Purple Day Act

An Act respecting a day to increase public awareness about epilepsy

This bill was last introduced in the 41st Parliament, 1st Session, which ended in September 2013.

Sponsor

Geoff Regan  Liberal

Introduced as a private member’s bill.

Status

This bill has received Royal Assent and is now law.

Summary

This is from the published bill. The Library of Parliament often publishes better independent summaries.

This enactment designates the 26th day of March in each and every year as “Purple Day”.

Elsewhere

All sorts of information on this bill is available at LEGISinfo, provided by the Library of Parliament. You can also read the full text of the bill.

Purple Day Act
Private Members' Business

March 9th, 2012 / 1:20 p.m.
See context

Liberal

Geoff Regan Halifax West, NS

moved that the bill be read the third time and passed.

Mr. Speaker, how about that indeed. It does not happen around here every day to have unanimous agreement on something like this and to have it move so quickly. I must manage to speak today without bringing tears to my eyes.

I thank members for their ongoing support of the bill. I look forward to marking Purple Day on March 26, even though the bill will not likely be law by then. However, I am hopeful that today we will see it pass the House and go off to the Senate. I hope it goes there very quickly. However, who knows how quickly this act to increase public awareness of epilepsy will in fact move. We will wait and see.

As I said at the health committee recently when the bill was heard there, I was delighted, surprised and even shocked how quickly, after passing second reading here, the health committee decided to hear the bill and consider it. I really appreciate the amendments that were brought forward at that committee to correct some issues with the French language side of the bill.

I am very pleased that amendments were proposed by the hon. members who suggested that some terms should be changed in the French version of the bill; for example, “maladies” should be changed to “conditions” and “pourpre” should be changed to “lavande”. That is the French word used in reference to epilepsy by the Canadian association for this disorder.

I was also very pleased to be in committee with witnesses who know much more about this subject than I do. There was Aurore Therrien, executive director of Épilepsie Montréal Métropolitain, and members of the Canadian Epilepsy Alliance.

Mrs. Iris Elliott of the Epilepsy Association of Nova Scotia was there as was Ms. Sarah Ward, a medical student who has quite bit of knowledge and interest in this area and who has done a lot of volunteer work. I appreciated all of them being there.

I am very grateful for the support that all members of House have shown for Bill C-278, the Purple Day bill.

I was also moved by the amazing and touching stories that my colleagues brought forth during second reading debate. I believe we have already had tremendous success in making Canadians aware of epilepsy and how it impacts the lives of thousands of Canadians through this process. It is a great example of how members from all parties can come together. People do not see that very often. They do not realize that it does happen more than they know. Members actually can, when question periods are over, often get along, get things done and make things move. Even in committee, we often have a great deal of co-operation. It is too bad more people do not see that we do come together and put partisan interests aside, as we are in this case, and push for a bill that has an impact on a policeman in Ottawa, a dad in Edmonton or a little girl in my riding of Halifax West.

I think many members now know that in 2008, 9-year-old Cassidy Megan founded Purple Day for epilepsy and started a global trend. In fact, when she had her first epilepsy seizure at the age of 7, she was a bit embarrassed and concerned about the fact that other people around her did not know anything about epilepsy and why she was having this seizure or why she had it. Her classmates obviously would not know what to think of that. Therefore, when she was 9, she talked to her teacher about the idea of having a day for that at the school. It just so happened that the principal picked March 26, and that is the day that has now stuck and is the day that continues to be celebrated as Purple Day.

I hope Cassidy is listening today. She would be pleased, as I am sure we all are, that Canada has been a leader in epilepsy awareness. I am pleased to hear, and I am sure members will all be pleased to hear, that other legislatures, such as the state of New Hampshire and many others around the globe, are following this with Purple Days of their own. I understand that Purple Day is now celebrated in more than 60 countries. How about that? I am sure we will hear more about that as that number continues to grow.

This is an opportunity to remind members and their staff who are often back in their offices around the Hill and are watching or listening to the proceedings that Purple Day this year will be on Monday, March 26, which is the Monday after the break week. I would suggest, just as a thought, that perhaps members' staff should consider putting a note on their calendars for two weeks from today, that would be the Friday of the break week, to remind their members to bring something, a tie, a blouse, whatever, something purple to wear on Monday, March 26. I am hopeful that little reminder will be heard by members and their staff.

I am very happy to be associated with this initiative. However, it is people like Cassidy herself, Aurore, Iris, Sarah and many others who really deserve the credit. Bill C-278 is a direct result of their commitment to this cause and their support of the bill.

The bill is a pretty simple one, as members know. Bill C-278 would help to create public awareness about epilepsy and would officially designate March 26 as Purple Day in Canada. We will ask Canadians to wear purple clothing that day. It is not a legal holiday but it touches a lot of lives. I thank members for their support.

