Hon. Jane Cordy: Honourable senators, I would like to thank everybody for being very kind to me today, starting with Senator Plett at our meeting yesterday afternoon after the Senate sitting.

First, I would like to acknowledge that I’m speaking to you today on the unceded land of the Algonquin Anishinaabeg people.

Colleagues, I rise today to speak at second reading of Bill S-288, An Act respecting Inherited Blood Disorders Awareness Day. This bill will designate October 18 of each year as Inherited Blood Disorders Awareness Day in Canada.

I have spoken many times in this chamber about sickle cell disease and the work that many are doing to raise awareness of the disease in Canada. It is through my collaboration with the Sickle Cell Disease Association of Canada and other regional associations, including the Sickle Cell Disease Association of Atlantic Canada, that I bring this bill forward today.

Sickle cell disease is one of a family of relatively rare inherited blood disorders, which also includes thalassemia, hemophilia A and B, von Willebrand disease, rare clotting factor deficiencies, platelet function disorders, aplastic anemia and fanconi anemia.

Bill S-288 would bring all inherited blood disorders under one umbrella for the purposes of raising awareness and prompting better understanding. This would go a long way to improving outcomes for people living with these conditions. As the saying goes, “A rising tide lifts all boats.”

Honourable senators, this bill will also improve awareness of these diseases. Inherited disorders affect cellular and non-cellular components of the blood and are present in all ethnic groups, but certain populations may experience higher prevalence rates.

Sickle cell disease and thalassemia, for example, both affect the oxygen-carrying component of red blood cells. They can be passed on to children when both parents are carriers of the sickle cell gene.

Sickle cell disease affects nearly 100 million people globally. An estimated 6,000 Canadians live with sickle cell disease today. Thalassemia patients can require regular blood transfusions, which can impact the liver, heart and endocrine organs. This can lead to skeletal and growth abnormalities, as well as diabetes.

Although curative therapies for both conditions have recently been developed, they remain under review.

Sickle cell disease is found worldwide, but is most prevalent in people of African, Indian, Mediterranean, Southern European and Southeast Asian descent. Considering Canada’s rich multicultural tapestry, sickle cell disease and thalassemia are significant health concerns for thousands of Canadians.

As Cynthia Musonda, founder of The Sickle Cell Awareness Network of Saskatchewan, aptly stated:

People living with sickle cell disease in Canada represent a demographic with multifaceted needs, and unlike similar diseases, face numerous barriers to attain optimal quality of life.

Bessie Calabria, President of the Thalassemia Foundation of Canada, also noted that a day that officially recognizes inherited blood disorders nationally:

. . . will allow patients . . . to better advocate for accommodations at school, in the workplace, and within healthcare environments. It can also help with the prevention of thalassemia through appropriate carrier and pre-natal screening, reducing the burden on government resources.

The lack of awareness of these diseases must be addressed, as it often leads to stigmatization, misdiagnosis and improper treatment.

Colleagues, sickle cell disease may be the most common inherited blood disorder worldwide, but it is far from the only one.

Other conditions that affect blood cells are known as structural red blood cell disorders. Inherited white blood cell disorders are another subset of hereditary blood disorders.

Although less common, these conditions often affect children and involve abnormalities in the quantity of infection-fighting white blood cells. These conditions predispose patients to various debilitating infections.

Inherited bleeding disorders are a family of diseases in which blood clotting proteins or platelets that help the blood to clot are missing or do not function properly, resulting in prolonged bleeding. These conditions include hemophilia A and B, von Willebrand disease, rare factor deficiencies and platelet function disorders. The main risk for children and adults with these disorders is internal bleeding mainly into muscles and joints or vital organs, the result of which are very serious consequences or even death.

The most common among these diseases are hemophilia A and B. They are very rare disorders and are more prevalent in males. Hemophilia A affects fewer than 1 in 10,000 people. Hemophilia B is even less common, affecting approximately 1 in 50,000 people.

Treatment needed by a person with an inherited bleeding disorder is provided at a comprehensive care clinic, and while gene therapy is a viable therapeutic intervention, it is only available in Canada for hemophilia B patients.

