“I support this bill. It creates a national plan to help Canadians with sickle cell disease and their caregivers. It will improve research, newborn screening, training for doctors, and access to treatments.”

“Mr. Speaker, I would first like to thank my colleague from Scarborough—Woburn for sponsoring this important bill, alongside the work of former senator Marie-Françoise Mégie and Senator Tony Ince in the Senate. Their leadership has helped bring national attention to an issue that matters deeply to many Canadians: how we better support people living with sickle cell disease, their families and their caregivers. It is important for me to rise in the House today to speak in support of Bill S-201, an act respecting a national framework on sickle cell disease. Sickle cell disease is one of the most common genetic conditions in the world. In Canada, it affects an estimated 5,000 people. For those living with the disease, the impact can be serious and lifelong. It can mean repeated hospital visits, chronic pain, blood transfusions, complex treatments and ongoing challenges for families and caregivers. That is why the legislation is so important. Bill S-201 would develop a national framework to support Canadians living with sickle cell disease. It would also require Health Canada to consult broadly, including with provinces and territories, health care professionals, researchers, indigenous people, patient groups, community organizations, families and caregivers. This is the right approach. Health care is delivered across jurisdictions, and improving support for people living with sickle cell disease requires coordination, evidence, awareness and collaboration. I know the Canadian Peace and Unity Organization is also doing sessions to raise awareness. Many other organizations are working so hard. The bill would help advance that work. The national framework proposed in Bill S-201 would look at several important areas. It would support better health professional training, help establish national research networks and patient registries, encourage more consistent diagnostic and treatment pathways and support expanded newborn screening. These are practical measures that can make a real difference. A national registry, for example, could help us better understand how many Canadians are living with sickle cell disease, what their needs are and where support could be improved. Research networks could help strengthen evidence, support innovation and connect experts across the country. Standardized diagnostic and treatment pathways could help ensure that patients receive timely and appropriate care no matter where they live. Expanded newborn screening could support earlier diagnosis, earlier intervention and better long-term outcomes. Bill S-201 would also build on important work that is already under way. Our government launched the national strategy for drugs for rare diseases to improve access to effective drugs for rare diseases and make them more affordable for patients across Canada. The strategy focuses on supporting patient outcomes, investing in innovation, seeking national consistency and collecting and using evidence. As part of this work, the federal government has signed bilateral funding agreements with all 13 provinces and territories. These agreements are helping improve coverage and access to selected new drugs for rare diseases, other new and existing drugs, screening and diagnostic services and better data collection. This is an important step for Canadians living with rare diseases, including those living with sickle cell disease. The strategy is also supporting work with important research partners, including the Canadian Institutes of Health Research, Canada’s drug agency and the Canadian Institute for Health Information. Through this work, Canada is strengthening research on gene therapies, diagnostic tools, administrative data, monitoring, pediatric clinic trials and treatment networks. These investments matter because rare diseases often affect smaller patient populations, which can make evidence harder to collect and treatment harder to access. By improving how we collect data, support research and make decisions, we are helping build a more consistent and informed system for patients across the country. Bill S-201 would complement this work by focusing specifically on sickle cell disease. It would help ensure that the condition receives national attention through a coordinated framework, clear reporting requirements and continuing collaborations with the people and organizations who understand the disease best. The legislation would also build on previous federal action. In 2017, Parliament recognized June 19 as National Sickle Cell Awareness Day, helping bring greater national attention to this condition and the experiences of those affected by it. Bill S-201 would take that work further by moving from awareness toward a coordinated national framework for research, screening, treatment and support. Another important area is blood donation. Many people living with sickle cell disease require blood transfusions as part of their care. These transfusions are often most effective when the blood is closely matched. That is why efforts to increase the diversity of Canada’s blood donor base are so important. Canadian Blood Services has worked to increase awareness and encourage more donors from communities where matched blood is most needed. This work helps strengthen the blood supply and supports patients who depend on safe and closely matched blood. Bill S-201 would help keep these needs on the national agenda as part of a broader conversation about care, treatment, research and support. The bill would also recognize the real and ongoing costs that families can face. Living with sickle cell disease can affect work, school, family life and financial stability. Caregivers also carry significant responsibilities, including attending appointments, supporting treatments and helping loved ones manage the daily realities of the condition. That is why this legislation would call for an examination of possible supports, including a tax credit for people living with sickle cell disease and their caregivers. This is an important recognition that not only do health conditions affect medical care, but they also affect the everyday lives of patients and families. The bill would also ask the government to examine eligibility for disability benefits and the inclusion of essential sickle cell treatments in public drug plans. These are important conversations, and they deserve thoughtful study. I want to recognize the advocates, researchers, health care professionals and community organizations that have carried this work forward for many years. In particular, I want to acknowledge the Sickle Cell Awareness Group of Ontario and commend its advocacy. Its advocacy and community leadership have helped to support families, raise awareness and push this issue onto the national agenda. Bill S-201 would reflect many of the priorities that advocates have called for, including stronger research, better data, improved screening, health professional training and more consistent care for patients. It would also build on the work already under way through the national strategy for drugs for rare diseases, National Sickle Cell Awareness Day, investments in research and efforts to strengthen blood donor diversity. For families in Peel region and across the country who have long advocated for better awareness for caregivers who carry daily responsibilities and for Canadians living with sickle cell disease, this legislation represents meaningful progress. That is why I am proud to support it.”

