evidence to show that this has ever happened.

Dr. Bhagirath Singh: Well, it's true that we have evolved with the animals. I mean, we have been exposed to pigs and sheep and cows for billions of years of our evolution. So to say we are not exposed...we are exposed. However, we haven't seen those transmissions.

But there are risks that you probably know from the recent study in England that related to CJD virus. There are risks, and I don't think we can completely ignore those risks. However, as you said, there's no direct evidence that those sorts of things exist with organ transplantation.

Mr. Keith Martin: Just to get back to your last point, with respect to the slow virus, Creutzfeldt-Jakob disease, is there any evidence to show that Creutzfeldt-Jakob disease is being transmitted from a non-human animal species to the animal species?

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Secondly, with the bovine encephalopathy, was there any evidence to show that...to my knowledge there is no conclusive evidence that demonstrates that either of those two slow viruses are being transmitted or have been transmitted to the human population by any mechanism.

Dr. Bhagirath Singh: It's by conjecture. There's no direct evidence that these viruses are actually transmitted through that route. It's all based on circumstantial evidence that these things have actually happened. In my view, xenotransplantation is safe, but it is something we all have to wait and see, and the experts in the field have to actually do those studies to come to a conclusion. But to stop these trials now, to say they're not safe, I think is premature because we have to have that evidence that these things actually are not safe.

Mr. Keith Martin: Thank you very much.

The Chair: Dr. Singh, you're making a real case for continuing—and I use the word “continuing” deliberately—research in xenotransplantation, but to pick up where Dr. Martin left off, what does $82,000 buy in terms of research in xenotransplantation?

Dr. Bhagirath Singh: I'm afraid not very much. But the point was made about whether there is a role for the pharmaceutical industry to actually look at that. The basis of research is not the pharmaceutical industry. I think they exploit what we dole up in our labs, in the universities, institutes, and so on. You cannot completely rely on the pharmaceutical industry to deliver you goods if we don't do the research.

You're absolutely right. If you look at the transplantation numbers of how much money Canada spends on transplantation research, it's not enough. I mean, $1.2 million total funded by MRC for transplantation research I found a very low figure.

The Chair: Let's go back to the area of conjecture, and the conjecture being equated with caution, if not perhaps fear. Members of this committee have indicated in both public session and private session that there is a public concern about research in xenotransplantation. The concern is that the ethics associated with that research and the protocols associated with that research are not so clear yet, nor are they so well defined, as to give the public the comfort level it needs, that perhaps someone like Dr. Martin from a more scientific approach already has. That is, we're not going to have a transmission of viruses from one species to another, but members and the public feel that the research is going on at fairly extensive levels already. Is somebody hiding things from us?

Dr. Bhagirath Singh: Well, not really. Research is a tough business. It may take one year, it may take five years, it may take ten years before we can answer that question. Nobody is hiding anything. The fact is it is a slow process. We have to go through animal studies to eventually clinical trials. I think it would be premature to say that we have all the studies done and let's start the clinical trials. The answer is we have to proceed very cautiously and look at all the options, and if the only option that exists for a patient is to have a xenotransplant, why not try that option?

I think the patients are willing to take that risk, and I think the question is, is there a risk to the general public? I think that is the primary motive for a lot of us to actually ask for moratoriums or to stop doing trials. The fact is, unless we expend time and money on this research, we will not have the answers, and 10 years from now you'll have the same issues we have today.

So I think we have to proceed, and the point is, why in Canada? It's going on all around the world. Japan has just committed $2.5 million for xenotransplantation research. Looking at our effort of about $35,000, you can see how far Japan is ahead of us. So in many ways I think it's a global effort. It's an international effort. Research is not a local enterprise, but if we don't do that here, who will do it in Canada? I think it is our mandate and the universities' and MRC's to fund that research and find the answers for the questions you posed.

The Chair: A moment ago, in answer to a previous question I posed, or maybe that Dr. Martin posed, I thought I heard you say that the Health Protection Branch and Health Canada really are not involved in either the research directly or in the monitoring of xenotransplantation research. Did I hear you incorrectly?

Dr. Bhagirath Singh: Well, Health Canada about a year and a half ago mandated a meeting on xenotransplantation where they actually brought in experts from all around, and they brought that issue to be discussed. But in terms of monitoring, you heard the presentation about transplantation. I don't know anything about xenotransplantation.

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There have been meetings regarding that issue, but whether it is on the table, whether they have approved any funding for this, I do not know, because I don't actually work in that field directly.

