The House resumed consideration of the motion and of the amendment.
Mr. Speaker, it has been interesting to listen to the many comments and debate on what is a very important issue that obviously touches a number of Canadians in a very real and tangible way, as we try to do what is right, and that is provide the compensation that is necessary to compensate for the tragedy that occurred during the 1960s.
The motion says:
That, in the opinion of the House: (a) full support should be offered to survivors of thalidomide; (b) the urgent need to defend the rights and dignity of those affected by thalidomide should be recognized; and (c) the government should provide support to survivors, as requested by the Thalidomide Survivors Taskforce.
On the surface, this is a motion that does need to be supported. It is encouraging to listen to the many members standing in their place and indicating support. That has come from members of all political parties, including from the .
I suspect, and we all hope, that it will in fact pass with the unanimous support of the House. I know representatives from the advocacy group, the task force, were hoping to see a strong commitment going forward, prior to meeting with the .
What we are witnessing today is just that, a commitment to recognize that what happened in the past does need to be rectified, even though there appears to have been some form of compensation package many years ago. Obviously, that compensation package has fallen short, and there is a huge need for us to provide an adequate package that would at least provide the type of care and financial compensation to improve the quality of the lives that have been directly affected.
In looking at being able to provide some comments, I did read one article in particular in The Globe and Mail from last week. I would encourage members, if they have the opportunity, to read the article. It is a very touching article. There is a photograph attached of Johanne Hébert, someone who was touched by thalidomide, and it tells of the impact it has had on her life; she is now 52 years of age.
If members get the chance to look at it, they will find it is a wonderful story. It highlights the issue in the sense of a personal story, also presenting some of the facts that have led us to where we are today.
I appreciate the fact that the New Democratic Party has used one of its opposition days as a way to build that consensus inside the House of Commons, which will give the support we believe is necessary to advance a very important issue, that being compensation.
If I might just give some of the background, thalidomide was actually synthesized in West Germany back in 1954 and was used as a sedative or anti-nausea drug for pregnant women. Health Canada licensed thalidomide for prescription in 1961, even after reports of the drug causing birth defects in 1960, and it remained legal until March 1962.
There was an indication that there were some problems. As has been pointed out, the U.S. actually never did authorize it. It is also important to recognize that there were a number of countries—I believe it was more than 50 countries—that actually did authorize the drug. It is not unique to Canada. It is a drug that was authorized here, unfortunately, and we all know what took place as a result. Even after the reports of the drug causing birth defects in 1960, it did remain available until 1962.
At the time it was unknown to doctors that the drug could pass through the barrier of the womb and harm the developing fetus. Experts estimate that thalidomide led to the death of approximately 2,000 children, and caused serious birth defects in more than 10,000 children. This does not include the potential thousands of miscarried and stillborn babies.
We cannot help but wonder about the feelings and emotions at the time. I was born in 1962, which would have been in the timeframe in which many women across Canada who felt nauseated or had morning sickness would have been inclined to take this particular drug, which was being recommended by doctors. At the time, many doctors were in fact recommending this drug. As any pregnant woman would do, in consulting with her doctor, they followed that advice.
On the one hand, a doctor prescribed a very safe medication, to the best of his or her knowledge, that would ultimately provide some relief to a pregnant mum, only to find out that the drug was not in fact safe. One can only imagine the social impact, even mentally, for pregnant mums back then once it was discovered that the medicine they had taken had ultimately led to a child having to endure excruciating pain. It is hard to imagine someone having to go through that.
As has been pointed out, an estimated 10,000 children had some form of birth defects. This does not include the potential thousands of miscarriages to which I made reference. For those who survived, the birth defects included missing or stunted limbs, deafness, blindness, disfigurement, cleft palate, and internal disabilities such as stunted growth or missing organs, cardiac defects, disease, and many other abnormalities.
It has been pointed out that Canada was one of the last countries to end the sale of this particular drug. As has been already pointed out by a number of members, there are some 95 thalidomide survivors in Canada, obviously all around the age of 50, who are living with deteriorating health and disabilities.
