HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Thursday, February 4, 1999

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[English]

The Chair (Mr. Joseph Volpe (Eglinton—Lawrence, Lib.)): Colleagues, ladies and gentlemen, thank you very much for your attention. Pursuant to Standing Order 108(2), a study on the state of organ and issue donation in Canada, hearing number two is about to begin.

Today we have with us three panels. The first of these panels consists of two individuals, Dr. Rolf Loertscher, who is the president of the Canadian Society of Transplantation, and Ms. Jane Drew, the president of the Canadian Association of Transplantation.

Welcome, both of you.

As well, with us today we have a member from the other place, the Senate. Senator Simard is here in an observer capacity. We welcome him to these hearings.

Colleagues, as per the norm, I'm going to ask our two witnesses to present briefs. I think you all have copies.

Dr. Rolf Loertscher (President, Canadian Society of Transplantation): Thank you, Mr. Chairman.

The Chair: You may begin and go on for about five minutes or so and then we'll go into question-and-answer dialogue. The floor is yours.

Dr. Rolf Loertscher: I'll be brief, thank you. I'm the president of the Canadian Society of Transplantation. I thank you for the invitation to appear.

The main issue to be studied here is the fact that waiting lists for patients awaiting transplantation have grown by 50% over the last five years. At the same time, at an annual rate, we can only transplant about half of the patients who are on those waiting lists. Therefore, we have a growing discrepancy between demand and supply. This is the main issue.

We have to see this issue, however, in the context of how transplantation care is delivered in our country. We have to realize that all transplant programs were conceived 20 to 30 years ago and are local initiatives. They continue to function as local initiatives and we really do not have a national framework for these programs to function in.

The exception to this is that programs engage in organ sharing, but otherwise there are local customs that dictate how transplant care is delivered.

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I have summarized in my brief to you a number of issues besides organ donation that are relevant and need to be addressed eventually, but I will focus my discussion here on the donation process.

I think it is very important to realize or conceptualize the course that a patient is taking as he or she is admitted to the hospital in most likely a critically ill condition. A patient needs an acute care team for his care, and the purpose of that team is to save the life of that patient. The patient and the family must have trust that this team has only one purpose, that is, to save the life of that patient.

At some point, the patient will take a turn for the worse and become brain dead. At that point, this acute care team would normally withdraw acute care and stop activities. However, for the purpose of organ donation it is very important that we remain active and maintain vital functions like circulation and respiration. This transition from acute care to donor management is a very critical issue.

We cannot expect acute care teams to wear two hats and have two functions, because that creates a conflict of interest, both factual and perceived. It can be perceived by families, who will then think, “Is that team really interested in obtaining organs or is that team interested in saving the life of that patient?”

For that reason, we need a second team, which I would call the donor management team and which has no function in caring for the alive patient. The team should be consulted each time there is a comatose patient in a hospital and should be asked to say yes or no as to whether a patient should be referred to them in a case where brain death is diagnosed. We do not have these donor management teams in Canada. If they do exist, they exist in a very rudimentary form and they are not trained. There is a great lack between what we need and what we have.

The third component in this process is the organ procurement agency. These agencies do exist throughout the country on a regional basis. The function of these organizations is really to identify the best possible recipients and to take care of the logistics, such as making sure that organ retrieval teams can arrive on site and making sure that once the organs are removed they are transported—often flown—to distant sites. That is the function of the organ procurement agency.

And finally, not appearing in my brief is the point about the transplant team that implants the organs and takes care of the patient in the long term. We have never truly separated these functions. I believe it is crucial for the success of organ donation to separate those functions. By doing so, we will have the trust of patients and families and, therefore, consent will be easier to obtain.

How should this process of asking be conducted? It should not be up to the acute care team to ask the question about obtaining the organs. It is the function of the acute care team to say, “this person has died and is brain dead”, and leave it at that. It should be the function of the donor management team to approach families once death has been pronounced so that it is very clear to families that these are two different teams and that there is no conflict of interest. I have to emphasize this issue of conflict of interest.

What are the problems? As I said, we do not have donor management teams and we don't have trained individuals. We have not really separated those functions appropriately. We have never studied this question on a national basis, so we do not really know exactly where the donor potential is and where we make the mistakes in this process.

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We do not have any incentives because donor identification and management are not recognized as medical acts and are not reimbursed as such. We also do not have a system of penalties that would penalize hospitals that have poor performance. Finally, we do not have earmarked budget allocations for transplantation, neither at the federal level nor the provincial level.

Thank you very much.

The Chair: Thank you. That was a brief and straightforward presentation.

Ms. Drew.

Ms. Jane Drew (President, Canadian Association of Transplantation): Thank you. I would like to thank Mr. Volpe and the members of the Standing Committee on Health for inviting the Canadian Association of Transplantation to share its concerns and views. The Canadian Association of Transplantation is bringing these issues and concerns forward on behalf of the hundreds of health care professionals in Canada who work full time in transplantation.

The Canadian Association of Transplantation is a non-profit association committed to facilitating and enhancing the transplant process. This is done in an atmosphere of respect for human dignity, in partnership with others committed to organ and tissue donation and the benefits of transplantation. Membership includes health professionals involved in every aspect of organ and tissue donation and transplantation, including recovery, allocation and distribution of organs and tissues, managing care for patients pre- and post-transplant and recognizing and supporting donor families.

The purpose of this brief is to provide the Standing Committee on Health with an overview and perspective on the issues related to organ and tissue donation, safety and allocation, to familiarize members of the committee with the work of the Canadian Association of Transplantation and to suggest a possible role for government in dealing with these issues.

As background, let us tell you that Canada is unique among major transplant countries in that it does not have a central administrative system to address critical transplant issues, from organ and tissue donor awareness to organ sharing, safety practices and transplant performance. Furthermore, Canada's donation rate is amongst the lowest of all developed countries. As outlined in my brief, CAT's involvement in bringing these important issues to the attention of government ministries began as early as 1989.

In July 1995, the deputy ministers of health asked the Advisory Committee on Health Services to once again explore this issue. The working group produced the discussion document, Organ and Tissue Donation and Distribution in Canada, in September 1996.

In our opinion, while this document identified many problems with the donation and transplant process, it failed to emphasize several issues critical to donation outcomes. These include the need for an overall structure and national organized approach to ensure accountability and safety within these important health care programs and the need for governments to invest significant resources in such a structure to not only support donation and transplantation but to ensure optimal public safety. Lastly, unlike most health care services, transplantation relies on societal involvement in terms of support and participation when the opportunity arises for donation. The need for governments to support a coordinated approach to public education as a critical component of the donation process was not emphasized.

In 1996, the deputy ministers of health unanimously supported the 13-point strategy and 35 initiatives defined in the discussion document. They also provided direction for a national coordinating committee to be convened. In doing so, the national coordinating committee would take leadership in advising the federal-provincial-territorial Advisory Committee on Health Services about implementation strategies for the issues outlined.

A national coordinating committee has been struck. However, it is struggling with the process and direction necessary to move the project along. Given the complexity and the number of organizations and government programs identified as taking lead responsibility for the various strategies, we remain concerned that this initiative will not succeed. Our reasoning for this is grounded in the understanding of the major role the provinces play in the provision of health care services. In the absence of a national organized donation system, national coordination of the implementation is unlikely to be achieved.

Lastly, we are here today to once again bring these important issues to the attention of government. I will outline several issues, the first one being accountability and maximizing the donor rate.

There needs to be a system of accountability for donation performance. Accountability can be viewed in two domains, the first in the professional practice domain and the second in the health care system as a whole. Accountability in the professional practice domain would require a change in the focus that currently prevails towards donation, a change from a focus of goodwill to one of best practice to support an essential health care service.

Accountability in the health care system would also require a change in focus, a change from the focus that it is a non-issue to one of belief that organ donation is a critical and essential health care service.

Institutions must value organ donation. Organ donors can no longer be seen as a drain on the institutions. While donor care is expensive and time consuming, utilizing a bed that is already in high demand, the appropriate level of care will ultimately enhance or save up to seven and perhaps up to 30 lives if tissue donation occurs.

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Finally, we require the development of a process for measuring organ donation performance and a mechanism to address poor or unacceptable practices.

Secondly, a national structure is optimal in order to maintain standards. Members of the transplant community have struggled for more than nine years to gain government support for a national structure. Our two, small, voluntary professional organizations do not have the resources or mandate to impose any type of national system on the provinces or on the organ procurement and transplant programs. With safety standards that have not been implemented, no algorithms that support a quality, efficient, equitable and just manner for organ sharing and no resources to maintain a current waiting list, transplant patients are at a risk of disease transmission, missed opportunities for transplantation and organ wastage.

Furthermore, the current system provides no opportunity to monitor performance or investigate problem areas within organ donation and transplantation. Provincial governments have provided financial support for transplant programs but have neglected to support the organ and tissue donation process to the same level. As of February 26, 1999, there will be no coordinated national waiting list. For over three years, CAT has identified this as a serious issue requiring intervention. To date, we remain without a contingency plan.

The third issue is professional and public education. Individual transplant programs across Canada cannot regulate practices and other programs or hospitals. While CAT identified a need for and produced practice guidelines, without the authority to influence practice, utilization has been minimal. There is limited knowledge regarding optimal practices for the donation processes; as well, there are various levels of staff training, both within the organ procurement organizations and the hospitals. We must ensure that standards are identified and maintained under strict regulations for the organ and tissue donation process.

Presently CAT provides educational opportunities through a newsletter, a web site and an annual scientific conference in partnership with the Canadian Society of Transplantation. It is essential to maintain strong public support for organ donation. CAT has initiated and supported a variety of national campaigns for organ donor awareness. For instance, the slogan, “Lives Are in Your Hands; Consider Organ and Tissue Donation Today”, was adopted in 1996 and has since been utilized across the country as the theme for national organ and tissue donor awareness campaigns.

In 1998, 105,000 green ribbons were distributed across Canada. The key objective of this campaign was to create a broadly recognized symbol of support for organ and tissue donation. CAT has also worked in close collaboration with the Kidney Foundation of Canada and The Mutual Group in developing and promoting organ donor awareness campaigns. Out of such collaboration, the newsletter entitled, “Breaking Barriers to Organ and Tissue Donation”, was developed. One hundred thousand copies were circulated in 1998.

Substantial amounts of time, money and effort were invested in these campaigns by the transplant community and our partners, yet I would hazard a guess that few people here today are aware of such initiatives. Therefore, a body with authority must support public campaigns; the campaigns must gain broad recognition, be sustained over time and be evaluated for effectiveness.

Lastly, there should be recognition of donor families. Sadly, the true heroes in the donor process remain unrecognized nationally. Standards of care for families must be identified and ongoing recognition by government and programs must be a priority. Last year, CAT supported and facilitated the use of a national organ donor medal of honour developed by the multi-organ transplant program of the London Health Sciences Centre. It was presented to donor families. Only five programs across Canada were able to fund the initiative.

In conclusion, we would like to offer to the standing committee the following suggestions on the potential role for government in dealing with the identified issues.

Governments have the ability to separate donation, administration and accountability from transplantation by establishing a nationally coordinated structure to address critical donation issues and to regulate safety standards.

Governments also have the ability to establish a system of accountability for donation performance and the ability to change the focus of organ and tissue donation from one of goodwill to one that recognizes donation as a critical and essential health care service. As well, to ensure that patients are not at risk, safety standards must be finalized and properly enacted within a national regulatory framework to ensure compliance.

In order for governments to ensure that missed opportunities for transplantation and organ wastage do not occur, algorithms must be established to support an efficient manner of organ and tissue donation and sharing. Governments must also develop, support and maintain a national real-time waiting list. As well, due to the complexity of the donor process, roles and responsibilities for hospitals and organ procurement organizations must be clearly identified and standardized.

Lastly, governments must support public and professional education initiatives and must provide recognition and support to donor families.

Thank you.

The Chair: Thank you very much, Ms. Drew. I hope you weren't too distracted by all the activity that surrounds the table here. Perhaps I should have warned you earlier on that this is typical of committee hearings. But everything is being recorded.

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Normally, we have a lot of members from the opposition on this side and government members on that side. Today we have a special game plan. The designated hitters are over here. The first designated hitter is Dr. Martin.

Mr. Keith Martin (Esquimalt—Juan de Fuca, Ref.): Thank you very much, monsieur le président.

Thank you, both of you, for your concise and erudite presentations.

I have a quick question because I know there will be a lot of questions from all sides. In dealing with the financial restrictions we have today, do you think that a national organ donor registry can work in lieu of or in conjunction with the existing provincial registries?

Second, dealing with the issue of getting more people to write down their tick mark and become potential donors, do you think a mandated choice strategy—such as an attachment to an income tax form, whereby every year someone will have an opportunity to become an organ donor—would be a useful solution to address this problem? In that way, wouldn't all the information come to one central database that would be very easy to manage and where potential donors and recipients could be married up very easily?

Last, how do you see the Canada blood donor system organization, the newly constructed organization, fitting into this? It's taking the place of the Red Cross right now. There have been some significant problems, particularly in the area of bone marrow transplantation where there have been very great difficulties because of a lack of funds in this organization. Do you see this playing a part in or being removed from a national system?

Dr. Rolf Loertscher: I will start and I'll take the last part of your questions with regard to bone marrow vis-à-vis solid organ transplantation. If one looks at how these two types of transplants are given and at how much need for interaction exists between bone marrow and solid organs, one will see that there is very little. As a matter of fact, those are two activities that are conducted site by site quite independently. Maybe not from a medical point of view would there be a necessity to get the two things together; whether an administrative structure for one might be helpful for the other is something that would have to be explored. I cannot say that it couldn't work.

The other part, about a national waiting list, was already pointed out. It's crucial for the process of organ sharing that we have a national list of patients so we can allocate the organs to those who can most appropriately receive them. To give you one example, the tissue matching in kidney transplantation is somewhat more important than it is in other organ transplants. We do not have a national sharing system in place for kidneys. We virtually never fly kidneys coast to coast. Therefore, we probably deny a certain number of patients the luxury of a perfectly matched kidney.

