Maxime Blanchette-Joncas, Rimouski—La Matapédia
“I support helping people with sickle cell disease, but this bill must not take power away from Quebec. Health care is Quebec's job, not Ottawa's. Quebec already screens babies and cares for patients. The federal government should give Quebec more health money and fund disease research instead of making national rules.”
“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.”
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.