There have been a number of lawsuits against pharmaceutical companies, resulting in compensation plans here in Canada. In 1991, after a decade-long campaign by the War Amps of Canada, the federal government announced a $7.5 million compensation plan for survivors, with one-time payments ranging from $52,000 to $82,000. It was the understanding at that time that these Canadians would not survive long. Many had that thought.
However, today, as was pointed out, we have 95 thalidomide victims who are still surviving but having to endure serious ill health, chronic pain, and chronic disabilities, which impair their ability to care for themselves.
That is why I said earlier in some of the questions I put forward that we not only need to acknowledge the role we have to play in terms of compensation and coming up with financial compensation, but we also have to ensure that there is the practicality of providing that care. We can do that by working in co-operation with different provincial agencies that ultimately deliver a lot of the care we are referring to, specifically health care and living arrangements, which would include having specialists visit the homes of some of the clients.
By comparison, I made reference to countries such as Germany and Britain earlier, where they have already come up with some compensation packages. Members of the Liberal Party and I believe that it is a two-part compensation. There is the immediate financial compensation and the ongoing financial compensation, which ensures that their health and well-being are taken care of. In Germany and Britain, some of the cases amount to somewhere in the neighbourhood of $88,000 to $100,000 annually per person.
The motion itself requests that the government provide support to survivors based on requests from the thalidomide survivors task force, to which I have referred for the efforts it has put in. We have, no doubt, over the last number of years, had members of Parliament—some more than others—who have really tried to tune in to this particular issue and do what they can in advancing it and advocating for it. However, the real champions here, in my opinion, are the advocacy groups. They are the individuals who have been able to persevere and make sure the government does the right thing, and it has been a long time in coming.
They are the real heroes on this particular issue, and I extend my congratulations. Hopefully, that is not premature. I do believe that the goodwill we see here today will continue on into the very important meetings that are going to be taking place between the , the advocacy group, and the victims of thalidomide.
The task force actually launched an official campaign, called “Right the Wrong”, which called on the government to provide survivors with $100,000 annually per person and a $250,000 lump sum payment. I am not sure if that is the actual amount that is being advocated today. However, it is important that we have these types of advocacy groups to bring something that is tangible and that we can bring to the table, which the government can look at and appropriately budget for. I think this is a reasonable suggestion, and while the health minister has not yet met with the victims, we do understand that the meeting will take place.
There are some other important points that are worthy of mention. As I have indicated, there are the 95 survivors today who are living with this severe disability. Canada's drug approval system failed these Canadians once. They need the compensation and the government's support now and for the rest of their lives. The government has a clear responsibility to assist thalidomide survivors who suffer from severe pain and disability and are unable to take care of themselves.
Personally, I think what makes this a unique situation is the innocence of it all. I pointed this out earlier. We had a drug that was brought into Canada. We had Health Canada, which gave its approval for the drug, and then we had medical doctors recognizing that the drug had been approved by Health Canada and believing it was okay for them to prescribe the drug. That is what they did, not knowing about the consequences.
It is important to recognize that we have the science today for the clinical testing of medicines, or new drugs coming on stream and that the checks we have in place today are there in part because of this experience we had during the 1959 to 1961 time span. I would like to think that Health Canada learned a great deal on how bad things could get if it did not do its job or it did not do it right. On the whole, in comparison to around the world, Health Canada does a great job in ensuring drugs have been approved and are safe. However, there is room for improvement.
One of the ways we have demonstrated this improvement is Vanessa's law, legislation that was passed unanimously by the House. It was a private member's bill brought forth through the initiative of one member who was able to share it with the House. The House saw the value of Vanessa's law and that bill received unanimous support. The biggest benefactor of that is the public as a whole, because knowledge is gold.
In discussion with our health critic, she mentioned that Europe posted the clinical trials for new medications. We should look at this. There are different ways to look at why we are not as transparent in providing the information to the public when drugs are faulty or cause adverse reactions. Are we doing enough on the issue of public information? There are ways we can still improve on the system. As I say, Vanessa's law is a great example of how we can still make a difference.
I want to emphasize something I had mentioned at the beginning. We should try as much as possible to put a real face on this issue. Earlier today I read an article from The Globe and Mail from last week. I do not know the day it appeared on Internet, but I suspect it was printed in the newspaper. It is a wonderful story.