Purple Day Act
Private Members' Business

March 9th, 2012 / 1:25 p.m.
See context

Oshawa
Ontario

Conservative

Colin Carrie Parliamentary Secretary to the Minister of Health

Mr. Speaker, I am pleased to speak today about Bill C-278, which was introduced by the hon. member for Halifax West.

The bill seeks to establish March 26 as Purple Day in Canada, helping to raise awareness of epilepsy in Canada. On March 26, we can encourage people to wear the colour purple to show their support for people living with this disease.

Purple Day Act
Private Members' Business

March 9th, 2012 / 1:25 p.m.
See context

Conservative

Colin Carrie Oshawa, ON

Mr. Speaker, I want to thank my colleague from Halifax West. As he knows, as a young child I was quite clumsy. I had an injury which brought on epilepsy. I was one of the kids the member is trying to raise awareness of. He is trying to help Canadians understand the stigma. When people see someone with epilepsy having a seizure, they do not know what to do. There can be serious consequences for those of us who have suffered seizures.

I wonder if the member could comment on some of the things that the different groups working with epilepsy are doing to help raise awareness in the communities. He brought forward some examples at committee. Could he comment further?

Purple Day Act
Private Members' Business

March 9th, 2012 / 1:25 p.m.
See context

Liberal

Geoff Regan Halifax West, NS

Mr. Speaker, I am glad my hon. colleague asked this question. When he talks about being clumsy when he was young, I hope he does not talk to anyone who knew me when I was a kid. I was clumsy at times, perhaps more than I would like. However, I did not have the experience that he did with epilepsy.

I am glad that there are epilepsy associations across the country. They are going into schools, they are finding ways to promote awareness about epilepsy through education and public awareness activities. A variety of measures are being taken at different events. There are fundraisers for Purple Day. The Epilepsy Association of Nova Scotia is having a dinner soon. These are all some of the small ways in which people can help to create awareness.

We are doing our part and we must look for more ways to do our part. Members may know that there are little cards that list things to be aware of and what to do when someone has a seizure. I have these cards in my office that I will hand out on Purple Day.

Purple Day Act
Private Members' Business

March 9th, 2012 / 1:25 p.m.
See context

Green

Elizabeth May Saanich—Gulf Islands, BC

Mr. Speaker, it is really a tribute to a grassroots effort that has gone global that we are here today unanimously supporting a bill. It certainly is a pleasure to be united in a non-partisan way. Cassidy Megan deserves a tremendous amount of credit.

One of the ways in our technological age that we check the success of any project is to Google it. The first entry that pops up for Purple Day is the web page of this great organization. People watching at home can check it out and participate in celebrating Purple Day.

My question for the hon. member for Halifax West is what more can we do once we have passed the bill to ensure that we not only mark Purple Day and increase awareness of epilepsy, but take extra steps to make sure that people who are dealing with epilepsy are fully supported in their efforts to educate others?

Purple Day Act
Private Members' Business

March 9th, 2012 / 1:30 p.m.
See context

Liberal

Geoff Regan Halifax West, NS

Mr. Speaker, I agree with my hon. colleague and former law school classmate on this point. We ought to be looking for opportunities. When people Google the words “Purple Day” and find more information, they will see the list of things to do when a person is having a seizure. This all helps to demystify epilepsy. It helps people understand this is a fairly common condition and to know what to do when this happens. This can make a positive difference in the lives of people who have this condition.

We can keep looking for ways to spread the word about this, not just when the bill passes, but on future occasions and especially on March 26 each year. I hope we can work to overcome the issue of drug shortages which is affecting many epilepsy patients.

Purple Day Act
Private Members' Business

March 9th, 2012 / 1:30 p.m.
See context

NDP

Glenn Thibeault Sudbury, ON

Mr. Speaker, I applaud my colleague for the bill today. It truly is a great thing to see us all come together and support such an important issue.

In a former life, I ran group homes for developmentally handicapped adults. Many of these individuals had epilepsy. We saw over and over again that when someone was having a seizure, no one knew what to do. Everyone panicked. If we can have a bill like this and if we can carry the card in our wallets, it will encourage us as a society to step in and help where we can.

The bill is one more step, one more tool in the toolbox, to ensure that individuals living with epilepsy across the country can live normal and fruitful lives.

Purple Day Act
Private Members' Business

March 9th, 2012 / 1:30 p.m.
See context

Liberal

Geoff Regan Halifax West, NS

Mr. Speaker, one of the things I have learned through this process is that, for example, when someone is having a seizure, people should not crowd around. Certainly one person could help by providing comfort and making sure the individual is on his or her side. Also, it does not help when the individual comes out of the seizure and sees a big crowd looking down at him or her, causing the individual to feel uncomfortable and embarrassed.

There are many other things on the card. I sent an email earlier today to one of my assistants to say that I gave my card away this week and I hope there is a bunch to give out on Purple Day, along with the ribbons I want to hand out that day for members to wear. The answer came back that there are 500 of those cards, so I expect to have one back in my wallet by the end of the day.

