Moved third reading of Bill S-201, An Act respecting a national framework on sickle cell disease.

He said: Honourable senators, I rise today to speak to third reading of Bill S-201, An Act respecting a national framework on sickle cell disease. I’ll start by thanking my colleagues on the Standing Senate Committee on Social Affairs, Science and Technology and their chair, Senator Moodie, for a thorough study of this bill and for advancing it unamended.

I also want to take a moment to share some brief history. Pardon the flurry of bill numbers and dates, but I think it’s important to highlight the winding road of legislation that has preceded this moment.

The journey began 15 years ago. In December 2010, former MP and associate professor of health studies Dr. Kirsty Duncan tabled Bill C-605, calling for a national strategy and recognition of a sickle cell awareness day. The bill didn’t get past first reading. It was reintroduced six months later as Bill C-221. Again, it didn’t get past first reading.

In 2015, the Honourable Jane Cordy introduced Bill S-211 to create the National Sickle Cell Awareness Day. It received Royal Assent in December 2017.

Five years later, on November 9, 2023, I had the honour of introducing legislation that created the Sickle Cell Awareness Day Act in Nova Scotia. Meanwhile, here in Ottawa, just two days earlier, the Honourable Dr. Marie-Françoise Mégie introduced Bill S-280. It reached second reading in June 2024, but then died on the Order Paper this past January.

Dr. Mégie reintroduced the bill as Bill S-201 in May of this year. She got it through second reading and on its way to committee before her retirement in September. I am honoured that Dr. Mégie placed her confidence in me to take this bill the rest of the way through this chamber. But, as you can see, a lot of people did a lot of work on this bill long before my arrival.

Many thanks to the experts and witnesses who have shared their professional and personal experiences at various stages of this bill’s development and with committee members last month. Special thanks to Biba Tinga, a caregiver and volunteer president of the Sickle Cell Disease Association of Canada.

I also want to acknowledge Senator Ravalia and Senator Gerba, who spoke to this bill in June. Their eloquent words of support will soon be joined by those of Senator Burey. And thanks go to Senator Ataullahjan. As critic of this bill, her support is greatly appreciated. I was pleased to see that the bill led to her learning that sickle cell disease is prevalent in the Pakistani community.

Senator Ataullahjan summed up this bill very nicely when she said:

. . . we are not simply dealing with a piece of legislation. We are bringing to light a matter of human rights, social justice and human dignity.

Yes, we are.

People living with sickle cell disease deserve to be treated with compassion and dignity.

Honourable colleagues, if your schedule allowed you to hear just one of these speeches — just one — you now know more about sickle cell disease than the average emergency room nurse or doctor in Canada. That’s a shocking reality. Admittedly, health practitioners in major cities are more aware of it, but in rural and less diverse parts of Canada, very little is known about it. It is a significant challenge. Unfortunately, it’s just one of many, which is why this bill is so important and so broad.

I am proud of Bill S-201. Congratulations to Dr. Mégie, her office staff, other Senate staff and the Library of Parliament for doing good work on this bill and for listening to the sickle cell community. The vast majority of Canadians have no idea how bad sickle cell disease is or how many long-standing inequities exist.

First, the disease. Approximately 6,500 Canadians live with sickle cell disease, which is linked to ancestry from regions like West Africa, the Caribbean, the Middle East and South Asia. It disproportionately affects the Black community. People with sickle cell disease have red blood cells shaped like crescents or sickles, which causes them to stick together and block the flow of blood. This can lead to extreme pain and starve the body of oxygen. These pain crises can be triggered by extreme temperatures, dehydration, stress and infection. They can also lead to complications that include stroke, organ damage and serious bacterial infections. Treatment frequently involves blood transfusions, and patients often require long hospital stays. Life expectancy is between 50 and 55 years of age.

Now I will briefly highlight the inequities. As mentioned, health care providers outside of major centres don’t know how to properly treat these patients. They are often ignored, labelled as drug addicts and left to suffer excruciating pain and permanent organ damage.

Bill S-201 presents a nine-point plan that includes addressing a lack of knowledge about this disease among health care professionals by requiring better training, as well as improved disease management through the creation of a national registry and a national research network.

People living with sickle cell disease are also denied financial supports that are available to other Canadians. This bill aims to make the disease eligible for disability benefits, tax credits and public drug insurance plans. The bill also identifies, among other things, the need for a more diverse blood supply. As mentioned, patients frequently require blood transfusions. The most compatible blood comes from donors with similar ethnic backgrounds. However, in 2023 only 1% of blood donors in Canada were Black, despite making up 4.3% of the population. This discrepancy is linked to anti-Black discriminatory practices in the Canadian blood products system from 1997 to 2018. Work is under way to repair cultural damage and rebuild trust, but much more needs to be done.

