Health Committee on May 9th, 2017

[Dr. Neil Vargesson]

Claus Newman, one of the doctors who is working with the Thalidomide Trust, classified thalidomide embryopathy as a syndrome, a collection of conditions that are independently seen. If you see a combination of those conditions and the patient is of the right age and has had some sort of exposure past, then yes, you would want to expand your criteria to cover all bases. Isn't that right?

You get various damage. There's nervous system damage. There's eyes, ears, internal organs, genitalia, limbs, gastro-intestinal tract. Each of those tissues or systems can be affected independently of every other. If you see a combination of those conditions, you would say there's a possibility, yes, but you would need to see a clinician to get a proper diagnosis.

[The Chair, Liberal, Bill Casey]

The time is up.

[Colin Carrie, Conservative, Oshawa, ON]

Thank you for your advice.

[The Chair, Liberal, Bill Casey]

Go ahead, Mr. Kang.

[Darshan Singh Kang, Liberal, Calgary Skyview, AB]

Thanks to all the witnesses. The more questions we ask, the more questions are raised.

In 1991 when the government established an actual extraordinary assistance plan, there were only 97 living thalidomide survivors, and in 2015 when the government came out with the thalidomide survivors contribution program, it opened it up to more survivors who could have been affected by thalidomide.

When we recognized there were only 97, what was the reason behind opening it up so more survivors could come forward? Why were they overlooked, or why were they not included in the first list of those 97 survivors?

[Cindy Moriarty]

The program in 1991 goes back to a registry that was created when the federal government worked with provincial and territorial governments back in the early sixties when the thalidomide crisis broke, to identify babies born with thalidomide and put their names on a registry. That registry was safeguarded, so there was a number of names that the government had available. In 1991 when the decision was made to do this one-time extraordinary assistance plan, efforts were made to find people on the registry.

I believe in 1991 there were 109 individuals. There are 97 of those individuals who are currently living. Some have since deceased. That was back in 1991.

The current program was established in 2015, and the decision was made to use the same criteria that were used in 1991 and apply them now. In 1991 it was a one-time payment. The intention of this program is to provide financial support and medical and health support for the rest of their lives.

Those who qualified in 1991 were automatically admitted into the program. They didn't have to go through another application process. It was decided that we should give an opportunity to those who might not have been identified back at the time for various reasons. A number of individuals came forward, and of those, 25 new individuals have been accepted into the program, for a total of 122.

It's much easier to do these numbers in English than in French.

Do you want to add something to that?

[Theressa Bagnall]

I could add that in 1991 the criteria were developed through a process that involved the War Amps society as well as the newly emerged Thalidomide Victims Association of Canada. They were representing approximately 400 people who believed themselves to be thalidomide survivors. That's where those criteria came from. It was through that consultation process.

The other reason the program was opened up in 2015 to individuals was that there was no social media in 1991 to help with awareness of the extraordinary assistance plan, and perhaps people were missed, so there was an acknowledgement of that. Opening up the program in 2015 allowed the basket to be recast again to collect those people.

I am also aware of one individual, in 1991, who had received a settlement through a drug company and felt fairly comfortable. That individual voluntarily declined the settlement in 1991 because it was a fixed amount of money to be distributed among all of the identified survivors. That individual voluntarily excluded him or herself from the program, which meant that he or she would not have been eligible for the program in 2015; hence, another reason the program was expanded.

[Darshan Singh Kang, Liberal, Calgary Skyview, AB]

My concern is that it's 24 years later and they still have to meet those three eligibility requirements. How is it going to help those people who came forward 24 years later? That's what concerns me. We should probably have broadened the eligibility requirements a bit so those people could qualify for the compensation and that's where my concern is. They couldn't qualify in 1991, and why did we open it up? How many people came forward after that who were left out? That's what my concern is.

Please reply very quickly, please.

[Theressa Bagnall]

Not all of the individuals who applied in 2015 applied in 1991, so we have new individuals applying this time around.

[Darshan Singh Kang, Liberal, Calgary Skyview, AB]

My concern is that it took 24 years for the bulk of those people to know there was some kind of compensation program. There was no education or outreach to those people when they came forward before, so that's where my concern is.

Thank you.

Dr. Johnson—

[The Chair, Liberal, Bill Casey]

Sorry, your time is up.

I have a blank page here. Is it Mr. Webber or Dr. Carrie?

[Len Webber, Conservative, Calgary Confederation, AB]

I have a very quick question and then I'll pass it on to Rachael Harder.

[The Chair, Liberal, Bill Casey]

All right.

[Len Webber, Conservative, Calgary Confederation, AB]

This is directed to Martin Johnson. Mr. Johnson, you talked about cases of late ingestion of thalidomide that occurred in the U.K. How did you deal with that? It was late ingestion after the thalidomide warning was out.

[Dr. Martin Johnson]

It was dealt with before my time, but there were, I think, 12 cases of children born in 1963, so there were pharmacists, and so on, who hadn't cleared the drugs out when they were supposed to.

[Len Webber, Conservative, Calgary Confederation, AB]

Okay.

[Dr. Martin Johnson]

There were two cases of those born in 1965 that we class as “bathroom cabinet accidents”, where people had not realized that the bottle of tablets that said “to be taken as advised” was actually thalidomide. In each of those cases, I'm assured, the actual tablets were produced. Out of over 500 claims on the British system you have 14, maybe 15 cases where it was settled on that basis early on and the tangible evidence was available.

[Len Webber, Conservative, Calgary Confederation, AB]

All right.

I have a quick question. In Canada's case, how many do we have making claims who have had late ingestion of thalidomide?

[Cindy Moriarty]

I'm not sure if I have the number handy of how many, but I think the latest birthdate we have in terms of a confirmed survivor is 1964. So we have accepted people who were born after the drug was withdrawn.

[Len Webber, Conservative, Calgary Confederation, AB]

I see.

I'll pass it on to Ms. Harder.

[Rachael Thomas, Conservative, Lethbridge, AB]

Thank you.

My question is for Mr. Vargesson. Mr. Vargesson, you've talked a bit about genetics and the fact that it can actually go a long way to disprove other causes, and that looking at other offspring or siblings can also be used in order to see the impact that thalidomide may have had on a victim. Given these statements, can you conclude that extensive testing and observation can all but disprove other causes in the case of thalidomide victims, let's say, someone with multiple issues, a genetic test, and normal children, for example?

[Dr. Neil Vargesson]

I'm not sure what the question is. Are you asking if we can rule out thalidomide embryopathy or if we can rule it in?

[Rachael Thomas, Conservative, Lethbridge, AB]

I guess you can consider both angles.

[Dr. Neil Vargesson]

The genetic testing that's available right now is for only a few conditions, and these are phenocopies of thalidomide, such as how arms intergrow, and a few others. These are limb reduction deformities, and you can use those definitely to say, “Yes, this is not thalidomide.” If a patient has a family history of abnormalities, then it's probably genetic; it's not thalidomide. If they don't have that and they have a collection of problems, then, yes, you have to consider there's a possibility.

[Rachael Thomas, Conservative, Lethbridge, AB]

Thank you.

I have a question for Health Canada. Now that we've gone through the majority of cases—and obviously there are these four more that are in discussion right now—if you were to look at the criteria that exist today, would you suggest that any changes be made to these criteria in terms of being able to come to conclusions with regard to whether or not thalidomide was in fact used?