HEAL Committee Meeting
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STANDING COMMITTEE ON HEALTH
COMITÉ PERMANENT DE LA SANTÉ
EVIDENCE
[Recorded by Electronic Apparatus]
Thursday, March 29, 2001
The Chair (Ms. Bonnie Brown (Oakville, Lib.)): Good morning, ladies and gentlemen. I'd like to call this meeting to order.
We are studying a subject pursuant to Standing Order 108(2), an examination of the relation of certain donor exclusion policies to the safety of the Canadian blood supply. We have quite a few witnesses, representing several organizations.
I believe it has been said to you that an opening statement of five minutes from each organization will get this meeting going. Then we'll move to questions from the members of Parliament.
The way it's listed on the agenda, the Canadian AIDS Society is first, with either Brian Huskins or Douglas Elliott speaking, or both sharing the five minutes.
Mr. Douglas Elliott (Legal Counsel, Canadian AIDS Society): Thank you, Madam Chair.
By way of background, for those who don't know, I'm a lawyer and represented the Canadian AIDS Society at the Krever enquiry. I have an extensive background in health law. In fact, until very recently, I was a member of the Health Canada science advisory board.
The position of the Canadian AIDS Society is that the current questionnaire is out of date. The exclusion we are concerned about, with respect to men who have had sex with men since 1977, once made sense and was supported vigorously by organizations such as the AIDS Committee of Toronto when it was first introduced in 1986. However, events since that time have made that question not only useless, but in fact, in our view, dangerous. We feel the question ought to be replaced with a more neutral question.
It should be remembered that the concept of excluding gay men from donating blood was introduced first in 1982 in the United States, at a time when there was no test, and it was a very reasonable, scientific measure, until a test became available. Once a test became available, the question was really a supplement to enhance the safety of the blood system until we had better experience with the test to satisfy ourselves as to its accuracy, and a precaution against testing errors.
Today there are two basic reasons why this question, we feel, is no longer necessary. One is that testing has improved to the point where it is really the front line of defence and it is extremely accurate. The window period is very short, a few weeks, and there's very little safety enhancement to be gained by including the question.
As to what the negatives of the question are, having more questions is always better. We know this from legal documents, which tend to get longer and longer, because lawyers are afraid to withdraw parts of them—they made sense once, so they have to continue to make sense.
What we know from the tragedy of the 1980s is that we failed to protect the blood supply because we kept doing the same thing we'd always done, without thinking about it. Unfortunately, with respect to this question, we're continuing to do the same thing we've always done, without thinking about it, in my view.
• 1120
That's mostly driven, I believe,
by fear of lawsuits. People are afraid that if we change the
questions in any way, there is going to be litigation,
because somehow that question was better.
We feel the question, as it currently stands, is dangerous for a couple of reasons. First, it creates a false sense of security for heterosexual blood donors, who are already less aware of their own risk behaviour than gay men. Don't forget that when this question was introduced in 1986, as I remember from being a member of the AIDS Committee of Toronto, a lot of people accused people like us, who warned of an epidemic of AIDS among straight people, of scaremongering—it would never happen. In fact, cases of new infection are now evenly split between gay men and straight people, and the heterosexual epidemic continues to rise.
The second reason we feel it's dangerous is that it discourages updating and tailoring of the question as the epidemic shifts, relying on historical precedent rather than good, current science. It also impedes the ability of AIDS organizations to work cooperatively with CBS in educating at-risk donors, because contradictory messages are being communicated. For example, the CBS website right now says that one of the risks of getting AIDS comes from exchanging money or drugs for sex. We can't endorse that kind of message, because it's nonsense. AIDS is not transmitted by currency.
The next points are ones that have to do with the adequacy of the blood supply. Don't forget, every time we turn away healthy donors we're putting at risk the people who need blood, and we have shortages of blood that continue today. There are two negative effects of the current policy on the adequacy, the quantity, of the blood supply. One is that young people, who are absolutely essential to the future of our blood supply, don't want to give blood. They don't want to give blood because they perceive that this policy is bigoted and reactionary, and this has resulted in boycotts at campuses. That cost cannot be ignored. That is endangering the safety of Canadians. The second thing is that the blood of healthy, HIV-negative gay men is being rejected. That blood could save lives.
In our view, the current policy is out of date and needs to be changed. It's not that the AIDS epidemic is over for the gay community, but we believe the blood supply could be adequately protected with a neutral question that focuses on risk behaviour. For example, in addition to asking people about their HIV status—and I dare say the vast majority of gay men know their HIV status, which probably can't be said of heterosexuals—a good question would be, “Have you had unprotected sex with a new sexual partner in the last year?” That question focuses on risk activity, that question is scientific, and that question will protect the blood supply, without the negative effects I have described.
What we're anxious to do here is to put safety first, but to put real safety first, and not rely on pseudo-science that has harmful social effects. Canadians deserve better.
The Chair: Thank you very much, Mr. Elliott.
The next speaker will be Roger Leclerc.
[Translation]
Mr. Roger Leclerc (Director General, Coalition des organismes communautaires québécois de lutte contre le sida): Good morning. I will be speaking in French.
I represent the Coalition des organismes communautaires québécois de lutte contre le sida. My presentation, which is French, has been submitted to the clerk, who will see that it is translated and forwarded to you later on. Perhaps my presentation is not as technical as the one given by the Canadian AIDS Society, but the general ideas are the same.
At the outset, I would like to mention that blood donation is not, in the view of the Coalition, a constitutional right but an individual gesture that individuals decide to make. Hence we recognize that the blood system, the organization responsible for collecting blood, is entitled to take steps in an effort to ensure the quality and safety of this system.
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At the same time, we have individual constitutional rights
that prohibit discrimination in Canada. The Constitution and
customs, in particular, prohibit discrimination in all its forms.
Hence we have a conflict between two communities, two societies with constitutional rights: on the one hand, there is the general population that is entitled to have access to safe blood and, on the other hand, there is the gay community that has a collective constitutional right, the right to be recognized as citizens in their own right.
Here I am making the distinction between the right of gay individuals who want to give blood and the right of the gay community that has collective rights.
My presentation will be focussing on the gap between these rights and on the way to balance the safety of the blood system which, in our view, constitutes a priority, as well as on individual and collective rights.
Clearly, the objective of COCQ-SIDA is to reduce the transmission of HIV; this is the battle that we have been waging for more than 10 years, and some of our groups have been involved for more than 15 years. Moreover, gays are entitled to adequate prevention. Today in Quebec, at least 75% of the people who are living with HIV are gay. The entire community has, therefore, been hit hard by HIV and, as such, must receive, as it is entitled to receive, adequate preventive services.
Many studies have shown that, in order to provide adequate services, prevention in the gay community must be tied to the recognition of this community's collective and individual rights. Consequently, COCQ-SIDA supported, for instance, the recognition of gay marriage, not because of the symbolic value of the marriage itself, but because of its symbolic value with respect to the recognition of gays and lesbians as full citizens as well as the responsibilities that are tied to this recognition.
In our opinion, in order for the preventive work in the gay community to be effective, it must go hand in hand with full recognition of the gay's role as a citizen and, as such, the right to give blood.
Selecting blood donors is the first step ensuring the quality and safety of the blood distribution system. Two other steps follow: laboratory analyses, the regulation and verification of blood banks. I will not cover these topics so that I can focus exclusively on selecting blood donors.
We already have many criteria that we can use in order to reject blood donors. For example, you cannot give blood if you have a tattoo. The list of criteria is long. None of these criteria for rejection is based on belonging to a group, on the simple fact that an individual belongs to a group. The criteria for rejection are always based on conduct, namely, on events that have occurred in an individual's life and which makes him or her, for a given period of time, unsuitable for giving safe blood donations.
Gays are rejected collectively as blood donors not because they're individuals with a potentially higher-risk conduct, but because they belong to the gay community. In this respect, the entire gay community and each of its members individually view this as discrimination that is difficult to justify for the reasons listed by Canadian Society and difficult to justify given that circumstances have changed since this questionnaire was designed.
Is the current questionnaire safe? In this respect, I strongly agree with the position taken by the Canadian Aids Society; we believe that the questions that are currently asked, which do not deal with safe sexual behaviour, but rather membership in identified groups, jeopardizes the collection of blood. Currently, heterosexual men may very well be engaged in unsafe practices and, consequently, be vectors for transmission. However, the questionnaire does not take this possibility into account. However, it automatically eliminates any gay man, regardless of what his sexual behaviour may be like. This is where the problem lies.