Given that this disease has been the subject of a legislative process spanning 15 years, and given the inequities people with sickle cell face because of systemic racism and cruel neglect, they have every right to be angry. I was expecting it, but something different happened in committee. It was when Ulysse Guerrier testified. Mr. Guerrier is president of the Sickle Cell Association of Ontario. He also lives with sickle cell disease. At just 49 years of age, Mr. Guerrier has outlived two of his siblings. He misses about five days a month from his job — or more when he has complications. Mr. Guerrier has experienced all of the inequities I’ve mentioned here today. Anger and frustration would be entirely justified, but he brought something very different to the committee hearing. Mr. Guerrier referenced the bill, calling it “. . . an act of hope.”

I admire Mr. Guerrier. People with less strength would be discouraged and demoralized, but he dedicates precious time to — in his own words — speaking “. . . for thousands of Canadians whose voices go unheard every day.” I very much hope the chamber will honour Mr. Guerrier’s devotion by supporting this bill.

Before I close, I have one more personal story to share. It’s about Val and Cyrus O’Neale and their son Tyler. Val is my cousin, though she’s more like a sister in many ways. Tyler has sickle cell disease. I wish you all could meet this family. They are wonderful people.

If you ask Val to talk about sickle cell, she will tell you about Tyler’s first crisis at the age of 2 and how terrified she was. She will also talk about how she and Cyrus raised Tyler to accept the disease as part of his body but not let it define him as a person.

Val will share a couple of more memorable moments, but she will also spend most of the conversation talking about her gratitude for Dr. Michael Zeidman for empowering her to be an active part of Tyler’s care team and for always being there when needed, and for the nurses and the volunteers at the Credit Valley Hospital in Mississauga who went above and beyond to make a scared little boy feel special the year he spent Christmas there.

I am happy to report that Tyler is doing well. He is 34 years old. He is an engineer. He is very athletic, and he has not had a crisis in several years. That doesn’t necessarily negate the issue of life expectancy, but if the discussion turned toward the very difficult topic, as it did recently, Val would still express her gratitude. In fact, I’ll close with her words:

I don’t know what the future holds. But I do know, when I get up in the morning, I say, “We are blessed to have another day. Enjoy it. Do your best. And be kind.”

Thank you. Meegwetch. Wela’lin. Shukran.

Honourable senators, today I feel a deep sense of pride in Canada and to be a Canadian. As I stand and speak today in support of Bill S-201, An Act respecting a national framework on sickle cell disease, at third reading, I wish to begin by acknowledging that we are gathered on the unceded territory of the Algonquin Anishinaabe Nation.

This bill was previously introduced during the Forty-fourth Parliament as Bill S-280. Incidentally, I had the honour of serving as that bill’s critic. Although it had been sent to committee, its progress was interrupted by the dissolution of Parliament.

Today, the bill is back in a renewed form as Bill S-201. It includes updated provisions that reflect continued advocacy efforts and new developments in our understanding of sickle cell disease. I salute Senator Ince for taking up the torch and continuing this essential work.

I would also like to thank former Senator Mégie and her team for introducing this important bill and for allowing us, as the Senate of Canada, to truly implement and bring to life the principles enshrined in our Constitution and in the Canadian Charter of Rights and Freedoms, by creating an inclusive Canada where every citizen has the opportunity to fully achieve their potential.

The committee’s investigation and scrutiny of this bill showed how when we come together as Canadians, we can do great work. We can work together across provinces, research and the academic community.

I want to salute the work of the Black Creek Community Health Centre and their pivotal participatory research. Driven and shaped by the people most affected, I want to salute the work of the various organizations, the consultations and the work already taking place at the provincial level, especially in Ontario and Quebec.

I want to salute the work of Health Quality Ontario and the development of standards and best practices that will not only save lives and improve the quality and dignity of the lives of persons and families living with sickle cell disease, but also reduce health care costs and lead to a strong Canada, a more prosperous and a more inclusive Canada, a Canada where democracy stands strong.

But there is still much more work to be done to ensure that best practices and evidence-based standards are available to Canadians from coast to coast to coast, and hence the need for Bill S-201.

If you are still wondering why it is essential to raise awareness and establish a national framework for sickle cell disease, consider the following. My dear colleague Senator Ince spoke about them, so I’m not going to go over those details. I will just say the lack of awareness contributes to persistent health inequities and the stigma that continues to surround the condition.

In committee, we had the privilege of hearing powerful and insightful testimony from individuals with lived experience, advocacy organizations, members of the research and academic community, clinicians and subject-matter experts. Their contributions provided valuable analysis of the economic, financial, educational and psychological impacts of sickle cell disease.