I want to compliment Johanne Hébert for having the courage and the wisdom to share her story, through The Globe and Mail, with all Canadians. It is because of individuals like her that we are able to build on consensus and make a difference in Ottawa. I would like to think that the reason we will pass this motion unanimously is because of the efforts of individuals like Johanne and others who have done such a wonderful job in presenting this case and showing that we have not provided justice on this issue.
Hopefully by passing this motion, and the meeting with the advocacy group, that justice is just around the corner. We know it cannot be quick enough.
Therefore, we within the Liberal Party would ask the government, particularly the , to act hastily in trying to resolve this and provide that agreement as quickly as possible.
Mr. Speaker, I would like to inform you that I will be sharing my time with my colleague, the member for .
Thank you for giving me the opportunity to speak to this motion, which was introduced by my colleague from . Before continuing, I would like to highlight the remarkable work my colleague has done in her riding and in Parliament for many years to develop our public health policy.
I am therefore very pleased today to contribute to her efforts by supporting this motion, which seeks to right an historical wrong. The motion that has been introduced in the House seeks to expand the federal government's support to victims of thalidomide, to recognize their rights and to defend their dignity, which has been too long forgotten.
I would like to review the facts and the history of these events. In 1961, the government of Canada approved the sale of thalidomide. This drug was deemed not to be dangerous, and it was prescribed to treat the nausea experienced by pregnant women. In fact, thalidomide led to a large number of miscarriages and serious congenital defects. The birth defects we are talking about are particularly disabling: deafness, blindness and missing limbs and organs.
In the 1960s, about 10,000 children affected by thalidomide were born in the world. The devastating effects of this drug on their health were quickly apparent. However, thalidomide continued to be sold in Canada until August 1962, even though it had been withdrawn from sale in September 1961 in the other countries where it had been marketed. We will never know the exact number of Canadian families who were affected by this terrible disaster, but we know that there are still about 100 survivors today.
Although the use of this drug had tragic consequences for many families, the government has never apologized for the harm caused. I would remind the House that this drug was approved for market by the federal government of the day. Therefore, it makes perfect sense for the government to acknowledge the consequences of its actions and fulfill its obligations in this regard.
We are asking, first, that the government symbolically acknowledge the mistake it made and offer an official apology to the victims and their families. While that is a modest gesture, I think it is essential to help restore their dignity. However, merely acknowledging the government’s responsibility will not erase the extent of the harm done. That can be measured only in terms of the survivor's current health status.
It is absolutely crucial that the House be informed of the victims' terrible health conditions, so it can grasp the absolute necessity of assisting them. Decades of dealing with the consequences of thalidomide have left survivors dealing with very severe and debilitating pain. Most survivors have to cope with the loss of the ability to use their limbs to care for themselves and damage to their spine and joints, which severely reduces their mobility.
Their situation means that they depend on someone else, very often family caregivers, for tasks as basic as dressing or eating. These functional limitations prevent them from participating in ordinary social activities and, in particular, from holding employment. Their health puts them in a socially vulnerable situation and leaves them financially dependent on their aging parents.
In view of their circumstances, the government initiated talks about compensating the affected families in the 1960s, but the only support provided consisted of a very small lump sum paid out in 1992, to respond to crisis situations. Their health needs greatly exceed that lump sum and even the capacity of provincial health care systems.
It is therefore absolutely essential, in the name of our humanity, for the government to provide them with assistance without delay and leaving aside all partisan labels. I am therefore very happy that the announced yesterday that she intends to support the motion. That support shows that when it comes to public health, the proposals made are sound and appropriate, and it shows the importance of listening to the families and the survivors.
Our approach, as in all areas, is responsible and carefully thought out. We work hand in hand with the public and our partner groups, and this enables us to identify social needs, assess their urgency, evaluate their impact and look for constructive solutions that will advance social justice in co-operation with the people affected and the provinces.
We can then put in place what is an essential plan for compensation.
The foreign examples show that this is possible. In the United Kingdom, the government recently established an annual subsidy for survivors’ health care. The funds are administered by a trust and come from the government and the distributor of thalidomide. I believe it is fair, based on the principle that no one should profit from the harm done to others, that the companies that may have profited from the distribution of this drug should pay to meet the needs of the victims.
