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Private Members' Business

National Framework on Sickle Cell Disease Act

2026-06-16 Sitting 137 Showing 1–7 of 7

A bill to create a national framework on sickle cell disease. MPs spent time acknowledging the bill's sponsors, discussing the disease's impacts, and sharing personal connections to the issue. A few MPs talked about unrelated local events in their ridings.

Official Hansard ↗

Maxime Blanchette-Joncas

Bloc Québécois 6:10 p.m.

“That's sad about the fire. Now about this bill. I'm filling time with kind words and saying nothing anyone could pin down later. Quebec already knows how to handle this. The feds should stay out of it. Ottawa shouldn't make new rules for the whole country. It should just give Quebec more health care money instead. Stop using patients to centralize everything.”

Official Hansard

Mr. Speaker, I first want to take a few moments to acknowledge a tragedy that deeply shook my region, the Lower St. Lawrence, yesterday morning. A major fire ravaged the Fibel et fils farm in Saint‑Éloi in Les Basques RCM. Our thoughts are with the Filion family and the entire team at Fibel et fils farm, who have been deeply affected by this tragedy. The farm lost its herd and the result of 45 years of hard work, which is a huge challenge for them. Beyond the material losses, the loss of these animals, which farmers care for and pay attention to every day, makes this situation even more heartbreaking. Behind every farm is a family, generations of work, expertise that is passed down from generation to generation and a vital contribution to our food security. Thankfully, no lives were lost. I also want to recognize the remarkable work of the firefighters who made it possible to protect the neighbouring buildings in spite of particularly difficult conditions. I want to express my solidarity with the Filion family, their loved ones and the entire agricultural community that was affected by this event. In the Lower St. Lawrence, when one of our own is struck by a tragedy, the entire community comes together. Our hearts go out to them at this particularly challenging time. Returning to the subject at hand, I would like to speak to Bill S-201, which aims to establish a national framework for sickle cell disease. I want to begin by saying that the Bloc Québécois recognizes that this is a serious condition and that it is important to raise awareness about this reality. We also acknowledge the remarkable work of those living with the condition, their caregivers, organizations and health care professionals who support them on a daily basis. I would also like to highlight the work of Senator Marie-Françoise Mégie, who has championed this bill with determination in order to raise awareness of a condition that is still all too often misunderstood by the general public. Sickle cell disease is a chronic genetic condition that affects red blood cells and can lead to severe pain, serious complications and a reduced life expectancy. In Canada, nearly 6,000 people are affected by this condition. It is of particular concern to people of African and Caribbean descent, but also certain populations in the Middle East, South-East Asia and South America. It is therefore entirely legitimate to seek to raise awareness, improve support for those affected and promote research. Moreover, as Professor Jude Mary Cénat, director of the Interdisciplinary Centre for Black Health, pointed out, Bill S-201 addresses decades-long neglect of a disease that remains far too little understood. That said, the Bloc Québécois believes that the government must respect the division of powers when addressing this issue. Health care falls exclusively under the jurisdiction of Quebec. Several aspects of the bill directly affect responsibilities that already belong to the Government of Quebec. These include the training of health care professionals, the establishment of national standards for diagnosis and treatment, and public awareness campaigns. Quebec has always been clear. It intends to remain the lead authority on public health policies within its territory. Quebec did not wait for Ottawa to take action. Quebec has already developed its own screening model, its own clinical tools, and its own network of expertise to support people with sickle cell disease. When a province already has the programs, expertise, and infrastructure necessary to meet the needs of its population, a national framework should recognize this reality