The Chair: Just before I go over to Mr. Jackson, of the moneys that you indicated for transplantation that come from the Medical Research Council and from the total funding, how much of that funding is directed to the study of the transplant issues that we've been dealing with, such as the criteria for allocation of organs, quality of life of an organ recipient, and maybe clinical outcomes?

Dr. Bhagirath Singh: I don't know those figures because that's not my expertise. The numbers you have from the MRC are...when they ran their database for transplantation, that's the number they gave me, that they came up with. So I presume whatever they spend on transplantation includes everything that is in front of you. Generally, I'm concerned about the actual research dollars spent on patients or experimental therapies.

The Chair: I just noted that the numbers you gave us went from $2.4 million for transplantation in all of Canada, to $82,000 for xenotransplantation. It seems to me—I hope my colleagues will forgive the conclusion that I would draw—if you want to suffocate research, you don't put any money there. Is that a fair assessment, or am I reaching?

Dr. Bhagirath Singh: Well, I wouldn't go that far, that it's a deliberate effort to suffocate research. I think that is a priority that has not been put forward as the research Canada should be engaged in. Why? I can't answer that question. I think a lot of it has to do with the experts in the field, people who work in that area, bringing them into working on transplantation. It is a task and a challenge. As Mr. Martin might know, scientist-researchers are a rare breed, and I think they are becoming rarer because of our funding crisis.

I must thank the committee, because I think you have actually turned the figures for research in the last budget, which is hopefully going to benefit transplantation and all other research.

I think probably, with the new initiatives, the Canadian Institutes for Health Research can incorporate a research institute to do organ transplantation. This is an area of growing need and interest, and the new technologies will come in from this—stem cells or cells that can grow organs in test tubes. These are all going to cost a lot of resources, and I think we all have to look at the future, not the past, where we were. The question is where we are going now, from here on.

I think this is a watershed, because I don't remember this kind of debate ever happening on this scale, and I think if you make that point, that research is where the effort has to be put for the next 20 or 30 years in Canada, this is the time to do it.

The Chair: Thank you, Dr. Singh.

I accept on behalf of all the committee members the confidence that you placed in this committee's ability to influence the minister and the government. I accept on their behalf all the accolades for the extra $550 million that the MRC will receive over the next three years.

I think Dr. Friesen and his associates never dreamed, in their wildest moments, that they were going to get anywhere near that kind of money. So they have it, and I hope the research community will do good things with it.

Mr. Jackson.

Mr. Ovid L. Jackson (Bruce—Grey, Lib.): Thank you very much, Mr. Chair. I thank our guests for being here.

I have three questions, one for Dr. Singh and one that perhaps the other two guests, Bruce or Sandra, might answer.

I was just discussing with my colleague here that I read in this morning's paper that an egg was transplanted, I think, to the testicle of a rat and then transplanted back to a person. I wondered about the ethics of that, and how that works in terms of transmission of disease from an animal to a human being.

Dr. Bhagirath Singh: Well, as we discuss this issue, is there any evidence that these actually are real risks? I think we will find these risks described theoretically, but in a practical sense, unless we do these kinds of experiments, we won't know.

You asked a question about ethics. I'm not a priest and I can't give you an answer about that, but from the patient's perspective, I can tell you if I am a patient and I have no other options.... And it happens all the time. People are prepared to take many risks, and I think this is a risk we all have to accept until we find that these are actually really serious problems and we should stop doing trials.

I think the answers will come from research and nowhere else. I hope in the next twenty years we will not be talking about xenotransplants, but we will be talking about organs and cells grown in tissues or test tubes and being transplanted.

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Mr. Ovid Jackson: We've made a lot of progress over time, and obviously transplants and so on work. Are you saying that when we originally started some of these experiments, we actually were taking risks and we still don't know the ramifications of them?

Dr. Bhagirath Singh: You are absolutely right. I think there is always a risk. Those who get transplants know that if you get organs from a donor infected with whatever, that is actually transmitted to the recipient. The risks have always been there, and I think you have to look at the best possible outcome. If you have a life-threatening disease and there is no other option except transplant, would you accept a minimal risk? Hopefully, we can monitor those risks over time so that you are not able to get to the point where that deliberately infects everybody else around you. I think that concern is certainly there, but I think it is a risk worth taking. If you asked the patient, the answer would be yes, and if you asked their family, the answer would be yes.

Mr. Ovid Jackson: Except that it always comes back to the government when it goes wrong, right? The guy's going to die if he doesn't get blood. He goes and gets blood and it's contaminated, and somebody gets blamed. Anyway, we shouldn't go there.

