House of Commons Hansard #156 of the 42nd Parliament, 1st Session. (The original version is on Parliament's site.) The word of the day was als.


Amyotrophic Lateral SclerosisPrivate Members' Business

6 p.m.


The Assistant Deputy Speaker Liberal Anthony Rota

I believe the hon. parliamentary secretary to the government House leader has five minutes remaining from a previous debate.

The hon. parliamentary secretary.

Amyotrophic Lateral SclerosisPrivate Members' Business

6 p.m.

Winnipeg North Manitoba


Kevin Lamoureux LiberalParliamentary Secretary to the Leader of the Government in the House of Commons

Mr. Speaker, this is one of those issues that is important for us to recognize.

We had a colleague for whom I believe members on all sides of this House had a true feeling of compassion. I am talking about Mauril Bélanger in the fight of his life. In a very real and tangible way, he brought to the attention of this House and many Canadians from coast to coast to coast an issue that affects literally hundreds of thousands of Canadians.

When I was making reference to the budget, I talked about the importance of health care. One of the aspects of health care that we really never get enough time to talk about is the importance of research. Research is incredibly important to many of the issues and challenges that health care and the department have to face nowadays. It requires a commitment and co-operation.

I have argued in the past, and will continue to argue, today especially, on issues such as the one we have before us, that if we want to see a national government play a role on important issues such as this, what we need to recognize is that it cannot be done alone. Many different stakeholder groups and health care professionals are involved. There are different stakeholders, including family members and affected individuals, who truly care and want us to advocate for this issue, bring it forward, and see if we can make a difference. The question then is, what can Ottawa do as a nation or as a level of government?

I would argue that Ottawa is in the best position to demonstrate national leadership. When we look at what we are debating today, we see that this in essence is what this government is being called upon to do. When we talk about these types of issues or health care issues in general, what we find is that Ottawa cannot resolve the problem itself; it requires the different stakeholders. Whether that is science or the different levels of government, and specifically provincial governments, everyone needs to get on board.

One of the greatest privileges I had while I was in the Manitoba legislature was the opportunity to be the health care critic in the province of Manitoba. At that point, I was able to get a better understanding of how health care is administered. Whether it is in Ottawa or in the provincial or territorial areas, there is a sense of commitment. This is one of those areas where I believe we will find there is all-party support. I am anticipating that we will see this motion pass.

I applaud my colleague who brought the motion forward. I believe it is a very timely motion. At the end of the day, I am very optimistic that we will get support on both sides of the House.

There are so many stories. This is the second hour of debate that we have had on the issue. In the first hour of debate, there were a lot of personal stories. I truly appreciate that in private members' business, we were provided the opportunity to listen to many of those personal stories. I suspect we will hear more of those in just a minute or two, because it is one way for not only parliamentarians but also Canadians as a whole to identify with issues such as this and examine what it is we can actually do.

Often what happens is we hear of a friend or a family member who is affected by this disease, and quite often the manner in which it causes the condition of the individual to deteriorate can be very sad and depressing.

However, we get these moments of truth with individuals like Mauril Bélanger, to whom I made reference. He was an individual who understood what was happening and fought it right to the end. He was able to accomplish so much.

Through the efforts of the sponsor of the motion and through the comments made from critics and others, whether inside or outside of the chamber, this is about education. The more educated the public is on the issue, we will see a more serious attempt by government to work with the different stakeholders to try to do what we can to fight this brutal disease.

Amyotrophic Lateral SclerosisPrivate Members' Business

6:05 p.m.


Robert Gordon Kitchen Conservative Souris—Moose Mountain, SK

Mr. Speaker, I am pleased to rise in the House to speak to the motion put forward by the member for Humber River—Black Creek regarding amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig's disease.

Motion No. 105 proposes two things. It calls on the government to reiterate its commitment to combat ALS through research and awareness. It also calls on the government to increase funding for research and create a strategy to assist in the eradication of ALS as soon as possible. Both parts of this motion are necessary steps that need to be taken and will serve to help those currently suffering with ALS as well as those who will be diagnosed in the future.

As all of us know in the House too well, ALS is an aggressive disease. We saw first hand how it quickly and drastically affected our colleague, the Hon. Mauril Bélanger, just last year. Today, approximately 3,000 Canadians live with ALS, and each year roughly 1,000 more are diagnosed. There is no cure for this, and about 1,000 Canadians die from ALS each year. This equals to two to three people every day who are dying from this incurable disease.

The average onset occurs between the ages of 40 and 60, and is more common among men than women. Currently, there is no known cause for ALS, which is exactly why this motion, and in turn more research, needs to be done. Of all those diagnosed with ALS, only 5% to 10% will have a familial or hereditary type of the disease.

There is also no established, concrete way to detect the disease early. Even once symptoms begin to appear, it can be difficult to diagnose as the symptoms tend to mimic typical signs of aging, such as lack of coordination, muscle weakness, and cramping. Once diagnosed, 80% of people with ALS have a life expectancy of two to five years. As I stated previously, this is a very aggressive disease, and more research needs to be done so it can be diagnosed and treated as soon as possible once symptoms begin to occur.

In my previous life as a chiropractor, I was fortunate not to come across any patients who ended up being diagnosed with ALS. However, while I was doing my fellowship, working and studying at Royal University Hospital in Saskatoon, I experienced a patient with ALS. As a diagnostician, this is not a condition one readily forgets.