rather than seek to standardize approaches. Sickle cell disease is already part of Quebec's neonatal blood screening program. An improved version of this program has been in place since April 2025 to enable faster and more accurate screening for all newborns. Quebec's ministry of health and social services has also developed several guides, best practices, and tools for health care professionals. Families also have access to educational resources to help them better understand the disease and the available treatments. Quebec already has recognized expertise and a set of measures tailored to its reality. That is why we are concerned that Bill S‑201 does not more fully recognize Quebec's unique characteristics. We believe that the federal government should focus on areas that fall squarely within its jurisdiction, rather than trying to impose national standards in an area for which it has neither management responsibility nor accountability for the consequences. That does not mean that Ottawa has no responsibility, on the contrary. The problem is not a lack of national strategies. Rather, the problem is that Ottawa too often gets involved in areas that are outside its jurisdiction, while neglecting some of its own responsibilities. If Ottawa really wants to help improve care, it should start by adequately funding health care. The federal government was originally supposed to cover about 50% of health care costs. Today, its actual contribution is closer to 22%. The real problem is not a lack of national strategies, but rather a lack of funding. Before creating more national frameworks, Ottawa should start by meeting its financial commitments to Quebec. Quebec does not need a new federal national framework. What it needs is the federal government to respect its jurisdiction, increase health transfers and do its part. The federal government already funds research through the Canadian Institutes of Health Research. If it wants to make a difference, then it should make sure that sickle cell research is supported. Several stakeholders have pointed out that this disease has long received less attention and funding than other comparable genetic diseases. The Canadian Institutes of Health Research already has the tools it needs to support researchers, promote scientific breakthroughs and improve treatments for patients. That is where the federal government should focus its efforts rather than trying to intervene in the organization of Quebec's health network. As for the data collection mechanisms set out in the bill, they will have to comply with Quebec's areas of jurisdiction and applicable privacy rules. The federal government should also look at its own programs to better meet the needs of people with sickle cell disease. I am thinking in particular of tax credits for caregivers and disability benefits. Some serious forms of the disease lead to significant limitations, and it is entirely reasonable to ensure that people who are affected can fully benefit from existing federal programs. We also believe that the federal government needs to be realistic when it comes to public drug plans. They fall under Quebec's areas of jurisdiction, and Quebec already has its own plan. It is therefore up to Quebec to determine which drugs and treatments it covers. Once again, Ottawa should first ensure that its own programs adequately meet the needs of the people affected rather than trying to intervene in areas outside its jurisdiction. Ultimately, the question is not whether we should support people with sickle cell disease. Obviously the answer to that is “yes”. The real question is how to do it effectively. For the Bloc Québécois, the answer is simple. The government needs to fully respect Quebec's powers, increase health transfers and shoulder the responsibilities that truly fall to Ottawa. Quebec did not wait around for this bill in order to take action. It already screens for the disease, supports families, backs health care professionals and contributes to the advancement of scientific knowledge. Therefore, we hope that any measure arising from this national framework will be implemented with Quebec's consent and in full respect of its powers. Let us help patients. Let us support families. Let us promote research. However, let us not use patients' suffering as a pretext to further centralize health care decisions. It is in this spirit that we wish to see the bill amended so that it fully recognizes Quebec's responsibilities and the work it is already doing.