In the United States, as you are probably aware, the UNOS system mandates that perfect matches are flown across the country no matter what. Up to 20% of their recipients receive perfectly matched kidneys, and we know the outcomes of that are much better. We're lagging behind in this regard. We do need a national approach to this.

Mr. Keith Martin: In regard to the American model, Dr. Loertscher, do you that's a very good model to adopt in terms of a national strategy for Canada?

Dr. Rolf Loertscher: I think UNOS is a good model to learn from, but I wouldn't necessarily say that the structures UNOS has put in place should be adopted as they are in the United States.

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I think we have a Canadian reality that is probably somewhat different, starting with our political structures and who is paying for what. I think we should study the UNOS system and see what is good in that system in order to use it for our own benefit.

Mr. Keith Martin: May I just have your opinion, Ms. Drew, on perhaps marrying them up through an income tax form in a national strategy such as the mandated choice strategy?

Ms. Jane Drew: Are you talking about a donor registry as well?

Mr. Keith Martin: Yes, absolutely.

Ms. Jane Drew: Again, I really think that a national donor registration system, however it is given to the public or shown to them, whether it's on an income tax form, a driver's licence or a health card, requires education. The public must be told where it is and what it's for, on a very broad scale, repetitively, so that it becomes a natural thing, like “this is my income tax form and this is where I fill it out”. Where it goes, where the best place to put it is, can be debated. A registry is wonderful, but I still think it gets down to having some kind of standard, some kind of practice guidelines for the actual requesting of organs from families at the time.

We can know how many people want to be donors and we have to make sure that if they become suitable candidates their families are asked for the donation. It's at that level that we need some kind of practice guidelines, some kind of coordinated system. We need it at the hospital level so that these people are recognized, identified and managed. We can't be certain it's being done routinely across the country because practices are so different and all hospitals differ in how they track these patients—if they track them at all.

A national registry is a great way to go, but I still think we have to get down to the root and make sure of those patients who are being highlighted, whatever system they're marked by. Marrying them with a national waiting list is the ideal way to go.

Mr. Keith Martin: Thank you.

Dr. Rolf Loertscher: If I may add something, I think that the activity of really identifying donors, maintaining them and eventually having a successful request is very much a hospital activity. We have not put any effort into creating what I call “donor management teams” that would know how to go about it. We have no process in place whereby comatose patients with a certain level of depth of coma are referred for assessment.

And if one does a review with, for example, neurosurgeons, there's a great deal of reluctance to assume that role—and they shouldn't. I truly believe that this issue of conflict of interest is very much at the heart of this. If we want to have support from the greater public, the greater public has to trust the process. That's why we have to take apart these functions of acute care and donor management. We have to put in place something that is a transition from acute care to donor management so the donor doesn't fall between the cracks, because it's very critical to maintain the vital functions. If they're not maintained, the donor is lost.

The Chair: Thank you.

Committee members, Ms. Drew's presentation is currently being translated. Members who were here a little late will not have a copy of her presentation. If you missed it, you're at a bit of a disadvantage. However, you will receive it in your office, as you will receive everything, in both official languages.

I'm going to go now to the government side and give some of the opposition members an opportunity to get themselves up to date on some of the statements made by Dr. Loertscher. Then we'll go back to the opposition side.

Mr. Myers.

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

I first of all wanted to thank you both for appearing today. I want to begin by asking both of you about what sort of level of coordination exists between your two groups, for example, in this area, and second, what kind of research you're involved in at present in the whole area of transplants and the issue that we're looking at.

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Dr. Rolf Loertscher: The Canadian Society of Transplantation is the society of transplant surgeons and transplant physicians. The Canadian Association of Transplantation is the professional association of allied health care workers mainly involved in procurement and organ distribution and somewhat—and this where I think there is this overlap that is not healthy—in donor management. Those are the two roles, and that's underscored by the fact that we have joint annual meetings with joint presentations and we attend from both sides. There's a great deal of interaction between the two societies.

With regard to research, I have pointed out in my brief—among other issues—that we have absolutely no research funds except those coming in from pharmaceutical industries. If we look at the MRC, the MRC does not have a transplant panel, unlike the National Institutes of Health, which does have a transplant panel and peer review of transplant-related research.

I can tell you that if we look at how many transplant-related grants MRC is funding annually, it's probably one or two, and those are in basic science rather than in anything that relates to organ donation.

Mr. Lynn Myers: In your view, then, that needs to be readjusted somewhat.

Dr. Rolf Loertscher: In my view, it needs to be addressed. I do not think that transplantation has fair access to peer-reviewed funds. For example, the Kidney Foundation of Canada, throughout the years I've been here, has allocated quite a lot of their funds to transplant-related research, but the means aren't the same as those of the MRC.

Mr. Lynn Myers: Ms. Drew, do you have anything to add on the research side?

Ms. Jane Drew: Our group doesn't monetarily support research, but we do support our members who may be doing research through their own organization, their own hospitals, by providing a forum to share research at the annual scientific meetings. We do provide that every year. We also have just put up a web site where ideas and research findings can be shared. We obviously don't have the mandate or the money to support any research of our own, so the research side is really just what members are doing within their organizations and want to share with us.

Mr. Lynn Myers: I also wanted to ask whether or not you had a handle on or in some way have quantified the cost of transplantation. For example, do you know the cost of doing transplants versus the cost of not doing transplants? Has that kind of study or assessment ever been undertaken? If not, should it be?

Dr. Rolf Loertscher: This has been studied and the costing has been done. A dead patient is always cheaper than a live patient. That's the reality. Some of the patients on waiting lists die. They're cheaper. That's for sure.

If we compare—and it is done particularly on the kidney side because there is an alternative therapy in the form of dialysis—dialysis costs vis-à-vis transplantation, transplantation in the first year is about the same as a year of dialysis and is very much cheaper in subsequent years. Certainly if you look at the core statistics, we have many patients who lead productive lives over many years. The patients whom we have followed the longest in this country go back 30 years.

Mr. Lynn Myers: Has this been done in other areas as well?

Ms. Jane Drew: It really hasn't been because there aren't alternative forms of care. With regard to a patient in liver failure, we can't measure that against dialysis care. It depends on the type of liver failure, etc. There haven't been any really good studies done on any other organ group. A lot of what they quote are the studies done on the kidney group because they do have dialysis as an alternative form of care. Also, costs of transplants vary. There's a wide range in what people quote as costs.

Mr. Lynn Myers: Thank you. Finally, Ms. Drew, you mentioned something very interesting in your discussion: that we should recognize and support donor families. I thought it was an interesting way of saying something that is perhaps very important. I wonder if you could elaborate.

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Ms. Jane Drew: We feel very strongly that without a donor there's no donor process. We can identify donors, we can maintain them and we can support them medically, but until we get the okay from the family, from the next of kin... It's important to point out that no matter what we sign, no matter how we decide to make our wishes known, programs will always ask the next of kin for their consent. Regardless of what the actual donor has requested, the next of kin is still asked, so the biggest message we like to get out to people is that people need to talk to their families and let them know what their wishes are.

We feel very strongly that donor families still are not recognized as the national heroes we think they are. These people, at a moment of horrendous grief, reach out and think of other people, people they don't know, people they'll never know, and they do it for no other reason than the fact that they think it's a good thing to do or they know it was the wish of the person who died.

The Canadian Association of Transplantation and the Canadian Transplant Society feel very strongly that these people need to be recognized, which is why one idea we came up with is a donor medal. We actually borrowed that idea from a Canadian family that lost a son in the States and came back with a medal and were absolutely thrilled. We saw how much this meant to the family and we thought that we weren't doing enough in Canada for these people.

Programs send out letters of thanks later on, I think, or sometimes a card, but that's about it. Again, it varies from program to program. There may be a follow-up phone call. I know what we do in our program, but I honestly can't tell you what other programs do. That's how little we know about what other people do with these families. The medal was an opportunity for us to recognize them nationally. As I said earlier, five programs across Canada gave them out last year during Organ Donor Awareness Week. They were, I think, unanimously accepted, and the families were thrilled. All the programs that did them last year are doing them again this year if they can afford them. They all have to fund the medals themselves.

We really feel that's something tangible. We're not talking about money or anything like that, but it's something tangible so that these families know that what they did meant something. We think that until we can recognize these people and support them... There are grieving processes and such that we may be able to help them with. We have programs out there to help these families. If we can routinely support them that way as well, people may be more aware of the process and more receptive to donation.

Mr. Lynn Myers: Apparently that's part of this process, this whole issue of public awareness and education, and I think that's something we should note at the back of our little books and proceed with. It's a very good point. Thank you very much.

The Chair: What I'd like to do for a moment is just pursue a question that both of you have raised; one part is related to research and the other to studies. Could you just take a moment to indicate the difference, especially in the context of what Dr. Loertscher said with respect to lack of funding from the MRC for research in transplantation? If we have a shortage of donors, can you explain to me how some of this research would be conducted?

Dr. Rolf Loertscher: I'm glad you're asking this question. It really brings me to the point that besides the organ donor shortage there are many other issues in transplantation in Canada that are unresolved but somehow related.

With regard to research in transplantation, one of the goals is to find a way to manipulate the immune response, the rejection response, and to modify it in such a way that the patient doesn't need to take anti-rejection drugs for the rest of his or her life. This would be a goal—and this is obviously a long-term goal but a very important one—that could dramatically change our outcomes, because the need for medications brings with it side effects and morbidities.

The Chair: There is a lot of ongoing study and research in xenotransplantation. I think of one program announced about two months ago that is directed specifically at that.

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Dr. Rolf Loertscher: The programs in xenotransplantation have a different objective. There, the question of organ donor shortage is taken away—from the human species to other species. In particular, as you know, pigs are being thought of as a suitable alternative species. Those are also important studies that would have a long-term impact.

The point I was trying to make is that if we find ways to deliver better care and prolong the survival of transplants—because we still have far too many failures too early—there will be better outcomes. In particular, patients who are recipients of kidneys are often recycled onto a waiting list. Up to 50% of new patients that go on a waiting list today have had a failed transplant. An important reason for the shortage of organs is failed transplants. It is very important to make progress in this regard, and we can't make that progress without the necessary research.

The Chair: So when you're talking about studies and research, then, you're really talking about some of the statistical data as opposed to some of the wet lab work.

Dr. Rolf Loertscher: Yes. I'm talking about research. We need basic science, clinical studies and epidemiological studies to look at things. I would say that if the money were there we would have the potential to collect outcome data in transplant patients nationally and formulate (a) what is really happening, why we lose patients or grafts, and (b) based on this, we could develop practice guidelines on how we could do better. It's really an entire spectrum of research that needs to be funded. At present, the funds that go into transplant research come from pharmaceutical industries. They have their vested interests as to what they think should be studied, but that's not necessarily what we always have in mind.

The Chair: Thank you.

Mr. Vellacott.

Mr. Maurice Vellacott (Wanuskewin, Ref.): I have two questions. The first is for Miss Drew, but I guess Dr. Loertscher would want to respond as well.

I'm curious about the statement that there is always—and I've known that, of course—the consulting of the family. What if we got into a situation down the road where the wishes of the donor, stated very clearly in a will, were that he wanted to donate an organ and then there was some second-guessing, if you will, or reluctance on the part of the family members?

You seem to feel that it's very important for the family to be in accord with the wishes of that donor so that we have continued trust in the organ transplant program. Would you ever see situations where you would just simply proceed anyhow? Or do we have this so legally binding that you'd say to forget it, to leave them out of the loop, that it doesn't really matter what they say, you're just going to simply honour the wishes of this donor person? How big a factor do you think that is?

Ms. Jane Drew: I don't perceive us ever proceeding against the wishes of the family, regardless of what the donor's wishes were. To be honest, in nine years of working in this field, I've never known the family to go against the wishes of the donor if the family knew what they were. That has never been an issue in my experience. I don't think it's a big issue.

There have been cases in the world where they've gone to something called “presumed consent”, where donors are all presumed to have consented; it's an “unless they've said no we think they've said yes” sort of thing. There have been attempts to follow donor wishes over family wishes. That tends not to make a big difference in the number of donors you get. The ill will that comes out of it is much more negative than any good you may get out of perhaps getting an organ. If it's against the will of a family and there's ill will, that can cause a lot more damage than what good you end up with. As I said, I don't think it's a big issue. In any case I've known where the family has been clear as to what the donor wanted—whether it's yes or no—the family has gone with those wishes.

Mr. Maurice Vellacott: So then you wouldn't really need a legal hammer to say, if in fact it's clear in the minds of the family what the donor wanted... Do you need a legal hammer that says you're going to do what the donor wants regardless of or despite what the family says?

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Ms. Jane Drew: No. If the donor family is clear about the wishes, I think having a hammer and forcing the issue would lead to more damage than good. The important thing is that the family knows what the wishes were.

Mr. Maurice Vellacott: That there be clear communication all around.

Ms. Jane Drew: That's right.

Dr. Rolf Loertscher: If I may add a comment, I don't think this issue of presumed consent is really something that our society would support. In jurisdictions where presumed consent has been introduced, it has been successful in some and not in others.

If we do look at countries that clearly have higher donor rates than we have—and Spain is the prime example, really leading the world—they have established hospital-based teams that are charged with donor identification and management.

That also takes me to the question of the donor registry. If individuals register, the issue is how accessible the information is at the time of need, that is, when brain death is declared. You have to appreciate that these events have a certain tempo and it would really require a high-powered system in order to be able to access this information.

I agree very much with the fact that we should ask families, have their support and obtain their consent. I think we can do that. The problem is that because we don't have these specialized teams, many potential donors aren't identified as such and therefore families are never approached.

The Chair: Thank you.

Ms. Minna is going to give her turn to Madam Ur.

Mrs. Rose-Marie Ur (Lambton—Kent—Middlesex, Lib.): Thank you, Mr. Chair. Having been a a nurse in my previous life, I find this so interesting. This is such a delicate situation. I can attest to that. You have to be really careful not to come across as cold and callous when a person becomes comatose and really careful not to approach the family in what would appear to be a rude fashion. That's not your intention.