Purple Day Act
Private Members' Business

March 9th, 2012 / 1:30 p.m.
See context

Simcoe—Grey
Ontario

Conservative

Kellie Leitch Parliamentary Secretary to the Minister of Human Resources and Skills Development and to the Minister of Labour

Mr. Speaker, I commend the member for Halifax West for bringing this bill forward. It is greatly appreciated.

As has been mentioned, there is a lot of fear when a person has a seizure. I know that from my practice and I have witnessed it first-hand. It is extremely important that we are moving forward with this.

Could the member elaborate on what he thinks is the one thing we as members of Parliament should be doing to ensure that Canadians across the country understand epilepsy in a meaningful way and can make a difference in saving lives?

Purple Day Act
Private Members' Business

March 9th, 2012 / 1:30 p.m.
See context

Liberal

Geoff Regan Halifax West, NS

Mr. Speaker, my colleague is a doctor and certainly knows about this issue.

Members may have a variety of answers to that excellent question. The first one that occurs to me is that if members wish, they could put in their householders, members' quarterly mail-outs, the information which is on the card. They could put that information in their householders so people would know what steps to follow when someone has a seizure.

I hope to be able to make a member's statement on Purple Day to list some of the things and tell members about them. If members could put that information in their householders, it would be a big help. Members can find that information as well on the epilepsy association website, which should not be too hard to do. However, if members want to wait until they get the card, that is an option as well.

Purple Day Act
Private Members' Business

March 9th, 2012 / 1:35 p.m.
See context

Oshawa
Ontario

Conservative

Colin Carrie Parliamentary Secretary to the Minister of Health

Mr. Speaker, I will start again.

Mr. Speaker, I am pleased to speak today about Bill C-278, which was introduced by the hon. member for Halifax West.

This bill seeks to establish March 26 as Purple Day in Canada, helping to raise awareness of epilepsy. On March 26 we can encourage people to wear the colour purple to show their support for people living with this disease.

This is an idea that all of us can support.

It is an area in which we all play a role, whether it is through raising awareness, learning about the disease or working with government colleagues and stakeholders on important programs, activities and research. For my part today, I would like to take a few minutes to tell the House more about epilepsy and the federal government's role, including its initiatives, programs, research and support.

The government is committed to promoting and protecting the health of all Canadians. Those living with epilepsy face challenges on a daily basis: discrimination, stigma, and at times a lower quality of life. The incidence of epilepsy continues to increase with diagnosis now more common in children and older adults.

There is no cure for epilepsy. The major form of treatment is long-term drug therapy, which bears its own side effects and costs every day for those suffering and their families. We now know that people living with epilepsy are often able to live normal, happy and full lives. Most go to school, make friends, date, have jobs and raise families. However, routine tasks and everyday life can still be very difficult. Whether it is coping with the negative stigma and reactions associated with unpredictable seizures or dealing with low self-esteem, self-confidence and depression, people living with epilepsy do not have an easy life, but by raising awareness of these kinds of facts, for example, what it is like to live with epilepsy, we can help affected Canadians reach their full potential.

There is much we do not know, but we do know that symptomatic epilepsy has known causes. Brain damage, head injuries, infections and tumours all contribute to this condition. Although not all of these issues can be prevented, precautions can be taken to lessen the chances of injury. This government is investing in efforts to raise awareness and shed light on this condition, including steps that can be taken to reduce risks and prevent injuries.

Before we get into the details, it is important to understand the terminology.

Epilepsy can be separated into two types: idiopathic epilepsy and symptomatic epilepsy. Idiopathic epilepsy accounts for 60% of cases. It cannot be prevented and its cause is unknown. Symptomatic epilepsy is caused by trauma to the brain, and steps can be taken to prevent it.

I would like to focus on the latter as it represents a key area in which all sectors of society can play a role. Why? For selfish reasons. I believe this is the cause of my own epilepsy, but also because injury prevention begins with all of us.

According to the Canadian hospital injury reporting program, almost 50% of all injuries in children between the ages of 10 and 19 are play related. Additionally, 40% of all reports are attributed to injury through the participation in team sports such as hockey, baseball and soccer. Between 2000 and 2002, skull and brain injuries related to team sports made up almost 15% of all reported injuries, with almost 5% of these cases requiring hospitalization.

This government is committed to reducing that incidence. For example, $5 million has recently been allocated to address sport and recreational injuries among children and youth through the active and safe injury prevention initiative.

This initiative focuses on raising awareness of the importance of safety and precaution in sports and recreation activities while encouraging children and youth to be active.

As part of the active and safe initiative, in January 2010 the Government of Canada announced approximately $1.5 million in funding to address the prevention of brain injuries and concussions in hockey.

ThinkFirst Canada, in partnership with Hockey Canada, the Coaching Association of Canada and the Canadian Centre for Ethics in Sport also continue to make significant headway.

