Bill S-201

National Framework on Sickle Cell Disease Act

An Act respecting a national framework on sickle cell disease

This enactment provides for the development of a national framework to support Canadians with sickle cell disease (also known as sickle cell anemia or drepanocytosis), their families and their caregivers.

National Framework on Sickle Cell Disease Act

[Michael Coteau, Liberal, Scarborough—Woburn, ON]

moved that Bill S-201, An Act respecting a national framework on sickle cell disease, be read the second time and referred to a committee.

Mr. Speaker, it is always an honour to rise in this House to speak on behalf of constituents of Scarborough—Woburn. Today I am also speaking on behalf of the many families and individuals who are impacted by sickle cell disease right across this country, and reflect on some of the pain and challenges that they go through.

I would like to thank the member for Ottawa Centre for seconding the second reading of this bill. I would also like to recognize an advocate, Biba Tinga, who is joining us here today. This legislation comes from the other place, from Senator Mégie and also Senator Ince. They brought this proposed piece of legislation forward to this House. It is an honour for me to be able to speak on behalf of the tens of thousands of community members across this country who support this. I also want to acknowledge the role of parliamentary Black caucus members from the Senate and the House of Commons who have been working on this issue for many years. I would like to thank both senators for their leadership and compassion.

If this bill is passed, it will make a significant, positive difference in the lives of thousands of Canadians across this country. For far too long, sickle cell disease has had a negative impact on too many Canadians. Bill S-201 represents a massive opportunity to improve the lives of Canadians today and in the future. This disease is life-threatening. It often has the ability to reduce someone's life by up to 30 years. There are 6,000 Canadians who are suffering from this disease today. It disproportionately impacts people of African and Caribbean descent. It also impacts people of Middle Eastern and South Asian descent and members of racialized communities.

Due to its genetic nature, the disease affects every single part of the body. A person with sickle cell disease is highly vulnerable to organ failure and abnormal lung function, as well as loss of vision. Sickle cell disease also causes extreme pain. In many instances, it requires long visits to the hospital. When a person is in a crisis, in an episode, the illness affects patients' daily lives. This severe pain requires very strong painkillers to mitigate the pain. Often those suffering from sickle cell are stigmatized and labelled as drug-seekers. Far too often, their pain is dismissed, and they are subject to unfair treatment, labelling and judgment.

Additionally, people with sickle cell disease do not suffer alone. Their families suffer. When there is an absence of adequate health care providers, the families take on the role as caregivers. Besides the emotional toll of watching their loved ones suffer, all of these factors put a high strain on caregiving family members to be in a constant state of readiness since a crisis can happen at any given moment.

Due to the nature of this disease, many patients and family members suffer from employment instability, and they find themselves carrying the weight on their shoulders alone. Alarmingly, sickle cell disease does not qualify for the appropriate benefits within our Canadian system, such as the disability tax credit. With many patients or their families navigating unemployment due to the illness, the cost grows quickly, both financially and psychologically.

This is very troubling, especially because people who suffer from sickle cell disease normally come from low-income neighbourhoods. Some 41% of those who suffer from sickle cell disease live in the lowest-income neighbourhoods in the country, amounting to roughly triple the rate of the general population. As such, many with sickle cell disease face barriers ranging from decreased educational opportunities, lack of financial stability due to the risk of work termination, issues with obtaining accommodation, lack of recognition of a disability and exclusion from many government programs.

This ends up causing an ongoing cycle that disproportionately impacts our society's most vulnerable communities. It is crucial that health care professionals be able to recognize the symptoms and respond accordingly. Unfortunately, too many frontline health care professionals lack the professional awareness and knowledge in identifying and treating the disease. Moreover, access to specialized health care remains heavily dependent on geography, with services fragmented right across the country.

These issues extend beyond hospitals because they are rooted in the system and institutional barriers that exist. This is specifically true in the case of blood donation requirements for the long-term treatment of sickle cell. We need more donors to meet blood demands. As the complexity of this illness increases, there is a need for donors of African and Caribbean descent to make those donations, as they are most likely compatible.

However, Canada permanently bans donations from individuals who have had malaria or who have recently visited countries where there are high cases of malaria, unlike countries like the United States, the United Kingdom and France, which instead impose temporary deferral programs. This disproportionately affects Canadians of African and Caribbean descent, the very communities that need these types of blood donations the most.

Now is the time for members of this House to support a national framework for sickle cell disease in this country. Bill S-201 proposes a comprehensive national framework to improve how Canada understands the diagnosis and treats sickle cell disease. At its core, the bill is about coordination rather than duplication. It is about consistency rather than patchwork. It calls for the federal government to work collaboratively with provinces and territories, health care providers, researchers, experts and community organizations to ensure that patients receive timely, evidence-based and compassionate care, no matter where they live.

In addition, the bill pushes for a national standard of care and universal newborn screening across the country, recognizing that early diagnosis, consistent treatment and equal access to care can significantly improve the outcomes and prevent avoidable complications. Bill S-201 also looks beyond the clinical setting. It recognizes the need for public awareness and anti-stigma campaigns to reduce misinformation, support families and encourage community participation in areas such as blood donation and peer support.

