moved that Bill , be read the second time and referred to a committee.
He said: 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 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 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 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 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 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 , which called for the designation of June 19 as National Sickle Cell Awareness Day. There is also the member for . 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.
:
Mr. Speaker, it is always an honour to rise in the House, and specifically today to speak to Bill , 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 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.
:
Mr. Speaker, I am pleased to rise to speak to Bill , 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.
:
Mr. Speaker, I am pleased to rise today to express our government's support for Bill , 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 , 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 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 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 , which created National Sickle Cell Awareness Day on June 19. Thanks to this bill, which was sponsored by my colleague, the member for , 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 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.
:
Mr. Speaker, I am pleased to rise today to discuss Bill , 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 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 , and the day when sickle cell disease is something consigned to history.
:
Mr. Speaker, today parliamentarians are considering a measure to address a rare disease that affects thousands of Canadians, sickle cell disease. Bill , 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 , 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 , 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.