Epilepsy Canada, founded in 1966, is a non-profit organization whose mission is to enhance the quality of life for persons affected by epilepsy. Through promotion and supportive research, education and awareness initiatives, this organization is building understanding and acceptance of epilepsy.

The Canadian Epilepsy Alliance is a Canada-wide network of grassroots organizations dedicated to the promotion of independence and quality of life for people with epilepsy and their families. It provides support services, information, advocacy and public awareness, and is working to make a difference for those living with epilepsy.

Working together to develop shared resources, they have standardized protocols for the prevention of head injuries and activities that target sports organizations at all levels. This includes team sports participants, their coaches, trainers and parents.

In order to make its own programs work, the government relies heavily on research and surveillance. For this reason, $15 million has been allocated to the national population health study for neurological conditions to strengthen the knowledge and evidence base related to this condition.

Along with other neurological disorders, this study will examine the prevalence of symptomatic epilepsy and emerging risk factors, identifying trends in preventable injuries so that an appropriate response can be developed.

It is a suite of studies aiming to fill gaps in knowledge about individuals with neurological conditions, their families and their caregivers. The studies are administered by the Public Health Agency of Canada. They will provide key information to improve current knowledge about the incidence and prevalence of neurological conditions.

Some will study risk factors for the development and for the progression of neurological conditions. Others will investigate the use of health services by patients with neurological conditions, identify gaps in those services and recommend improvements. Finally, they will assess the impact of neurological conditions on individuals, families, caregivers and communities.

In addition, the Government of Canada funds research into new treatments for epilepsy, notably through the Canadian Institutes of Health Research, CIHR.

Since 2006, CIHR has invested more than $46 million in epilepsy research to deepen our knowledge of this disease. This research investigates how genetics affect the development and treatment of epilepsy. It examines how epilepsy affects development in children, and it attempts to develop interventions to benefit the quality of life and care for people living with epilepsy.

In addition, McGill University's Montreal Neurological Institute and Hospital is examining the link between brain conditions and epilepsy.

CIHR also provided funding for the brain connectivity workshop in June 2011. This workshop brought together leading Canadian and international experts on brain development, epilepsy and neuroscience. These are partnerships that will enhance our relations with Canadian scientists and researchers in Canada and will focus attention on important health concerns. The resulting research will help us to better understand epilepsy, its causes and possible interventions.

Research funded by CIHR will improve our understanding of this complex condition, our capacity to respond effectively, and the quality of life of those living with epilepsy. Improving our understanding of the disorder will facilitate the development of treatments and better drug therapy regimens for epilepsy.

The Government of Canada is committed to these goals. Regardless of the specific area, it is critical that we work together with all sectors of society. To be fully successful in preventing secondary epilepsy through the promotion of injury prevention, our efforts must be shared and be collaborative in nature. Encouraging and supporting the work of partners and stakeholders to address symptomatic epilepsy and its causes is one way we can do just that. For example, many municipalities across Canada are making it mandatory for children and beginners to wear a certified multi-impact helmet during public skating sessions.

By working with others and taking responsibility at all levels, we are better able to prevent serious head injury and reduce the potential for secondary epilepsy. However, governments and stakeholders cannot act alone in injury prevention. We all know well that the most effective strategy for reducing any injury is to take personal precautions. According to research, many head injuries are the result of improper playing techniques and can be prevented or reduced by teaching proper skills and enforcing safety-promoting rules.

Improved conditioning, particularly of the neck; protective head gear; and careful medical supervision also minimize the risk of head injury or trauma. By encouraging and supporting the use of proper safety equipment and training, we can all greatly reduce the risk of injury and, subsequently, consequences such as symptomatic epilepsy.

By learning more about the impacts of epilepsy, we will gain reliable information on its effects on Canadians. Knowledge is power, and through that knowledge we can build awareness of this important disease.

Bill C-278 would be an important step forward toward raising awareness of epilepsy in Canada. It would be a clear sign of our support for those living with this challenging condition.

Purple Day Act
Private Members' Business

March 9th, 2012 / 1:45 p.m.
See context

NDP

Fin Donnelly New Westminster—Coquitlam, BC

Mr. Speaker, I rise today to talk about epilepsy and to speak in support of Bill C-278. I also want to acknowledge the good work of my colleague, the member for Sudbury, in raising awareness about epilepsy.

Indeed, it is an honour for me to speak in the House today on this important issue. We have to bring epilepsy out into the open due to the stigma that surrounds it and the prejudice with which society has historically treated people with epilepsy. Many with this disorder are reluctant to admit it or to seek treatment.

Epilepsy is a serious neurological disorder that affects the brain and causes sudden changes in how the brain works. It presents itself in the form of seizures.

We are all touched by epilepsy, whether of a family member, a co-worker, a friend or a neighbour. Epilepsy is a condition that affects thousands of Canadians. Every year in Canada an average of 15,500 people learn they have epilepsy. That is about 42 people each and every day who are diagnosed with epilepsy. About 60% of new patients are young children and senior citizens.

