Health Committee on April 3rd, 2008

[The Chair, Conservative, Joy Smith]

I call the meeting to order.

Good morning, everybody. I'm very happy today to welcome you to the committee. It's good to see all the members here.

Today we're anxiously waiting to hear your testimony. I'd like to remind you before you start that you will have 10 minutes per organization to make your presentations. We'll hear all the presentations first, and following that we will go into questions for the witnesses.

Pursuant to Standing Order 108(2) and a motion adopted by the committee on March 6, 2006, I'd like to begin this committee meeting. We will begin with Mr. Richard Tremblay, president of the Canadian Organ Donors Association.

[Richard Tremblay, President, Canadian Organ Donors Association]

Madam Chair, distinguished guests and members of the Standing Committee on Health, I'd like to begin by telling you a little about the Canadian Organ Donors Association, or CODA.

Since its founding in December 1983, CODA has been working in the community to carry out its mission to promote organ and tissue donation and to ensure national recognition of deceased donors, either posthumously or during their lifetime. CODA also arranges for the transportation of medical teams and organs throughout Quebec.

Since its inception in March of 1987, the survival chain has been maintained with the help of numerous volunteer police officers twenty-four hours a day, 365 days a year. Since March of 1987, CODA has transported 7,346 organs or tissue donations, has covered over 1,174,594 kilometres and come to the aid of medical teams in Quebec and elsewhere in Canada and in the United States on over 4,691 occasions. We estimate that since our fleet of vehicles went into service 21 years ago, over 11,985 emergency transportation calls have been answered by our association.

Over the years, we have had occasion to work many times with the families of deceased donors as well as with living donors. We have been able to appreciate just how precious these extraordinary donations really are. As you can see, CODA has developed some expertise in this field since undertaking its mission in December 1983 to promote organ and tissue donations, to pay tribute to donors and to acknowledge the medical assistance provided to ensure the safe transportation of medical teams and donated organs and tissue.

We are appearing before the committee today to tell you about one solution that, we confidently feel, will encourage more Canadians to register as organ and tissue donors. We do not claim to know enough to take a stand on the new regulations governing organ donors. We will leave it up to the medical and scientific experts to make the representations that they feel are relevant to this debate.

Nevertheless, we are concerned about the increase observed in recent years in the number of persons waiting for an organ both in Quebec and elsewhere in Canada. We believe that everything possible must be done to increase the organ and tissue donor pool. You must not lose sight of the fact that a country's success in the area of organ donation is largely a function of its people's confidence in the fairness, quality and safety of the organ transplantation system.

A tremendous gift

It bears mentioning that [...] to the extent that organ donation combines the grief of the deceased person's family with the hope of persons waiting for a donor, this act can change a person's perception of life and death and help people gain a better understanding of both stages.

As philosopher Jean-Claude Guillebaud observed, organ donation is anything but a benign act. As he goes on to explain, it is one person's tremendous gift to another, the ultimate act of human solidarity, something that clearly goes beyond mere medicine.

In its April 1999 report entitled Organ and Tissue Donation and Transplantation: A Canadian Approach, the House of Commons Standing Committee on Health underscored the crucial role donor families play in the organ donation process and made the following recommendation which, to our way of thinking, is vitally important:

10. The Committee agrees that the donors deserve recognition through their families and recommends that: 10.1 The Governor General of Canada consider offering commemorative medals or plaques in a ceremony to all donor families.

In 1994, CODA officially opened the first memorial garden in North America dedicated to the memory of organ and tissue donors in Canada. Currently, the names of over 2,000 donors are honoured posthumously. For the past 15 years, a memorial ceremony has been held every October at which time family representatives who have consented to allow their loved ones' organs or tissue to be donated receive a donor's medal from Quebec's acting Lieutenant Governor.

For the past several years, the contribution of living donors has also been recognized. This recognition ceremony is conducted with utmost respect for donors who have given of themselves to ensure the health of others. We sincerely belive that this act of public recognition is in line with family needs and ensures their ongoing support for this great and noble cause.

Madam Chair, as I left my office last night, I was going over a letter sent by Québec-Transplant to the mother of a young donor in July 2004. For privacy considerations, I will not disclose the names of the persons involved, but I would like to read the letter to you, because it reflects the tone of my presentation.