The bill highlights the importance of a more diversified blood supply, especially since many patients benefit from closely matched blood donations from people of African and Caribbean descent. It also addresses the financial realities of living with sickle cell disease by calling for stronger financial supports, better disability recognition and more equitable access to medication, so that treatment is not determined by postal code or one's ability to pay.

Ultimately, the urgency of this bill cannot be overstated. Sickle cell disease is a severe and life-altering condition, yet it has long been marginalized and systematically neglected, despite being one of the most common genetic diseases in the world. Bill S-201 is an important step toward correcting that neglect, and building a more fair, coordinated and humane system for patients and families across our country.

I would like to take a moment to recognize some of the many people who, for the last many decades, have been looking for ways to mitigate the impact of sickle cell disease and build better lives for Canadians.

I would like to thank those who have worked on this topic in this House. There have been tireless advocates like Kirsty Duncan, who unfortunately passed away earlier this year. She was a strong advocate for this issue. Her torch was carried by the Hon. Jane Cordy, who introduced Bill S-211, which called for the designation of June 19 as National Sickle Cell Awareness Day. There is also the member for Dartmouth—Cole Harbour. He was the one who sponsored that bill in this House. The bill was passed and it has been law now for almost a decade.

I want to thank some community members, but before I do that, I want to say that there have been literally hundreds, if not thousands, of people who have added to this effort over the last four decades, in Ontario and across the country. I wanted to take a moment to speak about a few people who have gone above and beyond.

Outside the government, there are folks like Biba Tinga, as I said, who is with us today. She is the president of the Sickle Cell Disease Association of Canada and one of the main drivers of the bill. I want to recognize her work. For more than a decade, she has been advocating for better treatment, more options for patients and families, and stronger public understanding of the disease. Her work is focused not just on the medical component. It is also focused on looking for ways to deal with the everyday realities that people go through, including stigma, employment disruption, mental health pressures and, of course, financial strain.

As members may know, I served as a member of the Ontario legislature for 10 years. While I was there, I met many advocates from the Ontario side who worked for decades to better the lives of Canadians suffering from sickle cell disease. I want to recognize the work of the Sickle Cell Awareness Group of Ontario, specifically Lanre Tunji-Ajayi, who has been raising awareness and has been advocating for better screening and care and a better public understanding of sickle cell disease within the community and within government.

I have to take a moment to recognize the extraordinary work of Nurse Dotty Nicholas. She has done incredible work in Ontario. She was awarded the Order of Ontario in 2010, and in 2006 she worked with the Ontario government, with then premier Dalton McGuinty, to put in place screening in Ontario that has been replicated right across the country.

I want to thank TAIBU Community Health Centre and its executive director, Liben, for the extraordinary work they are doing in this area. They are looking for ways to focus on prevention, restoration and advancement. Their work with the Sickle Cell Association of Ontario develops specialized community-based care and improved access to genetic counselling and primary care.

Finally, I want to take a moment to thank one of the pioneers of all this work, the late Lillie Johnson, who advocated for decades for the screening of newborns.

The bill is about fairness. It is about correcting the mistakes of the past. Systemic barriers were put in place, and people suffering from this very common genetic disease were not provided with the right types of tools necessary to advance themselves in a fair way in society when it came to employment, benefits and medication. I have met many people who suffer from sickle cell disease. I have known people growing up in my community who have passed away from the disease. In fact, people very close to me have suffered and passed away from this disease. It is a very devastating disease.

When people go into an episode, they can hardly move their body. The pain is so strong, and they do not know when it is going to hit. As Canadians, when talking about one of the most common rare diseases that exist in the world, we can do a better job, and the leadership is going to start in the House. If we pass the national framework for sickle cell disease, we would have the opportunity to build a better life for thousands of Canadians directly and indirectly through their networks, communities and families, and strengthen the ability for people to build themselves up, do exactly what they want to do, contribute as much as they can to build this beautiful country and make it an even better place.

One of the highlights of my political career has been to introduce and speak to this bill. I want to thank all members of the House for listening today and thank all those who will support it. I appreciate their time.

[The Deputy Speaker, Tom Kmiec]

This is a good time to remind members, since this is the first hour of debate on a private member's bill, that when the mover of the motion gets up to speak, they have 15 minutes, and then there is five minutes for questions and comments afterward.

Questions and comments, the hon. member for Edmonton Manning.

[Ziad Aboultaif, Conservative, Edmonton Manning, AB]

Mr. Speaker, I congratulate the hon. member for bringing this important bill to the House. I believe that the problem is going to grow even bigger in the next decades. Hundreds of thousands of Canadians may be faced with something like this.

I have a technical question. Canada already has a national strategy for drugs for rare diseases. Bill S-201, which we are discussing today, focuses only on a single rare disease. Does the hon. member believe that this framework would contradict the existing law we have in place?

