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, an excellent resource from the Library of Parliament. You can also read the full text of the bill.

Purple Day ActPrivate Members' Business

November 14th, 2011 / 11:35 a.m.
See context

Liberal

Geoff Regan Liberal Halifax West, NS

moved that Bill C-278, An Act respecting a day to increase public awareness about epilepsy, be read the second time and referred to a committee.

Mr. Speaker, I appreciate the applause from colleagues of various parties on this bill. In fact, I appreciate my hon. colleague from Charlottetown agreeing to second this. This morning, my colleague and friend, we were at law school together a few years ago, the member for Saanich—Gulf Islands, also wanted to second the bill. The indications are that there seems to be widespread support from all parties for this bill, which is Bill C-278, the Purple Day bill.

This bill was not developed overnight. In fact, for several years several of us in the House have been celebrating Purple Day. I hope more will next year. Purple Day was established by a young lady named Cassidy Megan in 2008. At the time, she was nine years old. She had had her first attack of epilepsy when she was seven and was concerned, embarrassed and worried about it and the reactions of others. She recognized that people did not have much knowledge about epilepsy and that they ought to. Therefore, when she was nine she had the idea that perhaps her school could have a day to recognize epilepsy and to create more awareness and understanding of it. That was really where it all started. From that has spread an international grassroots movement. I am very proud to say that it started in my riding of Halifax West, although it is really Cassidy Megan who deserves the credit for this, obviously.

I also want to thank the Epilepsy Association of Nova Scotia, the Canadian Epilepsy Alliance, the Epilepsy Support Centre and many other organizations for their support of Purple Day. I understood Purple Day was celebrated in more than 47 countries, but I saw today an article in iPolitics by Jon Waddell, who says it is now celebrated in 60 countries. I am delighted to hear that. It is great that it is increasing.

The long title of the bill is, “an act respecting a day to increase public awareness about epilepsy”. Bill C-278 would formally establish March 26 as Purple Day in Canada and it would encourage people to wear the colour purple on that day. Purple Day would not be a legal holiday.

Epilepsy affects 300,000 Canadians and over 50 million people worldwide. In fact, I understand that is more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease all combined. Of course, these are all significant diseases which obviously also require our attention.

Let me talk for a moment about a few of the famous people who have had epilepsy. It is quite a list. It includes: Fyodor Dostoevsky; Neil Young; Lindsey Buckingham; Prince, or the Artist Formerly Known as Prince; Florence Griffith Joyner, who won gold medals in the Olympics; Margaux Hemingway; Danny Glover; and Pope Pius IX.

There are also many cases where doctors and experts have looked back and given retrospective diagnoses on people who may have had it a long time ago. This is not for certain, but some of the names include: Alexander the Great, Socrates, Julius Caesar, St. Paul, Molière, Tennyson, Byron, Napoleon Bonaparte, Harriet Tubman, Beethoven, Handel, Agatha Christie, Charles Dickens, Vincent Van Gogh, Lewis Carroll and George Gershwin. In fact, it is not surprising when we hear all these names that there has been some sort of consideration and discussion over the years about a link between epilepsy and greatness, because there are some really incredible names among this group.

Cassidy chose the colour purple after the international colour for epilepsy, which is lavender. The lavender flower is often associated with solitude. It is representative of feelings of isolation that are often felt, understandably, by many of those affected by epilepsy and other seizure disorders. They often feel misunderstood, embarrassed and afraid. It is important to overcome those feelings, which is why this is such a great idea, I think.

A deeper understanding of epilepsy will help educate people about what needs to be done during a seizure and will help provide more security and support for people with epilepsy.

Imagine someone who has just turned 16 and is looking forward to getting his or her driver's license. The person passes the test the first time. A week later he or she has a seizure for the first time and ends up in hospital. The doctor tells the individual that he or she cannot drive for one year, after the excitement of just getting his or her licence. Not only that, but the individual can no longer compete with the cheerleading team. This is just one example of all of the stories I have heard from people who have epilepsy.

Imagine what it must be like for a person to have a seizure at work or school and people's reaction because of their lack of knowledge and understanding about this disorder. When the person comes out of the seizure he or she feels scared and confused. Imagine the security and support people affected with this disorder would feel if people became more aware about epilepsy and the different kinds of seizures and what to do if someone has a seizure.

The Canadian Epilepsy Alliance has an excellent website, epilepsymatters.com, which offers advice on what to do if someone has a seizure. I am sure there are other places where people can find information but this website has great information. It has a page, for example, on first aid for convulsive seizures. There are also non-convulsive seizures and people can read about them on the website.

This is what to do if someone has a convulsive seizure: First, do not panic. Stay calm. Second, time the seizure. If it is longer than five minutes, call an ambulance. Third, explain what is going on to those around the individual. Ask people to stand back and give space. The last thing a person needs when he or she comes out of a seizure is to have a big crowd looking on which could make the person feel even more anxious. Fourth, cushion the person's head and neck with something soft, such as a pillow or a coat, to avoid the person being injured. Fifth, roll the person on his or her side to prevent choking. Clear the area of dangers, such as a hot cup of coffee or a knife or other sharp objects. Get those things out of the way. Do not put anything in the individual's mouth. Do not restrain or hold the individual or try to stop him or her from moving. Speak gently. Be kind to the person during and after the seizure so that when the seizure is over he or she will be calm and those around will also be calm. Another suggestion is to loosen the person's tie or shirt collar.