Dear Madam: Let me begin by extending to you and to the members of your family our deepest condolences on the death of your daughter Isabelle (pseudonym) on June 13, 2004. We would also like to take this opportunity to thank you warmly for consenting to donate her organs. Through your generosity, several people awaiting transplantation were able to receive a precious gift of a donated organ. From the information we have received to date from the various transplantation centres, the recipients of the liver, pancreas and kidneys are doing very well and have even been discharged from hospital. On behalf of the recipients, their families and the transplant teams, kindly accept our sincere appreciation. We hope that the organ donation process will help ease your sorrow and bring you the peace you need to deal with the grieving process. Enclosed is an invitation from the Canadian Organ Donor Association to have your daughter's name inscribed on a memorial to organ donors in Quebec and elsewhere in Canada. This memorial is located in Sherbrooke, Quebec. To ensure that the name of your daughter Isabelle (pseudonym) is inscribed on the memorial, please send a copy of this letter attesting to the fact that she was an organ donor. Of course, you are under no obligation to do so and there is no charge for having her name inscribed on the memorial. Once again, thank you for agreeing to donate the gift of life. Yours sincerely,

This letter was written to Isabelle's mother on July 8, 2004. I will conclude my brief presentation by reading to you another letter that our organization received on April 1 last, nearly four years after this young girl's death.

Good day, Nearly four years have passed since I experienced the pain of losing my young daughter Isabelle (pseudonym). Life goes on and I have regained my health. I have worked hard to learn to live again. For me, attending this ceremony is now something that I need to do. I thank God for giving me the chance to make an organ donation. After the dust settles, the importance of organ donation really hits home. Surely that is what my daughter would tell me. I look forward to hearing from you so that I can close the book on the grieving process. Thank you. Ms. X, mother of Isabelle (pseudonym).

Madam Chair, on behalf of these families, the donors and the thousands of patients awaiting a transplant, I thank you for welcoming us to the committee.

[The Chair, Conservative, Joy Smith]

We thank you very much for your presentation. That was very touching, and it certainly allowed the whole committee to hear of the very valuable donation of the gift of life. Thank you, Mr. Tremblay.

I'd like now to hear from the Canadian AIDS Society. We have with us Kim Thomas, director of programs, and Stephen Alexander, programs consultant.

Who would like to begin? Please go ahead, Mr. Alexander.

[Stephen Alexander, Programs Consultant, Canadian AIDS Society]

Thank you very much, Madam Chair, and thank you to the standing committee for the invitation for the Canadian AIDS Society to be present at this table and in these discussions.

The Canadian AIDS Society is a national coalition of over 125 community-based AIDS organizations dedicated to strengthening the response to HIV/AIDS across all sectors of society.

While we appreciate the need for ensuring the safety of organs and tissue for donation, we are nonetheless concerned that the guidelines in the safety of human cells, tissues, and organs for transplantation regulations have been changed into a law in which, despite the exceptional distribution clause, gay men and other men who have sex with men have been targeted as a specific population banned from organ donation. It's a law that seems to be based on the assumption that all homosexual and bisexual men are at high risk for HIV, and it's a law that perpetuates homophobic prejudices by equating sexual orientation with sexual behaviour.

This new regulation seems focused on stereotypes of gay men and other men who have sex with men, and it's based on an unproven belief that allowing the gay and MSM population to donate would increase the risk of HIV transmission to transplant recipients.

It's been well established within the field of epidemiology that certain conditions need to be met for HIV transmission to occur. There must be the presence of HIV in bodily fluids, such as blood, semen, vaginal secretions, or breast milk; as well, there has to be a route of infection--for example, specific types of unprotected sexual activity; mother-to-child transmission; sharing of needles or syringes and other paraphernalia used in piercing the skin; or receiving transfusions of infected blood or blood products, transplanted organs, or donated sperm.

The new regulations for organ donation do not define the type of MSM sexual activity that can lead to HIV transmission. Thus, an MSM relationship that is monogamous still can be subject to a ban, while a male having sex with a female can engage in unsafe practices or have safer sex with multiple partners and still be allowed to donate.

Dr. Gary Levy has already told this committee that:

...new testing modalities for HIV, including third-generation serology, which measures antibody responses, RNA and DNA PCR, provide transplant practitioners with enhanced tools to screen potential donors and organs. Properly used, they make the transmission of HIV exceedingly unlikely.