In our opinion, questions should be asked on individuals' unsafe practices, regardless of what group they belong to, instead of asking questions about whether or not they belong to a defined group.
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Moreover, it would be interesting to assess the potential
risks. I do not know the percentage of the population that gives
blood or wants to give blood, but I am presuming that it must be
anywhere from 5 to 10% and that 90 to 95% of the population does
not give or does not want to give blood. We can presume that,
amongst gays, the percentage is similar, or perhaps even smaller,
because some gays, including myself, for political reasons, refuse
to donate blood because of this discrimination against gays.
Perhaps we should conduct a study to assess the risk entailed in
accepting gays if they were asked questions about their sexual
practices.
In order to guarantee the safety of the blood system, we clearly feel that questions should be asked about the sexual behaviours of individuals, regardless of what group they may belong to.
I would like to conclude on another point. At present we urge people to donate blood by appealing to their humanitarian side. I am exaggerating, but if you give blood, you are a hero. By preventing me from giving blood, I am prevented from becoming a hero. Perhaps we should take a second look at the way we solicit blood donors in an effort to lighten up on all of this vainglory, this temporary glory that surrounds blood donors. If we were to do this, the debate would no doubt be a little bit less emotional.
Blood clinics are often held in the workplace or in schools. In the case of the workplace, for instance, the employer strongly encourages employees to give blood. By not participating, I am either an individual who is not humanitarian enough to donate blood, or an individual with a very perverse reason for not giving blood. We may want to take a second look at that aspect as well.
[English]
The Chair: Thank you, Mr. Leclerc.
Now we'll have either Mr. Valois or Mr. McCutcheon.
[Translation]
Mr. Laurent McCutcheon (Vice-President, Political Action, Table de concertation des gais et lesbiennes du Québec): My name is Laurent McCutcheon. With me is Pierre Valois.
Thank you for giving us this opportunity to speak to you today. The Table de concertation des gais et lesbiennes du Québec is an organization that brings together many organizations and individuals, it is a type of federation of Quebec organizations advocating for the rights of gays and lesbians in Quebec.
At the outset, I can say that I agree with what was said by my predecessors, but our purpose in speaking to you today is to make the public decision-makers aware of the negative effects of systematically excluding homosexuals from donating their blood, to encourage decision-makers to find solutions that will guarantee the protection of public health while at the same time avoiding discrimination against a group of people on the basis of their identity. Giving blood is more than an act of generosity, it is a citizen's duty. Even if homosexuals are highly responsible, they cannot fulfill this duty.
Mention must be made of all the work that has gone into guaranteeing the protection of public health and implementing all of the controls designed to exclude high risk donors. This prevention is a matter of social responsibility, and homosexuals support it. This prevention is designed to protect all those who receive blood, including the homosexuals who may potentially require this blood.
Obviously, the Table de concertation does not have the expertise required to give its opinion on the control methods used. It must rely on specialists to do this. Moreover, in Canada, no one will deny that homosexuals were the first group infected with HIV and were the first victims. As a result, they were denied the opportunity of becoming blood donors, regardless of their sexual practices.
The state of emergency and the virtual panic that existed at the time dictated radical policies. Nevertheless, 20 years later, the time has come to question the basis of the policy and to look for balanced solutions, balanced solutions between the guarantees that must be provided to those receiving the blood and respect for the donors. Donor rejection policies should be based on sexual behaviour and on dangers associated with such behaviour. Systematic rejection based on sexual orientation, without any consideration for practices, is discriminatory.
We fully appreciate that the objective is to protect those receiving blood. Nevertheless, because of the current state of affairs, homosexuals perceive this policy and the way it is enforced as systematic rejection of their sexual orientation.
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Imagine for a moment the impact that such a statement has on
a young boy who is just beginning to realize that he is homosexual
and who is told that he constitutes a risk simply because he is
homosexual. He cannot hope to be treated equally even if he is
responsible. Moreover, he is taught to protect himself through safe
practices. In the same breath, he is prohibited from donating his
blood even if he abides by the guidelines that the same authorities
have given to him.
Given that AIDS is no longer exclusive to gays—we now know about risky practices—why not try to exclude donors that present a risk because of their practices and not because of their sexual orientation? The current policy does not make any distinctions. It discriminates, undermining the credibility of a significant group in society and may well produce perverse effects such as those already described by my predecessors.
The process of coming to terms with one's sexual orientation is generally difficult, necessitating the support of one's family, school, workplace, social and legal environment.
Public health policy-makers cannot overlook the impact of their decisions on people who have been excluded from giving their blood. They also have the obligation of considering all factors when making their decisions. Control and prevention means must be mindful of all groups in society and should not disturb the psychological balance of excluded individuals.
Excluding homosexuals, without any consideration of their practices, may also have a perverse effect. By doing this, are we not also depriving ourselves of an important pool of blood donors? Over the past few years, homosexuals have, faced with the challenges of prevention, shown an extraordinary ability to be responsible. They have demonstrated that they are citizens in their own right. They want to be associated with this effort to take preventive measures and to protect the public. We submit that the policy deciders have an obligation to design policies that are non- discriminatory and that respect all groups of society. Thank you.
[English]
The Chair: Thank you, Mr. McCutcheon.
Mr. Plater from the Canadian Hemophilia Society.
Mr. John Plater (Member, Board of Directors, Canadian Hemophilia Society): Thank you very much. By way of introduction, I'm a member of the Canadian Hemophilia Society. I sit on the board of directors. I'm a lawyer in my professional life, but I'm not here in that capacity today. I also am a person with severe factor VIII hemophilia and was infected with HIV and hepatitis C.
These days I find myself unable to speak at all in public about the blood supply system without plagiarizing from Justice Krever, so I will do that for a moment. I have a written submission, but it wasn't prepared in time to distribute here today. I do apologize. You will get that.
Justice Krever was referring to advice that had been given by the honourary counsel for the Canadian Red Cross in 1983. Justice Krever concluded that the advice that had been given and wasn't really followed was sound advice, and should have been followed. The counsel said:
-
The evidence of possible unacceptability of the
blood does not have to be conclusive—the decision can
be made on a basis of “reasonable doubt” as to its
suitability. With reference to the AIDS problem in
particular, the premise is not that Canadian Red
Cross has to justify beyond any scientific doubt that
there is a link between the designated “high risk
groups”
and the development of AIDS since, if there is even a
possibility of transmission via blood, Canadian Red Cross
has
the moral and legal obligation to protect the blood
recipient above all.
It continues to be the policy of the Canadian Hemophilia Society that we're committed to this principle that in any consideration regarding the formulation of policy around the blood supply system safety of the recipients must always be paramount. It must always be primary.
We haven't formulated a particular policy on the questions being raised today about the present questions being used in the donors survey. We're also always cognizant of the fact that it's often very difficult to apply this principle of safety in a real, working blood supply system.
At present, Canadian Blood Services and Héma-Québec have a very difficult task in front of them. They're constantly faced with demands for an increased blood supply for individuals who have faced trauma, surgery, or whatever the need for blood is. At the same time, they're constantly being asked to reduce the risk to minimal, and in some cases to do the unreasonable—namely, eradicate all risk altogether.
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We
recognize that's a difficult thing to do, so we
constantly encourage reappraisal of the system,
reappraisal of donor screening, and reappraisal of the
technical side of the blood supply system. We
commend this committee for also taking a look at it and
reviewing it.
I think we all know, if we read the newspaper, that the blood supply continues to face new threats. It continues to face the threat of unforeseen disease dangers that we don't know about yet. The Canadian Hemophilia Society has been encouraged by the recent measures taken by the CBS and Héma-Québec to protect this system from the theoretical risk of new variants of CJD, Creutzfeldt-Jakob disease, or “mad cow” for those who use the vernacular.
We're also concerned that it's very easy to become complacent about how much protection there is in the system for the diseases we're aware of, and how we rely on technology to reduce the risks of those pathogens we know about. It's true that testing and viral inactivation processes have reduced the threat of infection by HIV and hepatitis C, but they are not, admittedly, completely effective.
We also feel it's important to remember that not only is there a concern about the window period, and the inability of the test to discover donors who are still in that window period between becoming infected and the test being able to demonstrate that, but we're also concerned that there will always be the chance of human error in the system and that in any test, even if the test is good, if it's applied incorrectly, things can slip through. At the same time, we don't suggest that donor screening methods are foolproof. Obviously, they're only as good as the answers that are given on the forms. They're only as good as the person hearing the responses and asking further questions to get more information.