I hope the bill will get Canadians talking about epilepsy and learning about seizure disorders. That was Cassidy's objective when she founded Purple Day.

In a recent letter, Cassidy explained why she undertook this project. She said that she started Purple Day when she was nine because when she was seven and first found out that she had epilepsy, she was afraid and embarrassed of what other people would think. She was afraid that they would treat her differently and not be her friends. She also thought that she was the only kid in the world with epilepsy. She wanted to have one day where everyone in the world would show support for people with epilepsy and teach people about epilepsy and that people with epilepsy would know they were not alone. She said that people need to know there are different types of seizures and that people do not have to be afraid of epilepsy or of people who have it. She said it would also help people know for sure when Purple Day is. She said that education about epilepsy is important for those living with epilepsy so they know they are not alone.

That is quite a remarkable statement from a girl who is now 12 years old.

I want to congratulate Cassidy on her hard work and imagination in establishing Purple Day. Bill C-278 would bring Cassidy's dream to fruition in Canada. I hope the bill will pass so that it will be officially enshrined in law for Purple Day on March 26, 2012.

This is a case where all MPs can come together to do something positive, and I think we are going to see that today and in the days to come.

I am honoured to be the sponsor of this legislation. This is certainly not my bill; it is Cassidy's bill. I would not have learned as much as I have about Purple Day if it were not for her initiating this idea. I undoubtedly would not have been the person to bring this forward if it were not for Cassidy Megan and her efforts and her bold idea.

Let us recognize Cassidy's bold idea. Let us recognize Cassidy's imagination. Let us recognize Cassidy's courage. Let us move the bill forward.

Purple Day ActPrivate Members' Business

November 14th, 2011 / 11:45 a.m.
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Liberal

Joyce Murray Liberal Vancouver Quadra, BC

Mr. Speaker, I want to acknowledge my colleague for bringing forward Bill C-278. The member's comments were very helpful and accurate from my personal experience in living with a family member with seizure disorder.

I was particularly struck by the member's comments regarding the link between epilepsy and greatness. In some countries in Africa there is a connection made between those with seizure disorder and those who are especially potent, creative people, spiritual healers and leaders in their communities. Raising awareness of this disorder is an important task and I congratulate the member on this initiative and I congratulate Cassidy for having stimulated it.

Are there specific activities the member would see for Purple Day?

Purple Day ActPrivate Members' Business

November 14th, 2011 / 11:45 a.m.
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Liberal

Geoff Regan Liberal Halifax West, NS

Mr. Speaker, I thank my hon. colleague for her comments and kind words.

I think Cassidy and others involved with Purple Day to promote epilepsy awareness would want people not only to wear purple but also to learn about epilepsy on Purple Day, March 26. I would encourage everyone to visit the website, epilepsymatters.com, which is the website of the Canadian Epilepsy Association. The website has some very simple and clear information.

I would hope that we would have activities not only here but elsewhere in other countries. This movement has spread to 60 countries already. People would become more aware of what epilepsy is and how it happens. For example, epilepsy has to do with electrical currents in the brain. When there is a bit of an electrical storm, one might say, the nerve signals from the brain to the body do not work the way they should. The reason a person may be staring is that the signals from his or her eyes are not getting to his or her brain in order to understand what is happening.

It is interesting to read and learn about epilepsy. I hope that Purple Day would be an occasion for people to take the time to do that.

Purple Day ActPrivate Members' Business

November 14th, 2011 / 11:50 a.m.
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Conservative

Bev Shipley Conservative Lambton—Kent—Middlesex, ON

Mr. Speaker, I want to thank my colleague from Halifax West for presenting Bill C-278. The member mentioned what one should do when someone is having a seizure. People call 911, but in rural areas often it is the firefighters who arrive before the ambulance. They are well trained in CPR, but are they trained to know the signs of a seizure and what to do if someone is having a seizure?

Purple Day ActPrivate Members' Business

November 14th, 2011 / 11:50 a.m.
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Liberal

Geoff Regan Liberal Halifax West, NS

Mr. Speaker, I thank my colleague from Lambton—Kent—Middlesex for his kind words, his support of the bill and for his question, which is an excellent one.

While I would anticipate that people who are first responders would have training in how to deal with epilepsy, I do not know for sure. Firefighters visit us on the Hill. They were here a few weeks ago. We might ask them, or folks in our own ridings, whether that is the case. At the very least we can be sure that by promoting Purple Day and events that create awareness of this disorder people would become aware of what to do. That would include first responders. I suspect most of them would be well trained, as is usually the case, but it is something to check into to make sure.

Purple Day ActPrivate Members' Business

November 14th, 2011 / 11:50 a.m.
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Conservative

Patricia Davidson Conservative Sarnia—Lambton, ON

Mr. Speaker, I rise to speak to this very important issue that affects so many Canadians and their families. Bill C-278 seeks to raise awareness about epilepsy by establishing March 26 as Purple Day in Canada. I would like to thank the hon. member for Halifax West for introducing this important bill. I would further like to congratulate him for his advocacy on this matter and especially for his work with Cassidy Megan, a constituent from his riding.