[Michael Coteau, Liberal, Scarborough—Woburn, ON]

Mr. Speaker, obviously the member has done his homework, and I appreciate that. This is a disease that has often been neglected. My father tells me that back in Grenada, 40 or 50 years ago, they were using, and this is not a joke, leeches and blood sucking in order to try to figure out what was going on. The disease has had a short history in medicine when it comes to main medicine practices. We are at a stage right now where the scientific revolution that is taking place with so much change provides us with such an opportunity to actually focus on a disease that, even within the rare diseases that exist, traditionally has not been given the opportunity to be studied, researched and invested into. The bill would provide us with an opportunity to do much better and especially align it with the science and technology to improve the lives of so many Canadians, because the medicine is out there.

[Mario Simard, Bloc, Jonquière, QC]

Mr. Speaker, the Bloc Québécois fully understands the urgency of addressing the issue of sickle cell disease. This is a very noble gesture on the part of my colleague. However, as he probably knows, health care falls under the jurisdiction of Quebec and the provinces. A number of the points raised by the bill are already being addressed by Quebec's health care system.

It is true that there is value in raising awareness. However, does my colleague not agree that there are some unnecessary redundancies in certain parts of the bill that are already being addressed by the Quebec ministry of health?

[Michael Coteau, Liberal, Scarborough—Woburn, ON]

Mr. Speaker, I would like to thank the member for recognizing the seriousness of this disease. The fact is that some provinces and territories are doing great things and some are not doing as much as they possibly could. There is a huge opportunity to build a national network that would not only do the research, but collectively collect the data. As they say, if there is no data, there is no problem. We do not even know the statistics across the country. There has to be a national framework to bring all of that together, to build better educational programs and to share best practices.

This is never, ever about taking anything away from the provinces. It is about giving the provinces the ability to share and enhance what they are currently doing.

[Gary Anandasangaree, Liberal, Minister of Public Safety]

Mr. Speaker, I want to thank my colleague from Scarborough—Woburn for bringing forward this very important piece of legislation. In fact, in the fight against sickle cell disease, a lot of the work starts in Scarborough. There are some incredible heroes who have been doing the work, and there are so many individuals in our communities who are impacted by it.

I am just wondering if the member can reflect on the journey that people in Scarborough have faced, the response that the bill would give them and the confidence that the bill would give them in order to make sure that their lives are improved.

[Michael Coteau, Liberal, Scarborough—Woburn, ON]

Mr. Speaker, we had a recent town hall in Scarborough at Markham Road and the 401 at Global Kingdom Ministries. We held a community forum there, and we had many people, 100-plus people, come in from the region to talk about this. People told us stories about what they go through in their lives. My friend refers to them as warriors, folks who tell their personal stories. Members can imagine being a young person who has just finished university, 21 years old, at the top of their game, but they do not know when the next episode is going to come. This is about making sure that we put in place the right types of processes to allow people to reach their full potential, and that is good for Canada.

[Carol Anstey, Conservative, Long Range Mountains, NL]

Mr. Speaker, it is always an honour to rise in the House, and specifically today to speak to Bill S-201, an act respecting a national framework on sickle cell disease.

To begin, I want to acknowledge the important intent behind the legislation. Sickle cell disease is a serious, lifelong condition that affects approximately 6,000 Canadians and their families across this country. It is a painful, complex and often under-recognized illness. Better coordination and improved awareness within our health system are important.

For those Canadians affected, this disease has had a profound impact. Families face repeated hospital visits, chronic pain crises and uncertainty around access to consistent treatment and care. These are real challenges, and Canada currently has no coordinated data infrastructure for sickle cell disease. Therefore, we are not able to properly track outcomes, evaluate treatments at scale or ensure that best practices are shared effectively across the country. That gap is part of the reason conversations like this one are so important.

In Newfoundland and Labrador, while the prevalence may be lower than in larger urban centres, we are no strangers to the challenges of rare disease management. Patients in rural, remote and coastal communities often face additional barriers simply because of geography, whether that is access to specialists, access to diagnostic services or access to ongoing treatment support. In fact, after affordability, access to health care is the second-biggest concern that I hear about in my riding of Long Range Mountains. Many Canadians living in rural, remote and coastal areas experience these same challenges, often waiting extended periods of time to see specialists. Therefore, coordination can be very useful.

Bill S-201 proposes the development of a national framework that touches on a wide range of areas, from health care provider training to public awareness, neonatal screening, research networks and even the analysis of potential tax credits and changes to disability and drug coverage programs.

In principle, coordination and information sharing across jurisdictions can be beneficial. We should always be open to improving how provinces and territories learn from one another and how best practices can be shared. Canadians definitely benefit from governments working together.

Conservatives have supported efforts to raise awareness and improve outcomes for Canadians living with this disease. We supported the recognition of June 19 as National Sickle Cell Awareness Day and have consistently supported broader efforts to strengthen frameworks that improve health outcomes for Canadians. We also recognize the importance of advancing a rare disease strategy to support treatment development and of working with provinces to improve labour mobility through nationally recognized credentials for health care professionals. These are practical steps that could help strengthen care across the country, and especially in areas where barriers to access exist.