I think what we're always concerned about is to feel confident that new technologies and traditional recognized donor screening techniques are always seen in tandem, and not considered as alternatives to one another. We're concerned that they're understood fully, that they're researched fully, that they're continually being updated and made the best they can be. But we also believe they're two things that should work together to create a safe system, not things that should be considered alone.
We feel that if there are any changes that are going to be recommended to the present donor screening and exclusion criteria, whether it's to reduce restrictions that exist or to increase restrictions, or include new restrictions that don't exist, any change must be made on the basis of sound scientific reasoning and a thorough investigation of the best data that exists, not just in Canada but around the world.
We encourage you to speak with the representatives from Canadian Blood Services and Héma-Québec, who I believe will be meeting with you sometime in the future, and ask them hard, tough questions about the research they're undertaking right now. We understand they are reviewing donor screening policy. They are looking at what their counterparts around the world are doing—in particular, studies out of the U.S. and out of Europe.
Finally, before any change is made, and this is something we've learned at the Canadian Hemophilia Society and we try to promote with any public body that's making policy decisions, whether it be about the blood supply or health care in general, we feel these types of decisions must be made based on an open and public appraisal of the relevant benefits and risks of making change—in this case, the benefits and the risks of adding new restrictions, and at the same time the benefits and risks of removing restrictions.
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We agree with our friends here today that it is time
to do a thorough review of the donor screening process.
There have been recent additions. Obviously, the
exclusion of donors from Britain who have travelled in
Britain since 1980, and have been there more than six
months, and from France was met with a lot of
skepticism around the world. Canada was at the
forefront of making a decision to introduce such an
exclusion, and I think we've seen that the world has
actually followed Canada's lead for a change, which is
a fantastic reassurance for us.
That's one addition that was made to the list. We think it is time to take a look at the whole list and ask ourselves whether it is doing the best job of providing safety.
After there has been a proper review, if it's determined that certain of the categories are unnecessarily broad, we'd like to see them changed. If some of them are not broad enough, then we'd like to see that changed too.
From a personal perspective, the one thing I'd hope you would leave with and remember from what I've said today is that essentially one of the issues we're addressing here is almost a reversal of the question we were asked back in the early 1980s. Then we were asked “Is the risk great enough to warrant change?” Now we're being asked “Is the risk reduced enough to warrant change?” There are a lot of people who won't be able to watch us answer this question, and I think we owe it to them to give them the best answer we can, because the last time we were asked it, we failed.
Thank you.
The Chair: Thank you, Mr. Plater.
Mr. Fisher, please.
[Translation]
Mr. John Fisher (Director General, Égalité pour les gais et lesbiennes (ÉGALE)): Thank you. I am pleased to appear before you today, accompanied by Ron Chaplin, Chief of our Political Action Committee at ÉGALE and by our colleagues from other organizations.
ÉGALE is a Canada-wide organization dedicated to promoting equality and justice for lesbians, gays, bisexuals and transgendered persons. First of all, I would like to point out that many people think that the objective of avoiding discriminatory questions is contradictory to the principle of protecting the safety of our blood system. We feel that these two principles complement each other. Gays and lesbians share this objective of protecting the blood system.
[English]
My colleague Mr. Plater has expressed the principle of safety first. In order to encompass that objective, we need a questionnaire that is accurately tailored to produce good results. My colleagues from other organizations have emphasized why the current question isn't tailored to meet that objective, and I won't repeat what they have said.
I do want to underline also that this isn't just a difficulty with the notorious gay question. There are plenty of other questions throughout the questionnaire that are asked in ways that may have been appropriate at one time when less information was available but are no longer relevant or meaningful. As others have said, the whole questionnaire needs to be revised.
Frankly, there are some questions that are expressed in a way that is just plain judgmental—for example, the question that asks about whether you have had illegal drug use using a needle. Clearly, drug use is not any more or less safe or risky depending upon whether the drugs are legal or illegal. It doesn't matter whether the drugs are legal or illegal, whether you're getting a tattoo, or whether you're injecting insulin. The point is, the question should be focused on security of needles and the extent to which the needles themselves are clean and are not being shared.
So if there are principles that we can all share about protecting the safety of the blood supply, there is another principle that I think we can also all be committed to: If we can achieve equally accurate results while asking questions that are non-judgmental and non-discriminatory, then we should do so.
There have been some examples given of different ways in which the questions could be reformulated. In order to avoid repetition, I'll simply summarize that the attendant risks of asking questions that are poor and not well formulated can be itemized fairly clearly and easily.
They obtain results that are not accurate. People are not going to respond to questions that are judgmental in the same way they would if the questions were more neutrally framed. People aren't going to be quick to affirm that, yes, I've taken illegal drugs. They're going to be far more likely to respond accurately to a question that asks just about safe needle use.
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Similarly, people are not going to be quick to affirm
that they belong to risk groups to which there is a lot
of stigma and discrimination attached within our
society. They're far more likely to respond accurately
if questions are asked simply about behaviours, without
attendant judgments attached.
So if we want accuracy, we need neutral and objective questions, questions that focus on behaviours and facts rather than upon groups and identities, particularly when the reality is that HIV does, unfortunately, have some prevalence in groups that are subject to a lot of stereotyping and discrimination in society generally. We have to take that into account and recognize that avoiding judgments is particularly important in those contexts, while recognizing that HIV is by no means limited to any group but has the potential to affect all Canadians.
Obviously what follows from that, too, is that a poorly worded question reinforces stereotypes. It sends poor educational messages to everybody who passes through the doors of Canadian Blood Services or comes in contact with the questionnaire, regardless of whether they then proceed to give blood, or are accepted or rejected. They carry that information away with them, and it can influence behaviours, which is not compatible with the objective of minimizing risk of HIV transmission through proper and sound educational policies and practices.
My colleagues have alerted you to the risk of losing pools of potentially healthy donors through boycotts on student campuses and in other environments where people are just plain offended by the questions as they're currently framed. It creates a false sense of security in the blood system if we target particular groups and thereby exclude other groups that may also be at risk, or, I should say, individuals who engage in behaviours that might place them at risk, but those questions aren't framed in a way that enables us to have confidence that the questions as framed will give accurate results.
For all those reasons, I think EGALE would support the position of our colleagues that there needs to be a review not just of this question, but of the questionnaire as a whole, and that it is not something that is incompatible with the objectives of advancing security of the system. In fact, it is one that works together with that objective, and we would hope that these questions will be revised, and revised in consultation and collaboration with the community groups that do have some interest and some expertise to offer in how questions can be reformulated in a less judgmental way.
Thank you.
The Chair: Thank you, Mr. Fisher.
We'll move forward to the questioning. I'll invite Mr. Merrifield to go first.
[Translation]
Mr. Réal Ménard (Hochelaga—Maisonneuve, BQ): How much time do I have?
[English]
Be generous.
The Chair: In your absence we weren't very restrictive, and people seemed to cooperate. I'm going to try that again today and see how long people take. I may send you a note, Mr. Ménard.
Mr. Merrifield.
Mr. Rob Merrifield (Yellowhead, Canadian Alliance): I have a history of taking an awfully long time.
The Chair: No, you don't. You're very succinct.
Mr. Rob Merrifield: I'll try to shorten it up a little bit this morning.
I found the presentations very interesting. I listened intently, and I will continue to do that.
Giving blood is such a selfless act that to see it as a discriminatory thing is a bit of a stretch, from my perspective, but that's neither here nor there. There are a lot of people who are not actually allowed to partake in giving blood.
In fact, I was in that situation one time, and I regularly try to give blood. I certainly don't see it as a heroic move, but as something I do because I just want to help out wherever I can.
What exactly is the question on the questionnaire that you would disagree with? Maybe it's just my ignorance of knowing exactly what it is. I can't recall from the last time.
Mr. Douglas Elliott: There's a bunch of them, but the one that we're particularly concerned with is for male donors: “Have you had sex with a man, even one time, since 1977?”
I'll explain the reason the question was phrased that way. When it was introduced in 1986, it was thought that AIDS came into North America in 1977, which is not true, and it was thought that the virus could be in your bloodstream for five or ten years and be undetectable—the tests would not show it—which is also not true. But we got this wording in there, and like so many other things in life, through inertia it's remained there.
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There are other ones as well. There are questions
about taking money for sex. There are questions about
being in certain countries. There's a list of African
countries that I find mystifying.
The problem is, these questions are generated in the United States, and everybody else around the world follows them for fear of being criticized for not following the so-called gold standard.