Those with loved ones suffering from epilepsy are all too familiar with the fear that surrounds this disease. They fear for their loved ones and the powerlessness that accompanies a seizure. They fear that they will be in the wrong place when a seizure occurs, that it will happen in the shower or when they are home alone.

There are so many variables to this condition that we have no power to control. However, we are not powerless. The government has a role to play and the public has a role to play too. The government must do a better job of adequately funding medical research and ensuring that medication is readily available and affordable.

The public can also play a part by educating itself about epilepsy and how to identify a seizure. Each one of us can commit to helping someone in distress and taking action so that seizure-sufferers are cared for appropriately when they experience an episode and to notifying emergency services if necessary.

Unfortunately, even today, the general public does not know how to react to a person having a seizure. There are so many misconceptions about how to help a person who is having a seizure. For example, restraining a person during a seizure is the wrong action to take, yet many people do not know that. Also, nothing should be placed in the mouth of the person having a seizure. However, old myths persist and the public needs to made aware of the facts. It should be basic first aid.

With so many Canadians living with epilepsy, awareness is the key. In my home province of British Columbia, the B.C. Epilepsy Society works to increase awareness of epilepsy and seizures by offering seizure awareness workshops, and distributing information materials for employers, community organizations, including school staff and students, child care providers, recreational leaders and community support workers.

I encourage all Canadians, and in particular the constituents of my riding of New Westminster—Coquitlam and Port Moody, to educate themselves about what to do when someone is having a seizure. It is as easy as contacting the B.C. Epilepsy Society to request their seizure first aid postcards, posters or wallet cards. This commitment to education and action will literally save lives.

March is Epilepsy Awareness Month, a time for Canadians to be reminded of the prevalence of this disease, how it affects those who live with it and their families, and what work remains to be done to support those who live with it and to support efforts to find a cure. March is also when Purple Day occurs. It is March 26.

I would like to acknowledge a brave young woman named Cassidy Megan, who had the idea for the Purple Day for epilepsy campaign. She joined with the Epilepsy Association of Nova Scotia in 2009. The Purple Day for epilepsy campaign was launched internationally.

The Purple Day for epilepsy campaign has been so important in raising awareness about epilepsy. It has involved countless organizations, schools and celebrities from around the world. It has also engaged politicians, like us in this House.

Cassidy wrote about her diagnosis in an open letter. She said:

Educating people about epilepsy is so important because people need to know what to do if they see someone having a seizure and they need to know that there are different types of seizures and that they don’t have to be afraid of epilepsy or the people who have it. Education also helps people with epilepsy know they aren’t alone.

The intent of the legislation before us in the House today is to increase public awareness about epilepsy. It proposes designating March 26 as Purple Day and it would encourage all Canadians to show their support for people with epilepsy by wearing the colour purple.

I would like to reiterate my support for the bill and its commendable goal of increasing awareness of epilepsy. However, I would like to challenge my colleagues on both sides of the House to consider what we can do as parliamentarians to go beyond simply raising awareness. We know the importance of raising awareness of epilepsy among Canadians. It saves lives, breaks through stigmas and enables us to better understand the challenges faced by those living with this disorder. As parliamentarians, I believe we owe it to Canadians to consider what additional actions the federal government can take to improve the current and future situation of those living with epilepsy beyond encouraging Canadians to wear purple.

As parliamentarians, we know there is a drug shortage in Canada, which also includes a shortage of medication to treat epilepsy. This past October, the Canadian Epilepsy Alliance warned that this drug shortage endangered the lives of those living with epilepsy. It is clear that the federal government can and must do more to address the critical issue of drug shortages in our country.

It is the job of pharmaceutical companies to develop and market effective products that best serve the interests of their bottom lines, but it is not their job to ensure that all Canadians have access to the drugs prescribed by their health professionals, nor should it be. That is the responsibility of government, representatives democratically elected to serve the higher interests of the public good. Canadians are waiting for the Conservative government to step up to the plate.

Today we are considering a bill to designate March 26 as a day to raise awareness of epilepsy. I fully support the bill. I imagine all my colleagues will do the same, but let us not be afraid to roll up our sleeves and get the hard work done of ensuring that Canadians have access to the drugs they need toward eradicating epilepsy.

Purple Day Act
Private Members' Business

March 9th, 2012 / 1:50 p.m.
See context

Liberal

Geoff Regan Halifax West, NS

Mr. Speaker, I appreciate the support of all members and their comments.

Earlier today I was in the lobby when one of the interpreters came by and said to me that I was not wearing a purple tie. Of course it is not Purple Day, but I pointed out that I did have some purple in my shirt.

This highlights the fact that our interpreters, who do a wonderful job, do not just hear what we say and repeat it in another language, but they actually look ahead and see what is coming to ensure that they have the terminology ready and that they are on the ball at all times. It is an impressive thing and we must remember the work they do is very valuable. I know members would join me in appreciating the work of our interpreters.