In Ontario, we have what are called power-of-attorney kits. You fill out these forms, one for your personal affairs like your health care or whatever should you be unable to look after yourself, and the other for your financial affairs. Does that address the concern for donor recipients or organ donations? Would that concern be satisfied with those kinds of forms?

Ms. Jane Drew: I'm sure it's not dealt with at the moment in those forms. I've had lawyers call our office and we've helped them draw up stipulations to deal with organ donation in power-of-attorney kits and living wills and those types of things so I know it's not routinely covered. I'm pretty sure it's not routinely covered in those kits, which is why they phone us for help.

People will ask can if it be put in a will. No, it can't, because by the time a will is read, it's way too late. With regard to power of attorney, I'm not familiar enough with the breakdown of the power of attorney, but if that person has a sort of next-of-kin type of power as well, if that would be the person that the medical system would go to for consent for any kind of care, then it could be put in there as a point. If the person became comatose and had to be hospitalized or became too ill to look after himself and the power of attorney has the right to say okay or nay to health care—

Mrs. Rose-Marie Ur: Every person in Ontario has to have that done now. Whether they have it done or not—

Ms. Jane Drew: Right.

Mrs. Rose-Marie Ur: —it came into being several years ago. I'm saying that if the kit is not updated maybe that's something we could look at. Maybe for people who don't have those kits signed this could be put in there. That may be an option.

We hear from Dr. Martin about taxation—somewhere on that form—but I think it starts way before taxation, because unfortunately we need organs from young people as well and they do not fill out tax forms.

Another suggestion I have always thought of is birth registration and whether there could be some kind of allocation on that card, whereby the parent is responsible for that child up to age whatever; when that child becomes of age he or she can make the decision as to whether they support it or not. Could that also be one venue in starting up a registry?

• 0950

Dr. Rolf Loertscher: I see all of these attempts to register as more of an adjunct thing to do. My experience has been that when a patient is in such critical condition no one will run home and find the document and produce it.

Mrs. Rose-Marie Ur: With the national registry no one has to run anywhere.

Dr. Rolf Loertscher: Yes—that's what I said—if it's truly accessible. If you have a registry that functions and allows very quick access, you're absolutely right.

Mrs. Rose-Marie Ur: I would hope that's what we want.

Dr. Rolf Loertscher: If we can establish that, it could work. Still, I think we would have great hesitation about leaving families out. I think this would tell the family what the wish of that individual is. They would then either respect it or have big problems with it. If families strongly object, I don't think we would or should override that family wish.

Mrs. Rose-Marie Ur: There's another point I'd like to make. Ms. Drew, you mentioned the medal. Have we set up any organizations with families who have been donor families and recipient families so that they could interact and send out the message to the rest of the world as to how one group feels and how the other feels? Do you know what I mean? There are groups made up of triplets or twins that share their stories with the world. Do we have that kind of thing set up whereby people could share their information with people whose families have given organs so they can tell other people how good it made them feel?

Ms. Jane Drew: Certainly not officially or formally. I know that every organ procurement organization and/or hospital has donor families and recipient families that go out for them and speak to groups or to newspapers. We've had cases of individuals who have done events across Canada and will speak of that, but there is nothing official or formal. Actually, during Organ Donor Awareness Week last year—and over several years—we have tried to highlight different aspects of the donation process. In the first year we did it we highlighted donor families. There was a lot of interviewing of donor families across the country, and they told their stories. The next year we highlighted recipient families in a similar thing. As I said, it hasn't been sustained or done on any kind of large scale.

I know that certainly in my program and in a lot of other programs we use those people very heavily to get the message out. We draw on them a lot to speak to the press or to go out and speak at schools or wherever we need them to tell their stories, whether it's from one side or the other.

They are also kept very separate, though, because we can't allow them to know about each other. Recipient and donor families don't meet. A recipient family could meet a donor family as long as it isn't the donor family that got their organ. Certainly when they go out and talk together, we'll have a donor parent or whoever there and a recipient there and they'll both tell their stories. They're definitely my best-sellers. I could sit and spew out facts for hours and it might be impressive, but the public wants to see these people and hear those stories. As I said, there hasn't been any way to get those stories out.

The Chair: We'll get you back here to do that at another time, Ms. Drew. We are interested in getting all the facts and figures, believe me. We have only a few minutes left, and I'd like to share the next slot between Madame St-Hilaire and Madam Redman.

[Translation]

Please ask your question, Ms. St-Hilaire.

Ms. Caroline St-Hilaire (Longueuil, BQ): I've a very quick question. Your comments were most interesting.

• 0955

Since you have a great deal of experience in this field, I would like you to tell me why you think families are reluctant about organ donation. Why could organ and tissue donation not become mandatory? Is it a cultural or religious issue? I would like to hear your comments.

[English]

Dr. Rolf Loertscher: First of all, I am a member of a transplant team and therefore must not be part of requesting a donation because of conflict of interest.

What I can see is that the process, the way we do it, is very often in the wrong sequence. For example, it is obviously wrong that an acute care team asks if you would maybe consider organ donation long before brain death has been declared. We must be very careful about how the sequence of events takes place. There has to be a declaration of brain death and the family has to face the fact of death first. Then the request has to come, and that request, in my view, should come from someone who has no activity in the acute care. That is why I proposed these donor management teams.

The sequence is very important. I believe we do it in the wrong sequence. We have never reviewed nationally how we perform in this regard, but I'm quite sure that we do not get consent because the sequence is wrong. I am sure that there are cultural issues. If you think of large cities like Vancouver, Toronto and Montreal with large immigrant populations, there are cultures that are not equally attuned to donation and there are religious backgrounds that may not permit that. Those are certainly issues, but by and large, I think, if it's done right and if the person who requests it is trained in doing so, the consent rates go up. That has been well demonstrated.

The Chair: Merci.

Madam Redman.

Mrs. Karen Redman (Kitchener Centre, Lib.): Thank you, Mr. Chairperson.

Dr. Loertscher, one of the suggestions made previously was that if we made it part of hospital accreditation, if we lifted up their transplant statistics as part of the process—not making it a caveat, obviously, to getting accreditation, but highlighting that—it might be a perhaps subtle way of lifting up the importance of this at that level. Could you react to that?

Dr. Rolf Loertscher: I have clipped into my brief under “other issues” the question of hospital accreditation. In my view, hospitals should be accredited especially as transplant centres and they should demonstrate that they have the resources and the teams in place to perform properly. There should be an ongoing review process that monitors the performance of the hospitals.

Finally, there should be a process of—what should I call it?—punitive action against hospitals that do not put in place what they are supposed to. I think we need incentives on the one hand, and I think the incentive to donor families is one good example. There should be incentives to health care professionals and to hospitals, if you want. But on the other hand, there should also be some penalties if hospitals do not perform and if they do not put in place the resources that are needed.

The Chair: We'll have to stop there, Madam Redman.

I want to thank—

Mr. Greg Thompson (New Brunswick Southwest, PC): Mr. Chairman, I have a point of order.

The Chair: Hold on. Let me just thank our guests.

Mr. Greg Thompson: That's my point of order, Mr. Chairman.

The Chair: Go ahead and give me the point of order, Mr. Thompson.

Mr. Greg Thompson: Mr. Chairman, I'd like the opportunity to at least ask the witnesses a question, if that would be possible.

• 1000

The Chair: We're already running over our time.

Mr. Greg Thompson: I understand that, but I'm on the committee. Actually, I stayed in Ottawa this morning simply to be a member of this committee. I don't want to be—

The Chair: I'll give you one question, Mr. Thompson. Let's go.

Mr. Greg Thompson: Thank you, Joseph.

Dr. Loertscher, I'm interested in this relationship between the shortage of organs and the basic science, if you wish, because you're telling us—and that was actually based on a previous question—that there is a relationship between the shortage of organs and basic science—and, if you wish, the failure rate.

Dr. Rolf Loertscher: The two issues are quite distant from each other. You would have to go through many steps so that you could say the basic science leads to better outcomes and therefore there is less need for re-listing. Okay? That's the rationale.

I discuss the lack of funds more to highlight how disjointed, unorganized transplantation is taking place in Canada as opposed to, for example, transplantation in the United States. I really think the shortage of organs has to do with the actual donation process, how it occurs and what we have in place in terms of teams and resources. The basic science issue is very distant from it and wouldn't really translate into more donors in the short term. This is a very long-term argument.

Mr. Greg Thompson: In terms of basic—

The Chair: Thank you, Dr. Loertscher.

Ms. Drew, unfortunately our time is up. I want to thank you very much.

If any members want to pursue the conversation further with any of our witnesses, they can do so as they exit. If there are other questions you would like to direct to our witnesses, you can forward them through the clerk and we will continue to ask them to give us detailed briefs.

Thank you very much.

Mr. Greg Thompson: Mr. Chairman, I want some clarification on the rules of engagement in terms of opposition members asking questions and taking part in the committee process. Would you please refresh my memory as to how this works? For example, we have at least eight government members asking questions. We have opposition members wanting to ask questions, with some of us being denied that opportunity. Would you please refresh my memory in terms of how the process works?

The Chair: No one has been denied the opportunity, Mr. Thompson. All members are asked to come here at the beginning of the meeting to listen to the witnesses. They were here at 9 a.m. At 9.20 a.m., we had one person wanting to ask questions. Those people who are here to ask questions get an opportunity to ask questions. Opposition and government members get equal opportunity on this committee. That's been the practice. It will continue to be the practice. Thank you.

Mr. Greg Thompson: Mr. Chairman, I'm not satisfied with that answer, because—

The Chair: Too bad. We're going to go on.

Mr. Greg Thompson: —we're here to ask intelligent questions, not questions that the health minister wants us to ask.

The Chair: Mr. Thompson, we realize that you may want and wish to make a point. However, had you been here at the beginning, you would have known that there were three Liberal members and three opposition members who asked questions.

Mr. Greg Thompson: That's right. I think you've exceeded the number of government questions, Mr. Chairman. That's the point I want to make.

The Chair: Most of us want to be here to do some good work, Mr. Thompson. I'm sure you're amongst the same group.

Colleagues, in our second panel we have Mr. David Connell, representing the Canadian Liver Foundation, Mary Catharine McDonnell, volunteer and chair of the Links to Success Advisory Group of The Kidney Foundation of Canada, and Dr. J.M. Miyasaki, from the neurology and movement disorders branch or group of the Parkinson Foundation of Canada.

Is it a branch or a group, Dr. Miyasaki?

• 1005

Dr. Janis Miyasaki (Principal Investigator, Parkinson Study Group, Parkinson Foundation of Canada): Movement disorders is a subspecialty of neurology that looks after Parkinson's disease.

The Chair: Thank you very much.

Why don't we begin in the order in which I introduced you, if you don't mind?

Mr. David Connell, you're first. I think you've already seen how the operation works. You have about five minutes maximum to make your presentation and then there'll be engagement and dialogue with committee members.

Mr. David Connell (President, Ottawa-Carleton Chapter, Canadian Liver Foundation): Thank you.

Mr. Chairperson, members of the committee, ladies and gentlemen, I'm here to represent the Canadian Liver Foundation. I was asked by our national office to address this committee on its behalf. Personally I have a vested interest in this study, as I am the recipient of three organ transplants over the last 10 years. At present, I am the president of the Ottawa-Carleton chapter of the Canadian Liver Foundation.

The Canadian Liver Foundation is devoted exclusively to providing support for research and education into the causes, diagnosis, prevention and treatment of liver disease. We were founded in 1969 by a group of doctors and business leaders. Since its foundation, the Canadian Liver Foundation has raised more than $6.5 million to support liver disease programs. We are dedicated to providing education programs, undertaking education and public awareness activities, promoting organ donor awareness campaigns, raising funds to support research and education and providing support groups for patients and their families who suffer from liver disease.

Liver disease is the fourth leading cause of death in Canada today. It affects males and females, adults and children, all races and cultures and all socio-economic groups with equal severity and ferocity. Unfortunately, most causes and cures are still unknown and transplantation is often the only effective intervention. Liver transplantation is a life-giving operation that replaces a diseased liver with a healthy one. In Canada, several hundred such transplants are performed each year.

Diseases most commonly treated by liver transplantation are fulminant hepatitis, hepatitis C, autoimmune hepatitis, primary biliary cirrhosis, cholangitis and, in children, biliary atresia. Diseases not commonly treated by liver transplantation are hepatitis B, most cancers and alcohol-related liver disease.

Liver transplantation is now successful in 80% to 90% of adults and 75% to 85% of children. Nevertheless, more than 3,000 Canadians still await life-saving organ transplants such as liver, lung, kidney, heart and pancreas. As you know, up to 30% of these individuals will tragically die while waiting for one of these scarce and precious organs to become available.

In over a third of the cases, consent for organ donation is not given by families simply because they are unaware of the wishes of their deceased loved ones. Clearly, a national registration system would significantly help reduce the number of wasted organs by ensuring that more people receive life-saving transplants.

Private companies are currently willing to co-sponsor such a registration program. Your immediate support of this initiative would do much to facilitate this much-needed national strategy for organ donation. The Canadian Liver Foundation's national office is available to help in any way to make this initiative a reality.

On another note, government funding should be available to open more liver transplant centres in Canada. Ottawa, for example, has an excellent heart-and-kidney transplant team, but there is nothing for liver patients waiting for liver transplants. They have the financial and emotional burden of literally moving to another centre for three or four months at a time, maintaining two residences.

Until we find a cure for liver disease, transplantation remains the only option for many people with liver disease. Organ and tissue transplantation is a modern medical miracle. For organ donors and their families, it is a chance to give life. For recipients, it is life.

Thank you.

The Chair: Mary Catharine McDonnell.

• 1010

Ms. Mary Catharine McDonnell (Chair, Links to Success Advisory Group, The Kidney Foundation of Canada): I am a volunteer with the Kidney Foundation of Canada. The Kidney Foundation of Canada provides services to meet the special needs of people living with kidney disease, advocates for access to high-quality care and actively promotes awareness and commitment to organ donation. As well, we fund research, including funding of transplantation research, and have spent millions since we have been formed to provide research for this very important aspect.