Understanding that risk of transmission of HIV by organ donation would occur almost exclusively during what is called the “window period” suggests that with the use of current sensitive enzyme immunosorbent assays and data on HIV incidence among transplant recipients, the risk of HIV transmission through organ transplantation is one in a million.

Canada's organ and tissue donation rate is one of the lowest in western industrialized countries. Donation rates have levelled off at 14.5 donors per million at a time when the need for transplants has increased by 50%.

Identifying high-risk groups of people rather than high-risk activities works to eliminate a lot of people who could be safe donors, and while the argument to target the gay and MSM population continues to base itself on scientific and empirical data, the HIV and AIDS in Canada Surveillance Report to December 31, 2006 by the Public Health Agency of Canada demonstrates the persistence of trends among women documented in previous surveillance reports. The positive test reports among women continue to increase, and they reached their highest level yet in 2006, at a total of 27.8% of total positive test results. That is a notable increase over 1997, when women represented only 11.1% of total positive test reports.

The PHAC report goes on to state that women account for a substantial proportion of positive test results among young adults and that in 2006 young women between the ages of 15 and 19 represented 63.8% of all positive test reports in this age group. Although MSM accounted for the largest proportion of positive test results in 2006, the heterosexual exposure category continues to account for a significant number and proportion of positive test results.

By using the same logic of incidence and prevalence that excludes the gay male population, the question remains whether there will be more increases in exclusion criteria that will further diminish the already small donor pool.

The Canadian AIDS Society urges the Standing Committee on Health to work toward providing a set of criteria that is equitable to all populations and will allow donor agencies to continue the policy of screening based on individual behavioural risk, rather than a blanket policy of exclusion based on sexual orientation, thus ensuring greater access to organs for transplantation.

Thank you.

[The Chair, Conservative, Joy Smith]

Ms. Thomas.

[Kim Thomas, Director of Programs, Canadian AIDS Society]

Stephen has spoken on behalf of both of us today. I'm just here for questions.

[The Chair, Conservative, Joy Smith]

Fine.

Thank you so much for your comments, Mr. Alexander.

We'll now go to Mr. McCutcheon.

[Laurent McCutcheon, President, Gai Écoute Inc.]

Madam Chair, members of the committee, good day and thank you for this opportunity to speak to this question.

I want to start by briefly describing to you the organizations that I represent. I am the President of Gai Écoute, an organization that provides support to homosexuals. Each year we field over 25,000 calls and over one million people visit our websites. I am also the President of Fondation Émergence, a foundation dedicated to educating, fighting and increasing awareness of prejudice. We also spearhead awareness campaigns in conjunction with International Day Against Homophobia.

I believe you are being handed copies of this year's promotional material which proclaims that homosexuality is not a disease.

We understand the need to adopt regulations governing the safety of donated organs. I believe the gay community is in favour of this initiative as well. We learned of this situation in January through the francophone press which had picked up a story originally carried by the English press in December. All of this to say that in my estimation, the gay community was not properly informed about what was happening.

I hope to show through my testimony that Health Canada's decision violates the spirit of the Canadian Charter of Rights and Freedoms which prohibits discrimination, and that Health Canada has the moral obligation to explain its decisions in a way everyone understands. We need to determine whether or not this decision is discriminatory. Let me remind you that under the Charter, decisions of this nature must be well-founded, which is not the case here. Later on, I would like to propose a regulatory scheme.

As for the scientific basis for this decision, I do not have the necessary expertise to take a firm stand one way or another. These scientific regulations go beyond my capabilities. However, I can say that there have been some scientific advances in recent years in the are of virus identification. I am not certain that the regulations properly reflect the progress that has been made in the past few years.

We also have some questions about the five-year exclusion period set out in Annex E. Some groups are excluded for five years, and others, for one year. The regulations refer to a window during which no identification could be given. As I see it, the logical approach would be to exclude people on the basis of the window, not for a period of five years, which seems arbitrary to me. For other groups, the period fixed is one year. We were not given any explanations as to the reason for this decision. We understand the one-year period for certain groups owing to latency.

We also feel that there are inconsistencies in the regulations since these state that no group is excluded, whereas the Annex lists certain excluded groups and leaves it to the health care professionals to decide whether or not to make exceptions.