Actually, one particular homosexual question was found to be discriminatory. They were asking the question in South Africa, where 99.9% of the cases are from heterosexual transmission. They were aping the United States in asking this question that was found to be discriminatory. The South Africans have created a blue ribbon commission to look at a series of questions that make sense in South Africa in the context of their AIDS epidemic rather than just doing things the way the good old U.S.A. does it.
Mr. Rob Merrifield: When it comes to public safety on this issue, your presentation suggested that it was an attack on gays in terms of the gay stereotype. But is that any different than if somebody has a tattoo, or else a heart problem, or high blood pressure, or kidney disease, or diabetes, or cancer? Those are also illnesses.
Mr. Douglas Elliott: But heterosexuals can get AIDS just the same as homosexuals can.
Mr. Rob Merrifield: That's true, but the question that you said you had a problem with was an act, was it not? That's what you're saying is the problem.
Mr. Douglas Elliott: We're having a problem with that particular question. Let me just give you an example of how this can endanger the blood supply.
This is a question that was being asked in the eighties in Newfoundland.
I don't know where you're from, sir.
Mr. Rob Merrifield: It doesn't really matter.
Mr. Douglas Elliott: A whole bunch of young heterosexual women who had donated blood found out, by giving blood, that they were HIV-positive. We are very lucky that our testing of blood was sufficiently accurate that none of that blood entered the system, but because we were preoccupied with the AIDS epidemic of the eighties, where the focus was on gay men, rather than the AIDS epidemic of the 21st century, increasingly the problem is young people, regardless of their sexual orientation. The average age of infection now is 23.
In particular, with all due respect to heterosexuals, despite our years of trying to educate them about the fact that they're at risk, they still don't get it. They're now the ones who pose a danger to the blood supply, more so than gay men, who, if you tell them “If you've engaged in these risk behaviours, you shouldn't give blood”, won't.
Right now our blood supply is safe largely because gay men have been very responsible, and I dare say they will continue to be. But if we don't start bringing the questionnaire up to date, then one of these days, one of those straight young women is going to give blood, it's going to slip through the system, and we're going to have another John Plater on our hands.
The Chair: I think Mr. Plater would like to respond to Mr. Merrifield.
Mr. John Plater: There is one way to address, although not come up with an answer or a solution to, what change may be called for. To put it in perspective, question 29 asks whether in the last 12 months you have had sex with someone whose sexual background you didn't know. That exclusion should be catching a lot of heterosexuals, obviously.
Again, I think there are two issues that from our perspective need to be asked in the context of proper studies—and a variety of studies, not just the epidemiology but also maybe focus group studies. It needs to be studied by experts. To what degree is that question not capturing the people it should because of the way it's framed? How many people walk in and make assumptions about their sexual partners that are grossly incorrect? Can that question be framed in a better way to catch the individuals that Mr. Elliott refers to?
The second question needs to be in the context of men who have sex with men, in the context of the spouses of hemophiliacs, and in the context of individuals from identified countries. We need to ask the question epidemiologically—that is, what is the reduced risk if we look outside this 12-month period? The 12 months is an attempt to recognize that we have some confidence in the technology we use to test blood.
• 1200
We just have to take a hard look at
what are the real risks of groups, behaviours, etc.,
and to what degree we are prepared to accept that those
risks will exist by modifying the type of questions—to
say, for instance, that 12 months is the period we're
looking at.
I mean, by one argument—and again, I'm not suggesting this is the case—why pick, as we've said, 1977? Is it an earlier date? Is it a later date? If we were going to stick with the question as it was formulated, why is 1977 the date that we should be using?
So we need to be completely open-minded to all the aspects when we look at these particular questions.
The Chair: We're going to have to move on to another questioner now. Mr. Merrifield's time is up. Perhaps Mr. Leclerc can put his point forward in answer to another question.
Mr. Roger Leclerc: You can be sure of that.
The Chair: I thought so.
Madam Scherrer.
[Translation]
Ms. Hélène Scherrer (Louis-Hébert, Liberal): Like Mr. Merrifield, I take it somewhat for granted that giving blood... Here, in Canada, we are fortunate, at least, because this is not compensated. I feel that this is already an advantage.
Giving blood is not necessarily a very exciting activity either. It is not very, very exciting. I would presume that an individual is not going to give blood, first of all, to infect somebody or to do something else. Let's take it for granted that the people who donate their blood really do so for altruistic reasons because they think that this is indeed a social responsibility. So let's take it for granted that those who go to the clinics do so, generally speaking, out of goodwill and in good faith.
I'd like to turn to the questionnaire in its entirety, and not necessarily with respect to AIDS. Does the questionnaire as it is written truly guarantee the safety of the product? When you consider that the people who go to the clinics don't necessarily understand the questions... The questions are not always easy. A question like “Have you had sexual relations since 1977?” is very clear. But there are other questions, with respect to medications and relations, that are not. Is a questionnaire asking the respondent to check off a “yes” or “no” really an instrument that guarantees safety? When it is decided whether or not the questionnaire is to be used as a security measure, then we can decide what it should contain. In your opinion, does a questionnaire asking people to answer with a “yes” or “no” before they give blood truly a safe instrument?
[English]
Mr. Douglas Elliott: Mr. Huskins should know the answer.
The Chair: Mr. Huskins.
Mr. Brian Huskins (Representative, Canadian AIDS Society): I'll just quickly give my background. I've been involved with Health Canada through the transition to the new Canadian Blood Services, and I've served on a number of committees there.
To answer your question around questionnaires, there are places in the world where there are no written questionnaires that are asked before the giving of blood because of the altruistic nature of actually giving. There are countries where there are questionnaires similar to Canada's. I think that part of the answer is that there are some studies out there—and I'm not the person to give you those studies, although there are people who can give them to you—that will show either the benefit or non-benefit of a questionnaire, in terms of the larger screening process, when you're looking at specifics.
In Canada, there's a process underway, which will hopefully come to fruition in November, that is being led by the Canadian Blood Services. I have to look at the name of the conference just because it is so long: “Blood-Borne HIV and Hepatitis: Optimizing the Donor Selection Process”. It is a consensus conference that will look at many of these questions.
Is the current process relevant? If I were to highlight anything, as a person who works from the community perspective—and I'm here representing the Canadian AIDS Society, not Canadian Blood Services—it is that it gets into the fact that in Canada we have a two-part system. You have a regulator, and you have the operator of the system. Should policy changes be led by the regulator, in terms of regulation, or should they be led by the operator?
I would hasten to say that in Canada right now, many times it is being led by the operator. That has its own benefits, but the challenge there is when you're dealing in a regulatory environment internationally, it creates problems when there may be some barriers to making change.
So there are countries where there is no questionnaire where it does work very well. The testing process has come a long way since 1983, when you had to look at risk groups, which was the only way because there was no test, so it was easy to look at risk groups. That is some of the history we bring to this.
• 1205
Now we can look at risk activity, and
every day there are improvements in the testing of
blood. Genome amplification testing
has been implemented for hepatitis and HIV in Canada,
which closes the window period down incredibly.
We're going to see it for hepatitis B coming up very
quickly in the next year and a half or so, which then
eliminates another risk. We actually look for the
virus rather than the antibodies.
So we're seeing a lot happening on the testing end, and I think that this comes at a point in the process that, in November, will actually get us maybe to where we'll have some direction to the future. I think the challenge there, perhaps, for a parliamentary subcommittee, is to figure out where do the regulators fit in that, and how much initiative and drive will the regulators bring to that process when dealing with the Food and Drug Administration, or the European councils?
The Chair: Thank you.
Mr. Ron Chaplin (Chair, Political Action Committee, Equality for Gays and Lesbians Everywhere): Might I add a very brief historical note?
[Translation]
Mr. Roger Leclerc: I would like to answer some questions.
[English]
The Chair: Mr. Leclerc has been waiting.
Mr. Roger Leclerc: Yes, for a long time.
[Translation]
The only thing in the world that is safe is a coffin six feet underground, and nothing else. It is true that the questionnaire is very limited, underscoring why it is so important to draft it properly.
AIDS prevention groups have been advocating, for years, that it is the behaviour and not the belonging to a group that is important. The questionnaire should be focussing on behaviour, and nothing else. Anybody who engages in unsafe behaviour constitutes a danger. Consequently, if we need a questionnaire, and we believe that this is so, it should focus on the behaviour of individuals.
To answer the question about the difference between asking a homosexual whether he's had sexual relations since 1977 and asking a pregnant woman or a heterosexual if he had made love in the past 12 months with someone he didn't know—moreover, you need to define what is meant by “did not know”—the difference is that the heterosexual, if he answers yes, is going to be able to come back the next year and say that he can give blood. The homosexual will be automatically rejected, individually and collectively. That is where the problem lies.