Because it's been a central part of our mission, the foundation has spent a lot of time in the last years looking at organ donation and transplantation. Although our patients can be maintained on dialysis, it really affects their quality of life. We believe that to make this happen we have to work together with a complex group of health care professionals, institutions and governments across Canada

In the last few years, because of the crisis in or the shortage of organ donations, we have worked on some very special initiatives. One is the Links to Success forum on organ donation. I have given the clerk a copy of those proceedings for you. It was held in Montreal in November 1996 and identified six priorities for action to improve organ donation rates in Canada, things that you have heard of through your hearings: national standards; professional education; public education; partnerships; an institutional framework; and data management and evaluation.

The very important thing is that the forum's 105 participants came from a wide range of backgrounds. They were surgeons, physicians, donor coordinators, critical care nurses, social workers, pastoral care workers, donor families, transplant recipients, program administrators, national and provincial health authorities and Kidney Foundation volunteers and staff.

We have an advisory group that came out of that, and this group of individuals has chosen to work in collaboration with the Kidney Foundation to address the many important areas. They have a wide range of backgrounds. We are looking at how best we can support the work going on within Canada. We are now looking at the possibility of the required referral and request as one way to take a look at what might help, because we know that not all donors in Canada are actually identified.

We do not know what the common denominators were of donors in Canada last year—those people who came into hospitals into clinical situations and who were maintained on life support and in fact could have been donors. We know the organ donation rates, but we do not know, using the same formula across Canada, what the common denominators were. This is a very important information point that we need to address.

We participate in the National Coordinating Committee on Organ and Tissue Donation and Distribution and very much support the work of that committee. You heard from their witnesses earlier.

One of the more interesting things we have done in the last few years is an organ donation outcomes-based special programs grant competition, whereby $1 million has been set aside in a period of three years to ask programs and communities across Canada to say what they can do in a pilot project to make a difference in organ donation rates in their areas. To address a question from one of the members of the last panel, our first study to be funded will look at the effects culturally sensitive interpreters would have on the organ donor rate at the Hospital for Sick Children. The study will be taking a look at their donor rates and then asking how, in a very culturally diverse population, if you had the right people working with the families in a time of crisis, you could best help them. Would this positively affect the donor rates?

We also believe that professional education is very important and has to be done on an ongoing basis within the critical care areas within hospitals and with emergency personnel and first responders.

Public awareness is also very important. As the Kidney Foundation of Canada, we believe that families must have a discussion about organ donation prior to arriving in an intensive care unit or an emergency room at a hospital. We are promoting family discussions; they sit around, talk about it and find out what their wishes are. I'm a health care professional who works in the area of critical care, and it makes it so much easier for families at a time of crisis in a catastrophic illness to be able to say yes, they had that discussion, they remember talking about it and they remember what the wishes were. In our education, we say, “Think about organ donation, but talk to your family.” We really do believe it is very important.

We believe that national standards should be put in place across the country. Things are not the same throughout the country. We think these standards should relate to donor identification, evaluation, referral, request, organ recovery and distribution. It's a fundamental step in improving the effectiveness of the organ donation process within the country.

• 1015

We think data management and evaluation is important so that there can be a continuous quality improvement by looking at data management pertaining to the donors and recipients in order to enhance their clinical care and to evaluate the organ donation process. Are donors identified? Are they referred to organ procurement programs? Are the requests done in a sensitive way? We believe that hospital-based organ donation programs are very important. We looked at the Spanish model. We're very impressed by those results and we think there should be some pilot projects across the country to see if we can do this within the Canadian context.

We know that professional education is an ongoing need across the country. You can't just do it once. You have to continually do it and it has to be built into the hospital systems.

We also believe that public education is very important. The Canadian public needs one message. We all need to work together. We can't compete among groups with our messages for the general Canadian public. We need to all say the same things, whether we are health care professionals or our groups.

We believe there has to be an ongoing establishment and implementation of a permanent coordinating strategy. It's a critical step in resolving the organ donor crisis in Canada. We believe that with government support and funding the strategy will define the direction and leadership required to implement initiatives to alleviate the crisis and to ensure this work progresses in an efficient and expedient manner. We believe that Canadians will realize benefits such as life-saving transplants for people with end-stage organ failure and improved quality of life for patients and their families, along with the opportunity to donate. Donation allows families to take a positive action at the time of the catastrophic event. A safe, efficient and equitable organ donation and distribution system in our country—

The Chair: Catharine, I must interrupt you for two reasons. One, I realize you're trying to get all your brief out, but you're doing it at such a fast rate that our interpreters can't keep up.

Ms. Mary Catharine McDonnell: I'm sorry.

The Chair: Secondly, you've just gone into overtime and I know you have a lot more there, but we have a very comprehensive brief from you so we'll take it from there. Maybe you can get some of those other observations out during the question-and-answer period. Okay?

Ms. Mary Catharine McDonnell: Thank you.

The Chair: Dr. Miyasaki.

Dr. Janis Miyasaki: I'm from the University of Toronto. I've been asked to appear on behalf of the Parkinson Foundation of Canada. Unlike the previous speakers, I've been asked to address a very controversial and novel therapy for a chronic, degenerative neurologic illness. I'd like to go over the scope of Parkinson's disease, why transplantation surgery is being considered for a degenerative disease and what we know currently about transplantation.

Parkinson's disease effects approximately 100,000 Canadians, and thousands of new patients are diagnosed each year. North America wide, over 1 million people suffer from Parkinson's disease. Parkinson's results in tremors, stiffness, imbalance and instability. This is due to a lack of dopamine, so treatment thus far has focused on taking medications to replace this chemical. But the treatment itself results in very marked motor complications, and approximately 70% of patients within five years will be disabled by them. About 20% of patients are younger than the age of 40 when they are diagnosed with Parkinson's disease. This means that patients are stricken with this illness at the time when they're supposed to be most productive.

This has led to the development of surgical procedures to address these complications, and they primarily involve the destruction of inappropriately overactive parts of the brain or implantation of stimulators, very complex, expensive devices that override the same areas of the brain. Given the increased interest in and success of surgical approaches to address these symptoms, it is not surprising that the possibility of transplantation to restore a function has been explored.

One transplantation technique involves the use of fetal brain tissue. This is obtained from therapeutic abortions. Six to eight fetuses must be used to treat a single patient. This is due to the low survival rate in the host. Clinical results demonstrate only mild to moderate improvement in motor function. The improvement is incomplete and patients must continue on their medications. It is not clear that long-term assessment will demonstrate superior benefit when compared to non-transplantation surgical procedures.

Currently there are two studies, sponsored by the National Institutes of Health in the United States, to look at the extent of benefit from transplantation as well as to address other technical factors. Because of the difficulties both morally and ethically, as well as the difficulty of obtaining sufficient tissue for transplantation, we've looked to other sources, and this has been touched on in xenotransplantation—or looking at pigs.

The advantages to using porcine transplantation are: the tissue is readily available; you can accurately date the fetal tissue, which is critical to the success of transplantation; and you can screen for pathogens.

• 1020

However, of course there is the concern that unknown pathogens may be transmitted to hosts. There are natural factors, however, that limit the spread of such retroviruses, and these include the short half-life of particles and the fact that only dividing cells are infected. The normal adult brain has very few dividing cells, so this would be a relatively safe place for xenotransplantation.

A pilot study of 12 patients undergoing porcine fetal transplantation is underway in the United States. An autopsy of a patient who died of unrelated causes shows that the pig cells did survive and formed appropriate connections within the patient's brain. The potential for infection with unknown pathogens is present with any transplantation procedure. Porcine neural transplantation is felt to be relatively low risk compared to other forms of xenotransplantation and, therefore, xenotransplantation should be considered on a limited, small-scale, highly regulated experimental basis to further quantify the benefits and safety of porcine transplantation for Parkinson's disease.

Thank you.

The Chair: Thank you very much.

Mr. Vellacott.

Mr. Maurice Vellacott: I have a question for Dr. Miyasaki on this last presentation. If you could give me on a percentage basis the nature of success or failure with Parkinson's in terms of some of the procedures used and so on, what would you guesstimate that to be at this point?

Dr. Janis Miyasaki: Do you mean all surgical procedures?

Mr. Maurice Vellacott: Yes, all surgical procedures in relation to trying to correct or ameliorate Parkinson's.

Dr. Janis Miyasaki: They are highly successful, but we also carefully select patients to undergo the procedure. Probably out of every 10 patients I see, maybe three are appropriate for surgery. The problem with these procedures is that Parkinson's, of course, is progressive, which means that although you address the symptoms at one point in time, the symptoms are continuing to progress, so the benefits of surgery may not be sufficiently long-lasting.

Mr. Maurice Vellacott: Okay. The other point I want to address is this issue of the use of fetal tissue. I had a father-in-law who had Parkinson's so I know this issue well. He passed away due to complications of Parkinson's. I'm also one with a high respect for the sanctity of life, and I do definitely have qualms with respect to the use of fetal tissue here. Is your suggestion to us, then, that the odds are possibly as good with xenotransplantation—or from pigs, as you say—as they are with human tissue? Is your suggestion that there is certainly that potential, therefore getting around some of the ethical issues?

Dr. Janis Miyasaki: There is certainly that potential. To quantify that is not possible because xenotransplantation is really in its infancy, and based on 12 patients, you really can't derive a broad inference. But certainly in terms of the ethics of using fetal tissue, in fact, tissue from less than .01% of all therapeutic abortions goes towards experimental modalities such as fetal transplantation.

Mr. Maurice Vellacott: Thank you.

The Chair: Dr. Patry.

[Translation]

Mr. Bernard Patry (Pierrefonds—Dollard, Lib.): I would like to pursue the issue of xenotransplantation.

First, however, I would like to thank our guests, and tell them that I fully support what they've said, and particularly the solutions they have recommended.

The Canadian Transplantation Society recently held a convention in Montreal at which Diacrin, a company from Charlestown, Massachussets, reported that it had obtained encouraging results with xenotransplantation. Unlike my opposition colleague, I have no moral problems with xenotransplantation experiments. If such considerations had stopped Banting and Best 77 years ago, they would have never discovered insulin. I therefore think we must continue to make progress along these lines.

Representatives from Diacrin said the results were encouraging, because no pathogens, viruses from hogs, were found in the transplanted cells. You're probably very familiar with this study. What did the results really show regarding treatment for human beings with Parkinson's disease?

• 1025

[English]

Dr. Janis Miyasaki: So far there's been only a preliminary report for the patients with Parkinson's disease in this very small study. You're quite correct: the results were very promising and showed that they had good functional recovery or good motor function after the transplantation. One of the comparisons to fetal transplantation is that patients will likely require immunosuppression for a longer period of time because, of course, you're transplanting pig tissue into humans.

Mr. Bernard Patry: That answers my question. I know a little about this study, but as you mentioned, it's just a preliminary study. I would like to know a little more about this and also about this liver study, because there is another company, in Massachusetts, I think, that is talking about treating

[Translation]

liver failure because of the xenotransplantation and also by taking blood toxins. I don't know what the future holds for us in this regard. Has this type of surgery or xenotransplantation already been done in Canada, more specifically, in Toronto, where you work on Dr. Lang's team?

[English]

Dr. Janis Miyasaki: We did apply to the Health Protection Branch of Health Canada to perform such a study. However, our application was declined.

Mr. Bernard Patry: Thank you.

Mr. Maurice Vellacott: Just for the record, for my colleague here, I said I had moral qualms with respect to the use of fetal tissue, Dr. Patry, not xenotransplantation. I think I'm open to that. I would reserve judgment, I guess, but I'm stating that I have moral qualms about the use of fetal tissue. That's what I meant before—just so there isn't a misunderstanding.

The Chair: I think it would be best if we directed our questions to our witnesses. Some of this debate—

Mr. Maurice Vellacott: It was for the record.

The Chair: That's fair enough. But in regard to the back-and-forth dialogue, we can deal with that a little later on. Thanks for the clarification.

You still have a minute left, Dr. Patry.

Mr. Bernard Patry: That's okay.

The Chair: Mr. Thompson.

Mr. Greg Thompson: Thank you for your new-found generosity, Mr. Chairman. Again, I want to thank the witnesses. This is very interesting.

Dr. Miyasaki, the question comes down to the procedure itself when we're talking about the fetal procedure you've mentioned in your brief. Is it correct that only when the benefit outweighs the risk do you proceed? Could you talk about the risk-benefit analysis in regard to that procedure?

Also, in your clarification or answer, I want you to speak specifically to the ethical and moral risk and benefit in that procedure, because obviously we're talking about fetal material and how that material is obtained. Could you touch on that in your answer as well?

Dr. Janis Miyasaki: First, to address the issue of risk benefit, certainly, that's quite correct. That's what we all swear to, that we will first of all do no harm. This is why the National Institutes of Health have sponsored two studies looking at fetal transplantation to treat Parkinson's, to quantify the safety as well as determine the extent of benefit and the best technique to ensure the best survival.

Mr. Greg Thompson: I don't want to interrupt here, but are you talking about the U.S. situation?

Dr. Janis Miyasaki: Yes.

Mr. Greg Thompson: Not in Canada?

Dr. Janis Miyasaki: No.

Mr. Greg Thompson: We have not taken on that project, have we?

Dr. Janis Miyasaki: It has not been a very active program, no.

Mr. Greg Thompson: Continue, please. Thank you.

Dr. Janis Miyasaki: In fact, in the United States, only one patient's death was directly attributable to the transplant procedure, so given the number of patients who have been transplanted, it's a very safe procedure.

In terms of the moral and ethical issues, I'm not sure what specifically you would like me to address.

Mr. Greg Thompson: In some cases you're using fetal tissue that has been derived from abortions. Is that correct?

Dr. Janis Miyasaki: Yes, it is always derived from therapeutic abortions.

Mr. Greg Thompson: Therapeutic abortions. So I guess therein lies the—

Dr. Janis Miyasaki: Spontaneous abortions would not be appropriate because they have a high incidence of genetic abnormalities.

Mr. Greg Thompson: In the U.S., for example, is that tissue paid for?

Dr. Janis Miyasaki: No, it is not.

Mr. Greg Thompson: It is not paid for.

Dr. Janis Miyasaki: No.