Getting back to the issue of discrimination, in my view, a government, health care agency or department that makes a discriminatory decision has the moral obligation to justify that decision.

The right to information is a very important right for gay communities. Personally, I feel that our communities are being treated with contempt in this case. Decisions were made without the necessary information being disseminated. We are responsible individuals. Before coming here, I actually underwent some testing so that I could speak knowledgeably about this issue. Even though I have been sexually active for many years, my test results are still negative. In my opinion, Health Canada has a very important obligation to justify its decisions. I personally think that our communities are being treated with contempt in that they were not fully informed about the regulations that were being brought in.

I head up an organization that defends human rights as well as the Fondation Émergence. We conduct information campaigns and we would be willing to work with Health Canada in our communities to help people understand the rationale behind these regulations and what the various risk levels are. You can rest assured that where there are certain risk levels, gay communities are sufficiently responsible to support policies, provided they are properly informed.

Since we are on the subject of risk levels, I feel it is important to emphasize that people will die because they will not have received an organ transplant. Organs for donation are in short supply. People are dying while they wait for a transplant, and yet homosexuals are being excluded as potential donors. The regulations subsequently state that we are not excluded. So then, how should I answer the question on my Quebec health card as to whether I would like to be an organ donor? Should I sign the organ donor card or not? Health Canada officials haven't given me any kind of answer. I have tested negative, but for now, I have withdrawn my consent because I am at an impasse. It comes back to the importance of keeping people informed.

It seems to me that we could do things differently. I propose that a confidential national organ donor registry be established. Homosexuals account for 10% of the population, but only 2% show up in the census. Therefore, 8%, or the majority of the homosexual population, are not officially accounted for in the census. I don't feel this approach is truly adequate.

If I wanted to be a donor, I would have to answer the following question: have you had any high risk sexual relations? The conditions would be explained to me and I would voluntarily register as a donor. The registry could be confidential, but national in scale. When a person dies, a check could be run to see if that person's name is listed in the national organ donor registry. Right now, it is not clear how we should proceed. Do we or do we not sign a card? Families are asked questions in the emergency room. Parents do not know what kind of sexual relations their children have had—at least I don't think they do.

I want to emphasize that people do discriminate against homosexuals and do harbour some prejudices. Our campaigns proclaiming that “Homosexuality is NOT a disease!” have taught us that prejudices still abound. By enacting regulations like these, the Canadian government, and in this case Health Canada, is promoting this type of prejudice against homosexuals. To all intents and purposes, we have been categorized as a danger to society.

We are faced with this situation at a time when we are making a tremendous effort to achieve equality and combat prejudice. It is critically important for Health Canada to implement proper information programs to increase public awareness. This policy only serves to heighten people's prejudice against homosexuals. It does not promote responsible sexual relations, or encourage people to be organ donors at a time when organs are in short supply.

Thank you very much.

[The Chair, Conservative, Joy Smith]

I thank you very much for you presentation, Mr. McCutcheon.

Now we'll go to Mr. Flear.

[Nigel Flear, President, Egale Canada]

My name is Nigel Flear and I'm presenting on behalf of Egale Canada as the president. Thank you for the opportunity to meet with the committee today.

For those of you who don't know, Egale Canada is Canada's only national organization that advances equality and justice for lesbian, gay, bisexual, and trans people and their families across the country. Egale Canada has presented numerous submissions on issues affecting lesbian, gay, bisexual, and trans Canadians before Senate committees and House of Commons committees, and it has held intervenor status for cases heard by the Supreme Court of Canada.

As you know, I am here to discuss the recent Health Canada regulation on organ donation, which is outlined and published in the Canada Gazette Part II. It came into effect in December 2007. Egale was not informed of this regulation until earlier this year, when we were notified by the media.

The regulation lists exclusionary criteria for donating organs, one of which is that you are excluded if you are a man who has had sex with another man--MSM--in the preceding five years. They can become donors only if the transplant surgeon signs a form stating they authorize the use of an organ that would normally be excluded. This clearly discriminates against gay men, bisexual men, and other men who have had sex with men, and it targets a specific group in society on the basis of sexual orientation, with no consideration for behaviour.

