Madam Speaker, as members know, about 75,000 Canadians are living with MS. This disease is characterized by episodes when people are stable and at other times acute episodes that cause them to lose more of their mobility and to become sicker. The point is that it can be a very long-term disease in that the ability for some people to have frequent episodic acute phases or not is an individual variant. There does not seem to be any way of telling who will have more episodes and who will not. People's knowledge that they are living with a disease that could come or go, could come more often or could leave them very immobile is like spinning the dice and not knowing which way it will come. That must be a huge problem for MS patients in that they must live with this uncertainty about what is going on.

As a result of that, I think we all know that when people are very ill with a chronic debilitating illness that does not have a set prognosis, that could come and go, that people will try whatever they need to try to get themselves better. That is human nature. That is something that I would do, I guess. If I had a problem, I would go looking to see whatever could help me to get better or to feel better and to be able to curtail as much as I could some of those acute episodes.

However, it is really important for us to ensure that we do not give patients false hope. Having said that, I am not hinting that CCSVI is a false hope. I am not saying that at all. I am saying that we want to ensure that we do not lead people to believe that this is a slam-dunk, that this will make a difference. This is why the Liberals last spring called for clinical trials on CCSVI. The government announced those trials in June, which I must congratulate the government for, as that was a quick turnaround and a quick response.

However, now we seem to be in limbo waiting for protocols and waiting for this to move forward. My colleague from the New Democratic Party made an important point. Will it only be phase one and two? What happens then? Does it mean that we lead people to some hope and then pull it out? I hope the government will commit to all the phases of a clinical trial because that would give us a very clear understanding about whether this procedure works, how long it lasts, what the disadvantages are and what the negative aspects of this are so we can be very clear, when we decide whether it works or does not work, that all the work has been done and that we do not leave people with false hope or to feel that interventions which could, in some instances, cause serious side effects, would. This is what clinical trials are about. We do not put anybody on a drug until we do the work on them, until we find out whether that drug is safe and what the risks are, et cetera. This is just simple evidence-based protocol for any kind of drug or intervention that is to be used on a patient. It t is a good thing and we would like to see that.

While I do support some of the pieces in this motion, I must say that we called a lot of the MS patients from the groups across the country over the last few weeks and there was a mixed review on this motion. Some of the MS groups decided that they did not like it because it was status quo, that it was only repeating what is already happening. The CIHI is able to post this information. That is already happening. The government and the CIHI said that it would happen. The groups wanted to know what was new about that.

The second piece of the motion is people working together across jurisdictions to link all researchers, academics, et cetera, to help people to understand the good aspects or negative aspects of CCSVI. However, nobody can really do that with any sense of certainty until the clinical trials are finished. So there is a sense that this is just treading water on this second one.

Those are the things that concerned me. A lot of people were concerned that this motion did not offer anything really new. I have to say that just putting information out there so it is easily accessible and people can find out what they want, look at case histories and look at what is going on, I hope that information will be based on looking at international work. In other words, are the people who go to Budapest for CCSVI intervention doing better than people who went to Thailand for the treatment? That is the kind of information I would hope we would see on this information module. I agree with it. I think information is good. I am just relaying to members what a big chunk of the community told us.

Another chunk of the community says that anything is better than nothing, that they are happy to see this happen and that it may not be a lot, but that it is a start.

I still do not know what I would do about the bill. There are some good aspects to it. As I said, we have talked with technical experts from across Canada.

What I would have liked to have seen in the bill is something that would assure us that if a patient goes abroad for CCSVI treatments, when they come back here and have side effects , or have negative problems associated with that treatment, that we do not turn them away. The hospitals and clinicians in this country should not say, “Sorry, you went abroad, took this upon yourself and therefore it is your problem”. It is not reasonable or fair for us to leave Canadians in the lurch just because they were desperate to try something, anything, that would alleviate what is, in effect, a very terrible long-term disease. It would have been nice if we could have had some assurances that, under the Canada Health Act, anyone who has come back from a treatment who has side effects and needs help will get that help and will not be turned away.

We have heard stories of people who were turned away, who could not get into emergency, who were told that no one could see them because they brought the problem on themselves. That is a punitive attitude that I believe some provinces are already working on locally to ensure the colleges, et cetera will ensure that it is good medical practice to take care of a patient regardless of the reasons for their side effects and complications.

I understand the intent of the motion, with the evidence and so on, but I do not understand part (c), which talks about collaboration with two advisory groups. I am not clear who those two advisory groups are. I am not clear if they currently exist or if the mover of the motion is suggesting that there should be two advisory groups. I do not know what that really means. It would have been nice if we could have had some sort of clarification on that.

I have some concerns that the government is directing the Canadian Institute for Health Information, not to do something but exactly what it should do. I think we need to keep arm's-length scientific bodies doing arm's-length scientific things based on evidence and good information. The CIHI should decide what information should go on there based on evidence and evidence alone, not just on hopes, dreams and wishes. Therefore, I have a little concern that this may actually be too directional for the CIHI.

However, as I said before, I would have liked to have seen some other things in this motion with regard to health care for CCSVI patients across the country.

I have another question, which was asked by many of the groups that I talked to. Will this motion interfere with the work that is already being done, such as the CIHI clinical trials? I do not see that it would but that was a question that I was asked. I wonder if at the next reading of this motion the member could actually explain that a little bit, if he feels that it would interfere with the CIHI trials. I do not think it will.

Those are good questions and concerns that need to be addressed because, if what we are talking about here is informing patients, this is something on which they want to be informed. We either listen to the questions they ask us and then try to answer them or we say that we do not like the question, that it is a stupid one. It was is a real question that I was asked by many groups that I talked to.

I would like to see the trials go on expeditiously. I know we are waiting for CIHI to come up with its protocols and that takes time, but I also want to ensure that we get out of this motion that all four clinical trials will be done. The question then is: What will happen and when? If we decide that this is an evidence-based intervention that works for some people and not for others, we need to know who are the people they work for, what exactly are the incidents of those people who might get some relief from it, et cetera. We also need to know if the relief is long-term, short-term or temporary.

As we well know, with a lot of diseases that are typified by this sort of wave pattern where it is bad and then the patient gets better and then it is bad again and then they get better, sometimes if they get a treatment at the time when they are stable it may seem like the treatment caused them to be stable, which may or may not be true. Again, that is just another reason that we need to do clinical trials.

I hope the member will hear my questions that I am asking on behalf of some MS patients. I think information is good but I think that information needs to be valid, clear and evidence based. If there is anything I need to suggest, it is that.

I thank the member for bringing forward the motion.

Hedy Fry Vancouver Centre, BC – Parliament Hill Nov 24 2011