Mr. Greg Thompson: Okay. What is the relationship between the recipient, if you wish, or the institute, I should say, and the obtaining of that fetal material? Is that fetal material obtained in abortion clinics, for example?

• 1030

Dr. Janis Miyasaki: I'm not clear about that. I would have to look into it and get back to you.

Mr. Greg Thompson: So there could be a relationship whereby abortion clinics are in fact passing on fetal material to hospitals that are engaged in transplantation. Would that be a possibility? Obviously, in the U.S. there are many fee-for-service abortion clinics. What I'm getting at is that moral, ethical relationship that exists between the hospital and some of those clinics.

Mr. Lynn Myers: Mr. Chairman, on a point of order—

The Chair: Just a second.

Mr. Thompson, I appreciate the line of questioning, but I wonder if you could focus your questions on a Canadian experience. I'm not sure it's fair to—

Mr. Greg Thompson: There's really no Canadian experience here, if you'd listen to the testimony carefully, Mr. Chairman. But what I'm getting at is—

The Chair: I have a point of order from Mr. Myers.

Mr. Lynn Myers: Mr. Chairman, I'm curious about where this line of questioning is going. We have witnesses here to talk about transplantation, and I wondered if this is not starting to take a direction that's off course.

The Chair: Thank you. I think that's a valid—

Mr. Greg Thompson: Mr. Chairman, that's the purpose of—

The Chair: Mr. Thompson, we won't interrupt you when you're answering. Just be patient for a moment.

Mr. Greg Thompson: I'm sorry.

The Chair: The point has been made. I agree with the point that we're dealing with transplantation. Your line of questioning with respect to a particular issue would be absolutely bang on if you were to maintain it with the Canadian experience. I think our witness has already given an indication that she would like to address the issue in the experience that's within our purview. Please proceed.

Mr. Greg Thompson: Thank you for allowing me to proceed, Mr. Chairman.

Again, I'm going back to the moral, ethical issues. Would that stand be—or has it been—in the way of that type of development and research in Canada? Again, Doctor, we're talking about the American experience, not the Canadian. Are those moral, ethical issues standing in the way of that type of research in Canada?

Dr. Janis Miyasaki: I can't address that specifically since our centre was not at all involved in pursuing fetal transplantation. I believe that's in fact why I was selected to appear. I do not have a vested interest in it.

Mr. Greg Thompson: One other—

The Chair: Madam Minna.

You can come back on another round, Mr. Thompson.

Ms. Maria Minna (Beaches—East York, Lib.): Thank you, Mr. Chair.

My question combines a bit of the presentation made by the previous groups with yours. First, we heard earlier that the hospitals don't have the donor management teams and in many cases across the country are not in any way prepared for this. Also, there are many organizations involved, like the Kidney Foundation and the Heart Foundation, etc. If you list them all, there's a very large number of organizations.

I'm trying to get at a number of things. First, do you agree that hospitals should be made to get certification and have donor transplantation teams? Given that it's a provincial jurisdiction, how would you see this happening across the country? What role would your particular organizations be able to play in assisting with this, given the fact that the organizations are, I think, national organizations in most cases? That's my first question. Have you looked at that at all in terms of how you might be able to assist in getting that started? Given that it is a provincial jurisdiction, it isn't something that's easily imposed by or done by the federal government; it has to be negotiated—not to mention the research and moneys involved. I just wondered what kind of work you'd done in that area so I can hear what suggestions you might have.

The Chair: Mary Catharine McDonnell.

Ms. Mary Catharine McDonnell: We realize that it is a provincial jurisdiction, but most of our national organizations have a presence within each province of Canada. One of the things that the foundation is helping with through the outcomes-based special program is pilot projects such as donor teams within specific hospitals. If the results are promising, we could take those results throughout provincial organizations to the provincial governments and work within their health regions and then within hospitals within those regions to see about implementing that.

We realize that hospitals often have the will to become involved in donations. But they don't have the resources to put aside for that particular aspect. Maintaining a donor in a very expert manner also requires resources at a time of hospital cutbacks and restraint. The will and the leadership have to be there.

• 1035

Ms. Maria Minna: The other question has to do with the large number of organizations that there are, as I mentioned just now. Is there, to any extent, cooperation in working together with one another and sharing, to some degree, information, resources, contacts, structure or what have you? A kidney transplantation is different from the liver transplant and the heart transplant or what have you, and I suppose Parkinson's is a whole other area, but I'm thinking in terms of there still being some similarities in terms of the problems that you all face. Maybe kidney transplantation sometimes has a bit more success because you can also have transplantation from live donors, but the other situation...

Ms. Mary Catharine McDonnell: In 1998, I was the chairman of the Canadian Coalition on Organ Donation Awareness, and we did come together as groups. I believe that we all want to work together, but each health organization also has its own particular mandate and priorities. We're very willing to collaborate and work together. I don't think we're competing with each other in any way, shape or form. We very much want to work together so that we carry the message together. We support our colleagues in the Liver Foundation, the Heart and Stroke Foundation, the Lung Association and those other organizations as well.

Ms. Maria Minna: What about the less understood areas of transplantation? I'm thinking of some other areas. Bowel transplantation, for instance, is not as common. It's still a bit experimental in some countries. In Canada, I don't think it's as common as, say, kidney transplants or others. There are other areas of transplantation that are either not as common or as well understood by the public.

My sense is that a great many members of the public do understand heart transplantation because it's been on the front pages for years, like kidney transplants, but there are a lot of other areas that haven't been. I'm wondering if your organizations, in addition to focusing on your areas, work together to communicate the whole concept and understanding of a transplantation, just from the point of view of understanding the many varied aspects of it so that the public can begin to understand a bit more and feel a bit more comfortable with it to some degree.

Ms. Mary Catharine McDonnell: Certainly I can speak on behalf of the Kidney Foundation and say that our message is organ donation, not kidney donation. The message to the general public is organ donation and discussing this with your family.

We do work in collaboration with other groups, but again, I'm not sure that other health organizations have that as such a high priority for their own particular associations across Canada. Again, though, I believe that we'd all work in collaboration with each other for the common good.

Ms. Maria Minna: Just as a final question—

The Chair: Ms. Minna, that's it. Thank you.

Ms. Wasylycia-Leis.

Ms. Judy Wasylycia-Leis (Winnipeg North Centre, NDP): Thank you very much, Mr. Chairperson. Let me put three questions to our guests this morning.

Please pick and choose from them, because I know the chairperson will cut me off very quickly.

Voices: Oh, oh.

Ms. Judy Wasylycia-Leis: First, the most helpful thing for me would be to get your comments on this draft plan that has been developed at the federal-provincial level and includes 13 recommendations. For those of us who are not immersed in this whole area of how to solve the problem, I think what I would find really useful is your feedback on those recommendations. Do you support them all? Are there problems with any of them? What are the roadblocks?

Second, with respect to the whole issue of information technology, we received a report yesterday from the minister, and I know this ties in directly to sharing of information so we can have a more effective system with respect to transplantation. Do you have any feedback or advice on that whole issue?

The third is with respect to—and we'll get into this later this morning—the use of animal organs for transplantation. I'm certainly hearing concerns from people who are worried about this whole direction, worried from an ethical point of view and a health point of view, and also worried about whether or not this kind of system will allow for access by everyone in our society regardless of income.

The Chair: Okay. Now listen, if all three of you decide you want to answer all three questions I may have to cut you off, but can we start with Dr. Miyasaki?

Dr. Janis Miyasaki: I'll answer the question about the animals.

Solid organ transplantation is different from neural transplantation. That's the first issue. There's less risk of infection in a neural transplant. Partly that's because the brain is a relatively isolated area of the body, so what is transplanted in the brain has less chance of travelling to the rest of the body.

Additionally, the types of viruses people are afraid of or concerned about are viruses that require cells that are still multiplying. In the adult human brain, there are very few numbers of cells that are multiplying so there is less risk as well.

• 1040

Finally, the pigs that are raised for neural transplantation are highly selected, they're isolated, and the fetal tissue is examined very carefully. Also, because they are cell suspensions that are being transplanted, we would be able to examine them very thoroughly.

The Chair: Mr. Connell.

Mr. David Connell: The Canadian Liver Foundation provides funding to people who do research in this field. Other than that, we don't get involved.

Ms. Mary Catharine McDonnell: With regard to the 13-point strategy, the Kidney Foundation is an active participant on the national coordinating committee. Although we believe that all 13 points are very important, there are four specific elements that we are going to address in our work on the community hospital procurement processes in transplantation programs: information management, public education, professional education and certification. One of our concerns has been that there has to be strong leadership and funding support to make this happen. I really believe—the foundation believes—that there is the will to make it happen, but there have to be resources to allow this to occur.

The Chair: Ms. Wasylycia-Leis, you have a minute.

Ms. Judy Wasylycia-Leis: Just on that last point about funding for information sharing, education and research, concerns were raised previously about adequate resources through the MRC. We now have proposals before us around a revamped MRC, which is to be called the CIHR, I think, the Canadian Institutes of Health Research. Do you see that as a better vehicle for actually meeting the needs of research in the area of transplantation?

The Chair: Before you answer the question, I guess the more appropriate question right off the bat would be, are you familiar with it?

Mr. David Connell: I'm not.

Ms. Mary Catharine McDonnell: I am familiar with it, but I'm not familiar with it in enough depth to be able to take a look at it and say, “Will they provide the right kind of resources to transplantation and organ donation processes to make this occur?” But any money, any additional funding, provided to support this very important research is welcome.

The Chair: Are there any other comments?

Dr. Martin.

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

Firstly, Dr. Miyasaki, I'd like to congratulate you on the work you and your teams at the University of Toronto are doing to save people's lives. It is again a fine example of the great medical research that's engaged in in this country and in particular at the University of Toronto.

For this committee to understand the urgency of the problem and the need for organ donation in this country, I think we have to also get an understanding of the scope of the problem in the future. I'd just like to ask you to tell us, to the best of your ability, what the projected needs are in each of your respective areas in terms of the projected numbers of people who are going to suffer from renal failure, hepatic insufficiency requiring transplantation and Parkinson's disease. I know there are going to be a lot. You're the experts, and perhaps you can give us an indication of how many people we're going to see in the future in this country who will be suffering and requiring transplantation or treatment.

Thank you.

The Chair: Dr. Miyasaki.

Dr. Janis Miyasaki: The prevalence of Parkinson's disease is approximately 185 per 100,000 population in North America, so that translates to over 100,000 people within Canada. One per cent of the population over 60 has a diagnosis of Parkinson's disease, so as our population is aging, of course, that means the burden of illness is going to increase.

Mr. Keith Martin: So the numbers in the future...?

Dr. Janis Miyasaki: I think you can extrapolate it from the 1% of people over age 60, and that's the fastest-growing segment of our population.

The Chair: Mr. Connell.

Mr. David Connell: There are about 205 people waiting for liver transplants in Canada today. The bulk of those are from Ontario. With hepatitis C being—I don't want to say the word “popular”—

Ms. Judy Wasylycia-Leis: Current.

Mr. David Connell: —current, there are a lot of people with hepatitis C walking around who don't even know that they require transplants. That's all going to come to the surface over the next couple of years.

The Chair: Mary Catharine McDonnell.

Ms. Mary Catharine McDonnell: Our foundation believes that by the year 2000 there will be 4,000 Canadians on the transplant waiting list. Not everyone with end-stage renal disease is a candidate for transplantation, but the list is growing, and it's not meeting the needs of people who are going onto dialysis who are in end-stage renal failure.

Mr. Keith Martin: Thank you very much.

• 1045

The Chair: Are there any other questioners?

Madam Ur.

Mrs. Rose-Marie Ur: Thank you, Mr. Chair. My question is for Ms. McDonnell.

I have been reading through your brief as you have been speaking to the rest of my colleagues. We're all aware of how concerned we are about health care dollars, so I think it's really important to point out that in your brief you have stated that 3,000 Canadians are waiting for kidney transplants and the estimated cost for a five-year period for one person to be treated on dialysis is $250,000, whereas a transplant is $50,000. Not to sound callous, to look at in not in a donor-recipient way but in a dollar-saving way, it's just astronomical in terms of the dollars a health care system could save.

Also, on page 10 in your brief, you state that an “individual's desire to donate is not known by members of the family”. This is a great way or a positive way, I think, in which maybe we can work together in terms of how organ donation can help families cope with the loss of a relative. I've never really looked at it that way, and I think there's room to expand on that. Could you expand on your feelings on that, on how we can best approach that or what we could look at to help bring people on and be a little more positive in regard to organ donations?

Ms. Mary Catharine McDonnell: One of the things is education. I think it's very important for health professionals to know that taking those additional steps is very important: properly identifying a donor; notifying an organ procurement organization; and doing what Dr. Loertscher mentioned about decoupling, telling someone that brain death has occurred, giving the family time to take that into account and then coming back and sensitively approaching them regarding their family's wishes about organ donation—and supporting them regardless of the decision they make.

Studies have been done with bereaved families in which they have said that after donating they felt positive about the fact that although their child or spouse had died and nothing could bring them back, knowing that life had been given to other Canadians was very important for them. I think it's very important for people within the area of critical care and emergency medicine who have to take those extra steps, like the operating room staff who have to come in, to know that everything they are doing in this process is incredibly important in making a difference for these families, and it's important for them to know that it does not end at the declaration of brain death.

Mrs. Rose-Marie Ur: Thank you.

The Chair: Are there any questions on this side?

Mr. Thompson.

Mr. Greg Thompson: Thank you, Mr. Chairman.

Ms. McDonnell, I want to go on to page 11 of the brief, to the paragraph where you speak to the 13 points as presented and recommended to the federal-provincial-territorial Advisory Committee on Health Services. What is the reluctance to move on those points? In other words, it's pretty clear what you are saying should and could be done to address the critical organ and tissue donor shortage. Where has that roadblock been? Why the slowness in moving on some of those recommendations?