In the United Kingdom, that system provides for average annual payments of approximately $88,000 to the victims, who can use the funds according to their needs, to improve their quality of life. We should draw on that example.
I am therefore asking the to work with the Thalidomide Survivors Task Force to negotiate the creation of an assistance program. The purpose of the program would be, as it was in Britain, to set up a fund for thalidomide survivors consisting of two components. First, there would be a one-time payment to survivors to help them meet their immediate, urgent needs, particularly with respect to health care, assistive devices and everyday living. Second, there would be a monthly payment for survivors based on their level of disability, to help them meet their medical needs and provide routine care.
The program should also set up an independent body to oversee the establishment of the fund and its administration. Lastly, it would have to provide for a monitoring, oversight and assessment system that will be entrusted to an independent agency.
Let us reach out to fellow Canadians who seek our help. Let us help them regain their dignity. The survivors are aging, and their families are not able to provide the care they require. We must now find a solution that will allow them to live in dignity and get the support they need.
Today we are facing up to reality, and with the support of all parties for this motion, we are about to put together a humane, fair and constructive solution for the victims and their families.
Mr. Speaker, with your permission, I would like to begin my speech with an announcement. This morning, at 4:30 a.m., my constituency assistant Stéphanie Roy gave birth to a little girl: Gabrielle.
Some hon. members:Oh, oh!
Ms. Francine Raynault: Yes, Mr. Speaker, we have been waiting for this baby for a long time. I am sure my colleagues join me in bidding Gabrielle welcome and wishing all the best to Stéphanie and Dany.
I would take this opportunity to draw a parallel with the motion before us today. While Gabrielle has had the good fortune to be born in good health, other children have not been so lucky. Some will say that is fate, but what we do sometimes affects the lives of unborn children. There are of course personal choices that are strongly recommended for women, such as abstaining from alcohol and tobacco. Beyond those individual choices, however, we have choices to make as a society. In this House, we have the privilege and the heavy responsibility of discussing, analyzing and considering very carefully all kinds of bills that will affect the health of Canadians.
In 1961, right in the middle of the “thirty glorious years”, probably carried away by the excitement of breakneck scientific development, the Government of Canada approved thalidomide for sale. The drug promised to control nausea in pregnant women. I should say that a few years later, I became pregnant with twin girls. I learned that I had twin girls when I gave birth, when they came into the world. I can assure you that I had to take medication during that time. Although thalidomide was no longer on the market, a slight fear persisted. It was a great scientific advance! Unfortunately, the promise of a trouble-free pregnancy quickly faded. Babies began to be born with deformities like missing organs, deafness and blindness.
Having a child is always a wonderful thing, and I know whereof I speak. When a child is born with deformities, however, it is sad for the entire family. Such a child is seriously compromised for life, and for the parents, there is an additional burden of hard work to bear in addition to the great sadness they will feel for the rest of their lives.
We are not here to decide whether thalidomide is good or bad. It is bad, and I think we have all known that for a long time. We are here to figure out how we can act responsibly and provide support and compensation for victims of thalidomide. It is surprising that we are still talking about it after so many years, if we consider that this medication was pulled from the shelves in the 1960s, but here we are. The federal government has a responsibility to ensure that drugs entering our country are safe. In this case, we may have failed in our duty. Perhaps additional studies should have been conducted; perhaps we should have waited a bit. Regardless, it is our duty to take responsibility as a government, and we need to provide support for thalidomide survivors.
It is hard to know how many Canadians were victims of this medication, how many miscarriages were not linked to this medication or how many victims have died from their deformities since the 1960s. It is hard to say.
What we do know, however, is that there are about 100 thalidomide survivors who are living today with severe, constant pain. Some of them have spinal column problems, which prevents them from getting around on their own. Others cannot look after their basic needs, such as eating or going to the bathroom. One hundred people may not be much compared to the population of Canada, but for every person who has been unhealthy their entire life, it is a daily struggle.
In 1991, the Conservative government offered a lump sum payment to thalidomide victims and asked them to sign an agreement stating that they would not ask for more. Unfortunately, this was sort of a way of buying peace, since the amounts offered were not nearly enough to look after the needs of these victims and their families, who are faced with a health care system that, unfortunately, is not designed to meet their needs.