I have just a couple of questions with regard to the collection of organs. For instance, when we collect an eye or a kidney, are they disposed of right away or can these body parts be stored? Is there a shelf life on these things? Does anybody know the answer to that question?

Ms. Sandra St. Germain: I won't pretend to know that, but there are time limits for a number of things. I think corneas have a longer shelf life than hearts do, but I'm not really sure of that. But I will say that we do not have a rate for what you had referred to in the paper today.

Dr. Bhagirath Singh: If I can answer that question, there certainly is a time limit. Actually, there's a very critical phase when you retrieve an organ from a donor, and I'm sure Dr. Martin can attest to that. These times are from hours to maybe a day or two, but no more. You can't really preserve these things. It's an area of research that I think we should think about. But at this point I think the shelf life for organs is very small.

Mr. Ovid Jackson: Does anybody have the statistics? Do we have people coming here to get transplants or going other places to get transplants? Do you have any statistics on that?

Ms. Sandra St. German: Yes, we do, and in the brief we provided there is a summary chart on one year's data we were able to collect. Essentially, about 9.2% of all transplants in Canada cross borders at some point

The Chair: Do you mean provincial borders?

Ms. Sandra St. Germain: That's correct. Our scope tends to be in Canada within all of our jurisdictions. So that is in the document. In the study we are just completing there is more information on that as well. So, hopefully, that will be of help.

Mr. Ovid Jackson: So you're talking about provincial borders, not inter-country, from one country to the next, or from the United States into Canada.

Ms. Sandra St. Germain: Yes. The only information we've gathered there has been for unrelated bone marrow, because we had an issue on costing, and there are some statistics on that. But they're snapshots. I think, as we mentioned to the CIHI representative, we need better information over time. But we're working with what we have now and some of the responses we got from the provinces.

Mr. Ovid Jackson: Thank you.

The Chair: Thank you, Mr. Jackson.

Ms. Minna.

Ms. Maria Minna: Thank you.

I want to go back to Dr. Singh for just a short while, and then I have a couple of questions for Ms. St. Germain.

Just to go back for a moment, with regard to the xenotransplantation, you're talking about a patient wanting it because their choice is to die or to have a transplantation but that there is a chance of infecting not only that individual but also society. I understand the individual wanting to take the chance, but I imagine society wouldn't want to take the chance. You may be saving one person for a short period of time but in the process affecting a number of other people. This causes me to ask some questions.

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You say that ought to be done, that if the person says yes, then we should do those sorts of tests. But how do we control the possibility of the spread of diseases, if there are any, and who makes that fundamental decision? Do we allow the patient to make it or does society make it?

That brings me back to the question of ethics. You say you're not a priest, but it has nothing to do with religion; we're talking here about ethics and protocols in the area of science and in the area of how far we go and so on.

Can you clarify that a little bit for me and be a little more specific on what your position would be in those things?

Dr. Bhagirath Singh: They show up for xenotransplantation and, as I said, it is a question of whether it is a risk worth taking for our society, for all, not just for the patient. That question can only be answered if we have all the answers. The question is, how long should we wait to get those answers? Should it be done tomorrow, we'll have everything safe and we should proceed. The answer is not going to be something we can answer in a day or two, or a year or maybe five years. I think it is a risk that will always be there until we know the answers for sure. It may be ten years before we know.

You may say that you may infect half of the population if that's the risk. I think that's why we are saying caution. You have to monitor these patients. They cannot simply go out into the streets and into the community. I think we will be continuously monitoring them for at least the first few years, because that's the kind of procedure we are embarking on, and we do not know those risks. The question is, should we do wholesale xenotransplantation or should we do controlled trials, where you have a small population of patients, whom you monitor and see whether the risks are there? Are there real risks and can we monitor the risk? I think the technology is far ahead enough that we can monitor those risks. We can look at those viruses or other infections that may come out of it, and it won't be very long; I think maybe a year or two years of monitoring may give us that picture.

Am I absolutely sure this is the only issue? The answer is I can't be because we haven't been there; we do not know what the risks are. Is it a risk worth taking? I think given the technology and science and our health care system in Canada, we can monitor these situations and probably get a clear picture.

Ms. Maria Minna: But are there protocols in place now or certain ethical procedures within the research that one must follow at this moment?