“I support this bill to create a national plan for sickle cell disease. Rare diseases need more federal support. This plan will help doctors learn more, share the best medical care across provinces, and support families.”

“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.”

“I want the House to send this bill to committee. Sickle cell disease causes terrible pain and mostly affects people of colour, but our health care system has ignored it because of racism. We need a national plan to help these patients get proper care.”

“Mr. Speaker, I appreciate the opportunity to speak on behalf of the people of Scarborough—Woburn and on behalf of families and patients across this country, people who have suffered from sickle cell. It is a great honour to channel their voice here in this great chamber. We have heard a lot about paperwork. We have heard a lot about transparency. We have heard a lot about the mechanics of how government works. We have heard a lot about jurisdiction. I want to bring it back to the patient. I want to take a few moments to describe what a patient actually goes through when they are suffering from sickle cell. I am not sure if members know how it works, but a cell moves through a blood vessel. It goes into smaller parts of the blood vessel, and when it does not get through, it starts to build up and cause pain. When I talk to an actual patient of sickle cell and ask them to describe how that pain feels, they say it is a throbbing, sharp, stabbing pain. It almost feels like their bones are being broken. It feels like they are being crushed. This is how they describe it. Sometimes it is a few days to two-plus weeks of pain, where their bones feel like they are being crushed. That is, of course, in a very severe case. It takes sometimes weeks to recover. People are just exhausted, and it takes away several weeks of their lives, because of the pain. Historically, people who have suffered from sickle cell in this country and other countries around the world have been ignored. Sickle cell has been entangled with racism. There has been a lack of research applied to studying this particular disease and a lack of knowledge that doctors and people within the health care system have been provided. For people in Canada who have been waiting for services, when they go into an actual crisis, it is reported that they wait 25% longer, because the health care system cannot even identify, in many cases, what is wrong with them. This disease usually impacts people who have darker skin: people from the Middle East, people from the Caribbean, South Asians and people from Africa. As such, traditionally, it has been entangled with racism. The interesting thing is that there are actually solutions. There is a cure for sickle cell. Here we are today, in Canada, where there is a disease impacting several thousand people, that we know of, and there is a cure, yet there are people in our system, Canadians, who are living with this disease. It is very difficult for them to work and it is very difficult for them to live normal lives, and they go through pain that is just unbelievable. We have an opportunity here as members of Parliament, a unique opportunity. We have an opportunity to move this bill forward and send it to committee so we can discuss items like how we improve the system and how we look at the jurisdictional component. Of course the provinces and the territories are the ones that have jurisdiction over health care, but we have an opportunity as a House to provide leadership to help build a system right across this country to better the lives of so many Canadians. I want to thank every single member in the House for their words today. I do believe we are all on the same page, and that page is to make sure that we do everything we can as members of Parliament in the House to protect and better the lives of all Canadians.”

“I ask everyone to agree to end our work for the day early.”

“Mr. Speaker, I suspect if you were to canvass the House, you would find unanimous consent to call it 7:11 p.m. at this time.”