Health Committee on May 11th, 2017

[Terry Bolton]

I wouldn't want to speculate, but from what I've heard, and judging by the way I grew up and tried to basically hide this, I believe that there are a lot more than 400 of us out there. As to whether they're still living or not, that's the other issue.

For this Wolff-Parkinson-White syndrome that I mentioned earlier, there was a 40% mortality rate at birth for thalidomide babies. They now believe that what was causing it was this Wolff-Parkinson-White syndrome. Like I said, it only occurs in 2% of the population. It states right on the TVAC site and in other medical journals I've read that it's more so in people exposed to thalidomide.

[Don Davies, NDP, Vancouver Kingsway, BC]

I see.

Our information prepared by our analysts suggests that 167 individuals applied to the contribution program, to Crawford, and were informed by Crawford that they did not meet the program's eligibility criteria.

Mr. Levesque, you seemed to suggest through the file numbers that you think there are more people than that who have been rejected by Crawford.

[Douglas Levesque]

Yes, I believe there are more people, because I've heard of people with file numbers in the 400s and some with their file numbers in the 300s. Mine was file number 138, and I filed in the middle of May. Also, with there being a distribution of over six million thalidomide pills in Canada at that time, you would think that the numbers should be a lot higher than they actually are.

[Don Davies, NDP, Vancouver Kingsway, BC]

Do either of you know if there's any kind of relatively accurate number? Or is it your view that there are thalidomide victims out there who have never applied because they're just not aware?

[Terry Bolton]

They're afraid to come forward.

[Don Davies, NDP, Vancouver Kingsway, BC]

They're afraid to come forward. Okay.

Mr. Bolton, my other question is, did you or Mr. Levesque apply in 1991 when the extraordinary assistance plan was established?

[Terry Bolton]

I personally did not because, as I've stated before, at that time, I was still under the impression that this “just happened”.

[Douglas Levesque]

My mother was told when I was born that I was gifted. It was just their way of pushing it under the carpet type of thing....

[Don Davies, NDP, Vancouver Kingsway, BC]

Okay. Thank you.

Dr. Edwards, like in most things scientific, it sounds to me like one can never be 100% sure that there's a causal connection between taking thalidomide and the subsequent birth consequences. Am I correct in that?

[Dr. Ivor Ralph Edwards]

You're absolutely right, and this is a particularly difficult thing because of the rarity of the condition and the fact that it happened so long ago when there was very little understood about any of these things.

I've often thought that it's sad that the scheme was ever introduced, in the sense that it's picking out one cause of serious birth defects when of course anyone who has a birth defect needs special assistance and they don't get it.

[Don Davies, NDP, Vancouver Kingsway, BC]

Right. Well, I very much agree with my colleague Mr. Oliver in that I think we're coming down to a policy decision where my view as well is that it would be far wiser to err on the side of providing compensation to people who clearly have consequences, birth defects that have occurred. Regardless of the origin, I'd rather see them compensated than prohibited from getting compensation, simply because we can't be certain, and in any event, it sounds like we can't be.

Dr. Edwards, even if we knew that a mother took thalidomide in 1963, and even if that child was born with the cluster of symptoms, scientifically we still can't be 100% sure that there was a cause-effect even in that case, can we?

[Dr. Ivor Ralph Edwards]

Certainty is very elusive in medicine in general. The issue really is a rather rare one, in the sense that there are only a few weeks in those first three months of pregnancy when if someone took thalidomide there's a good chance that they would get the problem.

Also, one thing we don't know is how many people took thalidomide during pregnancy and never got a problem. Those are the scientific issues, so—

[Don Davies, NDP, Vancouver Kingsway, BC]

I want to ask your opinion, Doctor, but I keep interrupting you. I'm sorry, but there's a delay here.

[Dr. Ivor Ralph Edwards]

No problem. Go ahead.

[Don Davies, NDP, Vancouver Kingsway, BC]

It seems to me that the criteria established by the government are extraordinarily narrow. It essentially comes down to how one must have documentary proof that the mother took thalidomide, and it excludes what I think I'm going to refer to as probability factors. I'm going to ask you about those probability factors.

If we knew a child was born with the cluster of defects that are associated with thalidomide syndrome, if we knew the mother was pregnant at a certain time period when we knew thalidomide was being prescribed, and if we knew the mother was in an area where we knew thalidomide was being distributed, would you suggest that those probability factors would be a better test than simply relying on a piece of paper that proves thalidomide was dispensed at that time?

[Dr. Ivor Ralph Edwards]

Yes. Of course, you should be able to view the work that was done in our meeting and after the meeting in relation to this, but the direct answer to your question is that we would be roughly 95% sure, given everything you've just said, that the person was damaged by thalidomide.

[Don Davies, NDP, Vancouver Kingsway, BC]

My time is up. Thank you.

[The Chair, Liberal, Bill Casey]

Dr. Eyolfson.

[Doug Eyolfson, Liberal, Charleswood—St. James—Assiniboia—Headingley, MB]

Thank you, Chair.

Thanks to all of you for coming today.

Dr. Edwards, before this, we were talking about genetic testing. We were speaking with another witness who has found that it is unlikely to find actual genotypical abnormalities when the embryopathy is due to thalidomide.

You've just said that if you had a given syndrome of abnormalities and all the criteria that Mr. Davies talked about, you would have probably a 95% probability that it was thalidomide. If you had someone in this group, and your genetic testing then showed no abnormalities, would that even further increase your likelihood that this is thalidomide and not a genetic cause?

[Dr. Ivor Ralph Edwards]

Yes, of course. The thing is, there are a number of genetic syndromes that we get to find out more and more about, where the syndrome is really very close to thalidomide, with the limb reduction that's so typical of thalidomide, but there are differences, and certainly a genetic cause has been found in several of them.

[Doug Eyolfson, Liberal, Charleswood—St. James—Assiniboia—Headingley, MB]

Are you saying you know that there are these non-thalidomide causes—these genetic diseases—and it is straightforward to find a genetic cause for those syndromes?

[Dr. Ivor Ralph Edwards]

Yes. They're known, and the genetic testing is relatively straightforward and gives a fairly clear result.

[Doug Eyolfson, Liberal, Charleswood—St. James—Assiniboia—Headingley, MB]

Okay. Particularly in these cases where we cannot find medical records—because, as we've said, it's so long ago, back in the days of paper records and with fires and floods happening—would you advocate for a combination of physical examination and genetic testing to further increase your probability that this is thalidomide?

[Dr. Ivor Ralph Edwards]

Well, my difficulty is that I really have trouble...and I think this is what we all feel: if someone has severe limb reduction deformities—no arms, no legs—and it's due to a genetic cause, what do we do? Do they not get compensation?

I think what we're doing is really trying to find out whether thalidomide caused this rather than thinking about their disabilities. That's a political and social problem, not a scientific one. I've tried to give you a scientific causal view about it. We would, for example, rule out your two witnesses today. I have every sympathy for them, but they would not pass the test, because they don't have more than a fifty-fifty chance of being able to prove their exposure, and their disabilities, I think, could be much more likely to be due to things other than thalidomide exposure.

[Doug Eyolfson, Liberal, Charleswood—St. James—Assiniboia—Headingley, MB]

Absolutely.... How do the criteria we have in Canada right now compare with those of other jurisdictions, such as European jurisdictions, in terms of their programs?