In his presentation to this committee on Tuesday, March 4, Dr. Gary Levy, the director of the multi-organ transplant program, university health network, University of Toronto, stated:

This regulation, as written, will not improve organ safety over current practice...the most troublesome exclusionary criterion, the singling out of men who have had sex with men...I personally believe is totally discriminatory.

Egale Canada recommends that Health Canada target high-risk behaviour rather than high-risk groups. Unprotected sex with unknown partners, homosexual or heterosexual, regardless of gender, puts a person at a higher risk of infection. In other countries--Spain, Italy, and Portugal, for example--the donation policy is being refined, measuring against risk behaviour rather than against sexual orientation. Medical experts have already indicated that a new regulation is unenforceable, could worsen existing transplant shortages, and the risk is not in being gay, but in risky sexual behaviour.

On behalf of Egale Canada, I urge you to amend this regulation and make it consistent with the scientific data, rather than treating gay sexual orientation as a risk category.

Thank you for the opportunity to participate in this important discussion.

[The Chair, Conservative, Joy Smith]

Thank you for your presentation, Mr. Flear.

We'll now go to Mr. Plater.

[John Plater, Chair of the HIV and Hepatitis Committee, Canadian Hemophilia Society]

Thank you, Madam Chair and all the members of the committee, for inviting me.

I'm here today on behalf of the Canadian Hemophilia Society. It's an organization that represents people with bleeding orders that has chapters in each province of the country. In many ways, though, I am here to speak from my personal perspective on behalf of the organization. The organization hasn't taken a particular position on this issue yet, but I think my issues are reflective of some of the thinking right now.

Why this issue most matters to me is that I am likely going to need a liver transplant before I die. If I can get one, it may prevent my death. I'm infected with HIV and hepatitis C. I have cirrhosis of the liver. It's not decompensated, so I'm able to manage day to day, and I don't look particularly unhealthy. But I'm certainly aware that my likelihood of requiring a transplant is quite high, so it is incredibly important to me that we make available as many organs as possible.

Of course, I'm also well aware of the importance of the precautionary principle in public health care. The Canadian Hemophilia Society has been devastated over the years by the tainted blood tragedy and has done a lot of thinking about how we, as a society, go about balancing the need for precaution, in terms of infection, versus the need for transplant of these life-giving organs or for transfusion of blood.

Given the history of tainted blood and my own experiences in responding to that, I am also well aware of the importance of informed consent for patients when they are receiving health care--complete, fully informed consent.

There have been some comments today about the science in this matter. You have a lot of information on record on that. I think it really boils down to the precautionary principle and understanding how we deal with the science of probability versus the science of the specific incidence of infectious transmission. That's a debate that has to continue, and it has to be continued in public. It has to be understood by the public. It's an important debate, because at its heart, it is where we get into this issue of discrimination in these situations.

In particular, I want to respond to the suggestion that new testing methods are the answer to our problems. What we've learned through the blood transfusion situation, and are also recognizing in organ transplant, is the importance of both screening and testing together. It's never going to be perfectly safe. Things will always go wrong. Things will slip through the best systems. What we do is put in as many systems as possible to ensure that we minimize the damage done because of the need for transplants and the need for blood. The perfect world would be the world in which we didn't have transplants and we didn't have transfusions because we didn't have accidents and we didn't have disease and we didn't have problems that required them.

I don't want to spend a lot of time today, because I think you also have information on record. Certainly a lot of this is in the background to the development of the regulations, but there are specific, significant differences between blood donation and the system for blood donation and the transplant situation. In particular, there is the volume of blood donation. We don't have a serious shortage, despite there being shortages at different times of the year. With blood transfusion, we don't have the same type of shortage, so obviously larger blanket precautionary approaches are reasonable in that case.

In the organ donor situation--although these regulations obviously involve a lot more than what are really few solid organ donations in this country--the lack of availability of those particular organs means that people, on an individual basis, may be prepared to make different choices. We believe that what is important is the choice of the individual.

The fact that there is the exceptional distribution clause in the regulations gives us some confidence that at the end of the day, the individual patient and the doctor will ultimately decide, based on the best information available to them.

I also want to talk about why I think this particular situation has become so controversial, and then I will end with why I feel, from my reading of what the discussion has been, that we've actually missed what the real controversy is here.

Why is this controversial?