Cassidy is a young Canadian with epilepsy. In 2008, Cassidy created the idea of a Purple Day campaign to dispel myths about epilepsy and inform those with seizures that they are not alone. Cassidy's initiative quickly caught on. In 2009, Purple Day was launched internationally. Since then it has been observed by many people in countries around the world. Cassidy's work to raise awareness about epilepsy represents the best of what young Canadians can do and I congratulate her for her efforts.

Epilepsy is a serious disease that affects over 300,000 Canadians and 50 million people worldwide. It is a physical condition characterized by sudden brief changes in the way the brain works. It is a symptom of a neurological disorder that affects the brain and shows itself in the form of seizures. It is usually diagnosed after a person has had at least two seizures that were not caused by a known medical condition, like extremely low blood sugar.

Each year approximately 15,000 Canadians, the majority of them children and seniors, learn that they have epilepsy. The nature, frequency and intensity of epileptic seizures vary from person to person. Some seizures are hardly noticed while others are totally disabling. Contrary to popular opinion, there is no evidence to suggest that they cause brain injury, nor to indicate that they result in developmental delay. There is no cure for epilepsy. The major form of treatment for Canadians with epilepsy is long-term drug therapy. The side effects of this medication and the costs associated with it are burdens that Canadians bear every day.

Despite this, we now know that epilepsy is perfectly compatible with a normal, happy and full life. Most people with epilepsy go to school, make friends, date, have jobs and raise families. It is not always easy. Sometimes coping with the reactions of other people can be the most difficult part of living with this disorder. Oftentimes, the very unpredictability of seizures can lead to low self-esteem and self-confidence, as well as depression. However, by raising awareness of what it is like to live with epilepsy, we can help affected Canadians to reach their full potential.

Although many Canadians living with this condition lead full and successful lives, others will need ongoing support from their families, friends and caregivers, as well as the health system. Good medical care is based on a partnership and commitment between health providers, patients and caregivers.

We know that caring for patients with chronic medical and neurological disorders is often associated with significant stress and additional responsibility for family and friends. We are just starting to learn about the burden experienced by caregivers of patients with epilepsy and how to support them.

The burden of care carries emotional, psychological, physical and economic impacts, as well as related distressing feelings such as loneliness, shame, anger and feelings of guilt. Validation and the right support system have been shown to have a positive impact on patients and their caregivers, and we have to continue efforts in this area. Support systems for people with epilepsy, their families and their caregivers exist in the form of national organizations that provide information and support for Canadians living with epilepsy and their families and friends.

For example, 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 support of 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. By providing support services, information, advocacy and public awareness, it too is working to make a difference for those living with epilepsy.

Likewise, the Government of Canada is pleased to work with its partners and stakeholders to promote epilepsy awareness by investing in activities that support a stronger evidence base and strengthen our knowledge of epilepsy.

The Government of Canada recognizes the challenges facing people with epilepsy, their families and their caregivers. The strength and resolve that they demonstrate each and every day is an inspiration to us all.

The government applauds efforts like those of Cassidy to erase the social stigma associated with epilepsy and to help establish stronger communities for people affected by it. Our support of Bill C-278 is a small but significant way in which we can promote understanding and continue to show support for those with epilepsy.

The government is also committed to ensuring that Canadians with epilepsy have stable access to safe, effective and affordable treatment. For many people living with epilepsy, long-term drug therapies are an essential element of their treatment regime. As such, I would like to outline some of the ways the government does this.

The federal government regulates all drugs in Canada, including anti-epileptic drugs. This work ensures that high quality drugs are safe and effective when they reach the Canadian marketplace. Through the Patented Medicine Prices Review Board, the government further ensures that the prices for new drugs reaching the market, including those that are breakthrough drugs, are not excessive.

The role of the government does not end when drugs are approved for sale in the Canadian market. Decisions must be made about which drugs to use. This is especially true with epilepsy. Epilepsy takes many forms and there are many drugs available to treat it. Access to evidence-based information is therefore crucial for making informed decisions that harness the benefits of drug therapies while getting the best value from every health care dollar.

The Canadian Agency for Drugs and Technologies in Health provides decision makers with the evidence, analysis, advice and recommendations they require to make informed decisions on the treatment of conditions such as epilepsy. The agency administers the Common Drug Review, a pan-Canadian process for generating objective, rigorous reviews of the clinical, cost-effectiveness and patient evidence for drugs. The Common Drug Review also provides formulary listing recommendations to the publicly funded drug plans in Canada and makes its recommendations public so Canadians can have access to information that affects the health care they receive.

This work proved valuable for people with epilepsy, most recent in a rapid-response report issued by the Canadian Agency for Drugs and Technologies in Health in April 2011. The report listed guidelines for when a single drug should be used for epilepsy treatment and for when more than one drug should be used. It indicated which drugs to use when more than one drug was needed and it provided these guidelines for adults, pregnant women and children. This report will be useful for patients, physicians and pharmacists alike. It will facilitate the decisions surrounding which drug to take and under what circumstances. A single, clear and Canada-wide standard was not available prior to this.

Another rapid response report was issued in April 2011 on the safety and comparative effectiveness profile of a new drug for epilepsy. The new drug was assessed against standard epilepsy drug therapies for clinical effectiveness, safety and cost effectiveness. The report provides evidence to help set the new drug in the context of other drug therapies available. This makes it easier for people with epilepsy and their health care team to decide whether to use the new drug and why.