Given that ALS is relatively uncommon and that the symptoms can easily mimic those of other less serious medical conditions, I encourage all primary health care practitioners to ensure they get the full picture with respect to a patient's history, complete orthopedic and neurologic exams, and to use all the diagnostic tools and information available to them. If there is any doubt or concern, I would encourage health care practitioners to refer their patient to the appropriate specialist, and where deemed necessary, to an ALS specialist. While there may not be a cure, it is worthwhile to do everything possible to try to extend the lifespan of that patient should he or she eventually be diagnosed with this disease.

One aspect of living with and fighting ALS that many do not tend to think about is the financial cost. It is common that those with ALS and their families will end up paying hundreds of thousands of dollars to manage this disease. These expenses come in many forms.

Most people with ALS prefer to live at home with their loved ones, while they battle their disease. This means that homes need to be retrofitted to allow for greater accessibility, as those afflicted with the disease often end up wheelchair-bound due to the muscle degeneration. Ramps may need to be installed, doorways may need to be widened, and these things come at a cost.

There is also an expense of medical equipment that is often needed when people with ALS choose to live at home. If they have issues with swallowing, they might need to purchase a suction unit to ensure the saliva does not built up and flow into their lungs. As the disease progresses, it might be necessary to purchase or rent a special bed to ensure that people ALS is as comfortable as possible. Other costs associated with ALS include medication, which can sometimes be extremely expensive.

There is also the aspect of travel costs. I live in a rural riding and in order for one of my constituents to see an ALS specialist, he or she would have to drive for hours to get there. This means paying for fuel, food, and potentially accommodation in places like Regina or Saskatoon, which are two to five hours away.

All this is to say that ALS a challenging disease to manage just on the financial side of things, and anything that can done to find a cure should be done.

There is also an emotional cost to ALS, which is impossible to quantify. The people who are diagnosed have to cope with the knowledge that their condition is incurable and that they will soon lose the level of physical independence they are accustomed to. They also feel pressure to get their affairs in order, as ALS can progress rapidly once it is diagnosed. These are just a couple of the issues that people with ALS need to confront while dealing with the disease.

Families and friends are also affected when a loved one is diagnosed with ALS. As many people with ALS wish to stay at home, family members will often take on the role of caregivers. Being a caregiver is not easy. It is physically and emotionally exhausting, and it only becomes more difficult as the disease progresses and the person with ALS begins to rely on more help more often. Caregivers sacrifice a lot when they assume that role, and I commend them for all they do in that regard.

Respite care beds cost $32.94 per day, based on income, in Saskatchewan. This service is provided to give relief to the family and other primary caregivers of a dependant person living at home. Caregivers may also need to quit their jobs or take a leave of absence to assist a loved one who has ALS. This adds to the financial burden that many families face after receiving a diagnosis, and it can be emotionally taxing as well, given that both the caregiver and the person with ALS will now need to adjust to the new reality.

There are support systems out there, however, and I encourage anyone dealing with this disease to seek those out, even if it is just talking to someone who has had, or is going through, a similar experience.

The first part of the motion calls for increased research and awareness, and this is integral to finding a cure for ALS. I am sure that all of us here recall the ice bucket challenge that went viral in 2014 and is still going today. This challenge ended up raising more than $19 million dollars for ALS research and brought more attention to the disease than had ever been paid before. Suddenly people all over the world were talking about ALS. In fact, due in part to campaigns such as this one, more has been done in the field of ALS research in the last five years than in the entire century before it. That is remarkable, and I truly hope that this momentum can continue in the quest to find a cure for the disease.

There are also many walks for ALS that happen across the country, with the goal of raising awareness and funds to be put toward research. In my home province of Saskatchewan, there is Kim's Walk, scheduled for June 3, the Saskatoon Walk on June 25, and the Regina Walk on September 23. These are a great way to not only increase awareness and raise money but also to encourage people to get outside and be active while also building relationships in the community. I sincerely hope that everyone listening today will participate in one of these walks this summer and in any other fundraising effort for ALS research and awareness. There is a list of scheduled walks on the ALS Society of Canada's website. I encourage everyone to check that out.

We need to find a cure for this disease, and we need to do it at the earliest possible opportunity. In 2011, Brain Canada was created. It is the only national non-profit organization devoted to supporting all neuroscience research. The previous Conservative government invested $100 million dollars over seven years in Brain Canada, funding that expires in 2017. The ALS Society of Canada received $10 million dollars through Brain Canada to stimulate research relevant to ALS, and I call on the Liberals to do everything in their power to maintain or increase that level of funding. Clearly, it is needed, and I trust that the government recognizes that, just as the previous government did.

ALS is currently incurable, but there is always hope. Technology has advanced quickly in the last few decades, and there have been many advances in the field of medicine because of this. I believe that with the use of technology and the continued support for ALS research and awareness, a cure will be found.

I would like to thank the member for Humber River—Black Creek for her work on this issue. I encourage all members of the House to support the motion, as I will be doing.

Amyotrophic Lateral SclerosisPrivate Members' Business

6:15 p.m.


