Health Committee on May 11th, 2017

[Dr. Ivor Ralph Edwards]

I'm not familiar with the Canadian.... The only things I'm really familiar with are the U.K. and Swedish jurisdictions. They are about the same as you are. I think there's a feeling that people with some ocular disturbances and also a hearing disturbance with the loss of the external ear are more likely to be compensated in Europe now.

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

All right. If I hear you, you are of the belief that it is appropriate to compensate when you have a series of these abnormalities, and that you shouldn't have to rely on the confirmed use of thalidomide. Is that correct?

[Dr. Ivor Ralph Edwards]

That's what I feel as a human being and as a physician. As a scientist, I ask the question, “Was this caused by thalidomide?” I really would want proof that the mother had taken thalidomide at the right time.

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

Yes, but as a physician, you would agree with the criteria that Mr. Davies talked about. If you had a likelihood of probability—the baby was born at the time and in an area where it was being distributed—you would have enough to say as a physician that, yes, this is someone who should be compensated.

[Dr. Ivor Ralph Edwards]

That's what I would guess because, as I say, we've done our scientific work on the basis of a fifty-fifty probability that the mother did take the drug and then on the other criteria that we all know about.

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

All right. Thank you very much.

[The Chair, Liberal, Bill Casey]

That completes the five-minute round.

Dr. Edwards, I just wanted to point out that the reason we're homing in on thalidomide victims is that in 1991 the Government of Canada created an extraordinary assistance plan, and I believe it was because Health Canada approved the drug and some other countries did not. I think there was a feeling of responsibility specifically for thalidomide victims. That's why we're homing in on thalidomide victims.

Now we'll go to our five-minute round, starting with Dr. Carrie.

[Colin Carrie, Conservative, Oshawa, ON]

Thank you, Mr. Chair.

I want to take this opportunity to thank the witnesses for being here today. I also want to thank Gord Brown for his persistence in getting this to committee.

As well, I'm very pleased to see a lot of political goodwill, because as the chair just said, the purpose of the program was to right a historical wrong. We around the table understand that science evolves, and the government originally put forth their criteria before that WHO meeting in 2014. I'm really pleased to have Dr. Edwards here as an expert on pharmacovigilance to give us some advice. That's what I'm going to be asking questions on.

Dr. Edwards, could you give us some insight? For Canada's program, to meet eligibility, you basically had to have one in three eligibility requirements. As my colleague Don Davies said, at the end of the day, it's going to come down to a political decision, a policy decision. What advice would you give the minister if we're going to revisit the criteria?

From your experience, how do the eligibility criteria for the thalidomide survivors contribution program compare with the eligibility criteria and assessment processes of similar compensation programs for thalidomide survivors in other jurisdictions?

What advice could you give us and give the minister?

[Dr. Ivor Ralph Edwards]

To answer the second bit first, the criteria have been and still are the classic phocomelia and some others. I won't read them out, but there are half a dozen criteria that pick out the most obvious candidates who sometimes have other problems. They are pretty strict criteria, but they are dependent on a clinical view of the patient, rather than.... It seems as though your criteria are based on some evidence of exposure being accepted by some organization that I didn't quite understand—

[Colin Carrie, Conservative, Oshawa, ON]

I'm sorry for interrupting you, but maybe I can clarify with regard to our criteria. You mentioned that genetic testing is a key issue, for example, and for our criteria, the government developed the criteria before the results of the 2014 WHO meeting that you of course were part of. For example, for our witnesses here, nobody really contacted them and had an in-person interview or did a physical examination. Should we be adding these things? If the minister makes the decision to revisit this, what other things should we put into that criteria, perhaps, that are not in there now?

[Dr. Ivor Ralph Edwards]

I would go for genetic testing, but certainly physical examination. I don't see how you can reject someone without a physical examination.

The one key factor, though, is going to be what are the conditions that have been reported in some of the thalidomide victims, such as ventricular septal defect in the heart, the so-called hole in the heart. That is very common in society in general, but it does occur in these people exposed to thalidomide, so what are you going to say? If you compensated everyone who had a VSD, you'd have a huge number of people coming to you. That, I think, is the difficulty.

[Colin Carrie, Conservative, Oshawa, ON]

I agree.

How am I doing for time, Mr. Chair?

[The Chair, Liberal, Bill Casey]

You have six seconds.

[Colin Carrie, Conservative, Oshawa, ON]

Six seconds? Maybe next time.... Thank you.

[The Chair, Liberal, Bill Casey]

Mr. Ayoub.

[Ramez Ayoub, Liberal, Thérèse-De Blainville, QC]

Thank you, Mr. Chair.

Like everyone here, I thank you for your testimony, gentlemen. Thank you for joining us.

I am deeply touched by the situation you experience on a daily basis.

Allow me to establish a parallel with the Canadian justice system, which considers an accused person innocent until they are found guilty. So they are considered innocent until proven otherwise. With this in mind, the last time the committee met, I suggested that the burden of proof be reversed, so that it would rest with the government instead of with victims. So the onus would be on the government to prove the fact behind its decision to compensate someone or not.

At the very least, I prefer for someone who is not a direct victim of thalidomide to be compensated, rather than to have a situation where thalidomide victims fall through the cracks and cannot obtain financial compensation because they do not meet silly and mean criteria. Those criteria don't always take into account the situation your family and you go through every day.

I was wondering what you thought about that proposed change to the way it is decided whether compensation would be provided or not. I think that a similar change should have been made a long time ago, but when compensation is involved, a government will often consider the budget aspect. It has to establish budgets and set certain limits.

Time is running out when it comes to this issue; the facts can go back 50 or 60 years. As we were told earlier, some people may have suffered the effects of thalidomide and were never compensated, but they are no longer among us. There are fewer and fewer victims. I think that we should make a significant change to the compensation process.

I would like to know what you think about that suggestion to compensate survivors of thalidomide.

[Terry Bolton]

I'm not sure if anybody has changed the criteria yet. I would like to see the genetic testing included, and I would also insist on a physical examination, because you can't diagnose something from a piece of paper.

[Ramez Ayoub, Liberal, Thérèse-De Blainville, QC]

Have you suggested those types of criteria changes in the past, be it to Crawford & Company Canada or to the Department of Health? If so, when did you do it?

[Terry Bolton]

Well, I have suggested it to Crawford, to which they just basically said that “this is what the government gave us, this is what we've got to stick to, and we ain't changing it”.

[Ramez Ayoub, Liberal, Thérèse-De Blainville, QC]

When did you ask them?

[Terry Bolton]

It was right after I received my rejection letter.

[Ramez Ayoub, Liberal, Thérèse-De Blainville, QC]

When did you receive your rejection letter?

[Terry Bolton]

It would have been in approximately mid-June of last year, 2016.

[Ramez Ayoub, Liberal, Thérèse-De Blainville, QC]

In your particular case, why did you not apply or were slow to apply for compensation? Compensation was first provided in 1991. You talked about it, but I would like you to elaborate.

[Terry Bolton]

As I said before, in 1991, I was made aware of this thalidomide program. To be honest with you, at the time I didn't even know what thalidomide was. I went to my mother and asked her, and she said, “Terry, I told you that when you were born, you were born that way, and you were a gift from God.” I didn't argue with my mother.