Through the work of the Canadian Agency for Drugs and Technologies in Health, the government helps epilepsy patients and physicians decide on a course of treatment according to the best available evidence. Additionally, the government recognizes that when it comes to people with neurological conditions, there is a lot that we simply do not know. Epilepsy is no exception to this. That is why the government has been supporting research to raise awareness and improve our understanding of epilepsy.

One such research initiative is a four year national population health study of neurological conditions announced in 2009. This initiative 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 the risk factors for the development and progression of neurological conditions. Others will investigate the use of health services by patients, identify gaps in the services and recommend improvements. Finally, studies will assess the impact of neurological conditions on individuals, families, caregivers and communities.

Canadians living with epilepsy face unique physical and social challenges in managing their condition. We have made great strides in helping people with epilepsy to lead full and happy lives, but there is still much work to be done. Bill C-278 is a step in the right direction. By declaring March 26 to be purple day in Canada, we will be working with a community of people with epilepsy, their families and their caregivers to demystify the social stigma surrounding epilepsy.

Purple Day ActPrivate Members' Business

November 14th, 2011 / noon
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NDP

Dany Morin NDP Chicoutimi—Le Fjord, QC

Mr. Speaker, today we are debating Bill C-278. Before I start my speech, I want to give a little background for those who may be watching at home. In 2008, a young girl from Halifax named Cassidy Megan, then 9 years old, wanted to get other children in her circle talking about epilepsy and to let other children living with epilepsy know that they are not alone. I would be very happy if this day were recognized finally by Parliament in 2011.

Thanks to the Epilepsy Association of Nova Scotia, Purple Day is now celebrated in over 35 countries. Epilepsy affects over 50 million people in the world—more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. We invest a lot of money in the diseases I just mentioned and there is a lot of work done to promote awareness. However, epilepsy is often forgotten. It would be a very good thing for Parliament to pass this bill.

I would like to explain what epilepsy is, as most people have only a passing knowledge of it. We have seen the shocking images of a child convulsing on the floor, sometimes foaming at the mouth. We do not know what to do when that happens. I am going to talk a little bit about what happens when someone has epilepsy.

Epilepsy is a brain disorder that causes seizures. Abnormal functioning of the brain's cells produces a sudden, acute, fleeting electrical discharge in certain parts of the brain. After an abnormal electrical discharge, people having an epileptic seizure experience a change in their usual personality for a moment. They lose control of their body. They lose consciousness. That is really what happens.

Epilepsy is one of the most common neurological disorders. Some 50 million people around the world have epilepsy and an estimated one in 100 Canadians has it. That is a rather significant number. The average person easily knows 100 people. It is quite possible that one of them has epilepsy. It could be a young child, an adult or a senior. This disorder can cause other problems related to the person's age. I will get into that a little later.

One in 100 Canadians adds up to 300,000 people in Canada, which is not insignificant. This is a global problem, a national problem. It is important that both the NDP and the rest of House of Commons take concrete measures to help those suffering from epilepsy and the loved ones taking care of them. We must also raise awareness among all Canadians about what people with epilepsy are going through.

Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. It is a major problem in Canada. How does epilepsy affect everyday life? According to the International League Against Epilepsy, epilepsy can have serious physical, psychological and social repercussions due mainly to the unpredictability of the seizures. During these seizures, people lose control of their bodies. They do not choose at what time of day or night an abnormal electrical discharge is going to trigger a seizure.

Imagine what could happen on the roads if a person is driving and suffers an epileptic seizure. Imagine what could happen if someone was going down the stairs and had a seizure. Losing control of your body is a serious problem. The physical dangers are particularly worrying because the seizures are unpredictable. Surely the two examples I just provided demonstrate why I feel that epilepsy is a problem that Parliament should be addressing.

I want to provide another example. This one focuses more on the psychological and social aspects of epilepsy. A new father does not dare hold his newborn for fear of having a seizure and dropping the baby. Epilepsy can have numerous repercussions on an individual's life, no matter what his or her age. It is important for children to be accepted at school and in their social circle. Children who have an epileptic seizure at school could feel stigmatized because their classmates do not understand what is happening.

There could be social implications for these children who have epileptic episodes.

If we look outside Canada at developing countries, one statistic claims that 60% to 90% of people living with epilepsy do not receive any form of treatment because of a lack of resources and health care services as well as social stigma. Many people are left untreated and must live with this condition without any hope for improvement to or, at the very least, control over their situation. And epilepsy can be controlled.

In terms of treatment, at least 70% of people with epilepsy react well to treatment, but 30% do not respond to currently available treatments and still have uncontrolled seizures. In Canada, where people receive treatment, three-quarters of them take medication and their epilepsy is under control. However, there are still gaps in the medical and pharmaceutical science: the medication does not work for one person out of every four.

It is therefore important that Canada invest in research in order to find new anti-epileptic drugs that will help these people in their lives.

It is also important to improve access to global epilepsy assessment and treatment programs. Epilepsy affects Canadians and people outside Canada. It is also important to make everyone aware of this condition. It is not an illness; it is a condition.

It is also important to increase funding for research in this area. As I mentioned earlier, the medication available is insufficient and is not yet effective in all cases. It is therefore important to invest in research.

The pharmaceutical aspect aside, there is also another possible treatment. As I already said, one in four Canadians does not respond to the medication, or the medication is not effective in treating them. Surgery could therefore be a worthwhile option. It is the only solution for at least half of the people who do not respond to the medication. It is therefore important to make these young people aware that there is another form of treatment available and to advance the research to make this treatment safer.

