Official Hansard
Mr. Speaker, it is a pleasure for me to rise and acknowledge a very important piece of legislation. During private members' hour, we are afforded the opportunity to prioritize issues that are important to individual members of Parliament. I know my colleague and friend from Scarborough—Woburn has identified this and is working collaboratively with the Senate not only to raise the profile of an important issue, but also to see action taken. I commend and compliment him for doing so. I understand that we have the president of the Sickle Cell Disease Association of Canada on Parliament Hill. At times, I am sure it can be a very lonely job, so I appreciate the advocacy that is absolutely essential to ensure that governments at whatever level, whether it is the national level or the provincial level, move forward on issues such as this. When we think of rare diseases, there is always a need to have those advocates, because there is never enough attention given to those issues. I have always found that the strongest and best advocate for someone who has a rare disease, such as sickle cell disease, is actually a parent. The sacrifices that parents and family members make in order to be there in a very real and tangible way for another family member, a spouse or someone who is significant in their life is absolutely critical. The support that individual needs is essential, because one can only imagine the pain, the agony and, at times, the feeling of helplessness, looking for answers and wondering why the government is not doing enough to help. I approach this in a capacity of compassion from the days, many years ago, when I was the health critic in the Province of Manitoba. I know the challenges that are faced in relation to rare diseases. My daughter, who happens to be an MLA, often has the opportunity to deal with this issue. Where I differ somewhat from the member of the Conservative Party is that I honestly believe there are opportunities for the federal government to play a stronger role. Whether we are in Newfoundland and Labrador, my home province of Manitoba or any other jurisdiction, we would like to think there is a basic standard of health care delivery that runs through for the public. People can look to the Canada Health Act as something that is there to provide a sense of comfort. For the most part, it does. There is one major area that the government needs to improve upon, and that is dealing with rare diseases. Sickle cell disease is one of those. Through my friend, the member for Scarborough—Woburn, who has educated me on the issue to a certain degree, I understand that the number of people affected is somewhere in the neighbourhood of 5,000 to 7,000, but we really do not know the actual number. That, in itself, says something. That is, in all likelihood, a best guess. How accurate is it? Based on a bit of the debate that I have been listening to, I suspect that there is room for a great deal of improvement. I am encouraged, based on what I am hearing, that we will see the legislation ultimately pass and get to the committee stage. Many questions will no doubt will be posed. My colleague from Manitoba made reference to the cost factor, but when we think of the cost factor, we also have to think in terms of the cost of not taking action, because in many ways the disease is debilitating. It is a disease that ultimately cuts a life short, and it causes all sorts of other issues, from missing work to an individual's having to live through the pain and discomfort. There are also the indirect costs for individuals who are living with someone with this disease, and the impact that has on them. These costs also need to be taken into consideration. Through technology and advancement, are there ways, if we invest at the front end, that the long-term costs would be that much less? When the bill does go to committee, I would strongly encourage members, when they deal with the costs, to also deal with the costs of not taking action. In factoring in the costs of not taking action, we also have to factor in the individual. I would like to think that Canada is a very compassionate, caring society. We have a health care system. We want people, as much as possible, to have good-quality health care. Where it is possible, we want to deliver on the rare disease file. The federal government works with provinces on health care. It has a responsibility. It is a shared jurisdiction. The provinces, generally speaking, administer health care services, consider drugs and medications, and put them on their list, whereas Health Canada will deem them to be safe, if I can put it that way. At the end of the day, Ottawa has the Canada Health Act and provides a great deal of money in support of our health care system. We also established a fund that goes into the hundreds of millions of dollars, which is there to encourage provincial jurisdictions to acquire the types of medications, where they can, that would help deal with this disease. This is something that, even with the changes taking place in terms of the national budget, we have prioritized, because the Prime Minister has been very clear in making the statement that we want to preserve and expand, where we can, the health care services we provide to Canadians, if not directly then indirectly through provinces. That is why it is important we work collaboratively with provinces. The essence of the legislation before us is to establish a framework. I would suggest that, by establishing a framework, there would be opportunities for education within the medical profession, for looking at best practices across Canada and for incorporating those best practices, such as when we were talking about the issue of newborn testing and the diagnostics of newborn testing. I was encouraged that, while not all provinces have it, from what I understand, the vast majority do. Establishing and putting together a framework would consider the situation and the reality we are facing today. It means going to committee and inviting some of the stakeholders, such as one I pointed out, The Sickle Cell Disease Association of Canada, to consider submitting a written presentation, and possibly having in-person representation, so members of Parliament of all political stripes would have a much better understanding of the need for the federal government to play a role and of how a framework could actually be of benefit to all of Canada. I am glad the member brought the legislation forward. I look forward to its passage to committee.
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