We have not heard a thing since then. I do not want to lecture anyone, but there is no denying that there have been successive Conservative and Liberal governments since the 1960s, and I find it rather surprising that no one ever saw fit to resolve this situation.
That sends a rather odd message to Canadians: even if we make bad decisions, it is not a big deal because it is of no consequence.
These days, the number of drugs on the market continues to grow. Tonnes of products cross our borders and new biotechnologies are constantly being developed. Do we not want a responsible government under such circumstances?
If we choose to properly compensate the thalidomide victims, it will show how serious we are about the health of our communities. However, if we continue to do nothing, it will show that we do not care whether people suffer as a result of our bad decisions. Such negligence will also lead to questions about how we approve the products that come into our country. I therefore believe that we need to take action.
Other countries have given much more. In England, for instance, the government took on the responsibility of compensating survivors and their families. Interestingly enough, it also asked the drug manufacturer to do its part. In total, survivors receive some $88,000 a year. This money helps survivors carry out the most basic daily tasks in relative comfort, making their lives more enjoyable.
In Germany, survivors were given a one-time lump sum, as well as regular payments of up to $10,000. This country also created a fund worth 30 million euros to cover specific needs.
Here, the Thalidomide Survivors Task Force is calling on the government to negotiate the creation of a program to provide a one-time payment to cover immediate needs as well as monthly payments. The amount of those payments would be based on the level of each person's disability.
I do not believe that fair, equitable compensation for thalidomide victims is too much to ask for. As I was saying earlier, it is our responsibility as a government to protect Canadians in all circumstances.
Protection does not come only from the army and the police; it is also a question of judgement. We need to make the right decisions for Canadians. The government made a mistake and now it needs to set things right. Of course, that was 50 years ago, but we are still talking about it today.
As thalidomide survivors age, they experience a lot of pain, and their families are exhausted. Even though there are not many of them, it is up to us to help them; it is our duty.
We need to find a solution right now that will enable them to live with dignity. These survivors need to know that their suffering does not arise from their government's utter negligence, but from a sad accident of history.
If the government is to take responsibility and prove to thalidomide survivors that we can do something about this, the House must support my colleague's motion. If I understand correctly, that seems to be the case.
This will enable us to mitigate the hardships of those who are suffering and relieve the burden on their families to a certain extent. That is our duty given the social solidarity to which Canada has always aspired, and we must act accordingly.
As they say, better late than never.
Mr. Speaker, I would like to thank all members of the House for the speeches they have made throughout the day on this very important topic.
I was born in 1961, so by the grace of God go I. Growing up in the sixties and seventies, I knew people who were affected by this. In fact, I went to school with one, and I stand in that person's honour to speak today.
I say without equivocation that our government absolutely empathizes with all victims of thalidomide. Like other health-related tragedies in our country's history, and I think back to tainted blood and Hepatitis C and the thalidomide tragedy, none of this will be forgotten by our government, nor by any Canadians. Nothing can ever undo the pain and the suffering and the incredibly challenging and difficult circumstances that these people and their families have had to endure.
However, thalidomide was not just a failure of the Canadian drug protection system; it was also an international failure of tragic proportions. Countless miscarriages were caused by the drug. More than 12,000 thalidomide babies were born in 46 countries around the world during the early sixties, including more than 100 in Canada. Only 8,000 of those 12,000 children survived past their first birthday, and there are fewer and fewer survivors every year.
To think that so many children were born with severe birth defects because their mothers were given a new medication to alleviate morning sickness is something that in this day and age we have a difficult time comprehending. The number of survivors in Canada is now less 100, as I alluded to a minute ago. At this stage, the physical challenges they have faced all their lives are only getting worse. Their health, like so many of us who grow older, is deteriorating. As I said at the beginning of my remarks, I am exactly in that age bracket, born in those years, and when this topic came up this was foremost in my mind.
However, for them, even the simplest of tasks, like getting dressed or preparing a meal, things that we all take for granted, are additional daily challenges. It is incredibly difficult to continue to do these things. As their parents and their loved ones and they themselves are aging, their lives are increasingly more difficult.