However, there are considerations that must be addressed with this legislation. We must be very careful about jurisdiction. Health care delivery is, and must remain, the responsibility of the provinces. Any national framework must respect that division of powers. If federal initiatives move too far in setting standards without clear collaboration, we risk creating friction with provincial systems that are already managing significant pressures.

In fact, this bill uses the term “standards” rather than “guidelines”, which differs from comparable federal health framework legislation. The choice of language is important. Clinical practice is determined by medical professionals and provincial systems, and any federal role should be clearly advisory in nature.

We have seen in previous framework legislation, including in areas such as Lyme disease and firefighter cancer frameworks, that the most effective federal role is often one of coordination and guidance rather than prescriptive direction. In this case, the bill would benefit from clearer language around what is intended as guidance and what is intended as a binding expectation to reflect reality.

Second, while this bill would not include a direct appropriation of funds, it points to areas that would carry cost implications. A national research network, expanded neonatal screening programs, public awareness campaigns, enhanced training and potential expansions to drug coverage and disability supports are all meaningful initiatives, but they do come with fiscal implications that have not been fully defined yet, so transparency on those costs is important. At present, there is no fiscal appropriation and no Parliamentary Budget Officer estimate. Before this is finalized, Parliament should have a clear understanding of what the measures would cost and how they would be implemented.

Third, there is a question of duplication. Canada already has a national strategy for drugs for rare diseases. We need to ensure that this framework complements that strategy rather than overlaps with it, so that there is no confusion over how support is delivered. When dealing with rare diseases, efficiency, coordination and clarity in policy design are essential. Families affected by sickle cell disease need streamlined support, not overlapping systems.

That said, I want to recognize that the objectives in this bill align with important policy goals we have supported in the past. For example, improving caregiver recognition and support is something Conservatives have long advocated for, including making caregiver benefits more accessible and more responsive to real-world needs. Likewise, streamlining access to disability supports and improving drug approval and treatment pathways for rare diseases are areas where there is room for constructive work.

We also recognize the importance of early diagnosis and awareness. Long wait times and limited access to health care professionals can create a higher risk for these Canadians. Therefore, neonatal screening, when done appropriately and in partnership with provinces and territories, we recognize, can make a meaningful difference in outcomes for patients with a rare disease like sickle cell, but again, the keyword is partnership.

The framework must be developed in collaboration with provinces and territories. Conservatives believe the federal government should work with provinces on national health objectives. It must be developed collaboratively with provinces and territories, with clinicians, with patient advocacy groups and with those who are directly affected by the disease. Without that collaboration, the most well-intentioned framework can fall short in implementation.

We also need clarity on accountability. The bill would distribute responsibilities across multiple departments. While coordination is important, Canadians also expect clear lines of responsibility so progress can be measured and reported in a meaningful way.

The appropriate next step is to send this bill to committee. In committee, there is an opportunity to strengthen the legislation, improve its language, ensure it respects provincial jurisdiction and address the fiscal unknowns that remain. It is also the place to hear from stakeholders, medical professionals and provincial partners to ensure that the framework is both practical and effective. We believe amendments should be considered to ensure that provincial collaboration is explicit; that terminology, such as “standards”, is clearly defined in line with advisory clinical practice; and that cost implications are fully examined before implementation proceeds.

These are not objections to the intent of the bill but recommendations to ensure that if the framework moves forward, it does so in a way that is responsible, collaborative, grounded in the realities of the health care system and the regions of the country, practical and respectful of jurisdiction.

Canadians living with this disease and their families would definitely benefit from better coordination, better awareness and better outcomes. The question is not whether we should act, but how we act, and how we do it in a sustainable and co-operative way. For that reason, we support sending the bill to committee, where it can be strengthened and improved to ensure that it delivers real results for Canadians while respecting the roles of provinces and the importance of fiscal transparency.

[Mario Simard, Bloc, Jonquière, QC]

Mr. Speaker, I am pleased to rise to speak to Bill S-201, an act respecting a national framework on sickle cell disease. This legislation establishes a national framework to support Canadians with sickle cell disease—also known as sickle cell anemia or drepanocytosis—their families and their caregivers. The initiative's primary aim is to raise awareness about this rare chronic disease, which predominantly affects individuals of African or Caribbean descent.

The Bloc Québécois acknowledges that sickle cell disease is a serious problem and that people living with it must be supported. However, some aspects of the strategy encroach on the jurisdictions of Quebec and the provinces. For example, Quebec has repeatedly let it be known that it wishes to retain control of public health awareness campaigns in its territory, yet the bill calls for federal awareness campaigns.

Furthermore, Quebec has already developed guidelines on this disease for its health professionals. These guidelines have been incorporated into sickle cell disease screening efforts as part of Quebec's neonatal blood testing program. Since Quebec and the provinces have authority over their health systems, it is inappropriate for the federal government to impose guidelines that affect their hospitals, for which it has no constitutional responsibility. We are dismayed that the bill fails to acknowledge Quebec's specific characteristics in the health field.

