Health Committee on April 3rd, 2008

[Stephen Alexander]

There are particular ways in which HIV is transmitted, and they are all risk- or activity-oriented. It is not person-oriented. All the science in the world shows that. That science should be the basis on which we base some of our judgments.

[Susan Kadis, Liberal, Thornhill, ON]

Can you address the issue of consultation? It appears to me, as we've again heard reference to today, that because there wasn't adequate, in your opinion, consultation, we're now almost in a process of having to go back, I guess, to the original decision and rethink it. Why weren't groups such as yours, others that are affected, and stakeholders consulted? What would seem to be the reason why they wouldn't consult with you?

[The Chair, Conservative, Joy Smith]

Time is just about up. You have about 30 seconds to do the best you can, Mr. Alexander.

[Stephen Alexander]

I don't know. There were many groups that were not consulted. It could have been the process. It could have been the difficulty in navigating through systems to get to the documentation you needed to know that this was coming about. It could have been knowing that to consult would end up with these discussions and therefore slow down the process that was wanting to be done more quickly.

[The Chair, Conservative, Joy Smith]

Thank you, Mr. Alexander.

We'll go to Mrs. Davidson.

[Susan Kadis, Liberal, Thornhill, ON]

A point of order, Madam Chair. Perhaps we can discuss this after the session, but can we have another session with the health department on this? I think it's absolutely warranted.

[The Chair, Conservative, Joy Smith]

We'll discuss that later. Let's hear our witnesses first.

Go ahead, Mrs. Davidson.

[Patricia Davidson, Conservative, Sarnia—Lambton, ON]

Thanks very much to our witnesses for being here this morning. Certainly it's interesting to hear the discussion that's taking place.

We've been hearing from everybody that informed consent and the precautionary principle are things everybody believes in and that we need to have safety of the public as the utmost concern. But there are other issues that each of you have brought to us today.

Mr. McCutcheon, I wanted to ask you a question. You said, I think, that if the criteria were changed, for example, to high-risk sex from the specific, as in annex E, you could support that. I don't know if you actually said you could support it. That would be perhaps a way to go.

Who would define, then, this high-risk sex, and where would that definition be? Would that be part of the annex as well? Would it be Health Canada that defines that? I would like you to answer that question.

Then I have a question for Mr. Plater. You talked about things that needed to be done, and I think you said that some minor tinkering needs to be done with the regulations as a whole. When Mr. McCutcheon is done, could you comment on that, please?

[Laurent McCutcheon]

I am not a scientist, but I do believe Health Canada knows what type of behaviour is considered risky. AIDS awareness groups already know about risky behaviours as well. It wouldn't require any extensive research. We know how this virus is transmitted. Therefore, we must focus on transmission methods and draw up a questionnaire. That is what I would suggest. I don't have a problem with someone asking me if I have had anal intercourse recently with another man, but when we are told that because we are homosexuals, we do not have the right to donate our organs, then to my mind, this is discrimination within the meaning of the Canadian Charter of Rights and Freedoms.

[Patricia Davidson, Conservative, Sarnia—Lambton, ON]

Thank you.

[John Plater]

In terms of the tinkering, one of the issues that's been raised is with regard to moving to a risk assessment of the behaviour. One of the concerns, particularly in organ donation--and let's use liver as an example--is that you're usually getting consent from the family of the deceased.

The understanding is, from the work that was done and from talking to people who do this, that it is very difficult to get good information about risk behaviour in those circumstances. It's often late at night, following a tragic accident, and you're asking family members. Sometimes they're the partner of the person; often they're not the partner of the person. You're asking that person, “Did your loved one who just died have anal sex? Did your loved one who just died use sex toys and share blood during sex?” It's difficult to get the answer you want there. That's why you blow it up to a population level, narrowing the population as much as possible.