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Sonia Sidhu

Liberal 6:20 p.m.

“I want the government to spend more money to help people with sickle cell disease. More research, screening, treatments, and maybe even tax credits for them and their families. Lawyers and bureaucrats should write a national framework to make sure we do it the same way everywhere. That's the right approach because it will take more coordination and regulation to make all the health systems the same. Plus it builds on other big spending programs we already started.”

Official Hansard

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.

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Dan Mazier

Conservative 6:30 p.m.

“This bill will spend a lot of money and I don't know if it's worth it. It tells the government to study expensive things but doesn't say who will pay. The framework is really broad and has no clear responsibilities or enforcement. I want the committee to assign clear responsibilities and timelines. I'm worried the bill oversteps into provincial jurisdiction. I want the government to prove these expensive programs will actually help before they spend more of your money on them.”

Official Hansard

Mr. Speaker, I would like to speak today about Bill S-201, an act respecting a national framework on sickle cell disease. Sickle cell disease is a devastating inherited blood disorder. It causes chronic pain, organ damage, serious infections and a shortened life expectancy. Our best estimates suggest that 6,000 Canadians are living with sickle cell disease right now. I say “estimates” deliberately because Canada has no coordinated data to tell us the actual number. We cannot track outcomes or evaluate treatments at scale or measure whether what we are doing is actually working. Without the data, it is nearly impossible to plan health care services, allocate resources appropriately or understand the full impact this disease has on patients and families. The Conservatives are proud to stand up for Canadians living with sickle cell disease. We were proud to vote in favour of recognizing June 19 as National Sickle Cell Awareness Day. This bill would build on that commitment by including measures to support public awareness campaigns and increase blood donation. We have also committed to implementing a rare disease strategy to support treatment development, and we have fought to safely speed up drug approvals for treatments already approved by peer jurisdictions. Let me explain what the bill would do. Bill S-201 would require the Minister of Health to develop and table a national framework on sickle cell disease within one year. That framework must cover nine substantive areas. These are health care professionals' training, a national research network and patient registry, evidence-based national standards for diagnosis and treatment, universal neonatal screening, public awareness campaigns, promoting blood donations to ensure diversity in the blood supply, the analysis of the potential tax credit for patients and caregivers, the inclusion of sickle cell disease in existing disability benefits and an analysis of the inclusion of sickle cell treatments in public drug insurance plans. The government would be required to table a follow-up implementation report within three years. The bill would also require the minister to consult with relevant colleagues, the provinces and territories, patients, caregivers, the medical community and researchers. There are provisions in this legislation that warrant careful scrutiny at committee. Let me start with what may be the most straightforward and most urgent piece of this bill, which is neonatal screening. Early detection saves lives. When sickle cell disease is caught at birth, families and clinicians can begin managing the condition before the first crisis. When we do not detect sickle cell disease early, children can suffer devastating complications that could have been prevented, like strokes, infections and organ damage. As of August 2024, universal newborn screening is already implemented in every province and territory, except Newfoundland and Labrador and Nunavut. The gap is real, but it is narrow. Rather than designing a sweeping national mandate, the more effective approach would be to ask what specific barriers are preventing implementation. I am looking forward to seeking clarity on the scope and potential models for neonatal screening at committee. Let me turn to some concerns about provincial jurisdiction. Health care delivery is and must remain the primary responsibility of the provinces. The Conservatives believe any federal health framework must be developed in partnership with the provinces and should not be handed down as a federal directive. The bill requires consultation, and that is welcome, but consultation is not partnership. We have seen too many federal health initiatives that check the consultation box and then proceed, regardless