As a lawyer, as I looked over the record of how these regulations were developed, I was actually quite impressed with the process. One difficulty that I saw when the media report came out was that people started to wonder where this all came from. I went to meetings subsequently and people were standing up saying, “I couldn't find these regulations. Where were they? It took me days to track all this information down.”

Frankly, I had found it all in about 20 minutes, and I immediately realized that was because I'd been trained as a lawyer. I went immediately to the regulatory scheme and tracked it that way. Other people looked to the Health Canada website and to where they were used to finding the information. Clearly there was a communications problem at the end of this process and perhaps during the process.

I believe CBC did a lot of the original stories that came out, but it's quite apparent that not much background research had been done. That's tremendously unfortunate, because I think some messages were immediately sent out across the country that simply were not reflective of what the case is here.

As well, clearly this is going to be a living document. These regulations over time are going to change and grow. Science will tell us different and new things. Society will change. Culture will change. There will be changes over time.

Was the reaction to these regulations warranted?

I took a look at the exclusion criteria. As a person with hemophilia who has received a blood product in my life--and it doesn't matter when, or how many years ago, or my present situation--I would be banned from giving an organ donation. I have HIV and I have hepatitis C. I'm on the exclusion list. Also, people who have been bitten by a rabid animal are excluded, but there's already been a controversy, and probably that's not as broad as it should be. If anyone has been exposed to one--and thanks to some years on a sheep farm, I've been exposed to rabid animals over the years, so I'm excluded for that reason.

Am I concerned about this policy? Am I here to fight for it and champion it because I'm worried about infections getting through in that organ that I may get someday down the road? In some ways I'm not as concerned about that. I don't think my reaction to this whole controversy is related to that as much as to the fact that clearly I'm in the most excluded group there is.

Obviously why the MSM population is so concerned about this is the history of discrimination against that population in the country. As I reflected on that, I also asked myself what the closest I'd ever come to feeling that feeling I hear expressed at so many meetings I go to and hear from gay men and lesbian women. The closest I've been to feeling it was probably in high school where as a hemophiliac I was often prevented from taking part in the sort of macho tough-guy sports. I'd often get concerned that people would think I was gay. Thinking about that makes me think a lot about our society and makes me understand the reaction to policies like this. I think we all have a part to play and a part in the blame for that history.

I don't want to be trite, but I think in any other circumstances this would not be an issue. Again, when you look at it from a probability perspective, from a precautionary principle perspective, at the rates of infection in the population, and our ability to narrow on the basis of what are usable criteria, the MSM population is high on that list, as are people who have received blood products in the past, people who used injection drugs that were not prescribed, and people who have tattoos from using shared equipment.

I won't go into it now. I think there is some tinkering to be done on the details of the regulations. But clearly, as I am involved in AIDS and hepatitis C work, consistently we look at the MSM population as a whole, a specific target population for messaging and campaigns to reduce the infection rate in that community along with a lot of those other communities. So that is going to be there for a while.

That's speaks to something, though, another failure for us, and that is our inability to really do a good job working with those communities to reduce the infection levels. We have to ensure that resources are available to do that for them.

The real controversy I wanted to speak to today was the meeting I—

[The Chair, Conservative, Joy Smith]

Mr. Plater, can I just say that you're over time now, and could you just sum it up so we can go to committee? Thank you.

[John Plater]

Yes, it will be very easy.

I sat in a meeting and listened to the process that went into these regulations and recognized that, technically, my organs can be used. My organs can be used. The controversy is that there is no transplant surgeon in this country who will transplant a liver, from anyone, into me as a person who is co-infected with HIV and hepatitis C. You had Dr. Levy here, the head of the largest transplant program in the country, and I realize no one asked him why that's the case. My understanding is that nowhere in the country is this possible. I would have to go to the United States, and I'm just fortunate, as a result of blood compensation, that I might be able to afford that.

[The Chair, Conservative, Joy Smith]

Thank you, Mr. Plater.

We're now going to go to the questions from the committee. The first round will be seven minutes per person. We'll start with Mr. Thibault.

[Robert Thibault, Liberal, West Nova, NS]

Merci, madame la présidente, and thank you all for your presentations.