One point of consensus among all these stakeholders is the urgent need to raise awareness of the economic burden borne by patients and families, as well as the acute-on-chronic disability that many endure.

Mr. Ulysse Guerrier, a patient living with sickle cell disease, shared the following eloquent and moving testimony:

The pain is constant and the damage is permanent. Yet I’m still here when two of my siblings are not. Every morning, before I can stand, I need powerful narcotics — oxycodone, OxyNEO, and even a fentanyl patch — just to function. I miss four to five days of work each month for treatments, and I lose even more when complications arise, and because this disease is invisible, many don’t understand the toll it takes. But the man-made inequities make it worse. Sickle cell is not recognized as a disability in Canada, meaning we are denied the Disability Tax Credit. There is little to no research funding, and doctors are pushed toward oncology, leaving the University Health Network’s Red Blood Cell Clinic — the only sickle cell centre in Canada — understaffed and underfunded.

Dr. Smita Pakhalé, professor and Senior Clinician Scientist at the University of Ottawa and The Ottawa Hospital, also spoke to the disparity in research funding. She stated:

 . . . . cystic fibrosis . . . which is a parallel disease because it is also a multi-system disease — not to take anything away from people with cystic fibrosis. I’m a lung doctor. I see cystic fibrosis very closely. It is also an inherited disease, a multi-system disease and a life-limiting disease. However, Canada spends more than 10 times the amount of money in clinical care and research on cystic fibrosis compared to sickle cell, and that’s a very conservative estimate.

Dear colleagues, this lack of investment in research has a direct impact on data collection, a patient registry, public awareness and, ultimately, the quality of care available to patients.

In my previous speech as critic, I raised a question for committee consideration: Why does this bill focus specifically on sickle cell disease, rather than encompassing hemoglobinopathies more broadly, including both sickle cell disease and thalassemia?

During committee meetings, Dr. Alan Tinmouth, physician and Director of The Ottawa Hospital Hemoglobinopathy Program and representative of the Canadian Hemoglobinopathy Association, provided important clarification. He stated:

. . . thalassemia is a hemoglobinopathy, and sickle cell disease is a hemoglobinopathy, but thalassemia is not encompassed within sickle cell disease.

There is certainly a need for the treatment, as Dr. Klaassen said, with gene therapy for that population, but they have a very different set of complications. They’re not routinely hospitalized. They do have decreased life expectancy, but they don’t have severe episodes of pain. It’s a very different disease. It just happens to be that the curative therapy is the same.

This testimony helped underscore the importance of maintaining a focused scope for the bill, while also recognizing the broader context of hemoglobinopathies and the need for tailored approaches to care and research.

What stood out most for me during the testimonies was Canada’s restrictive policy on blood donation, especially the malaria deferral. Red blood cell transfusions are a life-saving therapy for individuals living with sickle cell disease. Most patients will require transfusions at some point and may rely on them regularly. According to BC Children’s Hospital, chronic transfusion therapy typically involves one to three units of blood every four to six weeks. Can you imagine that, colleagues? These transfusions improve oxygen delivery and help mitigate the effects of vaso-occlusion, thereby reducing the risk of severe complications such as stroke.

As the Canadian Blood Services website states:

The most well-known blood group is ABO (which includes blood types A, B, AB and O), but in fact there are more than 33 blood groups. A person’s type within each group determines the combination of more than 300 markers on that person’s red blood cells, all of which are inherited from their ancestors.

This complexity makes it essential to find well-matched donors, particularly for patients from racialized communities.

However, Canada’s current blood donation policy permanently excludes individuals who have lived in or contracted malaria in endemic regions. This restriction significantly reduces the donor pool, especially among communities most likely to carry compatible blood types for sickle cell patients. In contrast, countries such as France, the United States and the United Kingdom have adopted more flexible, risk-based approaches to malaria deferral.

This is a complex issue, colleagues, involving risk-based analyses, testing and behavioural change. At the end of the day, however, this policy limits the availability of compatible blood and increases the risk of complications due to mismatched transfusions.

Bill S-201, through its new provisions on safe transfusion practices, offers hope that Canada may begin to address this policy and move toward a more equitable, inclusive and evidence-based approach to blood donation.

Let’s build a strong Canada where all Canadians matter, feel included in every aspect of life and can succeed — no matter their ancestry.

Dear colleagues, I believe the committee has conducted a thorough examination of Bill S-201 and provided Canadians with valuable context and insight into its importance. Therefore, I urge you to support this bill and vote in favour of sending it to the other place as soon as possible.

Meegwetch. Thank you.

Is it your pleasure, honourable senators, to adopt the motion?

Hon. Senators: Agreed.

(Motion agreed to and bill read third time and passed.)