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.