Evidence of meeting #54 for Health in the 42nd Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was criteria.
A recording is available from Parliament.
Liberal
As an Individual
It was the same thing for me. I never pursued this until I was told by a naturopath that they couldn't do anything for me. In any testing they did with me, they got the opposite results. When I mentioned to them that my mom did take a pill in her first trimester on a couple of occasions, they said that was probably my problem. I've been travelling about an hour and a half to see a naturopath, because the one expert in Sudbury that everybody goes to see can't do anything for me.
Liberal
Conservative
Colin Carrie Conservative Oshawa, ON
Thank you, Mr. Chair.
Doug, I want to ask a bit about when you were rejected. They gave you 60 days to resubmit. Did you do that? What happened? Did anyone contact you, interview you, or meet with you in person?
I am also going to ask whether you were offered a judicial review. My understanding is that this is one of the things they.... Were they supposed to offer that type of thing? Do you know?
As an Individual
They never mentioned anything about judicial reviews. After I submitted originally, they gave me 60 days. I scrambled, looking high and low for more evidence to meet the three criteria. I had nothing else but what I had given them initially. In their rejection letter, they said, “Our decision is deemed final”. There was no appeal process. There was nothing, they said, that could be done.
Conservative
Colin Carrie Conservative Oshawa, ON
I'm not sure whether you were asked this already. I know that Gord asked Terry about it, but did you get a genetic test done? Is it something you would submit to?
As an Individual
I have been involved in genetic research testing through CHEO. They have a department called CARE for RARE. It's currently wrapped up now, but I'm sure they might be willing to open it up to people who were undocumented and people who are thalidomide victims as well. I'm sure that if we contacted them, something probably could be done. Their testing, with their research, is more in depth than standard genetic testing.
Conservative
Colin Carrie Conservative Oshawa, ON
From the important testimony that you and our other witnesses have brought forth, I think everybody can see that there is definitely a lot of political goodwill around the table. I want to thank my colleagues, especially those on the government side, for allowing us to come forward with this study.
Doug, if you could give advice to the minister, what would you be asking her if you had her in front of you?
As an Individual
For me, my main question, not to be greedy or anything, is that in 1991 there were four criteria and now there are three, so if I had submitted an affidavit from my mother in 1991, I would have been accepted. In terms of today, that wasn't part of the criteria. I didn't know about any of this in 1991. It has only come to light in the last four or five years.
Conservative
Colin Carrie Conservative Oshawa, ON
I think we've gotten a good overview, because when you're looking at it with the best science.... Science always evolves. We had this meeting in 2014, and even though we can't prove negatives, by taking a look at things.... That's why we deal with null hypotheses in things like this, and with probabilities. I want to thank you for that.
In my last minute or so, I know that Ms. Harder had a question that she wanted to ask the witnesses as well.
Conservative
Rachael Thomas Conservative Lethbridge, AB
All right.
I was wondering if, for the record, each of you could give a brief description of the impact that this has had on your daily life.
Founding Member, Canada's Still Forgotten Thalidomide Survivors
Are you referring to this recently...? Or do you mean what we've had to deal with all our lives?
Founding Member, Canada's Still Forgotten Thalidomide Survivors
All our lives, we've been left out.
We've been denied organized sports, because the people who run those sorts of things were afraid we'd get hurt if we played. In terms of jobs, I'm not bragging or anything, but I have quite an education, and I have gone for jobs that I know I was more than qualified for. They would basically tell me that I seemed to be the right candidate, and then I'd never hear from them again. I know it's discrimination, but you cannot prove it unless they come right out and say it.
As an Individual
Over the years, I've been left out of sports and left out of functions, even weddings. I couldn't stand at weddings because I walk with two canes.
I have an employer who is very sympathetic. Over the last 26 years, I've missed between a year and a half and two years of work. In a lot of places, that would be frowned upon. I'm going to be missing another three or four months starting in July because I'm getting my knee replaced.
It goes on and on. It would be nice to have this settled for retirement.
Liberal
Sonia Sidhu Liberal Brampton South, ON
Thank you, Chair.
Thanks to all our witnesses.
Mr. Bolton, my question is for you. You mentioned that TVAC has a list of conditions that they align with exposure to thalidomide. Were these ever submitted to Health Canada or presented to Health Canada when the 2015 program criteria were being developed?
Founding Member, Canada's Still Forgotten Thalidomide Survivors
I'm not sure if Health Canada has been made aware of them, but these are all things that are listed in medical journals, one published in 1963, I believe, that stated a lot of the different conditions that can occur with thalidomide. However, in 1963, when they did this, that was apparently when they took this government list as well, to find out.... I was an infant, maybe a couple of weeks old, when this was done.
A lot of us were missed. In 1962, they thought they would take the drug off the shelves. Well, in small towns like the one I grew up in, I can go and get a loaf of bread that's probably been on the shelf for two years. Things don't happen that quickly in small towns. A lot of us were born after it was pulled from the shelves.
Liberal
Sonia Sidhu Liberal Brampton South, ON
Mr. Levesque, in an earlier committee meeting, we heard that applicants whose claims were denied had 60 days to resubmit their applications. Do you think that is enough time for you to resubmit your application?
As an Individual
Well, with the stringent criteria, whether it was 30 days, 60 days, or six months, there's nothing to be found for the criteria that we have. We can't jump through hoops when our stuff was destroyed in floods or fires and when there's only a 10-year retention on medical records.
Mind you, I still have all my records from when I was at Sick Kids hospital, from when I was 18 months old until I had my last surgery there when I was 23 years old. I was an exception in this case. I was treated by Dr. Hoffman, who was a world-renowned neurosurgeon. After I left his realm, I went to see Dr. Moulton, who operated on me at St. Michael's Hospital. Three years ago, I was operated on here in Ottawa, again by Dr. Moulton. There are only certain doctors who I would let touch me, because in small towns, as Terry said, we don't have the expertise, and the knowledge isn't there.
Liberal
Sonia Sidhu Liberal Brampton South, ON
Dr. Edwards, even the WHO states that approximately half of all birth defects cannot be linked to a specific cause. You mentioned the ventricular septal defect, the hole in the heart, and other things. What do you think about how these symptoms are related? Without documented proof, what are your thoughts about that?