I don't see anybody trying to pull a fast one here. I don't see anything necessarily devious about this whole question, but there's a problem with where we end up. One of the problems with where we end up is that it is true that everybody can donate and everybody typically can receive a donated organ, because of the exceptional distribution clause. Essentially, everybody receiving a transplant now signs a waiver. So you can always say that you can go through that system and anybody can donate, even if you're on the exclusion list, with the proper science of serology, and all of those things that were laid out.

Where I see the problem is that with the regulations now in place, a lot of people are going to feel that they have to remove themselves as donors. I'm a donor; I signed my card as a donor, but when I look at the list, I question whether or not I should have done that. I don't have hemophilia, but I have received cryoprecipitate in the past, in the years that were iffy. I've been fortunate not to have been one of those who developed.... I have a cousin who died; one of my mom's cousins had the same problem I had and received cryoprecipitate during surgery and died of AIDS subsequently.

So I wonder if I shouldn't remove my name from that list. I look at the exclusionary criteria in item e), “persons who have had sex in the preceding 12 months with any persons described in Items a) to d)....” Now, I know a lot of people who couldn't truthfully answer that question, whether they knew if the partners they have had sex with—although I assume they've practised safe sex—have slept with somebody who may have slept with a prostitute or paid for sex in the past five years. I think that is very difficult.

When you look at the probability clause and those questions, I would question the Correctional Service of Canada and the Department of Justice. The Department of Justice would have gone over these criteria, I would presume. To state in the regulations of the Government of Canada that no Canadian can spend 72 hours incarcerated in a Canadian facility without being at huge risk of engaging in risk-factor sex.... If you're automatically excluded for having been incarcerated for 72 hours in Canada, you're telling every man incarcerated over a long weekend for a drunken driving or assault charge, or something, that they will be raped in a facility in Canada. That's the probability the Department of Justice has calculated. I find that a little bit disappointing.

But coming to back what I think is the serious part, people are telling me that they are removing their names from the list of donors, and they would otherwise have been donors.

Dr. Levy said—and I believe he told me this in my office—that the biggest risk for increasing AIDS now is not necessarily from the MSM group, but from young women engaged in anal sex. That's where they're seeing the largest increase now in the AIDS population. But this criterion doesn't remove young women, nor should it. But it removes men who may be in monogamous safe-sex relationships. It automatically removes them, when they should be donors.

I agree with informed consent, as John has pointed out. I should know as a donor and I should know as a recipient...and I think everybody agrees with that. I agree we should take absolute care to use the best science possible and recognize that we will have some risk.

I will perhaps put this question to Mr. Alexander and let the others respond, but having seen the regulations now and knowing that they probably don't meet the test of law—it's questionable whether they will pass the charter of rights, and certainly the delegatory powers.... You can delegate powers, but you can't delegate the delegated power, which is what the Standards Council of Canada has here. We understand that these regulations probably doesn't meet the test of law, but are they reparable? Can we work within these regulations and make them work, so that we don't discourage people from going on the list of donors, and still protect the supply?

[Stephen Alexander]

As I said in my presentation, if we were to move to an equitable process, whereby all donations were subject to risk categories as opposed to population categories, then, yes, we can solve this problem. There are other countries in the world that are moving towards this, both with their organ and blood donation processes. Italy has moved to a behavioural risk calculation for eligibility in blood donations, for instance.

So, yes, if we could move to a process whereby all risk is assessed—not orientation or populations—then, yes, we can solve this problem.

[Robert Thibault, Liberal, West Nova, NS]

Mr. McCutcheon, you suggested that the government establish a donor registry. I have a few reservations on that score, in that it would only complicate matters further. Right now, I have signed my Nova Scotia health card and have agreed to be an organ donor Therefore, if I die in an accident, my signature will be duly noted and tests will be done to see if my organs can be used. Hopefully, I can be one of the donors in your registry.

However, will prospective donors not be put off by having to register, to disclose risky behaviours and even possibly to undergo some tests?

[Laurent McCutcheon]

On the contrary. if I wanted to be a donor, instead of having to sign the donor portion of my health card—I might not have the card with me when I'm brought to the hospital—I would voluntarily go and have my name added to the registry. This way, instead of asking me if I am a homosexual, I would be asked if I have engaged any risky sexual behaviour. If everything checks out, I would ask to have my name added to the registry. Otherwise, I would not. This way, all people would voluntarily sign up to be donors, with full knowledge of the facts. No one would be the victim of discrimination.