Ms. Mary Catharine McDonnell: I concur with other witnesses appearing before you who have said that there has to be strong support and that resources have to be put in place to make it happen. We can talk about how nice it would be to do all these things, but if we don't put actual resources into place... Goodwill has to be made into positive intentions and actions, and there has to be support, financial and human resource support, to make that happen. Everyone who is involved in the field is involved with many other aspects of their professional lives as well. There has to be some dedicated support for this. Funding is critically important, as is leadership.

Mr. Greg Thompson: In terms of funding, have you identified the number of dollars this would need as a starter?

Ms. Mary Catharine McDonnell: No, but I think all members of the standing committee are quite concerned about the fact that $500,000 has been put aside for three years in order to study this important proposal and we're already looking at the second year of this committee's work. We need to look at having the ability to access more resources to move ahead. We're in a crisis situation. We can't sit around and talk forever.

• 1050

Mr. Greg Thompson: So the half million dollars has been dedicated to studying the problem, not solving the problem. Is that correct?

Ms. Mary Catharine McDonnell: Yes.

Mr. Greg Thompson: Of course, you have to understand the problem before you can solve it.

Ms. Mary Catharine McDonnell: That's correct.

Mr. Greg Thompson: But again, that dollar figure won't be known until the results of the study.

Ms. Mary Catharine McDonnell: I would also suggest that the half million dollars put aside may not even be enough to actually study the problem at the current rate things are happening. In terms of getting people together to have groups put study proposals together and getting the information so that the committee can make recommendations, it takes dollars.

Mr. Greg Thompson: Thank you.

The Chair: Dr. Martin.

Mr. Keith Martin: When I was going through the 13 points of the federal-provincial strategy, my concern was that we would be waiting to dot the i's and cross the t's before we get anything done. You very clearly articulated the massive scope of this problem and the need to act now.

If each of you had a little “wish basket” of three or four things that we could support, that we could do immediately to start the process of addressing this problem, perhaps you could let us know what three or four things we could start with right now and then build on as time passes.

Lastly, speaking personally, when any of my patients have died in the emergency department and I've had to deal with that tragic situation and tell the family that their loved one has passed away, it was either myself or the neurologist or internist who broached the issue of organ donation.

You've really made me think. I don't know the answer to this, but perhaps you can tell me. In terms of broaching the issue of organ donation for a deceased loved one, is it better to have it done by a group of people that the patient's family does not know, has never met and has had no contact with? Or is it better broached by the medical personnel who have dealt with and tried to save the life of their loved one? Is there a prejudice against the person who has to tell them the really awful news? Is it better to have somebody else do it? Or is it better to have it done by somebody they already know and are familiar with? I don't know the answer to that.

Ms. Mary Catharine McDonnell: There have been studies done. The Partnership for Organ Donation, a group situated in Boston, has looked at this particular issue and has found that it is in fact better if a specific team that has expertise in asking approaches the family. It may not be the team that cared for that patient and family at the time. It doesn't have to do with the sense of prejudice, I believe, but with comfortableness.

Even in a very busy emergency ward or intensive care unit, you may not have that many donors over the period of a year, and with people working shifts and things like that, you have to develop some comfortableness with the approach and have the time to spend with the family in order to allow them to consider their decisions and to come back to ask their questions and have them answered in a thoughtful manner. It's felt that there is some merit, actually, in having specific “asking teams” that are separate from the front-line people responding to that patient and family.

Mr. Keith Martin: If you have access to it, could we get a copy of that study? I'd be really interested in seeing it.

The Chair: Just make it available through the clerk—

Ms. Mary Catharine McDonnell: Yes, we will.

The Chair: —and then we'll distribute it.

Mr. Keith Martin: Thank you very much.

The Chair: Any more questions?

I want to thank all three of our witnesses. As you saw, some of the question-and-answer period was a little lively, but I'm sure that some of the information that came through will be more than helpful in giving the committee a sense of the broader dimensions of the issue. For that, we thank you very much. Sometimes the questions are rather brutally honest and frank, and sometimes they are pointed, but they all help to give us a better understanding of the issue. Thank you very much.

We now have another four groups. I will ask them to come forward. We'll begin immediately at 11 a.m. We will suspend for two minutes.

• 1055

• 1101

The Chair: Order, please. Colleagues, in our third and final panel for today, we have representatives from four organizations. In the order listed on the agenda, the first one is The Canadian National Institute for the Blind, represented by Mr. Gerrard Grace, who is the vice-president of marketing, communications and foundations.

Welcome, Mr. Grace.

From the Islet Foundation, we have with us the president, Mr. Alastair Gordon. From the Bruce Denniston Bone Marrow Society, we have with us Dr. Campbell Hobson, who is the president of that organization. From the Canadian Ophthalmological Society, we have with us Dr. Christopher Seamone, member of the eye bank committee.

Welcome, gentlemen. I think you've had an occasion to observe the dynamics of the committee. I'm going to ask you to give presentations of not more than five minutes in length, and I may have to interrupt you if you go very much beyond that in terms of seconds. Then we'll go into questions and answers.

Mr. Greg Thompson: Mr. Chairman, excuse me for the interruption. I just want a clarification in regard to my questioning. I just want to remind the chairman that our terms of reference allow us to examine other countries on this particular issue, so my questioning in regard to the U.S. example... I just want to make that clarification to the chair.

The Chair: That's fair, but it's also fair to keep in mind that the witnesses who come forward come with a particular background and expertise. We want to soak up all of the information that they have to offer us, but we want to be fair about the preparation that they've done.

Mr. Greg Thompson: As long as that fairness is exercised by the chair, I'll be happy, Mr. Chairman.

The Chair: That would be the only direction that would guide me when it comes to interruptions. Thank you.

Mr. Gordon.

Mr. Alastair T. Gordon (President, The Islet Foundation): Thank you. I'd like to thank the Standing Committee on Health for this opportunity.

Xenotransplantation, the transplanting of tissue and organs from pigs to people, may be the most important development for solving the accelerating gap between supply and demand for transplanted organs. Diabetes alone is responsible for 29% of kidney transplants. Soon, xenografts of insulin-producing islets from pigs, without the use of systemic immunosuppression, may be able to reverse diabetes and prevent the kidney damage that inevitably leads to an organ transplant. In the longer term, whole organs from clean, purpose-bred pigs could result in a disease-free source of organs that are available on demand and are safer than human-to-human transplants.

• 1105

Xenotransplantation can deliver life-saving health benefits to Canadians, save billions of dollars a year in health costs and dramatically improve the safety and availability of transplanted organs. Yet, xenotransplantation is being opposed by a vociferous group that includes well-meaning individuals, political activists and various extremists.

This opportunity will be lost to Canada unless rational xenotransplantation guidelines based on science and on consistent ethical principles are put in place to allow clinical trials to proceed immediately. Children and adults must not be denied these life-saving advances in order to appease groups that are opposed to the humane use of animal products for human health.

To assure that Canada plays a leading role in emerging field of xenotransplantation, our government must show leadership. Our government must demand scientific evidence from groups resisting xenotransplantation and reject any arguments that cannot be supported by reason and by consistent ethical principles.

As the government drafts its xenotransplantation guidelines, it will hear arguments and even threats from various groups that wish to prevent advances in this area. It is worth taking a moment to consider the merits of their various arguments. The spectre of widespread disease transmission presented by the opponents of xenotransplantation is utterly without merit and yet almost every media story in xenotransplantation raises this fear. To date, thousands of people have received living pig tissue, including skin to treat burns, liver cells to treat liver disease, islets to treat diabetes and neurons for Parkinson's disease. In the 1920s and 1930s, people with diabetes injected non-sterile pig insulin. In all these thousands of so-called opportunities for transmission of pig disease to humans, not a single case of infection has emerged.

Animal rights groups have stated that it is unethical to use animal tissue to treat human disease, yet can a society that uses pigs for suede, bristles and bacon prohibit using the same animal to save a child from the horrors of diabetes?

Xenotransplantation must not face an unrealistically higher test of public safety than everyday medical procedures. Today, we do not deny medical care to people with AIDS despite the very real and demonstrated risk of disease transmission to medical staff and ultimately to the general public.

Based on fears that are purely speculative and have never once been demonstrated, how can we deny medical advancement to people with diabetes and other diseases that may only be treatable using xenografts? Such a selective and unscientific prohibition would be both discriminatory and unconstitutional. Xenotransplantation, like any medical practice, must be regulated. If Canada creates regulations that are overly restrictive or delayed, we will face the prospect of desperate Canadians becoming unregulated transplant tourists in less vigilant jurisdictions.

At the advent of any new medical development, including water fluoridation, blood transfusions, animal insulin, organ transplants and genetic engineering, there were people making dire predictions and calling for prohibition. If their will had prevailed, many of us would not even be alive for this debate. Our government must be unmoved by the voices of hysteria and fear of change and must listen only to arguments that can be supported by science and by consistent ethical principles.

Thank you.

The Chair: Thank you, Mr. Gordon.

Dr. Seamone.

Dr. Christopher Seamone (Member, Eye Bank Committee, Canadian Ophthalmological Society): Thank you. I'm a corneal specialist in Halifax and co-medical director of the eye bank division of the regional tissue bank in Halifax. I'm also a medical director of the New Brunswick eye bank in St. John, New Brunswick. In the audience is Mr. Jim Mohr, who is the director of our regional tissue bank in Halifax. He has a very keen interest in corneal donation and I asked him to come here with me.

The Chair: Excuse me, Dr. Seamone. He's welcome at the table as well.

Dr. Christopher Seamone: I'd appreciate that.

The Chair: Later on, you may want to refer any questions that come to you to him.

Please, take a seat, Mr. Mohr.

Dr. Christopher Seamone: Thank you, Mr. Chairman.

The Chair: I'm sorry for the interruption. Go ahead.

Dr. Christopher Seamone: We're representing the Canadian Ophthalmological Society, which itself represents 1,100 Canadian ophthalmologists. I'm here to voice the views of the COS with regard to organ and tissue donation in Canada. I'd like to emphasize that although the Canadian Ophthalmological Society has corneal donation as its primary interest, the society supports wholeheartedly the concept that all organs and tissues are of equal importance and deserve equal attention in ensuring an adequate and safe supply to Canadians in need.

With regard specifically to the importance of corneal donations, there are over 2,000 Canadians who are presently waiting for corneal transplantation. Although eye banks in Toronto and Quebec can claim adequate donations with acceptable waiting lists, other parts of the country are not able to meet their needs, resulting in long waiting lists for corneal transplant surgery. For example, in New Brunswick and Nova Scotia today, the wait for a corneal transplant may be two years or longer.

• 1110

How can this shortfall be corrected? By public awareness campaigns? Perhaps, to a limited degree. There's no question that the general public must know that a need for corneas exists. However, there has already been considerable effort in this area in the past, yet donations still lag. In addition, it would be a mistake to use the lack of public knowledge as a scapegoat for any shortage in organ and tissue donations.

What about a central registry of prospective donors? Probably not. Although a person may sign a donor card and have this choice marked on the health card or driver's licence, there must be a mechanism to encourage the immediate family members to agree to organ and tissue donation in their time of grief. A signed donor card does not ensure this.

Coroner's laws? Definitely not. Coroner's laws have caused controversy in the United States, raising issues of insensitivity to family wishes and raising questions about organ and tissue quality.

The COS believes that the answer lies at the local hospital level. In Canada, most deaths occur in the hospital setting, in the emergency rooms and in ICUs and CCUs. The most important factor in ensuring successful organ and tissue donation is that each hospital have an efficient yet sensitive mechanism by which grieving family members can be approached on the issue of organ and tissue donation.

Each hospital must have a protocol by which prospective donors are identified. There must be a trained and skilled individual or team that discusses donation with the family and obtains consent. Also, after consent is obtained, there must be an efficient mechanism by which organs and tissue can be procured and processed. This approach requires that every hospital be monitored with regard to its success rate and that each hospital be held accountable for specifying the reasons why legitimate prospective donors are not utilized. Implicit in this mechanism are proper training and education of hospital personnel and adequate funding.

The Canadian Ophthalmological Society is aware of the ongoing process of the development of Canadian standards for organ and tissue donation being developed under the auspices of the Health Protection Branch. The society wholeheartedly supports this process of developing national standards. This effort will ensure that the Canadian public has access to organs and tissue that meet the highest quality and safety standards. Also, this will encourage public confidence in the Canadian organ and tissue supply.

Implicit in this process is the need for a mechanism of accreditation for organ and tissue procurement agencies to ensure that these standards are met. This requires adequate funding for any accreditation body and for organ and tissue procurement agencies to ensure proper training and education of staff and proper equipment.

The Canadian Ophthalmological Society is encouraged that with such initiatives the supply of corneas and other tissues and organs will improve to meet the increasing need of Canadians.

Thank you.

The Chair: Thank you.

Mr. Grace.

Mr. Gerrard Grace (Vice-president, Marketing, Communication and Foundations, Canadian National Institute for the Blind): Thank you.

Firstly, the CNIB would like to congratulate this committee on its leadership in considering this issue and including the tissue component, which sometimes is neglected when we talk about organ transplants.

As you probably know, the Canadian National Institute for the Blind is a national organization. We serve 100,000 blind, deaf-blind and visually impaired clients. Unfortunately, ours is a growth industry. We're seeing over 10,000 new clients a year and we recognize now that one in four Canadians over the age of 75 will be blind or severely visually impaired such that it affects the quality of their life. Within that context, our prime role is rehabilitation, but one of our three missions is the prevention of blindness, and we conduct that through the E.A. Baker Foundation for the Prevention of Blindness.

Of the 10,000 new clients that CNIB sees a year, 2%—a small percentage but an important number—have corneal or scleral conditions. That included 168 new clients, a little under 2% of our new clients, in 1997. However, in most cases, these are the clients whose vision has deteriorated considerably while they're on waiting lists for corneal transplants. I would add that about 8% of our new clients are blind due to diabetes, and we recognize that issue as a very critical issue in terms of blindness. Diabetes is the leading cause of blindness among those people in their working years.

• 1115

The Eye Bank of Canada, on our behalf, conducted a survey of the eye banks across the country and found that in recent years about 6,400 eyes are being donated. From these eyes, there are about 2,200 corneal transplants each year. The waiting times in Ontario are relatively reasonably good, from zero to six months, but waiting times in other parts of the country—as the representative from the Canadian Ophthalmological Society has stated—can be as long as 12 to 18 months or even two years. This certainly suggests a need to study why there are regional differences.