Brigitte Sansoucy NDP Saint-Hyacinthe—Bagot, QC

Mr. Speaker, I am pleased to speak about amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig’ disease. I would also like to thank the sponsor of this motion, which I will support.

This issue is particularly important to me, because today the daily fight by ALS sufferers and their families needs a high profile, constant engagement, and unwavering political support. As we will surely recall, in 2014, the fight against ALS attracted major visibility through the ice bucket challenge. It gave real hope to those with the disease, their families, caregivers, and researchers. Many media personalities agreed to get involved, and $16 million was raised in Canada.

This vitally important issue resurfaced in fall 2015, when our colleague, the Hon. Mauril Bélanger, informed us that he had been diagnosed with ALS and that there was no cure. I became acutely aware of this disease over the few months that I witnessed what Mauril Bélanger was going through before his death. What was happening to my colleague made me realize the difficulties caused by this disease, and just how important it is to stand with ALS sufferers and their loved ones.

Anyone can get ALS. People living with this disease become paralysed gradually. They therefore require material as well as psychological support. It is our duty to make sure they have it. Although people may be physically affected, their intellectual faculties remain in tact. In 80% of cases, people with ALS die within two to five years of being diagnosed. However, I cannot simply accept that as a final prognosis when innovative research is being done and very encouraging advances are being made every day.

Let me explain. The ALS Society of Canada is very hopeful that a cure will be found by 2024, but if nothing is done to support the research efforts and if financial resources dry up, the desired medical advances will never be achieved. The fight against ALS must be a key priority. Over 3,000 Canadians have the disease, and at least three people die of it every day. At present, there is no known cure or effective treatment.

That is why we must act now. In 90% to 95% of cases, ALS strikes someone with no family history of the illness. It can happen at any age and affect any community. Researchers say that they have never been this close to finding at least a treatment that will slow down its unrelenting progression. Today, research, in particular the MinE project, is being conducted on the creation of a genetic data base for this disease. The project will map the full DNA profiles of 15,000 ALS patients and 7,500 control subjects.

People understand the importance of the fight against ALS, as indicated by the success of the ice bucket challenge around the world. Even at the local level many people participated in the challenge. I saw this show of support in my riding where many constituents took the challenge, including members of the Institut de technologie agroalimentaire in Saint-Hyacinthe, the Sisters of Saint Joseph of Saint-Hyacinthe, and even the mayor of Saint-Hyacinthe, Claude Corbeil, when I was a municipal councillor.

These community members took on the challenge to raise money for ALS, and also to raise awareness about this disease. I want to take this opportunity to thank everyone in Saint-Hyacinthe and Acton Vale who gave their time, energy, and money to this very important cause and who also have risen to the challenge.

In order to continue this record of solidarity for the third year in a row, the Centre ADN is organizing the ALS walk in Saint-Hyacinthe—Bagot with the proceeds going to the ALS Society of Canada. On June 29, 2016, more than 300 people from Saint-Hyacinthe attended the ADN challenge and raised $1,900. I thank them from the bottom of my heart, as well as the spokesperson for the event, Bertrand Godin, facilitator, analyst, and automobile journalist who contributes so much to promoting our riding.

Those who know my family and the sports enthusiasts in my family know that we are big fans of Mr. Godin's work.

This year, the Saint-Hyacinthe walk for ALS is happening on Saturday, May 6, 2017. We are once again expecting lots of people to come out for the walk, which is being organized by Denise Saint-Pierre, a long-time resident and volunteer, and the Centre ADN's walking and running club. Young and old alike are invited to walk or run two to five kilometres or more.

I am proud to announce to the House that, on May 6, I will be the honorary patron of the event. I encourage everyone in Saint-Hyacinthe and Acton Vale to walk or run in the third Saint-Hyacinthe walk for ALS to raise funds for ALS. This year's goal is $3,000. Together, we can do it.

This year, a wheelchair-accessible route will be blocked off, and volunteers will be on hand to collect donations. Everyone who comes out will be doing something fun that is also good for their health and wellness. Once again, I hope to see many of my fellow citizens at this community-building event on May 6.

Now the question is will we be able to live up to these wonderful initiatives and shows of solidarity? Will the government help develop these projects and initiatives in the fight against this disease? Will it fund research and shows of support?

On October 4, 2016, I had the honour of representing the New Democrats at the all-party ALS caucus organized by the ALS Society of Canada. Founded in 1977, this organization is the only not-for-profit active across the country funding ALS research and improving the quality of life for Canadians with this disease.

The ALS Society of Canada made the following recommendations: first, the federal government should invest $25 million over five years to maintain the momentum of support built over the past three years; second, it should invest $10 million to help each Canadian with ALS provide a DNA sample to Project MinE, as well as allow the transfer of all stored samples from deceased individuals.

Thanks to strong measures and the ALS Canada Research Program's challenge, our country could become a world leader in the fight against ALS. We already have a community of international researchers who are working on finding a cure for ALS. We can also be trailblazers in this field. We have the resources to carry out our plans. We can take action and design a comprehensive strategy to eradicate ALS.

I would like to quote Dr. David Taylor, vice-president of research at the ALS Society of Canada, who gives us hope for the future. He said:

Five years ago, the breadth of ALS research we are funding today would not have been possible simply because we didn’t know enough about the disease to be able to ask the kinds of questions that today’s researchers are investigating in their work. The fact that we now have the ability to explore ALS from different angles reflects the growing body of knowledge about the disease and the increasing likelihood of effective treatments being developed.