Today, thanks to computer technology, setting up a registry would probably be a less expensive proposition that the gun registry and it just might be more effective. It could be a national registry.

[The Chair, Conservative, Joy Smith]

Thank you, Mr. McCutcheon.

Monsieur Ménard.

[Réal Ménard, Bloc, Hochelaga, QC]

Thank you.

Madam Chair, I'd like to ask three questions in quick succession. The first is for Mr. Tremblay, the second for Mr. McCutcheon and the third for our friends from the Canadian AIDS Society.

Mr. Tremblay, you have refrained from commenting on the subject-matter of today's meeting. You made an appeal for donors. Please know that your appeal has been heard by members of this committee. Nevertheless, do you believe that Annex E, as currently worded, is discriminatory? To your knowledge, given the new technologies available today, in particular third generation tests known as PCR tests, would accepting donated organs from homosexuals be deemed quite safe?

Mr. McCutcheon, my views are indeed very similar to yours. I do feel that this is clearly discriminatory and merely serves to stigmatize a group. I am familiar with the work that you and your organization have done to end prejudice. I will ask our researchers to confirm my recollection that in 1996 and 1997, Ms. Picard, a member of the Standing Committee on Health at the time, proposed the creation of a national registry. You know that we have some reservations about using the word “national”, but putting that aside, we understand what you are proposing.

Could you confirm by nodding your head that a report was in fact issued, that we are talking about a voluntary, deliberate initiative and that a multitude of checks would be done? Or, should we in fact amend Annex E so that at least risky sexual behaviour is addressed? I value your opinion on this matter.

Finally, I would like my friends from the Canadian AIDS Society to speak to us about how Spain and Portugal have dealt with this issue. Perhaps we could even get some background notes on this from our researchers. It would help us get an idea of how this issue has been handled and perhaps draw some inspiration from this account.

You have the floor, Mr. Tremblay.

[Richard Tremblay]

First of all, I want to repeat what I said earlier. The expertise that we have acquired since 1983 is of a technical, not scientific, nature. Our mission has been focused on promoting organ donation and recognizing donors, encouraging them to join the cause and ensuring medical assistance throughout Quebec.

To answer your question, I would just say that we are concerned to see the lists of people waiting for a transplant grow longer, in Quebec as well as elsewhere in Canada. Regarding the new regulations, you can understand that we do not want to take a stand on a decision made by the scientific or medical community. If you're asking me whether or not I am worried, I would say that our association is concerned to see the waiting lists grow longer every year.

[Réal Ménard, Bloc, Hochelaga, QC]

Mr. Tremblay, you are not in a position to voice an opinion on third generation tests. You are opting for a more prudent approach, which could perpetuate the discrimination. However, I understand why you are being cautious.

Let's hear from someone who is also prudent, but somewhat more vocal when it comes to discriminatory policies.

[Laurent McCutcheon]

The first question pertains to the registry, which would need to be renewed every year. People would have to re-register, since a person's behaviour is subject to change. Therefore, I would make it a requirement that people would have to re-register every year. People could do this at the same time that they file their taxes. There could be all kinds of communication incentives involved. The idea is to make people responsible.

To my way of thinking, the entire population, which would be well-informed, should participate in the organ donation process. There are virtually no good reasons, aside from emotional ones, not to give the gift of life. Personally, if I could donate my liver to the person on my right when I die, I would gladly do so. I think most people would be happy to be a donor, but they have to be given the opportunity to become donors. The technology exists, along with the means.

Your second question had to do with people's behaviour. Annex E of the Standard which excludes people on the basis of their sexual orientation is discriminatory. Perhaps the question could be asked in this Annex if a person has engaged in sexual relations that are considered high risk. Every person, whether male, female, homosexual or heterosexual, would have to answer the same question. That would put an end to discrimination on the basis of sexual orientation. This suggestion is in line with the comments of Mr. Alexander from the Canadian AIDS Society.

It would be an easy step to take, one that would probably be more effective and more respectful of all Canadians. Bringing in more positive measures would be a further incentive for people to register as donors. Right now, homosexuals no longer want to be organ donors. Personally, when I saw the new regulations, I told myself that that was the end of it for me.

[The Chair, Conservative, Joy Smith]

Thank you, Mr. McCutcheon. I know Monsieur Ménard had one more question.

Mr. Alexander, please.