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.