The motion before the House today proposes more than just recognizing the work of researchers. It also proposes putting greater emphasis on community leaders, provincial and territorial stakeholders, because they are the ones working on the front lines in the fight against this disease. They must be supported in their essential activities in assisting ALS patients and their caregivers.

Today my team even reached out to the president of the ALS Society of Canada, who told us that she is extremely hopeful that with the support of all parties, this motion will pass and new funding will be allocated to research and to the fight against ALS before 2019.

Passing this motion will not only represent a step in that direction, but it would also be a lovely tribute to the memory of the Honourable Mauril Bélanger. It would also help ensure that the current very promising research could continue. It would also make it possible for the awareness efforts to continue in close co-operation with provincial and territorial stakeholders.

Lastly, it would support the efforts of all the local stakeholders who are fighting every day to get the word out about ALS and the problems associated with it. More importantly, it would give ALS patients and their caregivers hope for a brighter future.

Amyotrophic Lateral SclerosisPrivate Members' Business

6:25 p.m.

Louis-Hébert Québec


Joël Lightbound LiberalParliamentary Secretary to the Minister of Health

Mr. Speaker, first I would like to thank the hon. member for Humber River—Black Creek for tabling Motion No. 105 on amyotrophic lateral sclerosis, or ALS. I want to thank her for her hard work to tackle this devastating neurological disease.

Members may know that, according to the Amyotrophic Lateral Sclerosis Society of Canada, ALS Canada, between 2,500 and 3,000 Canadians have amyotrophic lateral sclerosis. Unfortunately, available treatments can do no more than relieve symptoms or delay the progression of this terrible disease by a few months.

We all know that it took the life of our friend and esteemed colleague, the Hon. Mauril Bélanger, who served the people of Ottawa—Vanier and his country for over 20 years. He will be remembered for his exemplary devotion to his community.

Without a cure, patients and their families have very little reason to hope. Motion No. 105 acknowledges the tragic death of over 1,000 Canadians with ALS each year and the fact that 1,000 more Canadians are diagnosed with the disease annually.

The motion calls on Canada to take the necessary steps to fight this terrible disease.

Through this motion, the House is being asked to reiterate its desire and commitment to work with the provinces and territories to combat ALS through research and awareness.

I am here today to express that the Government of Canada is committed to addressing ALS. We understand that continued research efforts stand to improve our understanding of this disease and lead to improved treatments and cures. Importantly, research also stands to offer hope to thousands of patients and families facing ALS. That is why our government is supporting Motion No. 105.

In order to credit existing work across the federal government and recognize its leadership role, we would propose two amendments to this motion. Please allow me a moment now to walk the House through these amendments.

First, in order to recognize past and current federal investments toward research on ALS, the Government of Canada is of the opinion that we should talk about playing a leadership role in supporting ALS research and supporting national efforts to find a cure for ALS at the earliest opportunity.

Federal investment in ALS research is up in recent years. Between 2011-12 and 2015-16 through the Canadian Institutes of Health Research, the federal government invested $16 million in ALS research, $4.4 million in 2015-16 alone, a 70% increase over 2011-12. This is in addition to the investments made by Health Canada and the not-for-profit sector.

The Canada Brain Research Fund, administered by the Brain Canada Foundation, has a system of matching funds under which federal funding provided by Health Canada is matched with equivalent funding from private donors and charities involved in brain research.

Since 2014, the money raised for ALS by the ice bucket challenge has been doubled by the Canada Brain Research Fund to provide discovery grants in order to promote research into the causes and treatment of ALS.

As we can see, the Government of Canada continues to provide leadership on ALS research. By doubling contributions from private donors and charities, the federal government hopes to encourage Canadians to get behind this important cause.

Today I would like to reiterate the government’s commitment to support the country’s leading ALS researchers in order to get the best results in the interests of all Canadians.

The work of researchers such as Dr. Jean-Pierre Julien of Laval University, which is in my riding, and Dr. Janice Robertson of the University of Toronto, Canada Research Chairs both, is essential to improving available treatments and finding a cure for ALS. It is therefore essential that we continue to support their research.

As the House knows, there are many policy approaches the government uses to coordinate efforts and raise awareness. From large-scale strategies and frameworks to targeted program initiatives, the government takes care to ensure it uses an appropriate approach. It is not evident that comprehensive strategies are always needed when it comes to specific medical conditions and diseases. This is particularly true when effective programs and initiatives already exist.

In addition, there is a tendency worldwide to address rare diseases like ALS through strategies and approaches that broadly encompass all rare diseases. Canada has developed several such strategies. For example, Canada's rare disease strategy was launched by the Canadian Organization for Rare Disorders in 2015. It proposes a five-point action plan to address unnecessary delays in testing, incorrect diagnosis, and missed treatment opportunities.

One of these five goals is promoting innovative research. It recognizes Canada's open and inclusive research, strong international collaboration, and a research capacity that spans the research continuum, including basic biomedical research, clinical research, and health services and policy research. The strategy suggests leveraging these strengths in the field of rare disease research. It also promotes collaboration in all fields of rare disease research.

Through a key international program, Canada is doing just that.