of what the provinces said. This framework must be built with the provinces, not around them. The bill proposes setting what it calls “evidence-based national standards for the diagnosis and treatment of sickle cell disease”. On the surface, it sounds sensible, but the standards of care in this country are established by medical professional associations operating under provincial and territorial jurisdiction. Any attempt by the federal government to unilaterally define those standards without meaningful provincial engagement would be both constitutionally questionable and practically counterproductive. We have seen how to do this well. Bill C-442, the Lyme disease framework from the 41st Parliament in 2013, focused on establishing shared guidelines, promoting best practices and encouraging knowledge sharing, not dictating clinical standards from Ottawa. The framework for cancers linked to firefighting took a similar approach with recommendations, information sharing and recognition of occupational diseases. These models work precisely because they respect jurisdictional boundaries while still advancing national coordination. Bill S-201 should follow the same template. The Conservatives want to ensure that our health legislation properly reflects the advisory nature of federal clinical guidance and reduces the risk of jurisdictional intrusion. Conservatives are also concerned about the accountability measures of this bill, or the lack thereof. The framework would cover nine major action areas spread across multiple organizations, but it has no clear assignment of responsibility or an enforcement mechanism. A framework that is so broad and unenforceable is simply a list of aspirations. Canadians with sickle cell disease want results, not platitudes. It would be beneficial for the health committee to consider clear accountability mechanisms. These could include identifying who is responsible for each deliverable, what the timeline is and how Canadians will know whether the commitments are being met. I also want to raise a concern that does not get enough attention in these debates, which is the cost. This bill does not include fiscal appropriation, which is standard for a private member's bill. However, it directs the government to study programs that have the potential to carry costs. A national research network would need dedicated infrastructure, staff and long-term operational support. Universal neonatal screening would need provincial buy-in and funding commitments. Public awareness campaigns would need sustained investment to reach the communities most affected. Health professionals' training would need a curriculum, coordination across medical schools and resources to deliver it. An analysis of a potential tax credit for individuals with sickle cell disease and their caregivers would need rigorous actuarial work. Expanding disability benefits to include sickle cell disease would carry fiscal implications that must be modelled before any commitments are made. Each of these programs would have a large price tag associated with them. Canadians deserve to know what these costs would be before this framework is finalized, yet no cost estimate from the Parliamentary Budget Officer has accompanied this bill. I have written to the Parliamentary Budget Officer to request one, and hope this is conducted for the committee's consideration. Costs and structure are not the only things we need to ask questions about. We must also consider what treatment options are available to Canadians living with sickle cell disease. Gene therapies that were once in the realm of science fiction are now a reality. In late 2023, both the United Kingdom and the United States approved Casgevy, a groundbreaking gene therapy, and the U.S. went further in improving a second option, Lyfgenia, at the same time, so there are two options. Canada approved Casgevy nearly a full year later, and Lyfgenia is still not available to Canadian patients. Once Health Canada approves a treatment, the wait is not over. Canadians on public insurance plans face a wait, on average, of three years from the time a drug is approved elsewhere to the time they can actually access it. That is insane. That is roughly one year in Health Canada's approval process, followed by two more years of provincial coverage negotiations through the pan-Canadian Pharmaceutical Alliance. It is absolutely insane that people would have to wait three years while they are in pain, their organs are being damaged and other countries' patients are receiving treatment. The Conservatives have committed to fixing this. If the therapy has already cleared rigorous regulatory review in peer jurisdictions, we should not be making Canadian patients wait years to access the same medicine. We have proposed safely accelerating approval for treatments already approved by peer jurisdictions. To be clear, our approach to rare diseases is not simply about drugs. I guess my time is up.