In the late sixties and early seventies, thalidomide survivors and their families did take legal action against the various companies that manufactured or distributed thalidomide. Eventually they were awarded settlements, but in most countries these settlements included monthly or annual payments based on the level of disability of the individual.
In Canada, the story was quite different. There were no trial verdicts. Families settled out of court at the time. As part of their settlement, they were not to discuss the amounts of those settlements. Not surprisingly, this resulted in a very wide disparity in the compensation amounts, with varying settlements for individuals with similar levels of disability. It was a disturbing outcome, to say the least.
Manufacturers of drugs have a legal and a moral responsibility to the users of their products. In this instance, I would argue that they failed to live up to that responsibility.
Over the last few years, we have seen more and more countries that were affected by the thalidomide tragedy consider or provide compensation for victims. Let us not forget that while these countries have recently stepped up, Canada was one of the few at the forefront, in 1991.
The government at the time paid $7.5 million to thalidomide survivors who were born in Canada and whose mothers had taken the drug Kevadon or Telimol during their pregnancy. It was meant to supplement the amount provided to victims by the drug manufacturer, which at that time was thought to be enough.
Jurisdictions around the world differ widely on how they compensate thalidomide survivors. There was an $89-million class action settlement this year in Australia and New Zealand, with about 100 victims and the drug distributor. In 2009, Brazil provided victims a one-time lump sum of $100,000 in U.S. funds, whereas Italy is providing its victims with a yearly sum of 43,000 Euros.
Accordingly, in the United Kingdom, the government announced $80 million over 10 years, in December 2012, for the Thalidomide Trust, for additional financial support for England's remaining 325 survivors, many of whom are unable to work and require adaptive homes and cars in order to function.
In Germany, where the largest number of European survivors reside, individuals are provided with a lump sum linked to the severity of the disability, and a monthly allowance for life. The average amount for Germans survivors is 10,000 euros per year.
In Ireland, survivors and their families entered into a compensation agreement with the thalidomide manufacturer for a lump sum, depending on the severity of disability, and a monthly allowance for life.
The Japanese government shared the cost of its $18 million compensation plan with the manufacturer in an out-of-court settlement.
In Scandinavia annual payments, depending on the level of disability, averaged between 6,000 Euros and 20,000 Euros a year for survivors up to 2010. The average amount following 2010 increased to between 9,000 Euros and 30,000 Euros a year. Unfortunately, in Spain survivors have never received compensation from the manufacturer. Hopefully that will be redressed.
Our government may be able to learn from these examples. The said this week she was absolutely committed to having a discussion with the Thalidomide Victims Association of Canada about the situation of survivors and the proposal that they have put forward. This will be an opportunity to share and explore what has been done in other jurisdictions also facing these same challenges.
The is always looking for ways to protect Canadians from unsafe health products. Her record includes giving the government new tools to better respond to drug safety issues, such as the power to recall unsafe drugs, impose stiff financial penalties, and require mandatory adverse reaction reporting by health care facilities.
Health Canada is making more drug safety information available to Canadians than ever before so that they can make informed decisions for themselves and for their families. While these new measures do not ease the burden of victims, the victims' story helped inspire tougher rules for the testing and licensing of drugs, which has led to Canada having one of the safest and most rigorous drug approval systems in the world. The government is always looking for ways to help patients as a result, and I know that the is eager to learn more about the increasing health needs of thalidomide survivors as they approach old age and the complex health needs that can arise.
It is more than just talking and more than just listening; it is also about understanding what has happened and learning from those circumstances. At the time, drug manufacturers touted the drug as safe for use. Doctors believed the drug to be safe. Federal drug regulators classified them as safe. We now know they were anything but safe. The events surrounding the thalidomide scandal reinforced the recognition that drug safety is of paramount importance to all of Canada.
We of course have Vanessa's law right now, which is helping us in regulating our drug system and making it even safer through all the protections that are in it.
I will leave it at that, Mr. Speaker. Thank you for the opportunity to stand up and speak on behalf of thalidomide victims. It is something I grew up with and have an understanding of. In fact, several constituents have raised this concern with me, and I am honoured to address it on their behalf.