Dr. Bhagirath Singh: For research, absolutely, there are protocols. Within each hospital, within each university system, there have to be human ethical reviews. Health Canada is setting up the inter-hospital independent task force—in fact they have a task force. They have been working towards it. There has been a national meeting on xenotransplantation to exactly address that issue. But have they come to their conclusion? The answer is, we are all into that grey area of whether it is a risk worth taking and we haven't come up with a solid yes or no answer.

Ms. Maria Minna: Can you give me an idea of what kind of xenotransplantation we're ready for right now, or are there any? What can be done tomorrow?

Dr. Bhagirath Singh: The only one that is considered—that is, that the xenotransplantation committee considered—was pig to human. It seems that these are the most likely compatible type of transplants. We're talking about pigs in a very safe environment, genetically monitored. We're not talking about wholesale transplants of all sorts of organs from all sorts of species. Virtually pig to human is the first trial I think we're looking at.

Ms. Maria Minna: That you're ready for.

Dr. Bhagirath Singh: That we probably are ready for.

On the question of ethics, I certainly don't know the answers. If I'm a vegetarian, maybe I have a different perspective. If I don't eat pork, I may have a different perspective. If I don't eat beef, I may have a different perspective. I think those have to be individual decisions and I don't think society should impose ethics on everyone.

Ms. Maria Minna: I have one final question, if I could, Mr. Chairman, to Ms. St. German.

The recovery of cost from hospitals to the host province, or from the province to the host province, makes me think of one thing, and I'm wondering whether this is true. We heard during this testimony that in B.C., I think it is, where they have a pot of money where the hospital is reimbursed specifically for the transplantation, it doesn't come out of its base budget. Then, of course, that province would be reimbursed by the host province. But there are provinces, such as I think in Ontario, where there isn't another provincial budget, it comes out of the hospital's existing pot. If there's no other host because the person is from that same province, then those hospitals don't get recovery.

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In essence, at the moment we have a two-tier system in a way. Some hospitals are getting cost recovery above their regular budgets because of the structure and some hospitals are not. Am I right about that in this country?

Ms. Sandra St. Germain: Yes.

Ms. Maria Minna: Your recovery is from province to province, not to the hospital.

Ms. Sandra St. Germain: Yes. It's province to province. With respect to the provincial policy, I guess that's why we say we're very much a small scope of the broader issues, in that we see the need, I think, for the provincial policies to be developed further. How consistent are they? I don't know. How integrated are they? That has come up time and time again.

Saskatchewan just began something during the course of our study. Quebec and New Brunswick seem to have a focus on providing money over and above the global figure to support those costs. Those are provincial decisions, and how they work through.... You're correct.

We've tried to just develop a process that works for people who are going for interprovincial services, but you're right. Our concern would be that we would come up with the best rates in the world, the most reflective, but that they would only cover 10% of the services. The rest are still hampered by whatever is provincial policy and billing processes.

Ms. Maria Minna: Thank you.

The Chair: Thank you, Ms. Minna.

Mr. Martin.

Mr. Keith Martin: Thank you very much, Mr. Volpe.

I have one quick question, Dr. Singh. You mentioned a point that I'm sure is a very sore point with you and your colleagues. You mentioned that private laboratories derive many benefits from the work that you and your colleagues do and profit greatly from it. I would like to know if you and your colleagues have seen a way in which, through patenting or some other method, the private companies that are deriving benefits from the research you've done would have a responsibility, an obligation, in fact, to pay you a percentage of those profits, or a way in which a lease or a patent of some kind can be organized so that you and researchers can derive the financial benefits from the work you've done.

Dr. Bhagirath Singh: We have been more aware of some of these concerns and issues over the last few years. Canadian medical discoveries...one was actually established in that response and MRC was initially involved in supporting it, financially supporting the concept that discoveries made in Canada actually develop into industry in Canada.

I don't want to go into the history of what happened to drug patent laws in Bill C-22, where we were supposed to get a fair shake of investment for our universities and laboratories. Actually, that never materialized. The fact is that not all the benefits return back to the researchers and universities all the time.

Is there a mechanism to change that for the future? I think we are talking about new and small start-up biotech companies. Universities are involved in that. Hospitals are involved in that. I think we are looking at a future where maybe there's a possibility that some of these investments actually will come back.

Mr. Keith Martin: Is there legislation that can be put forth from a federal perspective that would enable you to do that, that would give you the power to derive benefits from private sector initiatives that actually are rooted in the work that you have done?