Canada, represented by the Canadian Institutes of Health Research, Genome Canada, and the Fonds de recherche du Québec, is a member of ERA-NET for Research Programs on Rare Diseases, or E-Rare, which involves 25 organizations from seven countries. E-Rare coordinates research efforts in the fight against rare diseases.

As part of this research strategy, Canada is enhancing its ability to prevent, diagnose, and treat rare diseases such as ALS more effectively, and to benefit from international resources and expertise on the matter.

As the House can see, Canada already has ways to fight ALS and other devastating illnesses through its programs and initiatives. For these reasons and in light of the increased investments in research into ALS, our amendment seeks to intensify current efforts instead of developing a new strategy.

To be clear, we suggest deleting the word “eradication” from the motion, which is generally associated with infectious diseases. In the context of ALS, it would be preferable to use expressions such as “finding treatments” or “finding cures”. This would help provide some hope to the 3,000 Canadians with ALS and their loved ones.

I am pleased to see increasing federal investments in ALS research. I am pleased to see growing ALS awareness across across Canada. I am pleased that the Government of Canada will be supporting the motion, with the amendments I described.

With this support, the Government of Canada is playing a leading role in addressing ALS. We are calling on all Canadians to join us in raising awareness, supporting research, and offering hope to the thousands of Canadians affected by ALS.

I therefore move:

That the motion be amended by deleting all the words after the words “(b) call upon the government to” and substituting the following:

play a leadership role in supporting ALS research, and to support national efforts to find a cure for ALS at the earliest opportunity.”

Amyotrophic Lateral SclerosisPrivate Members' Business

6:30 p.m.


The Assistant Deputy Speaker Liberal Anthony Rota

It is my duty to inform hon. members that, pursuant to Standing Order 93(3), no amendment may be proposed to a private member's motion or the motion for second reading of a private member's bill unless the sponsor of the item indicates his or her consent.

Therefore, I ask the hon. member for Humber River—Black Creek if she consents to this amendment being moved.

Amyotrophic Lateral SclerosisPrivate Members' Business

6:35 p.m.


Judy Sgro Liberal Humber River—Black Creek, ON

Yes I do, Mr. Speaker.

Amyotrophic Lateral SclerosisPrivate Members' Business

March 23rd, 2017 / 6:35 p.m.


Eva Nassif Liberal Vimy, QC

Mr. Speaker, I am pleased to rise today to speak to Motion No. 105, which was moved by my esteemed colleague from Humber River—Black Creek in order to reaffirm and consolidate our fight against amyotrophic lateral sclerosis.

Amyotrophic lateral sclerosis, or ALS, is a fatal motor neuron disease that causes the dysfunction and then destruction of the neurons that control voluntary muscle movement. If it is a horrible disease to think about, it is a thousand times worse to live with. The causes of this disease, commonly known as Lou Gehrig’s disease, are unknown in 90% to 95% of cases, and there is no cure.

At a time when medicine and health care are evolving so rapidly, it is possible to make a difference. We have the financial, scientific, and technological resources to fund and implement research activities that will lead to revolutionary breakthroughs. Two infectious diseases have been eradicated worldwide in the past 40 years, and we now look forward to the possibility of eradicating four others.

In fact, smallpox, a common illness, has now been eradicated. It is one of the greatest achievements of medical innovation and global co-ordination ever carried out. Furthermore, on October 14, the United Nations Food and Agriculture Organization announced that rinderpest, the other viral disease of cattle and other ruminants, has been completely eradicated thanks to human efforts. The four other diseases that are being eradicated are polio, guinea-worm disease, yaws, and malaria. These diseases could conceivably disappear in our or our children's lifetimes.

This large-scale global mission is no small task. It requires time, money, and sensitivity. Above all it is necessary. We have the tools to put an end to these debilitating diseases that cause so many deaths. I was very pleased to learn that Canada has joined Project MinE, a multinational study of the DNA profiles of 22,500 people. The goal of this project is to identify the genetic commonalities of people affected by ALS. It is a step in the right direction, but much more needs to be done. Only 62.25 DNA profiles have been collected in Canada, which represents 7% of our goal. Today, I support my colleague from Humber River—Black Creek in her efforts to ask the government to reaffirm its commitment to finding a cure for ALS.

About 1,000 people die of the disease and 1,000 more are diagnosed with it every year in Canada. At least 3,000 Canadians and 200,000 people worldwide have the disease. This number may seem low compared to other infectious diseases. That is not because the disease is uncommon; it is because 80% of people with ALS die within two to five years of being diagnosed. Once the degenerative progression begins, sufferers know their life will be cut short. According to ALS Canada, the cycle is like a revolving door because people do not recover from the disease and there are no effective treatments.

We all watched our dear friend and colleague, the Hon. Mauril Bélanger, succumb with startling speed to the disease. In November, the member for Oakville North—Burlington rose in the House to bid farewell to an active member of her community, Tim Robertson, who died of ALS. This disease can strike anyone, so it deserves our attention.

As with many matters brought before the House, cost is always an issue. What does it cost taxpayers and people with ALS? I cannot answer the first question, but I can share some facts in relation to the second.

The costs involved for people with ALS and their families range from $150,000 to $250,000. Costs include care and equipment, as well as potential loss of income if patients or their family members are forced to stop working. Most people with this disease receive treatments outside of hospitals, and they count on their families and the community to meet their medical needs.