We would like to see the bill amended so that it reflects the constitutional reality and the division of powers. Constitutional concerns aside, we recognize that the bill's framework has the merit of drawing attention to a little-known disease. Looking more closely at the bill, we see a proposal for a nine-point national framework that would be developed by the Minister of Health in collaboration with provincial and territorial governments and all relevant stakeholders, such as caregivers, support persons, service providers, representatives of the medical and research communities and organizations. If we look more closely at these nine points, we see that there is a provision that includes measures to address the training, education and diagnostic and treatment tool needs of health care professionals relating to sickle cell disease. I must point out that this is not the federal government's role. Quebec's department of health and social services is already doing it.

Quebec already has various guidelines for health care professionals. For example, there is the neonatal blood screening guide, intended for perinatal nurses and midwives. There is also the Quebec neonatal blood screening program, which involves screening newborns' blood for diseases. These are just a few examples of what Quebec is already doing to respond to this disease. The Centre hospitalier universitaire de Québec-Université Laval even publishes a newsletter for health care professionals on the Quebec neonatal blood screening program.

The bill also provides for the establishment of evidence-based national standards for the diagnosis and treatment of sickle cell disease. Again, I must point out that Quebec already has programs, standards and practice guidelines in place.

Next, the bill includes measures to institute universal neonatal screening, postnatal diagnosis when necessary and the provision of results for affected individuals and organizations. Quebec's newborn screening program already screens for various diseases, including sickle cell disease. The program is available to all newborns in Quebec and, as of April 28, all newborns are automatically registered in the program. Screening is now done using a single blood sample taken 24 to 48 hours after birth. This change aims to detect diseases targeted by neonatal screening more quickly and accurately. Here again, we see that this measure in the bill is already in effect in Quebec.

The bill also provides for measures to support public awareness campaigns on sickle cell disease and blood donation. As everyone is probably aware and as I mentioned earlier, Quebec has repeatedly stated that it wants to retain control over public health policies and any associated public awareness efforts within its jurisdiction.

Quebec already publishes an online public information page on sickle cell anemia and its variants. It summarizes the symptoms, the treatments, the medical follow-up, available support groups and the tests that can be done on people interested in finding out whether they carry the problem gene.

In addition, Quebec already offers sickle cell disease awareness and information tools, including a family handbook that provides parents with a wealth of helpful information about the disease, such as available services, facts about the disease and its complications, information about prevention, medication and treatment, and a list of available resources and websites. The nine-point list in the bill also includes measures to promote and support blood donation by every segment of the population and the creation of a diverse blood supply that allows for safe transfusions.

I want to note that Héma-Québec is responsible for blood donations in Quebec, while Canadian Blood Services is responsible for that in the rest of Canada. Concerns have been raised about Black women being able to donate blood because their hemoglobin count is naturally lower than Héma-Québec's eligibility criterion. Héma-Québec conducted a study to determine whether taking iron supplements following a blood donation could help replace the iron lost and expand eligibility, which would help optimize the collective blood supply. We view this as more of a scientific issue than a political one. In this matter, we should trust the various experts.

Another aspect of the bill calls for an analysis of the introduction of a tax credit for people with sickle cell disease and their caregivers. Both Quebec and Canada offer tax credits for caregivers. The Bloc Québécois supports this proposal. If the federal government wishes to review the criteria in its tax credit to ensure that caregivers of people with a disabling form of sickle cell disease can benefit from a tax credit, we see no reason to oppose that.

The bill also provides for the inclusion of sickle cell disease in the eligibility criteria for existing disability benefits. Certain forms of the disease can be associated with severe limitations, so it is entirely appropriate for the federal government to review its programs to ensure that those who should be eligible actually are. Canada offers the disability tax credit as well as the Canada disability benefit. To qualify for the second benefit, a person must first qualify for the first one. To be eligible for the tax credit, a person must have a severe and prolonged impairment. This means that the person is unable to perform essential functions such as walking, dressing or feeding themselves, or that they can do so but it takes them three times as long as a person without the impairment. Furthermore, this limitation must be present all or substantially all of the time—at least 90% of the time—and be prolonged, meaning it must last more than a year.

The bill would also require an analysis of the potential inclusion of treatments essential to sickle cell disease care in public drug insurance plans. Once again, there is a bit of an issue in terms of the jurisdiction of Quebec and the provinces. Public drug insurance plans are a provincial matter. As a result, the federal government cannot impose conditions on provincial public insurance plans requiring them to include or not include certain services or drugs. However, as an employer with over 350,000 employees, it could overhaul its own private drug insurance plan so that its employees get this coverage. It would be smarter and more realistic for the bill to focus on what the federal government can do rather than promise impossible changes.

We support doing the right thing, and we understand the awareness aspect of the bill, but it is important to keep in mind that Quebec is already doing a lot of the things proposed in the bill and that this encroaches on Quebec's jurisdiction over health matters.

