Debates of April 17th, 2026

National Framework on Sickle Cell Disease Act

[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.)