We saw how the viral success of the infamous ice bucket challenge helped raise awareness about ALS. In Canada, nearly $20 million has been invested over the past two years in research into this disease thanks to funds raised as part of that challenge. Brain Canada, with the support of Health Canada, matched all funds raised. This proves that people care about this issue, they want research to be subsidized, and they want a cure.

In Canada, funding for ALS research usually amounts to between $1.5 million and $2 million. That is not enough to discover new treatments that might put an end to this debilitating and fatal disease. Canada has always been a leader in science and technology research.

Let us take advantage of our wealth in human capital in these fields in order to make lasting progress. Imagine what leadership from the government would help accomplish for Canadians and for the global fight to find preventive and proactive solutions to ALS. Imagine alleviating the huge financial burden on our health system and our patients. Imagine the relief of all these families who can only helplessly watch their loved ones fade away.

This goal is not unattainable. It could be reached sooner than we think. Let us promise a future where our children and grandchildren will one day hear the news of a medical breakthrough to cure ALS.

I will close by quoting Dr. Charles Krieger, professor at Simon-Fraser University, chair of the Scientific Medical Advisory Council of the ALS Society of Canada and member of the ALS Society of Canada board of directors.

He said that having been focused on ALS research and care for over 25 years, he had seen the evolution of our understanding and ability to treat this disease since the beginning of the genetic era. Discoveries of the last few years, combined with recent technological advancement, make this an unprecedented time where we now can conceive of a day where ALS is a treatable disease, but reaching that point will still take many years without some funding beyond grassroots fundraising. He added that an investment by the federal government at this critical time will yield impactful results that will accelerate our ability to reach this amazing goal.

I think he is right. By strengthening our resolve, we can make ALS a thing of the past.

Amyotrophic Lateral SclerosisPrivate Members' Business

6:45 p.m.


Judy Sgro Liberal Humber River—Black Creek, ON

Mr. Speaker, let me begin by thanking so very much my colleagues in the House. After the last couple of days of political rancour that has been going on, it is so lightening to listen to us all come together on something that affected Mauril Bélanger, one of our dear members, and many others who are not being spoken about today in the House. It is a nice, peaceful feeling in this room that we can come together and show Canadians that it is not all about politics all of the time; it is about doing the right thing. I thank all of my colleagues for that.

I like to believe that Mauril is sitting in the Speaker's chair, as he so much enjoyed his opportunity to be Speaker. It was not very long ago. The whole House truly respected Mauril for what he was, for what he did, and for his 20 years of contributions in the House. We watched him struggle with ALS. He was my partner, and when he sat beside me, he struggled every day. He made it for question period for very many days. It was such a struggle for him, but he was determined not to give in to this disease. He explored opportunities, such as what else was happening in Montreal, and went to different doctors trying to find a solution or a cure. Unfortunately, the disease went through him so very quickly.

I visited Catherine and Mauril a couple of weeks before Mauril passed away. My colleague spoke earlier about the immense cost involved in ALS. I have to say that I had been to their home many times before, but I found that they had completely converted their home, with a bed, a respirator, and such. It was like a small hospital, instead of a home.

He was able to be pushed outside in a wheelchair because it was a bright, sunny day. We sat outside in his back yard, where he had very recently built a barbecue and patio area for himself and Catherine. He invited many of his colleagues there, and we had such good times. There was great wine. He very good at barbecuing and all of that.

We sat in that very same place. He was unable to answer anything that I or Catherine said to him at that time, but we had a conversation through his eyes, because that was all he had left with which he could communicate. I left him that day knowing that there was not going to be another opportunity to see him again sitting in a wheelchair in his back yard. It was difficult. The least I can do and the least we can do is to recognize ALS for what it is.

Richard Wackid was another member of the Liberal family, who was a wonderful man. He died very quickly. He was someone else who was admired by so many people. There was also William Corbett. I do not have all of the names, but a lot of them were part of Parliament, in the sense of either serving as a member of Parliament, as Mauril did, or serving us. After 18 years of being here, when I had the opportunity to present a bill or motion, I wanted to do it on behalf of Mauril and the ALS Society.

Let me thank everybody here for their kindness and support. I look forward, on May 6, to joining in the walkathons and many other events to raise money. That is what it is about: it is about money for research. Whether we are talking about ALS, autism, or so many other things, we all need to pitch in and do everything we possibly can to eradicate these terrible diseases.

Amyotrophic Lateral SclerosisPrivate Members' Business

6:50 p.m.


The Assistant Deputy Speaker Liberal Anthony Rota

It being 6:50 p.m., the time provided for debate has expired.

The question is on the amendment. Is it the pleasure of the House to adopt the amendment?

Amyotrophic Lateral SclerosisPrivate Members' Business

6:50 p.m.

Some hon. members



Amyotrophic Lateral SclerosisPrivate Members' Business

6:50 p.m.


The Assistant Deputy Speaker Liberal Anthony Rota

All those in favour of the amendment will please say yea.

Amyotrophic Lateral SclerosisPrivate Members' Business

6:50 p.m.

Some hon. members


Amyotrophic Lateral SclerosisPrivate Members' Business

6:50 p.m.