An example of the tinkering would be, for instance, on the tattoo guideline. The tattoo guideline asks whether you have gotten a tattoo for which equipment was shared. My view would be that's just as difficult to determine from a family member's point of view as the type of sex a person has. If the person has had a tattoo, that should be listed, and that information should be given to the recipient. That would be the end of the discussion on that one. That is the kind of tinkering that I think needs to be looked at.

There was a comment raised about the prison system. I would actually suggest you all spend some time looking at the health status of the inmates in our prisons and our jails across this country, and you'll learn that it is exceptionally dismal.

I would say the tinkering is not in the limiting amount of time; it's the fact that there's a 12-month exclusion there as opposed to the longer five-year exclusion. That's the kind of tinkering that I think is going to need to be happening.

I've been in presentations by the ministry, and my understanding is they fully view that this will be an ongoing process and it will be modified. One of the reasons they went with the approach of using the standards organization and the regulatory process is that it would allow that to happen much more quickly. Remember, it has taken an 11-year process to get here.

Eleven years ago this was called for as necessary to regulate what was just an ad hoc guideline approach across the country--I probably shouldn't say “ad hoc”--which we recognize doesn't always work. It works for the people with laudable intentions. It doesn't work for the people who are cutting corners on a day-to-day basis.

[The Chair, Conservative, Joy Smith]

Thank you very much, Mr. Plater.

Madame Gagnon.

[Christiane Gagnon, Bloc, Québec, QC]

Thank you for joining us today. It is important to us that the gay and lesbian community be well represented so that it has an opportunity to convey to us its opinion on the new regulations and standard.

I would like to come back to a point that has been debated to some degree. Mr. McCutcheon, you stated earlier that these regulations violate the Charter. When I look closely at grounds for discrimination under the Charter, I see that in fact...

In the event the regulations and the standard are not amended, or that the committee fails to make the government see the error of its ways, what recourse do you intend to take? Do you intend to take legal action of some kind? If you put the regulations to the Charter test, what do you intend to do to take this case to the next level?

[Laurent McCutcheon]

Right now, I have to tell you that personally, I have not considered a legal challenge, particularly since the Court Challenges Program has been abolished. No longer can we opt for this legal course of action. What we can do, however, is fight to have this decision changed.

On the one hand, we have the law, and on the other hand, we have common sense. I think that common sense dictates that the danger here lies in people's behaviour. The risk is associated with the behaviour. If we want to prevent infection, we must focus on behaviours.That seems quite clear to me. We must focus on behaviours and ensure that overall policies are consistent.

I think everyone, including myself, agrees that regulations are needed for safety reasons. While recipients must not be exposed to risk, they must not be left to die either. Right now, many people are dying because they did not receive an organ. People don't seem to think this is important enough. Personally, I have a great deal of empathy for people in this situation. People are dying because organs are in short supply and all the while, there are people out there who want to be donor, but are excluded. Common sense must prevail. A person on death's door might be willing to take the chance, if the odds of his being infected are one in a thousand.

[Christiane Gagnon, Bloc, Québec, QC]

Mr. Flear, you heard the answer to the question I just raised. How do you feel about possible legal action or a claim based on the Charter's prohibition on discrimination on the grounds of sexual orientation?

[Nigel Flear]

We obviously prefer to dialogue in whatever manner is the most productive. So in this case, we would have preferred to have been involved in the discussion when Health Canada was drafting the policy. We made this criticism at other times. For instance, Statistics Canada produced a census questionnaire that also was fairly unfavourable toward the gay population. We've had opportunities to dialogue in the past, and we obviously would prefer to dialogue before we came to a committee to have to discuss a policy that isn't particularly favourable.

As far as charter challenges go, typically Egale Canada will look at it on a case-by-case basis. As was mentioned, the court challenges program very much limits our ability to look at that. It may not be a charter case, but we'll certainly look at any case that involves the LGBT population that we think is unjust or discriminatory.

[Stephen Alexander]

Like our colleagues from Egale, we prefer to be present at the table and to dialogue on these issues. We also are the organizations that have the transmission guidelines. We have the empirical and scientific data about HIV that we can share. We have the lived experiences of folk that we can share. So our position would be to dialogue.