This particularly underscores the disparity in the scientific research on a disease with a long-documented history. Due to factors relating to a lack of awareness and funding, these diseases remain virtually untreated. The enactment of this bill would certainly bring us closer to finding treatments and enhancing the quality of life and quality of care of affected patients.

Patients with abnormalities in their white blood cells face significant immunodeficiency, impacting their quality of life.

These conditions include aplastic anemia, which is characterized by insufficient blood cell production in the bone marrow. While this is a rare and serious condition, with prompt and proper care, symptoms can be managed through various treatment options.

To cite the words of Cindy Anthony, the Executive Director of the Aplastic Anemia & Myelodysplasia Association of Canada:

. . . [a] hereditary blood disorders day would go a long way in raising awareness of [aplastic anemia] and improve access of patients to life-saving therapies.

Colleagues, due to their rarity, disorders such as the ones I have mentioned are often overlooked or underdiagnosed and have the possibility of becoming understudied within the scientific community, which subsequently leads to less work toward treatment and prevention.

However, honourable senators, with your support, we can take action to raise greater awareness of these diseases and others like them with the official recognition on a national scale through the establishment of an inherited blood disorders awareness day in Canada on October 18 of every year.

With the passage of this bill, Canada would be a world leader and become the first to have a nationally recognized day for all inherited blood disorders.

The Sickle Cell Awareness Group of Ontario, the Thalassemia Foundation of Canada, the Aplastic Anemia & Myelodysplasia Association of Canada, the Sickle Cell Disease Association of Atlantic Canada and the Sickle Cell Awareness Network of Saskatchewan have signed on as member groups of the Global Action Network for Sickle Cell & Other Inherited Blood Disorders advocating for such an awareness day in Canada.

The Global Action Network for Sickle Cell & Other Inherited Blood Disorders was incorporated in 2022 to unite the forces of organizations serving inherited blood disorders in order to better amplify their impact globally.

The Sickle Cell Awareness Group of Ontario was a founding member of this network. This global partnership aims to improve outcomes for people living with inherited blood disorders worldwide through data-driven advocacy, collaboration and capacity building.

This year, the Global Action Network for Sickle Cell & Other Inherited Blood Disorders reached a consensus to recognize October 18 as the day of awareness. The global community recently celebrated the first World Inherited Blood Disorders Day, with the theme “From Awareness to Action: Transforming Lives.”

Honourable colleagues, I wish to emphasize the importance of unifying these otherwise individual rare hereditary diseases under a single banner. As Lanre Tunji-Ajayi from the Global Action Network for Sickle Cell & Other Inherited Blood Disorders has stated:

Without proper awareness and national programs, many children born with these debilitating disorders may not be identified, may receive poor care, or die prematurely.

This concerted effort will not only maximize visibility and advocacy for these patients, many of whom belong to marginalized communities. In the words of Sanjeev Wadhwani, the chair of the board of directors of the Sickle Cell Awareness Group of Ontario:

Inherited blood disorders, such as sickle cell disease, hemophilia, thalassemia and aplastic anemia are extremely complex, debilitating chronic conditions that rely on multidisciplinary care and patient-centric programs for families impacted by these diseases. . . . Recognizing hereditary blood disorders day in Canada is a key significant step towards raising awareness of the impact of these diseases across our patient community, health care providers, policy-makers, industry partners and [the] general public.

Additionally, Rugi Jalloh, the President and CEO of the Sickle Cell Disease Association of Atlantic Canada, has said:

Improved awareness and education around hereditary blood disorders will ensure that the affected Canadians can effectively manage their disease and this will lead to reduced health care costs for the government.

Honourable senators, we tend to forget the large impact that smaller bills such as Bill S-288 can have for Canadians, particularly vulnerable Canadians who often feel overlooked. Let us heed the words of these patient organizations seeking our support and illuminate the shadows where neglected hereditary blood disorders have dwelt for far too long.

I’m hopeful that you will support this bill — this first step — in order to amplify the voices of these patients very much in need of acknowledgement and care. I thank you.