I want to thank the Parliamentary Secretary to the Minister of Health, the member for Oshawa, for his words today and for sharing his experience with epilepsy when he was young and what it was like for him.

I also appreciated the words from my hon. colleague for New Westminster—Coquitlam. I mentioned that I was hoping on March 26 to list some of the things that one should do when a person has a seizure. I am glad he did that today. That is very valuable. This effort is about raising the awareness and understanding of what epilepsy is and what to do when someone has a seizure.

One of the things that is important, as has been mentioned, is if a seizure goes on for more than five minutes, it is very important to call an ambulance because people can die from epileptic seizures. All of these bits of information are valuable and I hope we all continue to look for ways to make more Canadians aware of it.

Purple Day Act
Private Members' Business

February 3rd, 2012 / 1:30 p.m.
See context

Liberal

Ted Hsu Kingston and the Islands, ON

Madam Speaker, I rise today in support of the member for Halifax West, who introduced Bill C-278.

The bill is designed to make March 26 Purple Day all across Canada every year. The purpose is to raise awareness of epilepsy and to help epilepsy sufferers, their families, friends and communities recognize that there are many among us who suffer from epilepsy, but they are a part of us. Awareness will help all of us recognize how to help epilepsy sufferers during seizures and reduce the stigma attached to epilepsy.

I will start by mentioning the presence here of Susan Harrison, executive director of the Epilepsy and Seizure Disorder Resource Centre in my riding of Kingston and the Islands.

I am not standing on debate today because I am an expert on epilepsy. I am relatively ignorant of epilepsy. I am standing today because of a young woman who is a friend, a constituent and a resident of Kingston. She told me during the last election campaign that I really had to go to an event called Purple Day. At first I did not know what it was, but I attended it. I sat and listened and really realized that I did not understand epilepsy at all.

I want to start off by thanking this young woman, Kim McFarlane, who is the secretary of the Epilepsy and Seizure Disorder Resource Centres of Southeastern Ontario, for inviting me to the event and also for sharing a lot of her own personal experiences, which I will relate in my speech today.

I did not know that, for example, one in a hundred people suffer from epilepsy. That means about 300,000 Canadians. Probably a couple of members of the House of Commons are epilepsy sufferers.

What is very important is I did not realize how many different types of epilepsy there were and that there were stereotypes, mostly in our visual entertainment, of what it meant to have an epilepsy seizure. That means we do not often recognize it in our daily lives. We may confuse it and think that something else is happening, when really we have to recognize that epilepsy is a possibility and deal with it accordingly.

I would like to quote from my friend Kim, who talks about her own type of epilepsy. She says:

I apparently look spaced out with a glazed look over my face for 15 seconds to a minute. However, when I come around, I don't remember anything and usually I'm pretty tired. I could walk from point A to point B, but I won't remember how I got there. I could even have a conversation with someone, yet I won't remember a word of it. One moment, I'm working away, the next thing I know that there's a lapse of time I can't account for and I'm trying to piece together what happened. Of course, I'll never remember that brief period. All seizures are different and not everyone will have the exact same every single time. Sometimes I “space out”, sometimes I'll mumble, and other times well, even carry on what I was doing. This is just a snapshot of two of the many different types of seizures that exist.

If somebody told me about those symptoms a year ago, I would not have associated them with epilepsy at all.

In recognition of a day like Purple Day, giving it official recognition across the country will help with that awareness, and every bit of awareness of fellow members of our community will help bring us closer and allow us to help each other better.

Another aspect of awareness of different kinds of seizures is to help people who are suffering from seizures with safety during the seizure and also help support them when they come out of a seizure. Often when people come out of seizures, they are confused. They might be scared because they do not remember what happened and they have to figure out where they are now that the seizure is over.

I would like to again quote from my friend, Kim, about the stigma that is connected with seizures. This is the second thing about awareness, not only when somebody is having a seizure or right afterward and learning what to do, but learning how to live with other members of the community who have epilepsy and recognizing that they are just like everybody else. There is a couple of things they cannot do. They need special care for a few minutes sometimes, or longer, but we really have to avoid the stigma.

To understand what that stigma can mean, I would like to quote from Kim McFarlane again. She suffered from epilepsy as a young child, just like the person who is responsible for this bill, Cassidy Megan, a resident of the constituency of Halifax West.

