Evidence of meeting #53 for Health in the 42nd Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was program.
A recording is available from Parliament.
Executive Director, Health Programs and Strategic Initiatives, Strategic Policy Branch, Department of Health
I think I would respond similarly to how I did previously on that. I'm not in a position to speculate on what the program could be or what a different program might look like.
Conservative
Rachael Thomas Conservative Lethbridge, AB
I'm not asking you to speculate, but there are always lessons learned along the way. If there's a lessoned learned, what is it? Or is there one? Maybe it was done perfectly.
Executive Director, Health Programs and Strategic Initiatives, Strategic Policy Branch, Department of Health
Nothing is done perfectly, certainly not at my hands.
None of us had a great knowledge or expertise about thalidomide when we took on this program. It's been quite eye-opening. The only lesson learned that I have had, frankly, is how uncertain we still are, 60 years later, about a number of factors, and that we have choices in the way decisions are made to identify thalidomide victims either based on objective criteria or based on probability and supposition. There are two directions to go, and within those two directions there are various kinds of options.
Canada opted to go along the objective criteria route. Other countries have opted to go on the basis of probability or a combination of those two. In either case it's not perfect. I don't think any of us who have been managing any of the programs internationally can say with 100% certainty that every individual who has been admitted and identified is in fact a thalidomide survivor, and I don't think we can say with certainty that every single individual who has been denied internationally is not. The bottom line and the lesson learned is that we don't know, and we don't know in every single case. Sometimes we know more than in other cases. All I would say in terms of a lesson learned is that we really need to pay attention to the science and the research and the development.
Is the commitment for this program something that will continue over the lifetime of the thalidomide survivors? It will be evaluated. It will have its moments to reconsider and review whether or not there are changes needed. I just can't speak to those more specifically today.
Liberal
Sonia Sidhu Liberal Brampton South, ON
Thank you to all the presenters.
My question is for Mr. Johnson. It is very helpful for the committee to hear an international perspective.
Did the United Kingdom use any third party adjudicator, as we did in Canada?
Former Director of the United Kingdom Thalidomide Trust, As an Individual
I'm sorry, I'm not sure of your terminology.
We had a committee led by a High Court judge that included patient advocates, legal experts, and medical experts evaluating the medical report, having already passed through a process of increasing the probability of the individual's being thalidomide. By the time we would get to our committee process, we already had a high probability that the person's mother was in a place in which it was likely that thalidomide would have been available and prescribed to her and that the damage could have been caused by it.
We're then looking for the diagnostic issue, which is, as one of your colleagues said earlier, that such things as genetic testing come in to show what is not thalidomide. There is no genetic test to show that somebody is thalidomide-damaged, but genetic testing eliminates people who might otherwise look as if they are.
Liberal
Sonia Sidhu Liberal Brampton South, ON
Okay.
Have the children of thalidomide survivors ever appeared to inherit the abnormalities of their parents?
Former Director of the United Kingdom Thalidomide Trust, As an Individual
No. There were a couple of claims in the 1990s that this had happened, but what it really pointed to was the defects of the original diagnosis, whereby people with genetic phenocopy patterns that looked like thalidomide effects but were not went on to have children, basically proving that the parent's damage was not thalidomide also.
Liberal
Sonia Sidhu Liberal Brampton South, ON
My next question is to Dr. Vargesson.
Can you describe what research is necessary to better understand the impact of thalidomide on the human body? How would this support better diagnosis of thalidomide embryopathy?
Both of you can give me the answer.
Senior Lecturer, Institute of Medical Sciences, School of Medicine, Medical Sciences and Nutrition, University of Aberdeen, As an Individual
At the present time, the funding into research on thalidomide embryopathy and the way the drug acts on the embryo is pretty much at zero. There's very little interest in doing that research, because the drug is no longer, in our countries anyway, used in situations that might cause those problems.
Where the funding goes is based on drug safety and how you can make the drug safer. That's the research area in which we're going to find out how this drug acted and understand a bit more about diagnostic tools that we could probably use from it.
That's what I'm doing right now. It's what a few other labs around the world are doing. The best animal model would be primates, monkeys, but there are ethical reasons we can't use those, which is why we use chickens, fish, and mice, and ultimately clinical trials.
It's going to take some time to understand the exact mechanisms, because the funding is just not there at the moment.
Liberal
Sonia Sidhu Liberal Brampton South, ON
Okay.
My next question is to the Crawford company, Mr. Mooney.
Does the application review process involve a medical interview on any assessment of the applicant? Is any interview required or is there any medical assessment when you select an applicant?