For a person who is blind or severely visually impaired, any wait is too long. From a rehabilitation perspective, it is difficult to teach new skills and difficult for someone to learn the new skills—such as Braille or mobility—that are required for them to live safely, comfortably and independently if the person believes sight can be restored and is waiting for that operation. That affects not only the person's own life but that of their entire family and social circle.

So corneal transplants, which are relatively inexpensive, are an extremely cost-effective component in terms of the quality of life of our clients.

CNIB's efforts through the E. A. Baker Foundation have been primarily aimed at funding programs for public education, for education of hospital and medical personnel in terms of talking to people about corneal donations and in training people on how to enucleate an eye.

But the eye banks tell us that the most critical factor in the whole donation process, as other people have mentioned today, is the hospital personnel. We believe that a relatively small investment in training of hospital personnel is the critical component for increasing donations, particularly of corneal materials, and we don't believe that it's necessarily who does it but how well trained they are. We have to give people that skill level and that comfort level.

We also support the earlier comments of Ms. Drew in terms of a health promotion plan that recognizes donations. If we make people feel good about the donations of organs and tissue materials, that will raise the profile in their circle and will encourage other people to make the same contributions.

The final comment I would like to make is that while the government can do a fair bit—and, we believe, for a reasonable amount of dollars—in improving access to organs and tissues, the CNIB still sees a responsibility to cooperate in that effort and perhaps find some funds and resources to assist in that process, and equally so in regard to a new national coordinating body on the prevention of blindness, which has been established with support from Health Canada.

I see a lot of positive moves and support from Health Canada these days in putting vision care and corneal tissue issues at the top in the minds of Canadians and parliamentarians.

Thank you.

The Chair: And the parliamentary secretary isn't here to take all that credit, but we'll make sure that she gets it in the committee Hansard.

Dr. Hobson.

Dr. G. Campbell Hobson (President, Bruce Denniston Bone Marrow Society): Thank you, Mr. Chairman. First, I'd like to thank the chairman and the committee members for this opportunity to make a presentation on a topic very dear to my heart and the hearts of many thousands of Canadians who have been affected either personally or by the affliction of family, friends, acquaintances or simply members of the community.

I should point out that there are at present 180,000 donors in the Unrelated Bone Marrow Donor Registry who are actually anxious to become donors, unlike the other donors represented on the panel.

As outlined in my brief before you, the Unrelated Bone Marrow Donor Registry in Canada began as an outpouring of community support and has now become a vital part of the option for treatment of illness for which there was previously no option.

Progressive anaemia and increasing bleeding episodes requiring supportive transfusions of blood, platelets and white cells, accompanied by depletion of the immune system leading to recurrent overwhelming infections, then death after months of pain, struggle and grief, plus massive costs to the health system: this was the picture faced by patients and their physicians as little as 12 years ago, before bone marrow or stem cell transplants became available to provide hope and possibly a cure.

A vital part of this picture is the donor. The Bruce Denniston Bone Marrow Society was formed with the sole purpose of developing a registry of unrelated donors to provide a source of marrow stem cells for patients who found no matches in their relatives.

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Over the past 11 years, we have provided support as the registry was expanded from only 1,500 donors to more than 180,000. Along with financial and other measures, our society has also been involved as a watchdog for donor issues to ensure that there is no exploitation of their paramount desire to aid a fellow human with the gift of life and to try to provide equality of access for all Canadians, both patients and donors. The people who wish to donate have access too.

Under the Red Cross blood program, the registry began to suffer increasingly from dysfunctional management associated with the crisis in the blood program. Two and a half years ago, the national advisory committee, of which I am chairman, was formed. Improved management was developed under a dynamic national program director and some creative solutions were started.

With management now under the new operator, Canadian Blood Services, we have been assured that every effort will be made to achieve their stated goal of the best possible Canadian bone marrow registry.

I'll refer to page 8 of my brief, where these elements are listed: the ethical framework between the interests of the patient and the donor cannot be assumed to be necessarily mutually inclusive; the speed of registry to complete searches is a critical factor; accessibility anywhere in Canada for both the patient and the donor; safety, meaning high product safety and donor safety; and high-resolution DNA typing. Canadian is renowned for its high-quality laboratory technology for DNA typing and the implementation of the three stages of typing for a donor.

We are still far from achieving that goal. There are still serious infrastructure deficiencies in some areas, which must be corrected on an expedited basis.

Unfortunately, even as I speak, a donor recruiting drive in Newfoundland, inspired by a young man's search for a match, is in danger of being stifled and delayed by lack of resources. Previous Red Cross inability to address gross under-representation of Newfoundlanders' unique genetic heritage in the registry is being corrected, but tragically maybe not in time to find a matching donor. Unfortunately, provincial health ministers have yet to approve the provisional budget submitted in November for the registry program.

My brief outlines some supportive measures that are felt to represent areas where the honourable Allan Rock and Health Canada can demonstrate even more of the inspired leadership that has been apparent in their generous support of an upcoming national forum on bone marrow transplantation and stem cell technology. This forum will examine all aspects of the field and will provide a consensus to guide further development of the registry and associated technology, much like past forums on blood issues, xenotransplantation, solid organ transplantation and others.

Referring again to my brief, on page 7 I identify the initiatives that are being undertaken by Canadian Blood Services.

The information system deficiencies are being addressed, following representations to the full board of the Canadian Blood Services in June 1998 by myself and the vice-chair of the national advisory committee, Dr. Hans Messner. The matter of computer inadequacy has received a good deal of interest and direction as one of the more critical concerns the Red Cross had been unable to deal with.

The CBS has launched an initiative to greatly improve the current information system, but as the system is becoming overloaded with the data—the number of donors and the increasing complexity of DNA data—this is assuming a matter of steadily increasing urgency. A contingency program is being actively developed.

As well, a national DNA laboratory has reached the capacity where it needs to be automated to improve the technological capacity to 40,000 to 50,000 specimens annually, with a peak capacity 15% to 20% above this. This needs an additional $8 million to $10 million, the source of which hasn't been identified.

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Basic research is definitely necessary and it's sadly lacking in the following areas.

Polymorphism of human leukocyte antigen in the Canadian population: this is research into the evaluation of the existing data from the registry to identify unique genetic patterns in Canadians from ethnic minorities, aboriginal groups and in isolated areas such as Newfoundland.

We need to concentrate further on donor recruiting or on development of alternate strategies for therapy. There needs to be evaluation of the results of the program and studies of clinical outcomes. Funding has not been available for this.

Last but not least, cord blood stem cell technology needs to be evaluated. At present, this appears to be viewed favourably as an emerging complementary technology capable of reducing the need for as large or as complex a registry. However, Canadian researchers are said to be at least five years behind their European counterparts, and this is due to the lack of a national cord blood bank to enable the fundamental research necessary to establish this as an operative technology. At present, there are approximately 800 specimens in Edmonton. We have a cost of approximately $1,000 a specimen to achieve the necessary minimum 5,000 cord blood specimens in the bank.

Again, I thank this committee for giving these recommendations their careful consideration. I am not a transplant physician. Rather, I am a volunteer representative, but I'd be pleased to answer any questions to the best of my ability.

Thank you, Mr. Chairman and committee members.

The Chair: Thank you, Dr. Hobson.

We'll start off with Dr. Martin.

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

Thank you very much, all of you, for coming here to our committee and educating us. I'll ask three people—I don't mind the order—to answer the questions.

Also, Dr. Hobson, thank you very much for your very articulate suggestions.

Using the example, perhaps, of Mr. Cuff—and we hope that he'll be able to get the cells that he needs to save his life—is there a problem in the system right now with not having enough resources to do the HLA typing? Is there a problem with the resources that are available to ensure that people like Mr. Cuff and others requiring stem cells are being tested? Perhaps you can use him as an example to illustrate it. If there is a problem with the resources going to this, you could tell us about that and what problems exist, and about the problems, if they exist, with the new Canadian blood system that's taking over from the Red Cross.

Also, on your comments, Mr. Gordon, well said. If you know of an area of the world where they have set up xenotransplant guidelines that you think would be of value for us to look at, could you submit those to the committee? It would be greatly appreciated. In taking a look at them, we can perhaps use them as a starting point to incorporate in our study.

Lastly, Dr. Seamone, you mentioned you had some questions about the national donor registry, and you really articulated a point that we've heard time and time again, that is, the families of the potential donor need to be consulted. Perhaps a way of getting around this and having a national donor registry would be to have it so that at the same time a person has an opportunity to become a donor there is an explanation and a request for that person to please consult their loved ones when making the decision to become a donor. I'd like your feedback on that, please.

The Chair: Dr. Seamone.

Dr. Christopher Seamone: I actually have a suggestion. As you can imagine, at the time of the death of a loved one, the family is distraught. The fact of tissue donation—and corneal donation in particular—is difficult for them to cope with to some degree unless they are adequately prepared beforehand.

Eyes are a small part of the body, but they have great significance to people and to the family members. The thought of a loved one being disfigured in any way is certainly an issue here and perhaps has a negative effect on the amount of corneas that are donated. I think there has to be consultation with families of prospective donors to make them understand that it is not disfiguring and that the fact corneas can be donated is really a major plus coming out of a very negative situation.

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Your specific suggestion, though, is an excellent one.

Mr. Keith Martin: Thank you.

The Chair: Dr. Hobson.

Dr. G. Campbell Hobson: With regard to your questions, in speaking to the national program manager, Mr. George Clark, and to Dr. Graham Sher, who is the vice-president of medical and scientific affairs of CBS, it's my understanding that the infrastructure in Newfoundland with regard to the donor program was virtually completely deficient. This had resulted, I presume, from the inability of the Red Cross...there was a lack of funding. Apparently the program was being administered through Quebec, and the Halifax centre also did not have sufficient resources to handle the demands generated by the family's very understandable campaign to find a donor for their son.

The opportunity to participate in this was offered to the Bruce Denniston Bone Marrow Society, just as we participated when Cape Breton ran into a similar situation a year and a half ago. By sponsoring the donor program, we felt that we could help to correct this under-representation of Newfoundlanders in the national registry. This has put a significant strain on the resources to the extent that it's been necessary to recommend that the campaign actually be slowed down to allow the tabulation of the results to catch up with the problem. There's the—

Mr. Keith Martin: I'd like to interrupt you for just a second, Dr. Hobson. I'm really sorry.

The Chair: Dr. Martin, you may have to come back to this.

Mr. Keith Martin: Okay.

The Chair: I suspect you'll want to elaborate on this a little longer.

Madam Minna.

Ms. Maria Minna: Thank you, Mr. Chairman. First of all, I want to follow up on Mr. Martin's comment to Dr. Gordon. If you do have any knowledge of other countries' procedures with respect to xenotransplantation, that would be helpful to me, unless you have any comments today in that area.

The Chair: Do you want to address that now?

Ms. Maria Minna: If you want to address it now you may.

Mr. Alastair Gordon: It'll take 20 seconds.

The Chair: Go ahead.

Mr. Alastair Gordon: The country that has done the most work in this area is the United States. The Food and Drug Administration in the U.S. published xenotransplant guidelines in late 1996. They have been out for comment and feedback internationally and have been revised as a result of that. I don't think any country has put as much thought into it, has received as much feedback or has proceduralized it to the extent that the United States has.

Further, I don't think there's any reason to believe that our situation would be any different in any way from the U.S. situation. These are matters of physiology, not of politics. I believe the U.S. FDA guidelines would be an excellent starting base for us.

The Chair: You're referring to the United States, but you're aware as well that last week, I think, the European council debated this issue. The parliamentarians who came from it called for a moratorium on xenotransplantations.

Mr. Alastair Gordon: I think we have to remember that the same group demanded and got a moratorium on genetic engineering in the 1970s, which lasted a matter of months before it was dropped. The European group has no legislative power whatsoever, and this is a committee within the Council of Europe.

What I would say to anybody putting forth such a proposal is simply this: show me the scientific evidence that backs up a prohibition. If I see convincing scientific evidence, I will accept a prohibition on clinical trials. Yet, in every case the prohibition has been called for, the scientific evidence supporting it simply hasn't been there. And from what I know of the Council of Europe's proposal, it's exactly the same situation. They do not have any science to back up what they're proposing.

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The Chair: We'll pursue that.

Madam Minna.

Ms. Maria Minna: I have just one last question for Mr. Gordon before I move on. Maybe this is just television hype, but we always see these dishes and the ears and various organs being grown. Is this futuristic, like watching Star Trek? Is there any reality to this kind of science? We're talking about transplantation, but then we also see the ability to grow stuff.

Mr. Alastair Gordon: The first problem that xenotransplantation will solve will not be whole organ transplants; it will be cellular or cell-level transplants. Cell-level transplants have the potential to cure diabetes, liver disease, Parkinson's disease and so on.

The reason those will likely be the first diseases tackled is that the transplanting of cells is surgically very simple and does not require immunosuppression. These cells use an immunoisolation technology so that the recipient retains a strong, healthy immune system throughout his life.

Those will probably be the first diseases tackled, and I would say that if the right leadership is shown by some nation, it could be a reality within three years. I believe that there are issues associated with whole organ transplants, such as hyperacute rejection and so on, that are more complex. We'll probably take several more years to resolve those issues and they probably will require some form of immunomodulation or immunosuppression.

The whole issue of leadership is a key issue. What can the Canadian government do? Should they just throw more money at it? Yes, that would be very nice, but possibly more important than throwing more money at it is to show some leadership in how that money is spent, and to set a goal, such as saying, “We will cure diabetes within five years.” So we will not have the usual investigator-initiated research; we will actually have research that's focused on a specific goal. I think that would be the secret to bringing that potential to clinical reality.

Ms. Maria Minna: Mr. Chairman, I have one last question. Before I do that, by the way, I want to welcome my constituent, Gerrard Grace. These hearings are where we meet one another.