[Maggie Chi, Liberal, Parliamentary Secretary to the Minister of Health]

Mr. Speaker, I am pleased to rise today to express our government's support for Bill S-201, which seeks to establish a national framework to support Canadians with sickle cell disease. I want to express my sincere thanks to Senator Ince and Senator Mégie for their hard work in the Senate and for their advocacy. I want to also thank my dear friend, the hon. member for Scarborough—Woburn, for all his work in the House of Commons and his years of advocacy on this issue.

This is an important bill. It passed the Senate with unanimous support, and I hope we will do the same here in the House. Bill S-201 asks us to consider how a national framework could improve consistency, coordination and outcomes for Canadians living with sickle cell disease. The bill invites us to consider not only the individuals directly affected but also the families, caregivers and communities that share the burden of managing this complex condition.

I think it is important to talk about what sickle cell disease is, because it is not well-known, as the member mentioned. As with any rare disease, raising awareness is a key step in building broader understanding.

Sickle cell disease is a group of inherited blood disorders where red blood cells form an abnormal sickle shape. This can lead to reduced life expectancy and acute episodes of severe pain, commonly referred to as sickle cell crises. Current treatments include blood transfusions and medications aimed at reducing the frequency of pain crises. Stem cell transplants offer a potential cure but are limited by donor availability and significant medical risk. Emerging gene therapies show promise but come with extremely high costs.

Approximately 6,000 Canadians live with this condition, and there is a disproportionate impact on people of African, Caribbean, Middle Eastern and South Asian ancestry. Black Canadians in particular bear the brunt of sickle cell disease. Approximately one in 10 black Canadians carry the sickle cell gene mutation, yet because the disease is so poorly known and understood, Black patients frequently report discrimination in care, which leads to delayed diagnosis, increased reliance on emergency services and poor health outcomes. Limited clinical expertise, inconsistent guidelines and under-representation of Black health professionals further compound these challenges.

There has been some progress toward national training standards. Canadian Blood Services formally endorsed the sickle cell disease education program for health care professionals, a program developed by the Sickle Cell Awareness Group of Ontario. This represents a credible evidence-based framework already available to jurisdictions across the country. Established standards such as these could ensure greater consistency in care and strengthen our collective capacity to support Canadians living with sickle cell disease.

We also know that research can play an enormous role in furthering our understanding of this disease. That is why it is so exciting to hear that the Canadian Institutes of Health Research has supported significant research efforts in this field, including an investment of $13.8 million in new sickle cell-related research over the past decade. This represents a strong foundation on which to build that will create opportunities for Canadian researchers to continue advancing knowledge, improve diagnosis and treatment, and ultimately enhance the quality of life for individuals and the families affected by sickle cell disease.

Standardized care pathways are also important. We have started to see progress on this front as well. For example, the Canadian Hemoglobinopathy Association developed and published comprehensive clinical guidelines that outline best practices for both diagnosis and treatment.

I am pleased to report that Ontario has already integrated these guidelines into the Ontario health quality standard related to sickle cell disease. Hopefully more provinces and territories will follow its lead. Similarly, several provinces and territories have already established standards related to newborn screening notification, diagnostic processes and ongoing care for individuals living with sickle cell disease that integrate these national standards. These efforts demonstrate the important progress that is being made at the regional level.

The federal government has a role to play here as well, and we have been. Thanks to funding under the national strategy for drugs for rare diseases, Canada's Drug Agency is supporting greater consistency in newborn screening across the country, including a recommended pan-Canadian list of conditions to screen for newborns that is inclusive of sickle cell disease. Thanks to this approach at a national level, 11 provinces and territories now screen newborns for sickle cell disease, and this condition is under review or development in the remaining jurisdictions.

In fighting against sickle cell disease, however, nothing is more important than education, and Bill S-201 recognizes this. We need to raise public awareness of sickle cell disease, especially the critical importance of blood donation.

In 2017, the House unanimously adopted Bill S-211, which created National Sickle Cell Awareness Day on June 19. Thanks to this bill, which was sponsored by my colleague, the member for Dartmouth—Cole Harbour, there is a national spotlight on the experiences of individuals and families affected by sickle cell disease.

We also have Sickle Cell Awareness Month every September, during which Canadian Blood Services, the provinces and territories collaborate, increasing the understanding of the disease and encouraging blood donation, with a particular focus on engaging donors from African, Caribbean and Black communities. These efforts are critical because donation rates among under-represented communities remain low. Less than 1% of Canada's blood donor base is from Black individuals, despite the disproportionate impact of sickle cell disease among this population. By increasing awareness of the disease and of what we can do to treat it, we can work to meet the transfusion needs of many patients living with sickle cell disease.

Bill S-201 presents a framework that aims to address many of the challenges faced by Canadians living with sickle cell disease. The principles associated with each of the bill's nine elements underscore both the importance of the issue and the complexity of the solutions. I look forward to continuing the discussion and to hearing the perspective of all members of this House. I hope all of us will join together to pass this important bill.

[Ziad Aboultaif, Conservative, Edmonton Manning, AB]

Mr. Speaker, I am pleased to rise today to discuss Bill S-201, a national framework on sickle cell disease act. This is a disease that many have heard of, but few are aware of the details.