Vice-President, Class Action Services, Crawford
Do we perform or solicit or conduct a medical review of the person, in person?
Liberal
Sonia Sidhu Liberal Brampton South, ON
Okay.
What kinds of challenges are your organization facing in reviewing the applications?
Project Manager, Thalidomide Survivor Compensation Program, Crawford
In terms of our challenges, I think it's more the challenges of the persons who are presenting their applications. As many have already mentioned, those who have not been able to meet the criteria have expressed that it's very difficult for them to find documentary proof because so much time has passed. For us, we try to help find ways to help them find that proof. It could perhaps be through discussion, so if, say, they spoke about perhaps someone who had direct knowledge we would ask them if they could go get an affidavit from that person who can provide the details of the ingestion.
I think the challenges were more from their perspective in trying to meet the criteria. For us, the challenge was trying to help the people meet the criteria.
NDP
Pierre Nantel NDP Longueuil—Saint-Hubert, QC
Thank you very much.
My first question is for Mr. Vargesson.
Mr. Johnson said earlier that certain genetic tests help determine whether the patients' symptoms are caused by something other than the thalidomide taken by their mother. However, there's no genetic test that proves the condition is caused by thalidomide.
I want to hear your comments on the matter. Do you share this view? I think so.
Senior Lecturer, Institute of Medical Sciences, School of Medicine, Medical Sciences and Nutrition, University of Aberdeen, As an Individual
Yes. There is no genetic test to say you are definitely. There are tests that could rule out other conditions that are phenocopies of thalidomide, but there's no test that says you are definitively thalidomide.
NDP
Pierre Nantel NDP Longueuil—Saint-Hubert, QC
I know, for example, that some patients came to Health Canada saying that they had tests demonstrating that it could not be anything else other than thalidomide, but there is no test that could prove it was thalidomide. If that's the case, I think we are quite close to some sort of certainty. It can't be anything else but you cannot demonstrate that it is, so we're very close. It's a question of semantics, if I'm not mistaken here.
I'll forward the question to the Health Canada people. How many cases of that nature, of that close proximity to a diagnosis, have you had to decline?
Executive Director, Health Programs and Strategic Initiatives, Strategic Policy Branch, Department of Health
I wouldn't know specifically. We don't see each case. That's Crawford's role. I am personally aware because individuals will then sometimes write to Health Canada to appeal their case and they have included letters from geneticists. I think there's one, perhaps two, where what I have seen is that the geneticists said, “In my opinion it could be, it is possible, it is likely.” I have never seen a geneticist's report that says, “Yes, it is.” I would look to the experts here perhaps to help, but to my knowledge, there are 13 or 14 conditions that present similarly to thalidomide for which there is not genetic testing.
It's not like we can rule out 99.9% of everything and that leaves us with only the possibility of thalidomide. We can rule out a number of things and that leaves us with a smaller list including thalidomide. But I'm not 100%.... Dr. Vargesson is nodding, but I'll let him speak for himself.
NDP
Pierre Nantel NDP Longueuil—Saint-Hubert, QC
Before I go back to Mr. Johnson and Mr. Vargesson, I'll ask Mr. Mooney from the company to answer precisely how many have been declined with such results coming from geneticists.
Project Manager, Thalidomide Survivor Compensation Program, Crawford
I am aware that there are people who submitted the reports, but I don't have the number off the top of my head. Sorry.
NDP
Pierre Nantel NDP Longueuil—Saint-Hubert, QC
You may want to transmit this to the committee because if we're talking about two, three, four, or five, I can't believe we would say no with such close proximity for such small amounts of money, which would change the lives of these people, but I'll let Mr. Johnson speak.
Former Director of the United Kingdom Thalidomide Trust, As an Individual
It is a very tough business dealing with applications from people who believe their disability, their damage, is caused by thalidomide, and I, unfortunately, have had to say no to almost 600 such people. But in none of those cases did I think there was any room for doubt that thalidomide was not the cause, for the various reasons I gave earlier.
I would be very surprised if there were any medical expert in North America who could say confidently, “This can only be thalidomide; we can rule out all the other possible causes”, because the causes of the majority of defects, particularly limb reduction defects, are still unknown. Some limb reduction defects may be genetic. Some may be, as we know, thalidomide. Some may be some other environmental factors as yet undiscovered, as Janet McCredie demonstrated. She found three children with thalidomide phenocopy damage who could not have been thalidomide children, and she tracked back to the probable exposure date of the mother and found three different farming chemicals, insecticides, that had been ingested by the mother that had caused damage that looked like thalidomide damage.
It would be a very unwise doctor who would say that there can't be any other possible cause.