[The Chair, Conservative, Joy Smith]

You have a very short time, about 30 seconds.

[Christiane Gagnon, Bloc, Québec, QC]

Is the idea of creating a registry something new? I know that the committee may have considered it before. Are people generally in favour of this initiative? Do you have the support of some associations? Have you looked into whether the public is interested in this proposal?

[Laurent McCutcheon]

Everyone is looking for solutions. To my way of thinking, this is a practical solution and the few people I've spoken to were in favour of the idea. We now have access to technology that was not around when the tainted blood problems occurred. It would have been difficult back then to set up a national computerized registry. Today, virtually everyone has Internet access. It would be a simple matter to update the data every year. People would register voluntarily. There would be no need to have parents answer questions when someone is brought unconscious in the emergency room. I think this approach would be safer and at the same time, it would promote awareness of the need for donors.

Naturally, I am an advocate of gay rights, but I am saddened to see that people may be dying because there are no organs available, when there are people out there who want to be donors. That's just defies comprehension. While it may not resolve every single problem, a registry would increase the number of donors and help save a few lives over the course of a year and for that, it is worth the effort.

[The Chair, Conservative, Joy Smith]

Thank you, Mr. McCutcheon. I'm going to have to interrupt you.

Mr. Brown.

[Patrick Brown, Conservative, Barrie, ON]

Thank you, Ms. Smith. I appreciate all the comments by the witnesses today.

Surely this issue has been around for a long time. It has continued successfully now under three prime ministers and eight ministers of health. It is good that we continue to try to understand it better and protect the standards we have.

I heard a comment about consultation, I think by Mr. Flear. I wanted to provide some comment and see what your thoughts are on that.

The Library of Parliament provided members of this committee with some background information. One thing that struck me when you mentioned consultation was that in the Library of Parliament report it said that in December 2007, when the new regulations came into force, it seemed that some stakeholders were surprised. It also mentioned that on these new regulations there was heavy consultation. Health Canada received requests for clarification from 15 organizations, and recommendations were given from 32 organizations in December 2005, based on the pre-publication of part I of the Canada Gazette.

I would also like to add that there was a letter that members of this committee were sent by the Canadian Standards Association, which I found interesting. What they raised was that they were surprised when this was raised too, about the lack of consultation, because individuals who said that--it was their suggestion--may have missed the pretty intensive consultation and opportunities that existed for everyone to have a voice in this.

Health Canada conducted comprehensive stakeholder consultations during the standards development process, sending out over 900 notices to stakeholders, indicating that the CSA standards were available for comment.

To seek input and comment, the draft standards were sent to the president and members of the Canadian Society of Transplantation in 2002. Additionally, there were regular presentations by Health Canada officials to the society and to other transplant associations.

It was certainly interesting to see how much consultation happened and to hear that some felt there wasn't enough.

I guess my comment is that the 900 notices that were sent out and the 32 organizations that became actively involved in having a voice--how could that have been broadened? In the future, do you have any suggestions for how we can have an even more enhanced consultation that reaches beyond 900 people?

[Nigel Flear]

Obviously the consultations would be based on health organizations. Egale, for instance, isn't a health organization. We do represent a population that gets discriminated against and is referenced in the risk criteria. We do dialogue also with Canadian Blood Services on the blood issue.

On the fact that we weren't included in that, a number of the people today have said they found out through the media that they weren't included in the 900, and that is obviously an oversight.

We hope in the future, if we continue to discuss this, that we would be informed if there any more mailings.

[Patrick Brown, Conservative, Barrie, ON]

I'm reading that this was in December 2005; I guess that commenced during the tenure of the previous government. In the list that was compiled of 900 organizations that were consulted, was there any attempt by your organization to suggest that they should also be included on that list that was developed by Health Canada?

[Nigel Flear]

We weren't aware of it specifically. We are a very small organization. We have a very small staff. In our ability to research all the options out there, we do depend on feedback from our members and from the media to learn about things.