My friend, Kim, also was diagnosed with epilepsy when she was a child. She said:

I remember the first time I ever directly felt the stigma attached to epilepsy. I was in grade 6 rehearsing for our spring play, when at the moment that it was my turn to say my lines; I had an absence seizure in front of everyone. Since I wasn't saying my lines, my teacher thought I must have been defiant. She threatened to send me to the office if I didn't answer her....[T]hat day still sticks with me. There have been many other instances, too, where I've heard comments over the years, including more recently, which one could describe as ignorant. Imagine if you will hearing someone refer to the second hand of a clock as something that looks like it's having a seizure; or standing in Dundas Square in Toronto watching hip hop/breakdancers and hearing 2 guys behind you say they “look like they are having seizures”; or watching one of your favourite reality shows, and a judge refers to a contestant's dance piece as though he's having a seizure because the body movements were a little crazy and all over the place. This is only a smidgen of things I've heard, and I'm only one person. Other times people just automatically assume that because I said the word “epilepsy” or the word “seizure”--they start panicking and think I must have tonic-clonic seizures and that I will convulse on the ground because this is the only type of seizure that is typically portrayed on primetime shows. However, the reality is I'd rather someone stop and ask me questions, than just make assumptions. It's better to become educated than to remain ignorant. The point of Purple Day is about raising awareness, about education, and about eliminating the stigma that is attached to epilepsy. As long as that stigma remains, many with the disorder will not disclose or talk about it for fear of backlash and prejudice.

That is one of the purposes of designating March 26 as Purple Day, to deal with the stigma and to educate people. It is also an opportunity to tell people about some famous people who have also suffered from epilepsy. I draw today from a speech which my hon. colleague from Halifax West gave. He mentioned a number of famous people who suffered from epilepsy: Dostoevsky and Neil Young, artists; FloJo, Florence Griffith Joyner, the athlete; Margaux Hemingway and Danny Glover, actors; and Pope Pius IX.

Purple Day is a chance to tell children especially that there are many very accomplished people in history and in the world who are co-sufferers of epilepsy. Maybe even “suffering” is the wrong word to use in some cases; it is just part of who they are. They are not somebody different; they are not outside the mainstream of society. That is another opportunity we would have, if we were to make Purple Day a national day of recognition and awareness.

I would like to conclude with a statement from my friend Kim who has been working to support and help people become more aware of epilepsy for a long time. She said:

Everyone is all unique and has their own special talents. Everyone deserves to be treated equally and fairly and not threatened by backlash or prejudged in any way. If 1 in 100 Canadians have epilepsy, statistically speaking, how many Members of Parliament, Senators, staff members, and all of their family and friends, have this neurological disorder? Help bring epilepsy out of the shadows by not only supporting Bill C-278 and asking questions instead of making assumptions, but by encouraging discussion, dialogue, and awareness not only here on Parliament Hill, but also in your own constituencies.

Purple Day Act
Private Members' Business

February 3rd, 2012 / 1:40 p.m.
See context

Oshawa
Ontario

Conservative

Colin Carrie Parliamentary Secretary to the Minister of Health

Madam Speaker, I thank my colleague for his eloquent speech. I am grateful to speak in support of Bill C-278, introduced by the hon. member for Halifax West, which promotes epilepsy awareness.

The bill calls on the Government of Canada to establish each March 26 as Purple Day in Canada. Every year on March 26, people would be encouraged to wear the colour purple to indicate their support for those living with epilepsy and to raise awareness of this serious condition. Any opportunity we have to raise awareness of this important health issue and its causes is worthy of consideration. There are many reasons for this.

Almost 190,000 Canadians are living with epilepsy, a number growing by almost 15,000 every year, many of whom are in my home riding of Oshawa.

I was diagnosed and grew up with petit mal epilepsy. I know what it is like to deal with this condition. People living with epilepsy experience brief recurring seizures that can pose serious harm. Epilepsy can begin at any age, but new cases are most common among children and older adults. While many strides have been made in addressing epilepsy, much remains to be done.

Socially, people with epilepsy can suffer from the stigma associated with it because there is little understanding about the nature of the disease. At times, people with epilepsy can also face difficulty finding employment or even obtaining private health insurance.

To underscore the challenges of living with epilepsy, we need only listen to the stories of our fellow Canadians, like Norm Beam from Niagara Falls, Ontario. Mr. Beam said:

Suffering from so many seizures due to having epilepsy was a really rough time in my life as well as my wife, Janet....

Many nights my wife and I would lay in bed in tears, feeling so helpless. We had no one to turn to. No one really understood what my epilepsy was doing to me. Friends and family weren't there for they just didn't understand. I lost a few friends after they witnessed me having a seizure.

As well, there is the case of Adam Cunningham from Burlington, Ontario. Mr. Cunningham started having seizures at eight years of age. He would have as many as 10 a day. Mr. Cunningham said these seizures felt like “somebody was bashing my head in with a baseball bat”.

As a result of his epilepsy, Mr. Cunningham lost out on hockey and lacrosse scholarships. As a result of his condition, he was not able to live alone or to drive. He even underwent brain surgery in the hopes of reducing the seizures. When referring to his epilepsy, he said:

It has been a terrible impact on my life and I don't want this to happen to anyone else.