Sickle cell disease, also known as sickle cell anemia or drepanocytosis, is a group of red blood cell disorders. Those with the disease have abnormal hemoglobin. As members probably know, hemoglobin is the part of the red blood cells that carries vital oxygen throughout the human body. We know how important it is that tissues in the body receive a steady and life-sustaining supply of oxygen to work well. Hemoglobin takes the oxygen from the lungs to the parts of the body that need it. Normal cells are a disc shape, sort of like a doughnut. This shape allows the cells to be flexible. This flexibility and shape allow the cells to travel easily through blood vessels throughout the body.

Today, an estimated 6,000 Canadians have sickle cell disease. They are among the millions of sufferers worldwide. There are 300,000 babies born annually with sickle cell disease, and that number is expected to be 400,000 by 2050. Five per cent of the world's population carries the gene.

In 2006 and in 2010, the World Health Organization adopted two resolutions calling on countries to strengthen their responses to the disease. Canada made a start with the creation of the National Sickle Cell Awareness Day, on June 19. Now it is time to take it a step further.

This bill calls on the Minister of Health to develop a national framework on sickle cell disease.

First, it would include measures to address the training, education, and diagnostic and treatment tool needs of health care professionals relating to sickle cell disease.

Second, it would provide for the creation of a national research network to advance research, improve data collection and establish a national registry on sickle cell disease.

Third, it would set evidence-based national standards for the diagnosis and treatment of sickle cell disease.

Fourth, it would include measures to institute universal neonatal screening and postnatal diagnosis when necessary and the provision of results for affected individuals and organizations.

Fifth, it would include measures to support public awareness campaigns on sickle cell disease and blood donation.

Sixth, it would provide measures to promote and support blood donation by every segment of the population and the creation of a diverse blood supply that allows for safe transfusions.

Seventh, it would include an analysis respecting the implementation of a tax credit for individuals with sickle cell disease and their caregivers.

Eighth, it would ensure the inclusion of sickle cell disease in the eligibility criteria for existing disability benefits.

Finally, it would contain an analysis of the potential inclusion of treatments essential to sickle cell disease care in the public drug insurance plan.

I think it is fair to say that the ambitions are big and that this is a very ambitious project.

This inherited blood disorder affects a person's hemoglobin. It causes chronic pain, organ damage, serious infections and a shortened life expectancy. Early detection is important for successful treatment.

Sickle hemoglobin forms stiff rods within the red cell, which changes the cell's shape to something more like a crescent or sickle shape. This creates enormous problems. The sickle-shaped cells result in blockages because the cells are stiff and unable to pass through the vessels easily. These resulting blockages mean that the vital oxygen stops reaching the parts of the body that need it.

What impact does this have on the person with the disease? A lack of oxygen results in attacks of sudden and severe pain throughout the body. It is a horrible condition. This pain occurs without warning and often results in hospitalization. The pain usually lasts five to seven days. While not always the cause, it has been noted that pain crisis can be triggered by temperature changes, stress, dehydration and even living at high altitudes. Of course, any infection that normally causes a rise in the number of red blood cells triggers the disease as well.

For most children with the disease, pain usually subsides between pain episodes. Nonetheless, many children with sickle cell anemia take penicillin every day to help the immune system, and they face a lifetime regimen of daily folic acid. For teens and adults, the pain is usually chronic, which can have a huge impact on the education, employment and mental health of sufferers.

Due to the lack of oxygen to vital organs on a regular basis, sickle cell disease often begins to cause long-term damage to vital organs. It is common for those with the disease to develop serious issues with their skin, brain, bones, spleen, heart, kidneys, liver, lungs and even their eyes. The spleen is particularly susceptible, because of its narrow blood vessels and its basic job of clearing old red blood cells.

If we can, through legislation, help alleviate suffering, then we should do so. There are some questions that will need to be dealt with as this bill moves forward. For example, the bill does not define the scope of universal neonatal screening, plus instituting and administering it would require provincial buy-in. A national framework that sets evidence-based national standards for diagnosis and treatment may create friction with provinces unless implemented collaboratively.

I should point out that comparable health-related framework bills, such as the Federal Framework on Lyme Disease Act, call for the creation of guidelines or best practices instead of standards. Clinical standards are evidence-based recommendations produced by medical professional bodies that describe optimal care for specific conditions. They are advisory only and binding on no one. It is also unclear in the legislation who would establish these guidelines.

I should also point out that Canada already has a national strategy for drugs for rare diseases bill. Bill S-201 focuses on one rare disease, so this framework may duplicate or contradict the existing bill. However, almost every piece of legislation we consider has flaws when it is first brought to the House. This is why we discuss it here in the chamber and in even greater detail at the committee stage. Hopefully we can make improvements. The goal is to serve the people of Canada and in this case, those who are suffering from sickle cell disease. I look forward to working together to improve Bill S-201, and the day when sickle cell disease is something consigned to history.

[Kathy Borrelli, Conservative, Windsor—Tecumseh—Lakeshore, ON]

Mr. Speaker, today parliamentarians are considering a measure to address a rare disease that affects thousands of Canadians, sickle cell disease. Bill S‑201, the national framework on sickle cell disease act, is intended to take steps to ensure awareness and to ensure that the level of care for people with sickle cell disease across Canada is more aligned.