The Assistant Deputy Speaker Liberal Anthony Rota

All those opposed will please say nay.

Amyotrophic Lateral SclerosisPrivate Members' Business

6:50 p.m.

Some hon. members


Amyotrophic Lateral SclerosisPrivate Members' Business

6:50 p.m.


The Assistant Deputy Speaker Liberal Anthony Rota

In my opinion the yeas have it.

And five or more members having risen:

Pursuant to Standing Order 93 the recorded division stands deferred until Wednesday, April 5, immediately before the time provided for private members' business.

A motion to adjourn the House under Standing Order 38 deemed to have been moved.

The EnvironmentAdjournment Proceedings

6:50 p.m.


Wayne Stetski NDP Kootenay—Columbia, BC

Mr. Speaker, I will start by repeating the question that I raised in the House earlier this week:

The Calgary Olympic bid exploration committee is making plans to include Banff's Lake Louise ski area in its 2026 bid. Putting the Olympic Games in Canada's oldest national park would demand expanding the resort into protected natural areas. The environment minister has been silent on whether she would permit Olympic expansion in this UNESCO world heritage site.

Will she stand today and firmly reject any further development in Banff National Park?

The minister avoided my question in the House during question period and she is not here tonight, which is really quite worrisome.

Why did I raise the question? I raised it for three reasons. The first reason is to give the Minister of Environment, who is the decision-maker on this potential project, the opportunity to show her support for protecting national parks.

I also want to be fair to the Calgary Olympic bid exploration committee and its 2026 bid. It needs to know as soon as possible whether Lake Louise will be part of the discussion or not.

I also want to protect the ecological integrity of Banff National Park. Banff National Park is a world heritage site, similar to Wood Buffalo, and we have seen recently what happens if government is not properly protecting a world heritage site. UNESCO came and reviewed what was happening in Wood Buffalo and expressed its concern about a number of aspects of the park, including the Site C dam in British Columbia and the oil sands and their impact on water.

What would happen to Banff National Park if additional development takes place in the Lake Louise ski area to accommodate athletes, the media, and the public in order to have the Olympic Games occur in this park? This a two-week event.

During our environmental committee trip to Banff in September, when we were exploring how Canada could get to 10% protected water and 17% protected land, we went to Lake Louise and heard a presentation from the area owners about expanding the Lake Louise ski area. National parks staff at the time said that there should be no development or changes to ski areas unless they benefit ecological integrity. The number one purpose of the parks act is ecological integrity.

Here is what some of the locals said about this particular proposal:

Once a generation, this dumb idea of Winter Olympics in Banff National Park comes up

explained conservationist Harvey Locke, a resident of Banff.

It's a great idea to nip in the bud. It should not happen. It should not be considered.

Locke says the hosting of events within the park would result in a development boom at the ski hill, and there would be pressure to expand the resort's boundaries. Banff National Park is a world heritage site. To destroy part of it to support a two-week Olympic event would be ridiculous.

My question again tonight is this: will the minister do the right thing and say no now to this proposal, which has the potential to seriously harm the ecological integrity of Banff National Park?

The EnvironmentAdjournment Proceedings

6:55 p.m.

North Vancouver B.C.


Jonathan Wilkinson LiberalParliamentary Secretary to the Minister of Environment and Climate Change

Mr. Speaker, the protection and the promotion of ecological integrity is a critical thing for this government. We have made that very clear in a number of the decisions that we have made over the course of the past year, including in some of the provisions that were contained in the recent budget.

I would also say that there is no project and no imminent project with respect to the Olympics, nor any request for an assessment. The question that is being posed by the hon. member is entirely speculative at this point in time and may or may not ever become something that needs to be actually addressed.

However, if there ever was to be such a request to look at this issue and to assess it, a critical element of any such assessment, whether it is Banff or Jasper or any national park, would be a focus on ecological integrity and the importance of being able to protect the ecological integrity of the park.

The EnvironmentAdjournment Proceedings

6:55 p.m.


Wayne Stetski NDP Kootenay—Columbia, BC

Mr. Speaker, the news reported it this way:

As Calgary continues to weigh the possibility of submitting a bid to host the 2026 Winter Olympic Games, officials with the Lake Louise Ski Resort say the ski hill would be an obvious choice to host events....


The Calgary Bid Exploration Committee (CBEC) confirms Lake Louise would be considered....

Is it not really in the best interests of both the park and the committee to know right away that the government will not support this event happening in the world heritage site?

The EnvironmentAdjournment Proceedings

6:55 p.m.


Jonathan Wilkinson Liberal North Vancouver, BC

Mr. Speaker, as I said, this is entirely speculative. There may never be a request to actually look at this issue. I think that the hon. member is getting a little out in front of what may or may not ever become a concern. However, I would say to the hon. member that the issues around the protection of ecological integrity would be front and centre in any assessment that was done if, in fact, that was something that ever needed to be done.

The EnvironmentAdjournment Proceedings

6:55 p.m.


The Assistant Deputy Speaker Liberal Anthony Rota

The hon. member for Barrie—Springwater—Oro-Medonte is not present to raise the matter for which the adjournment notice has been given. Accordingly, the notice is deemed withdrawn.

The hon. member for Lévis—Lotbinière.

EthicsAdjournment Proceedings

6:55 p.m.