I would now like to present the NDP's position. We are in favour of this bill. This day has been celebrated across the world for a number of years now. It is important that it be celebrated as early as possible in Canada and that it be enshrined in law.

However, I am a bit disappointed that this bill is not larger in scope. In the end, the bill merely serves to designate March 26 as Epilepsy Awareness Day and to encourage people to wear purple on that day.

In our opinion, it would be better to take this bill one step further in order to find concrete measures to help those who suffer from epilepsy and their loved ones. However, this bill is a step in the right direction.

I have an interesting statistic for you. Right now, we know that there is a drug shortage in Canada. We know that the Conservative government is dragging its feet on developing a strategy to solve this problem.

However, according to a briefing note about anti-epileptic drug shortages by the Canadian Epilepsy Alliance, drug manufacturers are not in any rush to address the current shortages, which largely affect lower-cost generic drugs with small profit margins.

The shortage of drugs used to treat epilepsy can have serious consequences that can reduce the quality of life of those with the condition and even put their lives at risk.

Earlier I mentioned that 70% of people—an encouraging statistic—react well to the medication. However, people need to be able to access that medication.

I would also like to talk briefly about some figures. As I said, the unpredictable nature of seizures can put people's lives at risk. Given that epilepsy can lower self-esteem and cause depression or even suicidal thoughts, it is very important that we address this.

Once this bill passes, I hope the Conservatives will go above and beyond the provisions of this bill and implement concrete measures to help people with epilepsy and their loved ones, and to tackle drug shortages. People need their medication. It would be appreciated if the government could show some leadership on this.

A tax credit for family caregivers could also be very worthwhile. As we know, very few measures exist. It would be a small step, and we encourage the government to do more.

Purple Day ActPrivate Members' Business

November 14th, 2011 / 12:10 p.m.
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Liberal

Sean Casey Liberal Charlottetown, PE

Mr. Speaker, I would like to begin by commending the member for Halifax West for introducing this important bill, Bill C-278, the purple day act.

The member, as we know, has served his constituents very well over the years, having been an MP for much of the last two decades, and has also had the distinction of serving as a senior member in the federal cabinet of the previous Liberal government.

His efforts here today reflect his passion to make the lives of others better, and his initiative to mark March 26 as a day to create awareness for epilepsy in Canada is welcomed.

It is also heartening to see that the bill appears to have support on both sides of the House and that it will proceed through the normal parliamentary process and receive royal assent in due time. I say this because it is important that this issue not be viewed as a political one, but rather as an opportunity for the House to express an opinion on a matter that affects so many Canadians.

As we have heard from the member for Halifax West, it is motivated by one of his constituents, Cassidy Megan, who chose the colour purple after the international colour for epilepsy, lavender.

The lavender flower, as we may know and as has been mentioned, is a flower that is often associated with solitude, with being alone. It is that feeling of isolation that many people affected by epilepsy and seizure disorders often feel. They often feel that no one understands.

However, we do want to understand. This bill would help.

Epilepsy affects over 300,000 Canadians and over 50 million people worldwide. Many of us here today can only imagine what it must be like to be afflicted with epilepsy. We can only imagine what it must be like to be at work, on a school playground, in a classroom, perhaps on a date, or in any other number of situations when a seizure occurs. We can only imagine what it would be like to be young like Cassidy and looking to obtain a driver's licence, or perhaps wanting to embark on a career in the trades, to operate heavy equipment, to be a medical doctor or a dentist, but being unable to because of the possibility of a seizure and its attendant consequences. A young person's life choices are limited because of this unfortunate condition.

Far too often, people who suffer from epilepsy feel embarrassed and worry what others might think. That is why this bill is important. The bill from the member for Halifax West is designed to create awareness about epilepsy for Canadians like me, who may not fully understand what happens when a person has a seizure and what we can do to perhaps assist when one occurs.

Today is a first step in our efforts to create awareness. We hope that with passage of the bill, each March 26 this House and all Canadians will focus on this important issue.

There is much to be learned. For those watching--and I realize that the member for Halifax West has recounted some of these measures--I wish to point out a few things that one could do to assist someone who is having a seizure. I would like to read them into the record today, because it is important that Canadians have as much information as possible.

If we witness a seizure, we cannot stop it, so please do not try.

People should not shake or hold the person who is having a seizure.

Nothing should be put in the person's mouth. People do not swallow their tongues during seizures. Even trying to give medicine could cause choking.

Something soft, such as a pillow or a rolled-up coat, should be placed under the person's head. This action would help to protect the head from injury.

The person may be rolled onto his or her side to keep the airways clear. Ties or shirt collars should be loosened. Any nearby hazards, such as hot beverages, should be removed.

When the person regains consciousness, he or she may be dazed or tired.

It is important to stay calm, provide reassurance and stay beside the person until he or she feels better again. If the seizure lasts less than five minutes, inquiry should be made about a hospital evaluation.

It is important to call authorities, such as 911, if the following conditions exist: if the person having the seizure is pregnant, injured or a diabetic; if the seizure happens in water; if it lasts longer than five minutes; if a second seizure begins before the person regains consciousness; if the person does not begin breathing normally or does not return to consciousness after the seizure stops; or if this is a first seizure.