Sickle cell disease is a lifetime genetic blood condition where red blood cells become hard and crescent-shaped instead of round. These misshapen cells can block blood flow, causing severe pain, infections and serious damage to organs over time. An estimated 6,500 people in Canada suffer from sickle cell disease. I say “estimated”, as we do not have an accurate count because there is not a national registry. Because of this, it is difficult to fully understand the scope of the condition, or for provinces to plan effectively for health care services and resource allocations so patients receive appropriate support across the country.

Conservatives are proud to support sickle cell awareness. We voted to recognize June 19 as national sickle cell awareness day, as an important step in increasing visibility and understanding of this disease across the country. The bill would build on this awareness by including “measures to support public awareness campaigns on sickle cell disease and blood donation”.

Despite the good intention of the legislation, there are several sections of the bill that raise questions. The bill seeks to “set evidence-based national standards for the diagnosis and treatment of sickle cell disease”. However, standards of care are set by professional associations that operate under provincial jurisdiction. This is why it is essential that provinces and territories be fully engaged and that their perspectives shape any coordinated national approach.

There are examples of other framework bills where guidance has been established for the care of people with a specific disease or class of diseases. For example, Bill C-442, an act respecting a federal framework on Lyme disease, which was introduced in 2013 in the 41st Parliament, included a provision that mandated the establishment of guidelines regarding the prevention, identification, treatment and management of Lyme disease and the sharing of best practices throughout Canada.

Similarly, Bill C-224, the national framework on cancers linked to firefighting act, introduced in 2022 in the 44th Parliament, will “make recommendations respecting regular screenings for cancers linked to firefighting”, “promote information and knowledge sharing in relation to the prevention and treatment of cancers linked to firefighting” and “prepare a summary of existing standards that recognize cancers linked to firefighting as occupational diseases.”

These are sound and balanced examples of legislation that promote more consistent care across Canada while respecting provincial jurisdiction and encouraging national knowledge sharing. Similar concerns come to mind as the framework seeks to “include measures to institute universal neonatal screening”. As of August 2024, universal sickle cell disease screening has been implemented in all provinces except for Newfoundland and Labrador and the territories.

From my point of view, the real opportunity here would be to focus on closing the remaining gaps, working with jurisdictions that have not yet implemented screening, and supporting them in a way that respects their unique circumstances. I am looking forward to discussions at committee about what collaboration can take place with Newfoundland and Labrador and the territories to make sure the screening can be implemented across all Canadian jurisdictions.

There is also the question of how much taxpayer money the measures included in the bill would cost. To date there has been no estimate from the Parliamentary Budget Officer outlining the financial impact of the bill. It is only reasonable that Canadians have a clear understanding of these price tags before the framework is finalized.

Federal strategies need to focus on delivering value for taxpayers by investing in solutions that improve outcomes, not just increase spending. If we are spending without any results, that is problematic. That is why Conservatives support the implementation of a rare disease strategy, not just a rare disease drug strategy.

[The Deputy Speaker, Tom Kmiec]

The time provided for the consideration of Private Members' Business has now expired, and the order is dropped to the bottom of the order of precedence on the Order Paper.

It being 2:30 p.m., the House stands adjourned until Monday at 11 a.m. pursuant to Standing Order 24(1).

(The House adjourned at 2:30 p.m.)

The House resumed from April 17 consideration of the motion that Bill S-201, An Act respecting a national framework on sickle cell disease, be read the second time and referred to a committee.

[Maxime Blanchette-Joncas, Bloc, Rimouski—La Matapédia, QC]

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.

[Sonia Sidhu, Liberal, Brampton South, ON]

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.

[Dan Mazier, Conservative, Riding Mountain, MB]

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.

[Kevin Lamoureux, Liberal, Parliamentary Secretary to the Leader of the Government in the House of Commons]

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.

[Tamara Kronis, Conservative, Nanaimo—Ladysmith, BC]

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.

[The Assistant Deputy Speaker, John Nater]

The member for Scarborough—Woburn has five minutes for his right of reply.

[Michael Coteau, Liberal, Scarborough—Woburn, ON]

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.

[The Assistant Deputy Speaker, John Nater]

The question is on the motion.

If a member participating in person wishes that the motion be carried or carried on division, or if a member of a recognized party participating in person wishes to request a recorded division, I would invite them to rise and indicate it to the Chair.

[Michael Coteau, Liberal, Scarborough—Woburn, ON]

Mr. Speaker, I ask that it pass on division.

[The Assistant Deputy Speaker, John Nater]

Therefore, I declare the motion carried on division. Accordingly, the bill stands referred to the Standing Committee on Health.

(Motion agreed to, bill read the second time and referred to a committee)

[Kevin Lamoureux, Liberal, Winnipeg North, MB]

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.

[The Assistant Deputy Speaker, John Nater]

Is it agreed?

[Some hon. members]

Agreed.