Mr. Beam's and Mr. Cunningham's stories are but two examples of the countless challenges that Canadians with epilepsy face every day. As such, we must do more to raise awareness about epilepsy. In doing so, we can decrease the stigma faced by epileptics.

Epileptic seizures are classified as a neurological condition caused by sudden, brief electrical discharges in a group of brain cells. This condition can be separated into two types, idiopathic epilepsy and symptomatic epilepsy. Idiopathic epilepsy accounts for 60% of cases. It cannot be prevented. Its cause is unknown. Symptomatic epilepsy, also known as secondary epilepsy, the kind I was diagnosed with, can be caused by brain damage during birth, strokes, brain infections, brain tumours and severe brain injuries caused by accidents. All of these factors can contribute to epileptic seizures.

Research shows greater occurrences of epilepsy in children and seniors. For example, nearly a quarter of new seizure cases occur after the age of 60. One contributing factor in this case is a greater risk of injuries stemming from falls.

Studies show that children and seniors have a greater chance of incurring head injuries, which as I mentioned can cause secondary epilepsy. As such, activities that address supportive environments and injury prevention must be embraced. The Government of Canada is doing just that. For example, the government supports initiatives that enable both young and old to live safely and actively. It promotes active and safe routes to school, age-friendly communities and a broad range of injury prevention efforts.

The government has also provided $5 million to address sports and recreational injuries among children and youth through the active and safe injury prevention initiative.

This initiative draws attention to the importance of safety and precaution in recreational activities while encouraging children and youth to be active. While these positive initiatives are making a difference from a prevention perspective, there remains a lack of information about epilepsy that must be addressed.

That is why, in collaboration with Canada's major neurological charities, the government has implemented a four year $15 million population study. This study will determine the rates of neurological conditions in Canada and the effects of these conditions on individuals, families and caregivers.

The study involves the assistance of 25 neurological health charities, including Neurological Health Charities Canada and the Canadian Epilepsy Alliance. Data from the study will be used to better understand and meet the needs of Canadians affected by these conditions.

In addition, the government has invested more than $44 million in epilepsy-specific research since 2006, through the Canadian Institutes of Health Research, CIHR. Funding for this research comes through the Institute of Neurosciences, Mental Health and Addiction, as well as the Institute of Human Development, Child and Youth Health.

This research is crucial. It helps create new understanding about how we can build understanding and awareness of the impact of genetics on epilepsy, how epilepsy affects brain development, and what types of interventions can improve the quality of care and well-being for those living with epilepsy.

This knowledge is filling the gaps related to epilepsy that can be used to inform policies and programs and to help improve the health of Canadians. While research is key, continued action from all sectors is also critical. Right now, communities across Canada are taking action to raise awareness about epilepsy and injury prevention.

Our international partners are also taking a higher profile stance on this issue. The World Health Organization is leading a global campaign to raise awareness and provide better information about epilepsy. Together, global partners, including Canada, are building a stronger evidence base. We are strengthening and sharing our knowledge. Collectively, we are making great strides in advancing these efforts. But we can do even more.

The Canadian Epilepsy Alliance, CEA, a national support and information network, has been leading efforts to gain Canadian and international support for Purple Day. Last March, the Minister of Health recognized March as National Epilepsy Month. By drawing further attention to this issue and by declaring March 26 as Purple Day, the government will take a leadership role in these awareness raising efforts.

Before I close, I want to take a moment to offer some considerations.

The best possible path for all Canadians is to take precautions in prevention and treatment. First, proper health care and treatment is essential. Individuals with epilepsy need to ensure they seek medical advice and take their medications as directed. Even missing a dose can cause a seizure.

Additionally, those with other medical complications compounding their epilepsy must take care to ensure their medications and dosages are well managed. For people living with epilepsy, it is important to ensure their family, friends and colleagues know how to respond appropriately in the event of a seizure.

Taking precautions to prevent injuries is a shared role. We can all help to provide a safe environment. Whether we are driving, swimming, or at home, we should always be mindful of potential dangers such as falls. We would do well to remember that it is possible to prevent some forms of epilepsy by taking precautions. For example, wearing helmets helps prevent head injuries, which in turn can prevent secondary epilepsy.

For those with epilepsy, managing it well can help ensure a full life and the ability to participate in many activities. There is hope for a cure and there is hope for those living with this condition. I am evidence of that.

Bill C-278 represents a progressive step forward in raising awareness of epilepsy. It also lets epileptics know that they are not alone. By supporting this bill, we would officially enshrine in law every March 26 as Purple Day. This would increase Canadians' awareness of epilepsy and its causes. It would enable us to better support people living with epilepsy and to better understand the link between epilepsy and injury prevention.

I encourage all members to support the bill. I am confident it would make great strides toward improving the quality of life for those living with epilepsy and their families. I know this bill is extremely important to many families in Oshawa who have loved ones who suffer from epilepsy.

Again, I thank the hon. member for bringing this important issue forward for our consideration so that we can all ensure that this happens.