I want to thank all organizations and volunteers who work to improve the lives of people who suffer from epilepsy. It is important that we create awareness, and I believe this bill does just that. I am honoured to have had the opportunity to second it and speak to it.

Purple Day ActPrivate Members' Business

November 14th, 2011 / 12:15 p.m.
See context

Conservative

Bev Shipley Conservative Lambton—Kent—Middlesex, ON

Mr. Speaker, I also want to thank the member for Halifax West for bringing forward this bill.

It was initiated by Cassidy Megan, a young lady who was seven years old. She must have incredible self-esteem and self-confidence, and I thank her for that.

The bill seeks to raise awareness of epilepsy by establishing March 26 as purple day in Canada. On March 26 we can encourage people to wear the colour purple to show their support for people living with this terrible disease.

From the outset, I want to say to the member that we will be supporting the bill.

In the context of the bill, I would like to take a few minutes to tell the House more about epilepsy and the experience of Canadians who live with this condition.

Epilepsy is a chronic neurological disorder. It causes brief recurring seizures. Currently epilepsy affects 1% of Canadians. An estimated 160,000 people are living with this disease.

Every year, approximately 15,000 Canadians learn that they have epilepsy. While epilepsy occurs at all ages, about 60% of new patients are either young children or seniors. The good news is that in about half of the children diagnosed with epilepsy, the seizures will eventually disappear over time.

As the baby boom generation reaches retirement age, the number of epilepsy cases among the elderly, unfortunately, is expected to rise. Brain tumours, head trauma, substance abuse and serious infections are the most common causes of epilepsy. However, often the cause of epilepsy is unknown, leaving patients wondering about the issue.

Although many people living with epilepsy enjoy productive lives, living with this condition presents significant challenges for patients, their families and their society.

Epilepsy can affect participation in key aspects of life. Some of those, such as community, school, employment and leisure have been talked about earlier today. Because of the fear of social stigma, many people suffering with epilepsy are reluctant to admit they have it and seek treatment. As a result, the numbers of Canadians living with epilepsy are likely even greater than originally thought. This is why Cassidy Megan needs to be thanked for her initiative in bringing forward purple day.

There is no cure for epilepsy. At best, medications and other treatments can help manage seizures. Despite advances in diagnosis and treatment, epilepsy is among the least understood of all chronic conditions.

We know that greater awareness and acceptance can help. They can help address the stigma associated with this disease and they can help improve the lives of Canadians who have epilepsy.

Bill C-278 builds on significant efforts already under way to support people living with epilepsy by raising the awareness of all Canadians about this challenging disease.

This year the Minister of Health recognized March as National Epilepsy Month. This gesture was another important step in raising awareness and improving the quality of life of those living with epilepsy across Canada.

In the spirit of Bill C-278, the Government of Canada has been supporting research to improve our understanding of epilepsy. Through the national population study on neurological diseases, the Government of Canada is working with the major neurological charities, including the Canadian Epilepsy Alliance, to implement a four-year study of Canadians affected by neurological disorders, including epilepsy.

The Canadian Epilepsy Alliance is a nationwide network dedicated to the promotion of independence and quality of life for people with epilepsy and their families through support services, information, advocacy and public awareness.

The Government of Canada provided $15 million over four years to undertake the study. It is the first ever comprehensive national study on the impacts of neurological conditions on Canadians. It will help us fill gaps in what we know about neurological conditions, including epilepsy. In fact, it is a suite of studies designed to answer important questions that will help us all understand the impact of brain conditions on those living with these diseases, as well their families and caregivers. Teams of researchers across the country are working together to conduct these studies.

While neurological conditions differ in their underlying causes and effects on the brain and nervous system, they share many common features. Whether people are living with epilepsy, Alzheimer's or Parkinson's disease, they face similar challenges in accessing the support they need in order to improve and maintain their quality of life.

This neurological study is exploring the everyday experience of living and managing neurological conditions such as epilepsy. It will improve our knowledge about its prevalence, risk factors, use of health services, economic costs and the impact of neurological diseases, both current and projected, over the next 20 years.

As well, the government has invested in other measures to better understand epilepsy and to fill in the knowledge gaps through research by raising awareness. Raising awareness is exactly what Bill C-278 is about.

Between 2006 and 2010, the Canadian Institutes of Health Research, CIHR, invested almost $40 million into epilepsy research that will deepen our knowledge of the disease. The research will ultimately help build awareness of the impact of genetics on epilepsy, how epilepsy affects brain development, as well as interventions to improve the quality of care and well-being for those living with epilepsy. Overall, research like this will improve our capacity to respond more effectively.

Bill C-278 recognizes that the value of research is key to building awareness through a better understanding of the condition.

The CIHR has two leading institutes that support epilepsy research, the Institute of Neurosciences, Mental Health and Addiction, and the Institute of Human Development, Child and Youth Health. These research institutes engage the research community in the creation of new knowledge and then translate it to inform policies and programs, all with the goal of improving the health of Canadians.

Through the CIHR, the Government of Canada continues to support researchers undertaking epilepsy research at post-secondary institutions across Canada. For example, the University of Toronto's Centre of Research and Neurodegenerative Diseases and McGill University's Montreal Neurological Institute and Hospital.

In June of this year, the CIHR funded the brain connectivity workshop in Montreal to bring together leading experts on brain development, epilepsy and neuroscience. This work will help strengthen the collaboration between Canadian scientists and experts around the world. By working in partnership, we will increase our understanding of epilepsy.