Let's make sure that the blood is safe... I fully appreciate what Mr. Plater is saying when he talks about a moral obligation to protect blood from these problems. I agree with that, but we also have a moral obligation to protect individuals who belong to more vulnerable categories, who have behaviours that are less safe and to protect them, which means effective prevention. This is where the problem arises between the two groups, which both have rights. In this instance, we are no longer talking about safety, we are talking about ethics and morality.
Ms. Hélène Scherrer: I would like to add something to that. What the questionnaire is trying to accomplish, is not to say that there is one class, a second class or a third class, but to identify the people at risk, whoever they may be.
Mr. Roger Leclerc: That is its downfall. It should identify at-risk behaviour and not people at risk.
Ms. Hélène Scherrer: That is quite right.
Let us look at the terminology. Having read the questionnaire, you easily become a person at risk if you are conscientious, because you have to stop and ask yourself if you did indeed take some medication, if you did indeed travel to a certain country, if you've had a certain experience, etc. It becomes so difficult.
In fact, I am having serious doubts as to whether or not a questionnaire is truly a safety net. I understand the questionnaire and I will take the time to study it, and it is clear that at some point, according to one question or another, I will become a person whose behaviour is risky. At that point, what will happen is that no one will give blood anymore if we do not have some safety feature that we can count on, some test that can be done quickly on anyone. If not, with what is happening now such as foot-and-mouth disease, mad cow, this, that and the other, we will all at some point in time be people at risk. At that point, there will be no more blood donors. Answering the questionnaire will become, each and every time, a moral dilemma. At some point or another, we will always be considered to be at risk or possibly at risk. Therefore at that point, we will refrain from giving if we really have a social conscience. Personally, I have reservations about the questionnaire as a safety net.
[English]
The Chair: Mr. Chaplin would like to comment.
Mr. Ron Chaplin: Just as a historical note, let us remember that those questions and that questionnaire—and particularly the HIV question on the questionnaire—were generated by the American Red Cross and the American Food and Drug Administration, to deal with a particular problem that they were facing.
• 1210
Your point is very well taken, Madame Scherrer, that the
American system is not a voluntary system. The
Canadian blood donation system is 100% voluntary. This
is not the case in the United States, where to this day
many people are paid for their blood, and those people
who contribute usually come from low-income areas where
infections like these are quite rampant. I think we
need to keep that in mind.
The Chair: Thank you, Mr. Chaplin.
Mr. Ménard.
[Translation]
Mr. Réal Ménard: I have four questions, but I would like to point out to the members of the committee that it is 1977 that is at issue. The truth is that since 1977, a person who has had sexual relations with a same-sex partner is excluded. Someone said 1987 earlier on, but it is indeed 1977.
Furthermore, the questionnaire is not the only issue. A series of tests could be introduced into the blood banks by Health Canada. The questionnaire is tied to compulsory tests in the existing blood banks.
My four questions are the following. I will ask them all now, one after the other, given that the chair is less likely to cut you off than me.
Mr. Leclerc, you have said that with the present system—and I think this is an important thought for the committee—heterosexual men can be carriers and the questionnaire will not identify them. I would like you to speak to that.
Secondly, do new screening technologies exist that could shorten the window of opportunity where the presence of antibodies is not immediately detected in the tests? Does PCR technology make this possible? Take note that the committee must report on very precise issues. The Canadian Hemophilia Society's representative quite rightly reminds us that we cannot risk changing the rules of the game if we do not have a reasonable guarantee that there will be no new carriers.
The Krever Commission has stated that the chances of being contaminated through a blood transfusion presently are one in a million. Clearly we can never reduce the risk factor to zero, but is it possible we could be more efficient? Are there new technologies available that would make this possible?
Thirdly, when I first became interested in this problem in 1999, I consulted several people and a certain number of epidemiologists, including Dr. Alary, who in my opinion is an excellent doctor, and Dr. Réjean Thomas, who is not an epidemiologist but a clinician. We had proposed a criterion according to which any man who had had sexual relations with another man since 1977 could give blood if he passed all the available tests. I remind you that we had considered the possibility of including PCR, which would reduce the window of opportunity as much as possible in the blood banks, and also the practice of abstinence during the six preceding months. I would like to hear your thoughts on the relevance of this criterion if you feel you have the necessary expertise. Do you think this is an interesting database to review the questionnaire and obtain another criterion?
Mr. Roger Leclerc: I will speak briefly about heterosexuals first.
Regarding heterosexuals as vectors for transmission, the question asks: “Have you had sexual relations with a stranger during the last six months?”. If I have had sexual relations with a girl that I have seen at “happy hour” in a bar every Thursday night for six months, is she someone I know or is she a stranger? What does “stranger” mean?
As far as I am concerned, the questionnaire as presently drafted allows heterosexual people to think, in all confidence, that they are not vectors for transmission of AIDS, whereas they are.
As for available tests and abstinence, we have never done prevention through proposing abstinence. We believe this is something that we cannot ask for. People may choose to abstain individually, but to ask people to collectively abstain, with the prize being the ability to give blood, seems unrealistic to us.
Mr. Réal Ménard: But you agree with me that there are people who, at some point in their lives, as hard as that may be, could be celibate for five, six, seven, eight or nine months, and that with this criterion, together with new technology, we could possibly receive more blood donations.
Mr. Roger Leclerc: Yes, but this has the unwanted effect of saying that if you wish to have the honour of giving blood, you must abstain, which seems a bit difficult to me.
Ms. Hélène Scherrer: If you want to be a hero.
Mr. Roger Leclerc: Yes.
Mr. Réal Ménard: We are all familiar with this kind of hero, Ms. Scherrer.
The Chair: Who would you like to comment on those questions?
Mr. Plater.
Mr. John Plater: The first issue you raised is whether anybody here has the expertise to comment. With deference to my friends, that's one of my concerns here, that I'm not sure we do.
I guess my concern, when we get into the issues of risk and the present status of technology, is that although many of the people here are aware of what's going on, I don't think anyone has the expertise this committee needs to do a proper review of that.
There are two things I would say. First, Mr. Leclerc raised the issue of competing rights. There is no question there are competing rights here. We're all aware this country is not perfect in every way, but it has a body of knowledge on how to deal with competing rights. Under the charter and under each province's human rights codes, there are tests available to weigh the balance of public risk versus discrimination against individuals.
In donor screening, there's no sense in trying to colourfully get around this fact. Donor screening is discrimination. It is, by definition, discrimination. It will discriminate against people. Is the discrimination rationally connected to the purpose? Is it a reasonable measure given the purpose?
At some point that becomes a grey area, an area of public policy. I would say the best way to then make a determination is to make a public appraisal of what we recognize the risks to be and the degree to which we're prepared to discriminate against people.
I think through that process we'll need two things. We will come up with good questions. We will be forced to narrow and refine those questions so we do two things: one, capture and remove risks we're not prepared to accept; and two, gain the benefit of the willingness of individuals in the country, whoever they are, to give of themselves and to give blood.
Let's not put the cart before the horse. Let's not start with this group asking “Would you accept x question?”, “Would you accept y question?”, or “Would that be okay with you?” Let's get the research. There are bits and pieces. Let's collect it, take a long hard look at it, and put it through the test of human rights. Then we start to ask ourselves what the best question is to use.
The Chair: Thank you.
Mr. Elliott.
Mr. Douglas Elliott: I'd like to respond to what Mr. Ménard asked.
First of all, I would totally agree with the question put by the famous Dr. Thomas. I think the Canadian AIDS Society could say that person is definitely not at risk. The test now is very improved so we have a six-month period with the PCR test. The only risk is the human error risk, as Mr. Plater said. If the mistake is made in the performing of the test, no one could suggest the test would not detect antibodies after a six-month period.
However, that still doesn't address the concern we have that Mr. Leclerc identified. It still seems to focus on the idea that somehow gay sex is inherently more risky than straight sex. That's just not the case.
We don't want to have HIV-positive gay blood donors infecting people. That's not our objective. We want to protect the blood supply. That's the most important thing.
But as Mr. Leclerc pointed out on the question of knowing your partner, this is the most dangerous question. Studies show straight women expose themselves to risk because the guy looked healthy and was known.
We have statistics on studies of sexual behaviour showing perhaps one-third of married men, and maybe 25% of women, have affairs outside of marriage. Are these people saying they knew the person because they're having an affair? What about the person those people were sleeping with? It's not really dealing with that aspect of the problem.