Dr. Bhagirath Singh: Currently the process is that each institution has its own policies on how it deals with these issues, on whether it has patenting rights or it actually sells the technology. Each institution is aware of these issues. I don't know whether new legislation will help. I think we probably have to enforce what we have now and look at and encourage the private sector to take this very seriously, returning investments they derive benefit from.

Mr. Keith Martin: Thank you very much.

The Chair: I thought you were going to say Bill C-91. You went far back to Bill C-22. I suppose people at Health Canada probably don't want to hear either one of those two words—or bills. Thanks for making the reference.

Madam Redman.

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Mrs. Karen Redman: Thank you, Mr. Chairman.

I just want to go back to a previous issue Dr. Singh dealt with, and that was the bioethics piece. One of the things we've heard other witnesses talk about is the need for public debate. I was just wondering if you could comment from your perspective. How do we get that into the public arena so that we're engaging people in a full discussion of xenotransplantation as well as other issues?

Dr. Bhagirath Singh: About 24 years ago the same debate took place when the recombinant DNA technology came on board. It was a very fierce debate, more so in the U.S. than in Canada. I think we ran through the same issues of how safe it is, we are going to be creating monsters out of this new technology, and so on. The public came around and eventually, with a balanced perspective, gave a limited go ahead. In retrospect, we found that was a debate on something that was of no real danger to anyone.

How do we engage the public? I think that issue is something we should be looking at, at the political level. I don't think on my side of the table we are prepared to bring in the public and engage in that debate. I think the issue is an emotional one. I don't think it's a scientific issue. I'm not saying that all scientists agree on this issue. I think they are also divided, but they're not divided because of ethics. I think they're divided because of the challenges of infection and so on. The ethics issue is something we as a society have to come to grips with. I'm sure that if you give choices to well-informed people, they will come up with well-informed answers. I don't have a magic solution to this, but I think it's something we all have to think about.

Mrs. Karen Redman: With regard to your response that well-informed people will make well-informed decisions, do you have an opinion on how we can inform the public in a meaningful way in order to give them the good information? You said this is something the medical field maybe doesn't want to own, but they obviously have to participate in it.

Dr. Bhagirath Singh: They certainly have to be there, because they are the ones who actually.... In fact, the debate going on right now is among researchers. On the one hand they're saying there should be a complete moratorium, and on the other side they are saying no, let's proceed. The exact same debate happened with the DNA technology.

I think the answers are somewhere in the middle. I think we should proceed very cautiously. We should tell the public there is a definite risk with this procedure and ask if they are prepared to take that risk for the long-term benefit of society. I think those are the real issues, and I'm not an expert who can address these issues at this point.

Mrs. Karen Redman: Thank you.

The Chair: Thank you, Madam Redman.

Dr. Singh, one of the reasons some of these questions are coming up is that the committee has been raising a lot of these issues in private, and, unfortunately, some of the members who have been very interested in raising these issues aren't present today, although they will be reading the record rather attentively.

I would like to switch back to Mr. Davis and Madam St. Germain for a moment, if I could. I wondered if your committee was able to identify the costs of procurement that are not currently covered by the existing billing process.

Ms. Sandra St. Germain: We've been trying to unbundle some of this, because the rates we have now are fairly all inclusive, except, as we said, for the medical services. Previously, Gary Cooper referred to the Joint Policy and Planning Committee, or the JPPC document, and they are trying to do that. I gather Saskatchewan was mentioned as having identified around a $6,000 to $7,000 or $7,000 to $8,000 cost. That seems to be consistent, but again, we don't have that data right now. That isn't something our group has gone into. We're actually hoping to link to these organizations so that we're not repeating the same process, and also working with CIHI. If they're getting hospital-based data and working on case cost mixes with a much more sophisticated methodology, then we hope to get closer to it. But the difficulty seems to be what's under the global budget now versus what isn't, and that is at a provincial level as to how well they feel they're funded for many of the programs.

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The Chair: I want to choose my words carefully, because I don't want to use any charged language, but I wonder whether that leads to any inequities in the system in, for example, the access procedures of transplantation. For a national health insurance system—let's call it the Canadian Health Act—does it give you an opportunity to track or to monitor any of these “inequities”? That's the word I'll use; interpret it as you will.

On other occasions, we've talked about the availability of coverage for some reproductive tissues, so some procedures for fertility, as an example. I'll use those as examples rather than go on to organs. But do you have the ability to track those inequities?

Ms. Sandra St. Germain: At this point I would say no.

