Statements & Speeches

Speech on Bill C-278, an Act Respecting a Day to Increase Public Awareness About Epilepsy

April 26, 2012

Honourable senators, I am pleased to speak to Bill C-278, concerned with the promotion of public awareness about epilepsy. This bill was introduced in the other place by the member for Halifax West and in the Senate by the Honourable Senator Mercer. I would like to thank them both for bringing it forward.

The speed with which this bill has progressed in the other place and obtained unanimous support throughout is a testament to its importance. It calls on the federal government to officially establish a day every year on which Canadians can show their support for people living with epilepsy. This day for epilepsy awareness, Purple Day, will fall on March 26 of each year.

To begin my remarks today, I would like to recount the history of this bill and describe the origins of Purple Day as we know it.

The inspiration for Purple Day came from the personal experiences of a young Canadian named Cassidy Megan. Cassidy lives in Halifax, Nova Scotia. She was very young when she had her first epilepsy episode, which would be a frightening experience for anyone. Dealing with her epilepsy led Cassidy to ask questions about the struggles she faced and how they could be better addressed. This experience motivated her to create the idea of Purple Day in 2008, with the goal of getting people to talk about epilepsy.

For Cassidy and many others, it is an effort to dispel myths and to inform those with epilepsy that they are not alone. This turned into an initiative to launch Purple Day internationally so that everyone would better understand the challenges of living with this disorder. Since the beginning of this initiative, Cassidy’s story has had a remarkable impact. Her efforts to have this day established should be applauded.

Cassidy and all Canadians living with epilepsy deserve our support. As parliamentarians, we can set an example for the rest of the world to follow. This year, Purple Day events and other awareness-raising activities were promoted on a national and international scale. Schools, businesses, celebrities and organizations helped recognize the day through events and activities worldwide. In Canada, members of Parliament wore purple ribbons to show their support.

This bill will lend further support to these events by truly making Purple Day official. On this day, Canadians will be encouraged to wear purple to show their support for people living with epilepsy and draw public attention to the cause. Purple Day coincides with the time of year when spring is just under way and a sense of hope and renewal is in the air. Fittingly, the colour purple is associated with lavender, a flower which is internationally recognized as a symbol for epilepsy. Lavender represents feelings of isolation and reminds us of the solitude and stigma many people affected by epilepsy and seizure disorders often experience.

By establishing Purple Day, Bill C-278 gives epilepsy a public face. It helps us, as a society, to better understand this disorder and its impact on the lives of Canadians. Therefore, in the spirit of awareness and understanding, I would like to take some time to speak about epilepsy itself.

Honourable senators, epilepsy is a common and diverse set of chronic neurological disorders characterized by seizures. Epilepsy affects more than 50 million worldwide. In Canada, epilepsy is far more common than most of us realize, affecting about 0.6 per cent of the population, with more than 15,000 people diagnosed each year. Currently, about 300,000 Canadians live with epilepsy.

In 50 to 60 per cent of cases, the cause of epilepsy is unknown. In the remainder, the most common causes are malformations during brain development, a head injury that causes scarring to the brain tissue, high fever and prolonged convulsions during early childhood, trauma at birth, a stroke or tumour. Epilepsy can occur at any age. However, 30 per cent of all new cases every year are in children. For about half of those diagnosed with epilepsy as children, their seizures will simply disappear over time. It is also important to note that the number of new cases per year is higher in people over the age of 65.

The word “epilepsy” is derived from the Greek word meaning “a condition of being overcome, seized or attacked.” Epilepsy is characterized by sudden, brief, recurring seizures that range from mild to severe and which may cause loss of consciousness. These seizures are brief disturbances in the normal electrical functions of the brain.

There are social and personal challenges associated with epilepsy. These include physical hazards related to unpredictable seizures, social exclusion and other forms of stigma. Social stigma may also affect a person’s decision to report seizures or to seek treatment, and because of this, the number of people affected with epilepsy may even be higher than reported.

We know that there is no cure for epilepsy. However, there are medications and other treatments, including surgical intervention, that can help manage seizures. Successfully managing these seizures can have a significant impact on quality of life, including participation in community, school, employment and leisure activities. Treatment support systems are also critical. Many national and provincial organizations provide information and support for Canadians living with epilepsy, their families and their caregivers.

With increased awareness, we can improve the lives of Canadians living with epilepsy. Raising awareness about this disorder is an important component in confronting its challenges. I am pleased to note that there is considerable momentum on this front. The Epilepsy Association of Nova Scotia joined the Purple Day campaign in 2008, and since then, support has been growing. In fact, all initiatives we are seeing are in line with global action on this issue.

For instance, the Canadian Epilepsy Association is now working to have Purple Day endorsed by the World Health Organization and the United Nations. Last year, the Minister of Health recognized March as National Epilepsy Month. Communities across the country are also taking action. They are raising awareness, not only about the disorder, but about preventing injuries that can cause epilepsy. These gestures are important steps towards raising awareness and improving the quality of life for Canadians living with epilepsy.

Purple Day encourages people to talk about epilepsy and to understand the challenges faced by people living with this disorder. By supporting this bill and by officially recognizing Purple Day, we help to further this understanding.