• 1220
Indeed, we actually heard in the Krever inquiry that
young people in Newfoundland were using anal
intercourse as a form of birth control. They couldn't
get access to condoms because of social attitudes in
that area. That's why I totally support the concept
Monsieur Leclerc was talking about.
I don't disagree with anything Mr. Plater has said. To be effective, the questions have to focus on risk activity. You can have good, neutral, and effective questions, if you're going to have questions at all.
I agree with Madam Scherrer that it's really current to look at how many people we lose or turn off by asking all these millions of questions.
My mother keeps giving blood, thank God. She puts up with it. There are lots of people who can't be bothered. That means there's not blood available to help people like Mr. Plater, who need blood products on a regular basis. We have to look at the whole problem in a scientific, rational way, and not in a knee-jerk way from either side.
Gay people can't say it's always discrimination if there's a question that excludes them. It's not true. At the same time, to assume, if we ask a question that gets rid of the gay people, that the blood supply is safe is also a foolish approach.
The Chair: Thank you.
Mr. Brian Huskins: Madam Chair, I wanted to add one other thing that certainly is of concern in Canada. This plays a larger role in the world and in North America. For products such as factor VIII, which Mr. Plater would use, we supply only 30% of the blood for the actual product when it's fractionated through our Canadian sources.
Although we say in Canada it's a voluntary system, the only thing we're actually self-sufficient in would be fresh-frozen plasma and some of the quick products—
Mr. Douglas Elliott: Red cells.
Mr. Brian Huskins: —such as red cells, yes. The bottom line is the source for products in Canada is still generally 70% from the United States blood banks of one type or another.
Therefore, when we look at questions in Canada, there is a broader implication in terms of the downstream fractionation of products. We can talk about the question in Canada and deal with it.
I think policymakers and legislators really come into play in this by looking at the broader context. If there is change indicated through the technology and everything else, how do we get to the place where we get a better system, where more people can donate more blood, it is screened in the most effective and safest manner, and the recipient is protected? Of the product used by people like Mr. Plater, 70% is still not supplied in Canada.
The Chair: I'm sorry, I have to move on to the next questioner.
Ms. Sgro.
Ms. Judy Sgro (York West, Lib.): Thank you, Madam Chair.
We're having two meetings on this particular issue. At our next meeting, Madam Chair, who will be appearing before us?
The Chair: The clerk can answer.
While we're waiting, I'd just like to assure our panellists that this is our very first meeting on this subject. We do not have a plan of attack. We are not going to turn the system upside down overnight. We are simply asking questions about this issue, essentially on the exclusionary practices, that may lead to other questions and may get the regulators, as opposed to the operators, back in where they should be.
I thought that was a very interesting concept, Mr. Huskins.
I don't want anybody to worry that we're going to go dashing off like Don Quixote and do some embarrassing thing that sets your cause back. We are just beginning to look at this. We're very grateful for your attendance today.
On Tuesday we will be having...?
The Clerk of the Committee: Definitely we will be having representatives from the Canadian Blood Services, and almost certainly from Héma-Québec. We will be having the representatives from Health Canada who are competent to speak to this issue. We will be having two representatives from Hoffmann-La Roche Limited, one of whom is a manager with regard to the PCR technology spoken of earlier.
A couple of witnesses, recommended by Mr. Ménard, with technical expertise were unable to attend. We're trying to arrange to have people with expertise in the areas of epidemiology and immunology come before the committee as well.
Ms. Judy Sgro: Our plan is to have two meetings right now on this issue, and then possibly further meetings somewhere down the road?
The Chair: We'll make that decision later. We want to gather information from a variety of sources before we decide what it is we're going to do about it.
Ms. Judy Sgro: Okay.
I was quite informed listening to the panel on this issue. I'm not sure who I can direct this to or whether it's really a question for next week, rather than this week, but when was that questionnaire developed? When was the last time it was updated or looked at?
Mr. Douglas Elliott: The questionnaire has been changed periodically. The question we were talking about was introduced in January of 1986—you weren't here earlier, Madam Sgro, when I was talking about this. Unfortunately, what we have is this sort of snowball effect, where a question gets added and never gets taken away. You just keep adding another one and adding another one, until it becomes this ponderous thing Madam Chair was talking about, so people are annoyed and afraid of answering the questions. I say this is a really important role for the regulator and Parliament to fulfil.
It's very difficult to expect the operator to stick their neck out and remove something, or appear to remove something, even if it's perfectly justified scientifically, for fear of criticism from the public, for fear of lawsuits. However, if the regulator tells them this is the best way to both protect safety and enhance the supply, then they will be protected. I'm afraid there hasn't been that leadership from the federal government on this issue, and perhaps it's time they started looking at that.
Ms. Judy Sgro: Certainly, Mr. Elliott, given what has happened in the past when it comes to the blood supply, you would recognize that any changes at all in this area are extremely sensitive and would have to be talked about and looked at in an extremely sensitive time in our country.
As much as I know that none of you would have any interest in the blood supply's being contaminated and you have the same interest everyone else does, the question is how we improve everything for everyone and not be discriminatory in many of the questions. Some of them are certainly leading to a very discriminatory kind of practice, but from my perspective anyway, it's an issue we would have to be extremely careful with as we go forward.
I find it very informative, but I must tell you that I'm going to do exactly what I think you would want all of us to do—that is, make sure everything we do and every step we take is protecting everyone's public interest.
Mr. Ron Chaplin: I remind the committee that there is no single focus to this concern either. Yes, we are all concerned about maintaining the security of the blood system. When anyone is infected with HIV or anything else through the blood supply, that is a great tragedy. It is also a great tragedy when anyone is infected with HIV for any reason, and because of the problems we have with the questionnaire, we are concerned that it is an
[Translation]
obstruction of the safety of the public health of all Canadians.
[English]
It is the wrong information that is being circulated to Canadians about how HIV is transmitted, and in the absence of any countervailing information, any additional information from either the blood services agency or the regulator from Health Canada in those blood donor clinics, Canadians are getting faulty information, misleading information about HIV.
The Chair: Thank you.
It was the turn of Mrs. Wasylycia-Leis, but she seems to have disappeared.
Mr. Réal Ménard: She gave me her time.
The Chair: What an operator.
Mr. Charbonneau.
Mr. Yvon Charbonneau (Anjou—Rivière-des-Prairies, Liberal): Thank you, Madam Chair.
If I understood correctly, an affirmative answer to the 1976 question we have heard so much about, leads to a lifelong exclusion, without tests. Are there any other questions that lead to a lifelong exclusion if the person answers yes? Are there any other questions that have the same consequence?
[English]
Mr. Douglas Elliott: Some are very obvious and sensible, Monsieur Charbonneau. If you've tested positive, obviously you're excluded for life. But usually there are questions like “At any time since 1977 have you taken money or drugs for sex?” If you answer yes to that question, you're out for life. As I think Mr. Huskins said to me, does that include if someone buys you a drink? Is that taking a drug for sex? In that case, we get into Madam Scherrer's situation, where I think a lot of Canadians are excluded—I certainly am.
[Translation]
Mr. Yvon Charbonneau: Madam Chair, that answer raises the tone of the debate. It is not a question of discrimination against people who had a homosexual experience 20 years ago or for the last 20 years. In several respects, this questionnaire excludes people without there being the possibility of a test between the statement and the blood donation.
This leads us to take a broader view of the questionnaire. First of all, should there be a questionnaire? If so, the questionnaire should be complemented by certain tests, by meeting certain conditions before being able to give blood. Therefore the question has several angles. It is certainly not a question that is limited to the rights of gay people or their community. It is a question of knowing whether or not tests should be done when the answers seem to indicate an unwarranted risk. We should also study the question from that perspective.
Is the issue discrimination against membership in a particular group, or is it a penalty for a given act, when a person admits to having engaged in a homosexual act since 1976? There is no obvious answer to that. I heard one of the witnesses say that it was because of membership in a particular group. A person is not a member of a particular group if they had one homosexual experience in 20 years. That would be an isolated event.
I think we have to take a much more comprehensive approach. In other words, the fact that a person had homosexual relations once does not mean that it is a full-time activity. It is rather an isolated event, like a traffic violation or a theft. If a person steals something once does that mean that they are full-fledged thieves? No. Therefore, I believe that the issue of discrimination based on membership in a certain group must be balanced by many other factors, since there are other questions in the questionnaire that lead to the same problem, that is of lifelong exclusion because of an affirmative answer.