In any case, the next question is for Dr. Seamone. You said that a central registry was probably not the answer, that the answer is at the hospital level. Previous presentations this morning have said much the same thing. In fact, you say “accountability”; they've said they're looking more at punitive measures with hospitals if certain procedures are not set in place.

Would you go as far as punitive measures? How would one apply that across the country given that we're dealing with provincial jurisdictions and we're dealing with a funding situation and what have you? I'm wondering whether you agree that the accountability would be a punitive approach or whether somehow, through the assistance of your involved organizations, we might approach this another way. I just was surprised to see that the central registry is not the issue. I'm very interested in hearing about how you see that playing at the hospital level and how we would could make that happen and enforce it.

The Chair: Dr. Seamone.

Dr. Christopher Seamone: Anything that has to do with punishment is perhaps not the best line to take, although there certainly has to be accountability. In a given hospital, we have to see that there are protocols and goals in place and that when those goals aren't met there's a mechanism by which the procedures going on in the hospital are reviewed.

The comment was made earlier today that perhaps it could be tied to accreditation. I think that's a good potential concept. But how to actually get that accountability otherwise goes back to the idea of having hospital personnel use a team approach in which people are motivated; then it would be very unlikely that you would have to worry about accountability and “punitive” measures, if we can use that term.

I think, though, that there does have to be accountability. Basically, you'd get that accountability by having hospital review committees. How much farther it would go is a question I can't answer at this point.

I'm not sure, Jim, whether you have any thoughts on that as far as accountability goes.

The Chair: Let's be very brief.

Mr. Jim Mohr (Manager, Transplantation Services, Queen Elizabeth II Health Sciences Centre): I think you raised the key issue, that is, you need to have motivated people inside individual hospitals. Once you give them the resources and the education, I think it's going to work.

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I think the accreditation process through the Canadian Council of Health Services Accreditation is a good idea. I don't think a slap on the wrist is going to be effective. By just identifying motivated people you're going to see a lot of success.

The Chair: Mr. Vellacott.

Mr. Maurice Vellacott: My first question is for Mr. Gordon, in regard to the background of the Islet Foundation. Is it a private foundation?

Mr. Alastair Gordon: The Islet Foundation is an incredibly small foundation founded several years ago for the purpose of providing support to and creating awareness of diabetes researchers whose work had the potential to actually cure diabetes in the near term; in other words, the purpose was to take the funding focus off the 10-year behavioural clinical trials and the various other research programs that, while interesting, were a long way from having any relevance to curing diabetes. That is really the background of the Islet Foundation. Its head office is Toronto. Actually, we have provided more testimony in Washington than we have in Canada until now, so this is a wonderful opportunity.

Mr. Maurice Vellacott: So it's not some business organization or company that would financially profit from xenotransplants.

Mr. Alastair Gordon: To use the term “non-profit” would be understating it. There isn't a single paid employee. Nobody earns a cent from it. Largely, it doesn't even harvest much in the way of donations. It's mostly a small, private effort to ensure that the right kind of research gets funded.

Mr. Maurice Vellacott: Xenotransplants or—

Mr. Alastair Gordon: Xenotransplantation is certainly the only promising technology on the horizon in terms of curing diabetes.

Mr. Maurice Vellacott: Okay. So mostly, then, it's cross-referenced to diabetes, not to any and all other kinds of diseases where we're doing full transplants. It's pretty specific, pretty narrow, at this point.

Mr. Alastair Gordon: Yes. The Islet Foundation itself is focused on islet transplantation for the treatment of diabetes. However, as a result, it inevitably exposes one to xenotransplantation and that whole emergent technology. The techniques for transplanting islets without immunosuppression are also applicable to transplanting neurons and liver cells without immunosuppression.

Mr. Maurice Vellacott: So once the damage is done to a particular organ, then, xenotransplantation really doesn't help. Am I asking the question correctly here? It has to be early diagnosis, therefore, to use—

Mr. Alastair Gordon: Oh, no. For example, somebody could have diabetes for 30 years and still be cured through islet xenotransplantation. What it really means is, for example, the transplanting of a heart. A heart is a complex pump. The whole pump has to be replaced. It's a whole organ transplant, it's vascularized, it's connected to the vascular system of the recipient and so on.

In the case of certain other diseases, only certain cells within organs have been killed. In the case of diabetes, the immune system accidentally kills the insulin-producing islets, so all you need to do is to put living islets somewhere in that person's body to replace those dead islets and you've cured diabetes.

Mr. Maurice Vellacott: So if you get at the disease that causes the breakdown of the organ itself, then... You can use xenotransplantation, but once the organ is finished and all broken down, it's of no help at that point.

Mr. Alastair Gordon: It is always of help. If the patient is alive, the function performed by the cells in that organ that have been damaged can be potentially performed by transplanted pig cells. In other words, it has nothing to do with the state... For example, if somebody has acute liver failure they're not likely to live long unless some kind of transplantation or hepatic-assist device comes along to support vital functions.

In the case of diabetes, the person could be kept alive on injected insulin for a number of years, but even long after every single islet in their body is dead, islet xenotransplantation is still the way to cure the diabetes.

Mr. Maurice Vellacott: I have just a quick follow-up to clarify that and then one last question to conclude here. An organ is never beyond repair, then; is that what you're saying here?

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Mr. Alastair Gordon: As long as the patient is alive and the disease is caused by the failure of certain cells, that disease can be ameliorated by transplanting living cells from pigs.

Mr. Maurice Vellacott: I have one last question.

The Chair: Make it very short.

Mr. Maurice Vellacott: You seem more...I was going to say defensive, but that isn't a fair way to put it, probably. You seem more aggressive—offensive, maybe, not defensive. Do you feel that this xenotransplantation is more under attack than the old organ transplantation and that kind of stuff? You seemed like you were pre-empting, if you will, in terms of your presentation and the nature of your comments. There are a lot of people reacting to xenotransplantation because of ethical issues or because they're animal rights activists, if you will, and so on.

Mr. Alastair Gordon: That's correct. I'm guilty as charged.

The level of opposition to xenotransplantation has been quite remarkable. A lot of it does come from animal rights activists. In fact, in the U.K., for example, they have resorted to violence and terrorism to push their case against labs involved in this type of thing. There's also opposition to it really as a result of a lack of information; in other words, there is opposition as a result of just absorbing this spectre of disease transmission—which has never ever happened—and reacting out a fear of the unknown. I would like to see the debate conducted purely and only on the principles of scientific merit and ethics that are consistent with the ethics in society at large. Then, I think, it would be a fair debate.

The Chair: Madam Redman.

Mrs. Karen Redman: Thank you, Mr. Chairperson. I really enjoyed everybody's presentation.

Specifically, though, Dr. Hobson, to what do you credit your incredible success? It sounds like you're one of the few people who has more donors than you need. The need is not outstripping the registry.

Dr. G. Campbell Hobson: Really, it's the sense of community and the feeling that people really do want to help each other. This started in Powell River in response to a perceived need. I was at that initial meeting where 700 people signed up to become donors. This was in a town of only 15,000. Really, it's a matter of channelling that desire into the process of understanding what's involved—there is a small risk—and also understanding the magnitude of the benefit that can gained. It's really a very dramatic process when a donor who's been on the registry for years suddenly gets called and told that there may be a match. They usually just rush in to give their blood sample.

It was described to me by Bruce Denniston's donor, who comes over from England every couple of years just to check on the family. She said when she was told that she might be a match it was like getting a lottery ticket and when she was told she was a match it was like being a winner.

Mrs. Karen Redman: Quite obviously there's a huge difference between being able to donate and carry on your life and having to die first in order to donate, so I realize there's a set of circumstances that is somewhat unique to what you're involved with, as opposed to people who are looking for cornea transplants and livers.

However, one of the things that has been pointed out is the awareness, the education, that is necessary. I would agree with you—and you certainly outline it in your brief—that people, generally speaking, do want to help each other and do the right thing. I sense that there probably is the attitude, the willingness, to do this; it's just the fact that the circumstances are very sad when people are asked to look at this.

As far as the education goes, are there things that other tissue transplant organizations can look at in the marketing you've been able to do with your registry?

Dr. G. Campbell Hobson: Possibly the registry is a good focal point for an education process that will help awareness about the necessity to donate other organs. And certainly as a physician—and I've actually been involved in kidney transplantation and I've done enucleations—I really feel that there is a big advantage to the organizations represented today working together.

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To this end, not really having had an opportunity to contact these other organizations, I've actually proposed in my brief that the national registry I propose be for organ and tissue donation together; the type of DNA put into the registry is quite compatible. It obviously has to be separated, but it can be, by my understanding, very achievable. I think there's a really good point here for leadership in developing this concept.

Mrs. Karen Redman: Two things are highlighted in the historical review in your brief. One is the fact that the real people come forward and express a need, so that brings it down to the community level. You also talk about a special relationship with the RCMP. Have those two components helped the registry over time?

Dr. G. Campbell Hobson: Very much so. The RCMP remains committed. There are RCMP volunteers who are actually trained in giving information sessions. This is particularly invaluable in outlying areas where the registry personnel simply can't go because they're too thin on the ground. They can respond and give information sessions and actually conduct the proper registration procedures. There are many other volunteers associated with this who may not themselves be able to become donors for health or other reasons and who actually support the process with their money and their time.

The Chair: Mr. Thompson.

Mr. Greg Thompson: Thank you, Mr. Chairman.

Again, I thank the witnesses. I'm not going to have time to get to all of you, but at least I want to talk to Dr. Hobson as quickly as possible.

Doctor, yesterday I was actually speaking to Jeff Cuff and his family, and I know that Dr. Martin has mentioned it as well. He's a young man in Newfoundland who has a rare form of leukemia and is desperately searching for a bone marrow transplant. This is in reference to what Mrs. Redman mentioned in terms of the inventory of donors that you have. Am I correct in citing 180,000 donors in your donors' bank?

Dr. G. Campbell Hobson: That's correct.

Mr. Greg Thompson: Where does the difficulty lie? This 180,000 looks like an impressive number, but I guess when it comes to an individual donor search, you get into some difficulties in a pure match. Is that correct?

Dr. G. Campbell Hobson: It's my understanding, certainly—and again, I'm not a transplant physician—that the usual odds are maybe as small as 1 in 450 for a match, and this involves more common types of genetic components in the human leukocyte antigen group that is vital in making a match. It may be as high as 1 in 750,000, and of course in that case the world registry is searched when the Canadian registry... There are 5.5 million people in the world registries. Canada cooperates with 34 other world registries in trying to maintain an interrelationship. Canadians supply only 40% to 45% of the bone marrows that are transplanted for Canadian patients. The other 55% comes from other countries. The United States is very handy and has certainly the biggest registry in the world. Conversely, Canadians supply a significant number of matches in other countries.

Mr. Greg Thompson: So the key to this whole thing is registry and identification.

Dr. G. Campbell Hobson: Yes.

Mr. Greg Thompson: I think Dr. Martin is going to pick this up where we leave off, because it's obviously important to all of us.

By the way, I'm a recipient of a bone marrow transplant and probably wouldn't be here today had I not received it.

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Going back to what they do in the United States, have they been active on this file long before us? I do know that you mentioned the Red Cross and some of the innovative things they were doing a couple of years ago. Do you expect that file to be moved forward as quickly with the new Canadian Blood Agency? What specifically can they do in the short term to move this thing along?

Dr. G. Campbell Hobson: It's my understanding that initially every effort was made to respond to the plea for help. It was pointed out that this can't be a private campaign. It's definitely a campaign where the patient is the focus, but the patients inspire people to register for the benefit of the whole country and the world. At the same time, there's the notion—and it's well founded—that if there are unique genetic characteristics that make a match difficult, the best place to expect to find a match may be in the country of origin or in the background where the family developed over generations.

The Chair: Thank you.

Mr. Greg Thompson: Mr. Chair, could I have just 30 seconds on a particular issue?

The Chair: I'm sorry. I only have three minutes left and I have one more questioner.

Madam Ur.

Mrs. Rose-Marie Ur: Thank you, Mr. Chair.

I have to say, Mr. Gordon, your name and your expertise were highly recommended by Banting House in London. I was told to be prepared for some excellent information from you. They certainly hold you in high respect.

Regarding xenotransplantation, did the U.S. encounter the same obstacles that we are experiencing here in Canada?

Mr. Alastair Gordon: Yes—and then some. There were very vocal opponents. I've attended probably three conferences on xenotransplantation. A year ago, the main discussion was about whether it would be prohibited. In the last one, last December, that never even came up. I believe that reason is finally prevailing, that when opponents were pressed to deliver the scientific evidence for prohibiting xenotransplantation it just never materialized. I would say that the U.S. guidelines as they now exist have had the benefit of all that input and are there, I think, for us to use as a springboard.

Mrs. Rose-Marie Ur: That's just what I was going to say next.

We've heard over the last days of presentations that Spain has this program that we should be looking at in regard to a registry and what they've developed there.

Mr. Alastair Gordon: Yes. It's the best in the world for allotransplants.

Mrs. Rose-Marie Ur: Right. They also went on to say that they too have a great program but they're also very interested in looking at the xenotransplantation. It's good, but they still need a greater supply of organs. Have you had any contact with the people in Spain?

Mr. Alastair Gordon: Yes. I spoke to the woman in Spain who heads the whole organ procurement and management system. As you rightly say, they have the highest hit rate on the planet and yet they still see a huge accelerating gap between supply and demand. That's why they're at xenotransplantation conferences: to say, “Help us close this gap.”

The tragic irony of what she said was that one of the major reasons the gap is growing is the declining number of road deaths and motorcycle deaths. It's very tragic. That gap will never be solved by human donors, no matter what we do.

Mrs. Rose-Marie Ur: One quick question—

The Chair: Sorry. There are a couple of other elements beyond our control, which means we'll have to stop right here; I'm sorry that we're stopping just when things get heated up.

I want to thank you, Mr. Gordon, Dr. Seamone, Mr. Grace and Dr. Hobson, both for your presentations and for your willingness to come here and engage our committee in dialogue. Committee members can get in touch with you and will probably talk to you as we depart, but I want to thank you on behalf of everyone here for your contribution.

The meeting is adjourned to the call of the chair.