Those are all steps in the right direction. By learning more about the impacts of epilepsy, we will gain reliable information on its effects on us as Canadians. Through knowledge, we can build awareness of this important disease.

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

Purple Day ActPrivate Members' Business

November 14th, 2011 / 12:25 p.m.
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NDP

Djaouida Sellah NDP Saint-Bruno—Saint-Hubert, QC

Mr. Speaker, here on this side of the House, we support the principle of the bill introduced by the hon. member for Halifax West. Given that Canadians with epilepsy still face a great deal of prejudice, parliamentary recognition of a day dedicated to epilepsy awareness represents an excellent initiative. I thank the hon. member for Halifax West and Cassidy Megan, who first suggested declaring such a day back in 2008.

Thus, I support this bill in principle. Unfortunately, as it stands, the bill contains a few translation errors. The most significant error in the bill is the use of the expression “Journée pourpre” in French, when the term recognized by epilepsy advocacy groups in Quebec and the official term used by the Canadian Epilepsy Alliance is “Journée lavande”. I will be very happy to propose this amendment once the bill is referred to committee. I would also like to draw the House's attention to the French word “condition” instead of “maladie”, as suggested by France Picard, the executive director of the Association québécoise de l'épilepsie.

As I mentioned earlier, I support this bill in principle. We need to raise awareness among Canadians about a condition that affects more than 300,000 people in Canada, including 45,000 in Quebec, along with their families, relatives and friends. Those affected face many myths and prejudices every day. Some of these prejudices are minor but others have more serious consequences. In Montreal, a young woman was fired by her employer after indicating on insurance forms that she has epilepsy. Her employer was unaware that, like two-thirds of those affected by epilepsy, this young woman uses medication to manage her seizures and the likelihood that she will miss work because of seizures is low. This is an example of the type of prejudice that people with epilepsy still have to deal with today. These prejudices have a serious impact on their lives. It would be easy to say that this example is only an anecdote and an isolated incident, but organizations working in this field regularly see such cases.

Prejudices against people with epilepsy and the fear of epilepsy create additional obstacles for those living with the condition. As I just mentioned, employment can be affected, although not everyone with epilepsy has been fired or is unemployed. Organizations working in this area have clearly stated that people with epilepsy are more likely to be underemployed or unemployed. Access to education is also an obstacle for some people.

Prejudices cause mental health problems. Rejection by school friends or colleagues due to ignorance about epilepsy affects one's social life, love life and self-confidence. The resulting isolation translates into higher rates of depression and, unfortunately, higher rates of suicide than the Canadian average.

Raising public awareness will definitely have a positive effect on the lives of all Canadians affected by epilepsy. Knowledge can dispel prejudices arising from ignorance. Furthermore, educating health professionals is also desirable and a day of awareness will help.

For certain people with this illness, surgery is the only possible treatment. But there are currently too few specialists who realize that surgery is no longer a last resort for treating epilepsy—far from it, in fact. There is now a tool available to health care professionals that allows them to evaluate whether a patient should be referred for surgery or not. It was created by a team led by Dr. Nathalie Jetté from the University of Calgary. It is available online to all health care professionals. I would like to congratulate them publicly for this tool.

An epilepsy awareness day would educate the public and health care professionals about epilepsy, its consequences and treatments.

For the majority of people with epilepsy, treatment is simple: medication. Medication allows them to live their lives without the perpetual fear of a seizure. Medication also allows them to get a driver's licence and hold down a job.

Right now, a lack of certain medications is threatening to leave many cases of epilepsy untreated. The Canadian Epilepsy Alliance sounded the alarm in October and it was unequivocal: lack of medication can endanger the lives of those with this condition. Lack of medication means that the seizures will start again. Changing medication can also have the same effect.

How can the government see this situation and sit idly by? We need to put words into action. If the House supports this bill—which I hope will be the case—it also has the moral obligation to ensure that those living with epilepsy do not have to deal with additional obstacles due to factors such as the quest for profit or the fact that certain companies are no longer producing less profitable drugs.

The minister and this government must take immediate action to solve the shortage of anti-epileptic drugs and many other drugs. This government must not allow itself to be fooled by the pharmaceutical industry. It must take action to ensure that all Canadians have access to the drugs prescribed by their health professionals. Furthermore, Canadians have the right to know what measures this government is taking to ensure our drug supply and, if that is not the case, to know why this government feels justified in endangering the lives of thousands of Canadians because of its inaction.

The drug shortage is not a new phenomenon, and this government needs to be accountable and explain why it has not taken any action or any effective measures to resolve this problem.

I truly hope that this bill passes and that March 26 is declared Purple Day. It is important that this House recognize the initiative put forward by a young Canadian, especially since it is already recognized in over 45 countries. I can only hope that this bill will ensure that the Minister of Health pays special attention to this issue and tries to solve the drug shortage. Now would also be a good time to implement some of the measures we suggested during the last election campaign, such as a family caregiver tax benefit, which would certainly help the families of those with more severe cases of epilepsy.

Purple Day ActPrivate Members' Business

November 14th, 2011 / 12:35 p.m.
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Conservative

The Acting Speaker Conservative Bruce Stanton

The time provided for the consideration of private members' business has now expired, and the order is dropped to the bottom of the order of precedence on the order paper.