Money changing hands, as you have said, or an encounter with a stranger are also problems. It isn't an issue of belonging to a particular group, it's a question of exclusion without any test.
[English]
The Chair: Mr. Fisher.
Mr. John Fisher: One of the difficulties of the way in which the question is worded is that it mixes questions of identity and behaviour. It singles out a group of men who have sex with men, without asking equivalent questions of other groups based upon actual behaviours. That does target and isolate a particular subset of the Canadian population that is not necessarily or inherently more at risk by their behaviours than other subsets.
As an example, I imagine the couple of Jim Egan and Jack Nesbitt, who had been together in a same-sex relationship for 50 years and tragically passed away last year, would answer yes to the question “Have you had sex with a man one time since 1977?” Were they inherently more at risk than a heterosexual couple who have been in a 50-year relationship? I'd say no.
The other difficulty, which touches on the question Madam Scherrer raised about the usefulness of the questionnaire itself, is that if the questions are so subjective they lead to widely varying responses in the minds of respondents, they've ceased to fulfil their utility.
• 1235
As Bill
Clinton would tell you, sex means different things to
different people. If you ask a person “Have you had
sex?”, I think a lot of people will have their own
preconceptions about what sex means, and what kinds of
behaviour constitute sex, in responding to this
questionnaire.
Clearly, the yes-no responses don't give any information to the people administering the questionnaire on how those people subjectively view their own experiences, leading them to give particular responses.
The final point I want to make is on the question of discrimination. Yes, we want to see the questions framed in a less judgmental way, to be more objective and neutral, but I don't want any of us to leave you with the impression that our concern is just about discriminatory questions. We're concerned about accuracy. These questions do not lead to accurate results. As I identified in my opening remarks, if we can ask questions that are at least equally accurate without doing so in a judgmental way, let's do so.
I guess this is linked to this perception that there's a distinction between community interests, having non-judgmental questions, and medical interests, protecting the security of the blood supply. I understand the utility of this committee hearing separately from community groups and medical experts, and the people responsible for the administration of the programs, but I also think that this lends itself to a perception that these are inconsistent or at least separate objectives, whereas I see them as being quite harmonious.
The Chair: I think Mr. Valois is waiting to comment.
[Translation]
Mr. Pierre Valois (President, Table de concertation des gais et lesbiennes du Québec): I have only one thing to say to you, Mr. Charbonneau. We clearly agree with you that the questionnaire affects much more than simply the gay community. But I can tell you that the effects are being felt. If a gay person simply says that the questionnaire is complicated and asks when he can go and give blood, gays will say forget that right away, because they don't want our blood.
When we will have managed to change—soon I hope—these questions that are part of history and that will probably become more reasonable, I hope there will be a great deal of publicity, because the damage runs deep, within both the gay and the heterosexual communities. Everyone knows that gay blood is not wanted. Therefore, when the changes have been made, promote it extensively so that this kind of rubbish, this stain and opprobrium that has been cast over us for historical reasons, but which remains very present, will disappear entirely from the social climate.
[English]
The Chair: Thank you.
Mr. Merrifield, are you ready?
Mr. Rob Merrifield: Yes, Madam Chair.
This has been an interesting discussion. As I see it, the discussion comes down to this: You feel you're discriminated against as a group. I would suggest to you that the questionnaire is set up not to discriminate but to protect.
Your suggestion that maybe the questions have not kept up with science is probably valid. If that's your angle, there may be some justification there. So let's make sure that the science is accurate. We need some more information on that.
The Chair: We'll get some on Tuesday.
Mr. Rob Merrifield: I'm looking forward to Tuesday to see where we're at.
As was said earlier by the individual down at the end—I can't read his name—it's all discriminatory to a degree, but it's done with the best of intentions, and that is to keep our blood as safe as possible. It's not an exact science. I wish there was an exact science so that we could not discriminate on any of these but still know that the blood was safe at all times.
My question is, am I missing the mark here? Is that the way you see it?
[Translation]
Mr. Roger Leclerc: I would like to come back to “everything is discriminatory”. Yes, the discrimination is justified. We say it again, and we can never say it too often, we all want the safest possible blood system. The ideal would be a 10-second multifactorial test. With one drop of each donor's blood we would know. There is HIV, hepatitis, Creutzfeldt-Jakob Disease, it is a never-ending list. But we are not there yet.
We must distinguish between discrimination based on behaviour, whatever that may be, which makes me unsafe, and society's feeling that the members of one community, whatever it may be, all have unsafe behaviour. That is what we are saying. First of all, when you are asked if you have had sexual relations with a man since 1977, we take it for granted that all gays, all the people who have sexual relations have unsafe behaviour, which is completely false. All of the studies will tell you that there is more anal sex between heterosexuals than there is between homosexuals. All the studies say this is false. Therefore we are starting with a false premise.
• 1240
Secondly, we exclude people based on their belonging to a
group rather than on their behaviour. Of course, someone who had
sex with another boy during his teens will not identify himself as
a homosexual. I'll tell you quite frankly—and I am going to be
tough—I don't care. He is not the subject of discrimination
because he does not have that sense of belonging. Therefore, the
issue here is not whether or not discrimination is necessary. Yes,
it is, and it must be. There must be, to ensure blood safety,
discrimination based on individuals' behaviour, whatever group they
belong to, and that is all. At the present time, we eliminate
people based on the behaviour we believe they have. Forty-five
percent of gays practice anal sex. Of that number, how many have
at-risk behaviour and how many wish to give blood? That is
unacceptable discrimination; it is not the fact that discrimination
exists. Yes there should be discrimination, but it must be based on
individuals' behaviour.
[English]
Mr. Rob Merrifield: I don't tend to disagree with what you're saying, other than if what you're suggesting is that there's discrimination against the gay community. I would suggest to you that the basis of your argument is that the heterosexual is just as dangerous. That's no argument. If it's an act that is endangering the blood supply, then it doesn't matter if it's heterosexual or homosexual; we have to protect our society from that. That is what I'm saying.
What you're suggesting to me this morning is that science has not kept up with the form, but the form is not a specific science. I think it was the best of intentions...of what's happened.
I guess my question then would be, have you gone back to the operators and suggested any kinds of changes to the form, if this is a form that's evolving?
Mr. Brian Huskins: The operator will tell you that the regulator controls that form and the regulator will tell you that the operator controls that form. Therefore it's a Catch-22 with no leadership.
The Chair: Mr. Elliott.
Mr. Douglas Elliott: I had a specific experience with this, Mr. Merrifield, when there was a series of boycotts going on at campuses. What was then the Red Cross wanted to enlist our support to end the boycotts. We met with them and said, “Look, how can we make this change so the focus is on risk activity, so it's updated? Then we can present this new questionnaire. We'll go out there and support you and tell you that, yes, these questions are valid, and, yes, it's going to exclude gay men in large part. But it's a valid question and we'll try to persuade those young kids on campuses that they should give blood.”
That's not what happened at that meeting. The Red Cross told us that they couldn't change the form, and that we had a social obligation to go out there and persuade those youngsters that this form was a valid form about AIDS. We said we couldn't do that.
Don't forget, we too are concerned about infection in the blood supply. Members of the committee may not appreciate this. People who are HIV-positive are enormous consumers of blood, since anaemia is a very common side effect of the drugs, and they do not have the kinds of defences the rest of us have to infections in the blood supply. They are very concerned about the safety of the blood.
But we want rational distinctions. The American Red Cross used to separate the blood that came from black people and white people. That was the kind of approach that used to be taken. Nobody would suggest that was scientific.
We want scientific distinctions. Once we kept Irish people on an island because there was a fear of tuberculosis. Just because we did that in the 19th century doesn't mean we should still do it today. It has to keep up to date with the science to protect everybody.
The Chair: Thank you, Mr. Merrifield.
Madam Scherrer.
[Translation]
Ms. Hélène Scherrer: First of all, I think we have to take into account that sexual practices have changed tremendously over the past 25 years. My children, my adolescents who are presently 18 and 20 years old, are not experiencing their sexuality in the way that we experienced ours. I don't think the test takes that into account.
• 1245
Secondly, I still have a big question mark over behaviour
patterns, because if we continue with behaviour, the questionnaire
will read as follows: “Are you married?” I would answer “Yes, I
have been married for 25 years”. “Have you had only one partner?”
I answer “Yes”. The other question should be: “Is your husband
unfaithful?” I would answer “No”. The next would be: “Are you sure
about that?” And I would have to put down a question mark. I think
there would be no end to it.