Jacques Gourde Conservative Lévis—Lotbinière, QC

Mr. Speaker, with respect to the legalization of marijuana, last November, the media widely reported some troubling facts suggesting that the work of the task force on cannabis legalization was leaked before it tabled its report. Coincidentally, this was a boon to the Liberal Party's CFO, the co-founder of a company that produces marijuana, who saw the value of his shares double in one week even though, as I said, the final report had not yet been released.

I do not believe it is ethical for a Liberal task force to be making liberal recommendations to legalize Liberal-friendly companies. To date, the Minister of Justice has not even had the decency to tell the House whether she will conduct an investigation to confirm that privileged information was leaked. The lack of a response indicates that there will be no investigation results.

Will the Minister of Justice don her minister's hat and assure us that a formal investigation into this discredited task force has been launched and that we will soon be apprised of all the details?

On December 8, 2016, I predicted that we had not seen the end of Liberal scandals, and here I am now, telling the House about another. This government takes the cake when it comes to failing to abide by its own ethics rules, which are set out in the document entitled, “Open and Accountable Government”.

I am thinking of the task force on cannabis legalization, as well as all of the other ethical lapses. Here are a few examples: the Prime Minister's family vacation to visit the Aga Khan, which cost Canadian taxpayers $127,000; the moving expenses for friends of cabinet, which cost taxpayers $200,000; the cocktail parties for the wealthy, where $1,500 bought access to ministers and the Prime Minister; and last but not least, the change to the criteria for the Canada 150 fund to give priority to celebrations in 87% of the Liberal ridings in Quebec.

The criteria and objectives of eligible projects set out in part G of the general application form for the Canada 150 fund were changed in the summer of 2016 without notice, meaning that all of the organizations that had submitted applications where they provided a 20-line description of their project in keeping with the established criteria before the summer of 2016 had their applications rejected. These organizations had already been working for two years on their plans to celebrate the 150th anniversary of Confederation.

Is the approach the Liberals took here ethical?

EthicsAdjournment Proceedings

7 p.m.

Scarborough Southwest Ontario


Bill Blair LiberalParliamentary Secretary to the Minister of Justice and Attorney General of Canada

Mr. Speaker, I am pleased to rise to respond to the member for Lévis—Lotbinière's inquiry.

It would appear that the member opposite is relying almost entirely on something he read in the newspaper. There is a very old saying that those who do not read the newspaper may be uninformed, but those who do read the newspaper may be misinformed. I think this is a situation where for the member opposite there was perhaps a misunderstanding, and I would like to offer him some clarification.

As we have stated on a number of occasions, our government is committed to legalizing and strictly regulating cannabis in order to restrict access to young people, to keep it out of the hands of our kids, and also to keep the profits out of the hands of criminals. To that end, our government is committed to developing policy based on the best advice of experts and on the evidence in order to achieve those very important public purpose aims.

In June 2016, we appointed a task force composed of nine eminently qualified Canadians to conduct an inquiry on our behalf, and to report back to the government with recommendations based on the best advice and the best evidence. Those nine Canadians represented the fields of public safety, public health, justice, and problematic substance use. The task force was led by the eminently qualified, and I think widely respected, Anne McLellan, a former minister of this House. The task force received over 30,000 online submissions from Canadians from coast to coast. The task force also met with experts from jurisdictions that have taken steps to legalize cannabis in their jurisdiction, such as Colorado and Washington. It sought the views of a diverse community of experts, professionals, advocates, front-line workers, law enforcement, citizens, and employers.

In response to all of the information that it gathered, on November 30, 2016, the task force submitted its report to the government. It advised at that time that its report would be translated and subsequently provided to all parliamentarians and the public once it was available in both official languages.

On December 13, 2016, the Task Force on Cannabis Legalization and Regulation provided its report to the ministers of justice, health, and public safety and emergency preparedness. At that time, the report was made available to the public, and at the same time, was made available to all members of this House through Health Canada's website. That report contains information on how to promote and protect public health and safety, particularly among young Canadians.

The government will introduce legislation, as we have promised, in the spring. It will bring about the strict regulation of access to cannabis. It will be effective in keeping it out of the hands of our kids. It will help us keep the profits out of the hands of criminals, and it will enable us to protect the health of our citizens.

With respect to the unfounded allegations opined by the members opposite, I will reiterate that the report was made available to all Canadians on December 13, 2016, not a single day sooner, and any suggestion to the contrary is based on conjecture and baseless suspicion.

As we know, capital markets in Canada are strictly regulated. The regulating authority for the Toronto Stock Exchange is the Ontario Securities Commission. The Ontario Securities Commission is an independent body responsible for looking into any evidence of market irregularities. The securities commission will continue to ensure the integrity of capital markets and stocks listed on the stock exchange, including any investigation that it may see fit to conduct.

EthicsAdjournment Proceedings

7:05 p.m.


Jacques Gourde Conservative Lévis—Lotbinière, QC

Mr. Speaker, since when it is ethical to change the criteria of a program without informing anyone or at the very least mentioning it on the government's website?

Does my colleague agree that the Liberals' lack of ethics no doubt resulted in projects in his riding receiving funding under the Canada 150 fund, to the detriment of other ridings in Quebec that should have been treated fairly?

I am hoping for an answer from my colleague.