The House resumed from November 14 consideration of the motion that Bill C-278, An Act respecting a day to increase public awareness about epilepsy, be read the second time and referred to a committee.

Purple Day ActPrivate Members' Business

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

Ted Hsu Liberal 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 ActPrivate Members' Business

February 3rd, 2012 / 1:40 p.m.
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Oshawa Ontario

Conservative

Colin Carrie ConservativeParliamentary 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.

Purple Day ActPrivate Members' Business

February 3rd, 2012 / 1:50 p.m.
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NDP

Matthew Dubé NDP Chambly—Borduas, QC

Madam Speaker, it is an honour for me to speak to bill C-278, which was introduced by the member for Halifax West, for the same reasons mentioned by the member for Kingston and the Islands.

I was not very familiar with this issue. In preparing to address the House, I realized that I did not know very much about epilepsy. Other members may also lack awareness, as I did. This proves that this bill and a day to raise awareness are important.

March 26, the day proposed to this House for raising public awareness, would be called Purple Day. We often hear criticism of awareness campaigns. Some supporters say that raising awareness does not solve the problem and is merely a symbolic gesture that could seem meaningless. I would argue otherwise and stress the importance of raising awareness. That is why we support this bill.

I said at the outset that there is a lack of understanding of illnesses such as epilepsy. This proves that it is important to raise awareness. This illness is not well understood and is also unpredictable. It is the unpredictability of the seizures that makes it so difficult for people to understand this illness. The unpredictable nature of epilepsy also makes it hard for caregivers, for example. I will come back to this point a little later.

I would like to start with a very simple suggestion. The NDP members will make this suggestion in committee. I am talking about very minor changes that are backed by the organization Épilepsie Montréal métropolitain. These are changes to the French version that will improve the French. We would like to substitute “Journée lavande” for “Journée pourpre”. Thus, “couleur pourpre” would become “couleur lavande”. In addition, the term “condition” would be used instead of “maladie” in describing epilepsy in order to better represent the situation of people who suffer from epilepsy. As I mentioned, these changes are supported by Épilepsie Montréal métropolitain, more specifically Aurore Therrien, the executive director of this organization.

It seems obvious to me that the epilepsy community and the various agencies that work in this field support this bill. I am thinking about the director of the epilepsy clinic and epilepsy research group at the Sainte-Justine Hospital, Lionel Carmant. He fully supports Purple Day and he does not see anything else wrong with the bill. He thinks there are many other opportunities. He adds that the bill should receive media coverage and that we should address the discrimination that people with epilepsy suffer at work and in many other areas of society.

I think this shows once again the importance of awareness and the impact it can have in society. Even though this is a symbolic gesture, it launches very important work that can result in major progress and breakthroughs.

I think all parties in the House support bills on work toward possible medical breakthroughs. I think we all consider matters of health to be important. These are non-partisan issues. Here we are looking not only at raising awareness, but also at medical initiatives that could result in treatments. I am no expert, but based on what I have learned in the past few days, this illness is not properly understood according to current data. For example, there are surgeries available, but very few people with this illness undergo surgery, even though in many cases it would improve matters.

The same is true of the various medications available. That is a more general and very important issue that MPs have tried to grapple with recently.

Let us talk about medication shortages and availability. Epilepsy medications are less readily available because companies make relatively little money on them. That makes them harder to come by. This situation has made people more aware of this problem, and they want solutions.

There is no doubt that the House would be willing to consider the problem of medication availability. If society were aware of this problem, that would help us deal with the issue. Members of the House, including parliamentary secretaries, ministers and committee members, could keep working on this issue. That is another important reason to support this bill.

With respect to raising awareness, consider family caregivers. I had a very touching, very interesting conversation that was very difficult for me. My colleagues will understand why. While I was at a grocery store in my riding over the holidays, I ran into a family friend who lives in my riding. His wife, a family friend, passed away in September. She had a malignant brain tumour. During the final months of her life, the family had a very hard time dealing with the situation. Their experience is relevant to this discussion because we are talking about the problems that people with neurological diseases face. Of course, the severity of the disease varies from one person to the next—cancer is not the same thing as epilepsy, but it does affect neurological functions, which can be very difficult for loved ones. People with cancer and those with epilepsy have somewhat similar experiences.

Out of respect for this man, who is one of my constituents and also a friend and a friend of my family, I will not name him. During our conversation, he spoke at length about the importance of family caregivers. He talked about how much a bill like this could have helped not only his wife, but also him and his family, who made sacrifices in terms of their jobs and the time they spent trying to create a positive environment for their loved one. In this case, they were trying to make the most of her final days. In my opinion, it is just as relevant in non-terminal cases, as with epilepsy for instance, to create an environment in which the person can function normally and feel less stigmatized, which is one of the consequences of living with an illness that not everyone understands. In such cases, awareness is very important and can be a first step towards financing and understanding family caregivers, who are a very important part of health care.

Family caregivers and the resources available to them are at the crux of the matter. People often lack resources and are misunderstood. Medication can help people live day to day, support them at work and enhance their emotional or social well-being, but it starts with public awareness. I cannot emphasize this enough. It is an important gesture that may seem symbolic from the outside, but it is a first step in the right direction for our society and all Canadians, in order to improve the living conditions of people who are living with a very difficult illness. I commend them and congratulate them because, from what I have read over the past few days, life is not easy for them. They are working very hard to get legislation like this passed.