Therefore, if we look at behaviours, it is exactly that. I'm going to say that as far as I am concerned, there is no problem. But if I am asked if I have known my partner very well for 30 years, if I am being cheated on... Am I aware of it? So that is it. Honestly, I have some serious questions concerning behaviour.
To come back to what I was saying, I wonder whether there is a questionnaire that could truly identify everything and ensure safety. My question is the following: is Canada a world leader in the area of blood safety? What is going on elsewhere, in other countries who, for example, have been lauded for their programs or who have other things? Do they use such a questionnaire or are there other safety measures that are taken?
[English]
Mr. Douglas Elliott: I think Brian is the best one to answer that.
Mr. Brian Huskins: On Tuesday you'll probably have the people who can best answer that from an expert perspective. I'm just a consumer advocate. But from all that I see, and certainly around the issue of Creutzfeldt-Jakob disease, and new-variant CJD, Canada has certainly been in a leadership role on that.
Our questionnaires do come in line with many that are...whether you look at Great Britain, Germany, or the United States. Certainly there is a significant difference from what is happening in Australia, because they have made changes in Australia. That's on an ongoing basis. The Food and Drug Administration committee that looks at this issue is swinging slowly toward revisiting the questionnaire and changing it.
So Canada, I think, is poised to be a leader on this issue, based on good science, based on the epidemiology, and based on the facts. I think it would be very easy to go into a crouch position and not be the leader, because we could blame it on the FDA or others.
Is Canada a leader? I think we are, and I think we have the things in place to go even further and to lead a lot of the world, as we did with CJD. We were the first to expand that definition. So we can be a leader in this.
Being a leader in this doesn't mean it's a bad thing, it just means you're looking at everything that isn't current, that isn't necessarily the way this system is. It's just a matter of who will lead it. Will it be the operator or will it be the regulator? At this particular point in time, it is the operator. I'm not blaming them for that—they're doing a great job in terms of putting together a conference—but Canada is poised to be very much a leader in this issue and can lead the world out of this archaic way of looking at blood collection.
[Translation]
Ms. Hélène Scherrer: Madam Chair, would it be possible to get a copy of the questionnaire for our next meeting, so that we can see what the questionnaire looks like?
[English]
The Chair: Yes, I've already asked the clerk to have one for us for our next meeting.
Ms. Hélène Scherrer: Okay. Thank you.
The Chair: I'm sorry, we probably should have told our witnesses that they were talking about a questionnaire we've never seen. You assumed we knew more about this topic than we did.
Mr. Roger Leclerc: None of you will be able to give blood.
The Chair: Yes, but I was beginning to think that to give blood you had to be in that safe place in the coffin, six feet underground.
Mr. Brian Huskins: Madam Chair, I would just say that if you are getting a copy of the questionnaire, you might request a copy of the oral questions that are also asked during that process.
The Chair: The oral questions, okay.
Mr. Brian Huskins: Because it's not just a questionnaire. There are posters that are on the wall with questions as well. So it's beyond a questionnaire.
The Chair: It sounds to me like they're trying to get people to back out the door instead of come in, with all these questions.
Mr. Ménard will be our last questioner.
[Translation]
Mr. Real Ménard: I would like to make a comment first. Presently, neither Héma-Québec nor any other agency can decide on the criteria. It must be very clear that the regulatory authorities do not let the agencies decide on the form. Héma-Québec, or any other licensee, comes under a federal regulatory authority which is the Bureau of Biologics and Radiopharmaceuticals. This is unavoidable.
That is why the potential change that you are all hoping for can only come from a change in the federal government's regulations. This is why we were all somewhat disappointed when an activist from the Quebec area decided to make a false statement, thinking that Héma-Québec could change the questionnaire on its own authority. I believe a questionnaire is necessary, that it is unavoidable. We must have a questionnaire together with tests using the latest technologies available. In my mind this is clear. And this must bear on behaviour alone.
• 1250
Now, as lawmakers, we cannot ignore the possibility that there
will be false statements made. It is true for the Department of
Revenue and it is true in many other circumstances where there are
controls in place. Therefore, the question is not to know whether
or not there should be a questionnaire. Is it to know whether or
not people always tell the truth? For my part, it is not. I don't
wish unfaithful spouses on anyone, and I hope it is not the case
for me either, but the idea is that we must have state-of-the-art
technology in order to minimize the window of opportunity when the
tests cannot detect the presence of antibodies.
I do not agree with my colleague and friend, Mr. Charbonneau. The issue for the gay community is that it is suffering from a stigma that no other group in society shares. We cannot compare questions 15 and 21. For example, when you are asked if you have given money or drugs to obtain sexual relations over the last 12 months, this may indicate mercantile behaviour. This could mean that you are paying for drugs, and that you may be paying to have sexual relations. But it does not indicate whether you are gay, whether you are a man or whether you are short. It does not say that.
There is one question which stigmatizes and which is prejudicial to the gay community and that question is the following: “Have you had sexual relations with another man, even just once, since 1977?” As lawmakers, we have to ask ourselves whether this is acceptable. I agree with Roger Leclerc when he says that giving blood is not a constitutional right. There are a lot of people—
[English]
The Chair: You're in full flight, I realize, giving your opinion, but we're supposed to be asking questions.
[Translation]
Mr. Réal Ménard: Madam Chair, give me a bit of leeway here.
[English]
The Chair: I promise you that before any decisions are made—
[Translation]
Mr. Réal Ménard: I would like to ask one question.
[English]
The Chair: —you'll get a chance to give us your views.
[Translation]
Mr. Réal Ménard: Madam Chair, I would like to ask one question.
[English]
The Chair: Right now we have witnesses.
[Translation]
Mr. Réal Ménard: Yes, indeed, you are quite right. However, you have to understand that my question is on an issue which is very important to me.
I would like to ask all the witnesses, particularly Roger Leclerc, the following question: could you tell this committee exactly, to the best of your knowledge, and given the available technology, how long this window where antibodies cannot be detected lasts? Are we talking, for example, about 22 days, 18 days or 12 days? What is this window, to the best of your knowledge? I am aware that you are not giving us a scientific perspective here, but—
Mr. Roger Leclerc: I am not a scientific expert and perhaps one of the other witnesses would be in a better position to answer your question.
We have this new fast-track test, but we don't know how efficient it is at this current time. We are now able to cut this window, but we can't eliminate it completely. Brian would probably be in a better position to give you more technical information on this issue than I am.
[English]
Mr. Brian Huskins: I can give you just a thumb guide to that. It's not a definitive answer. You'll have people here Tuesday who can give you a definitive answer.
For instance, since we have moved to NAT testing, new GAT testing, or PCR testing, or whatever you want to call it right now, for something like hepatitis C, the window period has been cut down significantly to something like 14 to 15 days from 3 to 4 months.
Similarly with HIV, when you're actually looking through PCR testing, polymerase chain reaction testing, you're cutting that window period down to a similar sort of one- to two-week period, because you're looking for the actual virus, not the antibodies. It looks for the virus in your blood rather than the bits of antibody that your body takes time to produce.
So I would defer that to people who can truly give you those, but I can tell you that with PCR testing, those window periods are significantly reduced, and the accuracy of the test is significantly increased.
[Translation]
Mr. Réal Ménard: You see, Madam Chair, I have not overstepped the mark. There are no other questions.
[English]
The Chair: You're such a good fellow.
Seeing no further questioners, I'd like to share with the guests that, in fact, for federal people involved in health, one of our problems is that most of the subjects that citizens of Canada want to speak to us about fall within the jurisdiction of the provinces. They want to talk about waiting lists, ambulances, hospital beds, and so on. We really have little to say about it, because that jurisdiction lies with the provinces.
So I want to thank you for pointing out that essentially we as federal politicians are the policy leaders and are in fact the regulators of this system. To tell you the truth, I didn't know that before you came here.
I also want to thank Mr. Ménard for bringing forward a topic that is within our jurisdiction, and about which we might be able to do something.
• 1255
I'd like to thank the witnesses for coming and
for bringing their tremendous experience, which I also
wasn't expecting. I was expecting opinions, but I
didn't realize you would have been so involved in this
whole thing about the blood supply.
We're grateful to have you, and we're grateful to have written submissions, which the clerk will circulate. We reserve the right to recall you if we move forward with this and we get to the point where Mr. Ménard is really going to give a persuasive speech—and I know you won't want to miss it—when we move into debate.
[Translation]
Mr. Réal Ménard: Please give me a bit of leeway here, Madam Chair.
[English]
The Chair: Right now, we're just gathering information, and we thank you very much for your time.
I declare this meeting adjourned.