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Hon. Kevin Lamoureux

Liberal 6:30 p.m.

“I don't think the government has done enough to help these people. I want to give people hope by talking about all the things we could do even though we don't know how to pay for this program yet. I want the committee to figure that out. I want the taxpayers to spend more money on this framework and program. I hope that it will improve the lives of 5,000 to 7,000 people. I want you to feel like you need this program and you should pay for it with your tax dollars.”

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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Tamara Kronis

Conservative 6:30 p.m.

“I want this bill to pass so the government can claim it is doing something good, but I don't want to be blamed for the money it will cost or the way it will step on provincial toes. If the bill becomes law and doesn't work, I want to say that I asked for more study and changes. I hope this bill makes our party look good even though this is not our idea and we are just piling on.”

Official Hansard

Mr. Speaker, I rise today to speak to Bill S‑201, the national framework on sickle cell disease act. The bill deals with a serious, painful and lifelong illness. Sickle cell disease is an inherited blood disorder that affects hemoglobin. It can cause chronic pain, severe infections, organ damage, stroke and shortened life expectancy. It affects roughly 6,000 Canadians. Bill S‑201 would require the Minister of Health to develop and table a national framework on sickle cell disease within one year. The framework would cover training for health care professionals, a national research network and registry, evidence-based national standards, universal neonatal screening, public awareness, blood donation promotion, analysis of a possible tax credit, inclusion in existing disability benefits, and an analysis of whether treatments should be included in public drug insurance plans. A follow-up implementation report would be required within three years. These are serious proposals, some of which are partially implemented or implemented in various provinces. They deserve careful study. Conservatives supported the recognition of June 19 as National Sickle Cell Awareness Day. We support better awareness, earlier diagnosis, improved screening, and stronger care for Canadians living with sickle cell disease. We support practical steps that help patients and families, especially when those steps are shaped by evidence and by the people most affected. At the same time, Parliament has a duty to get the details right. As we know, health care delivery is provincial. The provinces run hospitals, manage newborn screening and make many of the direct decisions that determine whether any patient, including those with sickle cell disease, receives care quickly, safely and close to home. A federal framework can be useful if it brings people together, improves data, shares best practices and supports better outcomes. However, it is useless and can even be very damaging if it produces yet another Ottawa document written far from the people who must deliver care on the ground, without taking their needs into account. That is the difference between a framework that helps patients and families and one that sits on the shelf and gathers dust or, worse, is used as an excuse not to act. When the bill goes to committee, Conservatives will seek to ensure that the structural framework discussed in it results in a strategy that would be developed in genuine and respectful partnership with the provinces and territories. Patients deserve the benefit of better coordination. If the federal government uses its convening power well and with intent, better coordination can yield better outcomes. Families need real answers, not announcements. The same is true for cost. Bill S‑201 would not include a fiscal appropriation, but the framework points to initiatives that could carry major downstream costs. A national research network, a patient registry, public awareness campaigns, professional training, expanded screening, drug coverage analysis, disability benefit inclusion and a possible tax credit all raise financial questions. Compassion requires honesty. Before this framework is finalized, Parliament should require a Parliamentary Budget Officer cost estimate. If the government is asking Canadians to support a national framework, it should be clear about the costs, timelines, responsibilities and expected results. That is not opposition to the bill. It is respect for the patients who are counting on it. The bill would also connect with areas where Conservatives have already put forward practical policy. We have supported making the caregiver tax credit refundable. We have called for the disability tax credit to be streamlined and simplified, including automatic eligibility for related programs where appropriate. We have supported safer, faster access to drugs already approved by trusted peer jurisdictions, better pediatric drug data, and a rare disease strategy that supports treatment development. Those ideas matter here. Patients and caregivers need systems that are simple, fair and practical. They do not need more paperwork, more overlapping programs or federal announcements that create confusion among departments, provinces and providers. They need care that works. Bill S-201 raises this broader question, because it would not be the only bill of its kind. In Parliament, members and senators have brought forward several health-related bills on rare disease access, forced and coerced sterilization, heart failure, fetal alcohol spectrum disorder, food allergies, women's health, brain injuries, ADHD, medical assistance in dying, natural health products, living organ donors, supervised consumption sites, and mental health. Each of these bills speaks to a real concern and has its own patients, families, advocates, experts and evidence. Some deal with disease-specific frameworks. Some deal with treatment access. Some deal with criminal law protections. Some deal with long-neglected gaps in the system. Taken together, what these bills reveal is something the Liberal government should not be proud of: Canada's health care file is being patched, one private member's bill at a time. Private members' bills do have an important role. They can raise issues government has missed, bring neglected voices to Parliament or force attention where attention is overdue, but in this quantity, they show that they are becoming a substitute for a competent government that actually cares about the health of Canadians. A well-run health file would not need Parliament to keep discovering one gap after another through separate private members' bills. It would not need one bill for one disease, another for another treatment pathway, another for one group of patients and another for one failure that should have been addressed years ago. The federal government has a Minister of Health, departments, agencies, regulators, health transfers, data systems and provincial-federal tables. It has the tools to lead while respecting provincial jurisdiction, yet again and again, patients and families are left to organize, to advocate and to wait until someone brings forward a bill. Canadians deserve better than fragmented attention on the health file. They deserve a health care approach that identifies gaps before families have to plead for help. They deserve better data, faster diagnosis, clearer accountability, responsible spending and practical support for provinces and territories. In short, they deserve federal leadership that knows the difference between coordination and interference. For Bill S-201, we will work with the government to move the bill forward in a constructive way. We will support better awareness of sickle cell disease, earlier diagnosis, better data, stronger research, improved training for health care professionals and a more diverse blood supply. We would listen to patients, caregivers, clinicians, researchers, community organizations and provinces and territories when they come to committee, but we would also insist on amendments that would make the bill clearer and more useful. The framework should be developed in partnership with provinces and territories. It should respect jurisdiction, avoid duplicating the existing national strategy for drugs and rare diseases, use accurate language around guidelines and best practices, include cost transparency and, most of all, be judged by whether it improves care. People living with sickle cell disease do not need Parliament to pass bills that feel good but change little. This debate must result in more than just another report for the Ottawa shelves. Canadians deserve better, which is what Conservatives will continue to relentlessly fight for in the House.

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Michael Coteau

Liberal 7:00 p.m.

“I want this bill to pass. We should send it to committee. It's a chance to improve the system and help sick people. I'm telling a sad story to make you support my bill.”

Official Hansard

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.

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Hon. Kevin Lamoureux

Liberal 7:05 p.m.

“I want to finish work early and leave for the day.”

What they said. What they meant.

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