One of the issues brought forward by ACHS was organ sharing, and I'm assuming that's a part of that. We certainly have heard, in the course of our survey, from a couple of provinces who feel they donate a lot, that their residents provide a number of organs, but they don't necessarily become the recipients of organs of that kind. That is actually beyond our scope, but it is something that the advisory committee has identified as an issue, and I think that goes forward to the national advisory committee.

What we've tried to do is pull out what data we can to show where things are happening, without being evaluative on that. So our focus has been on the rate setting. The question is, as I said, if we developed rates that worked well interprovincially but were a lot higher than what a provincial hospital might think they're getting, there's the potential again to have a double standard. So we want to make sure we're not creating that.

I think the bottom line comes back to who needs the service at which point in time, and it's the bigger issues around who's a donor, who's in need as a recipient, and then our process just follows that in terms of compensation.

The Chair: On a matter of compensation, this might come under the rubric of comprehensiveness under the Canada Health Act, but if you have a recipient who has undergone the procedure of transplantation, that procedure for the recipient doesn't really end in the hospital. The moment the recipient leaves the hospital, the recipient assumes virtually all of the costs for care and for medication. Does your committee track that as well?

Ms. Sandra St. Germain: No, we're very much focused on the hospital and medical side, although we are trying to look at the broader picture, especially related to the home, not necessarily the drugs but the home care.

Somebody who goes to London for a lung transplant is going to be in that city for a while, for ongoing monitoring, and so on, and so a lot their costs don't fit under medical and/or hospital and/or out-patient.

Those are other issues, but again, they span our scope to bigger issues. But we are looking at that in hopes that other committees might be able to take on some of our findings.

The Chair: Excuse me for interrupting, Sandra, but does that issue come up when the provinces express differences of opinion on the billing practices?

I don't know whether this is the case, but assume for a moment that it is, that province A actually covers under its program the monitoring, post-hospital procedures, whereas the recipient's province does not.

Ms. Sandra St. Germain: I'm not quite sure....

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Mr. Bruce Davis: I remember examples of a smaller province, for example, versus Ontario, where the rate that existed might be all inclusive, pick up the procurement and all the other stages, but then a province like Newfoundland, for example, might say, well, we want the person home after that, so we can treat them in our home plan. Therefore, that whole rate shouldn't be a benefit to that province because they're not giving the post-treatment care. Those sorts of questions have come up, yes, and been resolved through our committee.

The Chair: I imagine it comes up as well when you have that request for billing—I don't know whether it does or not—that goes outside Canadian boundaries. Is that an area that you touch on at all?

Ms. Sandra St. Germain: Not really.

The Chair: A recipient goes to Buffalo, for example.

Ms. Sandra St. Germain: No, that becomes provincial.

The Chair: It's an issue for the province.

Ms. Sandra St. Germain: I guess the only light I can shed on the previous question is that many provinces, when they are referring a person out because they don't have the services in their own province, basically will make sure that if something they require isn't covered, they will cover it. That may even include travel. But again, each province tends to have its own policies on that. But I think if you go for a transplant, there's still a protocol that you get drugs for a certain period of time. It's when that time ends and it's pretty well considered that you can go back home and live your normal life that it may be more in question.

It's a good question, but our focus has been more on the procedure.

Mr. Bruce Davis: Maybe I could add too that I know provinces do have data on out-of-country costs. That wouldn't be for just transplantation, but also cost of residence when they're out of country getting services. I have seen data like that from certain provinces, for sure.

The Chair: Still on the question of accessibility, you are no doubt aware that in some provinces, certain procedures, for example skin grafts, are considered not necessarily therapeutic but cosmetic. Do you track that as well, where you have differences of opinion on where these procedures fit?

Ms. Sandra St. Germain: Again, the decision-making of that is at a medical-clinical level and a provincial level. In reciprocal billing, one of the exclusions is cosmetic, so someone has to make that determination. If it is not considered cosmetic, then there would be a billing interprovincially. It wouldn't fit probably under any of our rates, because it hasn't come up as a specific issue where they want to have that identified. If it was cosmetic, that would fall outside of what we do, as it would under probably most of the health insurance plans.

The Chair: Dr. Singh, I thought I saw you raise your hand.

I don't have any other questions. I asked those—you may not think them relevant—because in the context of some of the things we've been considering, we thought they at least needed to be raised. I thank you for giving us those answers, both Madam St. Germain and Mr. Davis. Dr. Singh, thank you very much for your frank response to some of those questions on ethics and research.

On behalf of all the committee members, those present and not, thank you very much, all of you, for having shared that with us this morning.

The meeting is adjourned to the call of the chair.