Honourable senators, Bill C-278 builds on a number of federal initiatives in Canada. Research is providing hope and helping us to better understand this disorder and its treatments. Neurological Health Charities Canada is a coalition of 25 organizations supporting education and research related to brain health. In partnership with the charities, the Government of Canada has invested $15 million over four years in the National Population Study of Neurological Conditions. This partnership has undertaken important work to help us best understand the needs of those living with neurological diseases and disorders, including epilepsy.

Among the coalition’s member organizations is the Canadian Epilepsy Alliance. This alliance is a Canada-wide network of community organizations that promote independence and quality of life for people with epilepsy and their families. In partnership with the federal government, these charities are sharing experiences about the impact of neurological diseases and disorders so we can begin to understand, for example, common risk factors.

The National Population Health Study is actually composed of a suite of separate studies. The information obtained will help fill knowledge gaps on disorders such as epilepsy and will help us better understand how these disorders impact everyday experience. This National Population Health Study also includes information about how neurological disorders like epilepsy impact Canadians in their homes. This focus on daily living will help us identify the needs of families and caregivers.

Teams of researchers across the country are working together to conduct these studies. We know that research partnerships like this one have the potential to address real challenges and inform future decisions and preventive actions while providing comprehensive information.

In addition, the Canadian Institutes of Health Research, CIHR, is also working to fill knowledge gaps regarding epilepsy. Through CIHR, the Government of Canada has invested more than $46 million in epilepsy research since 2006. In 2009-10 alone, spending on epilepsy research was $7.8 million.

CIHR also supports a range of partners in promoting the development of innovative research at leading post-secondary institutions in Canada. For example, they are supporting McGill University’s Montreal Neurological Institute and Hospital in its research examining the link between brain disorders and epilepsy. It was the founder of the Montreal Neurological Institute, MNI, Dr. Wilder Penfield, who in the 1950s developed a surgical treatment for epilepsy known as “the Montreal procedure” that is now a worldwide standard. This procedure and all the surrounding techniques in epilepsy surgery were later perfected at the MNI by Doctors William Feindel and André Olivier, among others.

I worked at the Montreal Neurological Institute as a research fellow for many years in my previous professional life. It was at the MNI that I discovered first-hand the challenges that many chronic neurological diseases and disorders such as epilepsy present in the daily living experience, as well as the burdens placed on families and caregivers. It was there that I first saw the truly remarkable epilepsy surgery that would provide so much hope for those living with epilepsy. It was also there some years ago where I developed one of my first research projects to evaluate psychosocial outcomes, scientifically; in this case, surgical intervention for seizures.

In addition to the research being done at McGill University’s Montreal Neurological Institute, CIHR is also supporting other important work that examines the role of genes in epilepsy at the University of Toronto’s Centre for Research in Neurodegenerative Diseases. Both these research initiatives at McGill and the University of Toronto aim to improve diagnosis and to further the development of better treatments.

In June 2011, CIHR provided funding for the Brain Connectivity Workshop in Montreal. This workshop brought together leading international experts on brain development, epilepsy and neuroscience to exchange knowledge and contribute to a shared understanding of disorders such as epilepsy.

Honourable senators, partnerships and initiatives such as these will strengthen Canadian research in neurology. Strong research will make valuable inroads toward a better understanding of epilepsy, its causes and possible interventions to improve the quality of life of those living with epilepsy. Working hand in hand with all our partners, the Government of Canada is already raising awareness while contributing to research.

I would like to focus on one more topic of great importance in this discussion: the role of prevention in injury and safety, an area where the federal government has chosen to place an increased emphasis. The federal government and its partners know that unintentional injuries are, in fact, the leading cause of death for children and youth. Many head injuries that in severe cases could result in seizures and epilepsy arise from sport and recreation activities. There is much we can do to reduce these risks.

The Government of Canada has developed an initiative called “Active and Safe” to address injuries among children and youth. This is an important investment in prevention. Through it, the government has provided $5 million to enable community-level action on sports and recreation safety awareness. This funding will support activities to prevent concussions, drowning and severe fractures.

Honourable senators, I believe the initiatives and support I have described are steps in the right direction. However, we still have much to learn about neurological diseases and disorders like epilepsy. The Government of Canada will continue to work with partners to build understanding and raise awareness. Many organizations and volunteers are working to improve the quality of life for those living with epilepsy and their families right across the country.

Yet we all have a role to play. Now, I hope that every one of us here in this chamber will support this bill.

In closing, I would like to repeat the words of Cassidy Megan about the importance of Purple Day:

I started Purple Day because when I first found out that I had epilepsy, I was afraid and embarrassed of what other people would think. I also thought I was the only kid in the world with epilepsy. I wanted to have one day where everyone in the world could show support for people with epilepsy and teach people about it. Educating people about epilepsy is so important because people need to know what to do if they see someone having a seizure. 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. Since I started Purple Day, I feel special in a way, because I am helping people around the world. I don’t feel alone, scared or embarrassed anymore.

Honourable senators, let us give a clear sign of our support to Cassidy Megan and those living with epilepsy by unanimously supporting Bill C-278 to establish March 26 as Purple Day.