Hon. Jane Cordy: Honourable senators, I am pleased to speak today at second reading of Bill S-280, An Act respecting a national framework on sickle cell disease.

I must begin by thanking the sponsor, Senator Mégie, for introducing this bill and working so hard on behalf of Canadians living with sickle cell disease and their families.

I would also like to thank the Senate’s Black Caucus members, who hosted a wonderful event last June here, on Parliament Hill, to celebrate Sickle Cell Awareness Day.

I have been fortunate enough to meet many Canadians living with sickle cell, their families and their caregivers. Many of these families and caregivers have been advocating for what is laid out in Bill S-280.

Many parents have shared with me stories of their experiences raising children with sickle cell disease — the desperation and fears pre-diagnosis, not knowing why their infant children were under such distress and the feeling of helplessness trying to alleviate their children’s pain.

Many families felt it was only luck that their children with sickle cell disease were properly diagnosed by a family doctor familiar with the disease and its symptoms, and that they were told how best to treat it. Early diagnosis and treatment plans give the best chance at providing a positive quality of life for many living with sickle cell.

I have heard other stories from families about the difficulties they have faced in getting a proper diagnosis: children in and out of the ER on a regular basis while experiencing severe pain that had not been diagnosed. Doctors and health care professionals who were less knowledgeable about sickle cell disease would be at a loss as to the causes of this pain. In some cases, if the patient was a teenager, I have heard unfortunate stories about them being labelled as addicts just trying to game the system for pain prescriptions in the emergency department. Fortunately, this is starting to change as more and more people are doing research in sickle cell disease.

Awareness of sickle cell has long been a barrier to early proper diagnosis in Canada. Although sickle cell disease is the world’s most common human genetic disease, it has been relatively unknown in Canada until recent years. I have told the story before of how, in 1997, the great Jean Augustine was the first parliamentarian to raise the issue of sickle cell disease in either house of Parliament. To highlight how little sickle cell was known, the health minister at the time, Allan Rock, told Jean that he didn’t know what sickle cell disease was. To his credit, a week later, he told her that he had gotten a full briefing on the disease.

I am so pleased that awareness of sickle cell has increased significantly over the last number of years. Provincial sickle cell associations, along with the national association, have made great strides in educating communities, health care professionals and legislators. As Senator Mégie has pointed out, many provinces are now performing automatic newborn screening for sickle cell disease and the sickle cell trait. I was pleased that Nova Scotia was the third province to do automatic newborn screening, following Ontario and British Columbia.

I must mention the good work that the sickle cell disease associations across Canada are doing to create positive changes in care for those with sickle cell disease. I have worked with Lanre Tunji-Ajayi, President of the Sickle Cell Awareness Group of Ontario, and Biba Tinga, President of the Sickle Cell Disease Association of Canada. These women and other volunteers have done incredible work as sickle cell advocates. Many of you met Biba at the sickle cell event on Parliament Hill in June. I thank all these volunteers who have made a huge difference in the lives of those with sickle cell disease and their families.

Honourable senators, we have made tremendous progress on making Canadians aware of sickle cell disease. When I first spoke about the issue in the Senate, very few senators had heard of sickle cell. The “friendly” critic for my National Sickle Cell Awareness Day Bill, former senator Carolyn Stewart Olsen, had been a nurse before her political career and knew about the disease and spoke in favour of the bill.

Awareness has provided an important first step, but it is time to move beyond awareness and to expand resources on a national scale and to provide national supports.

Nationally, we have somewhat of a patchwork system in recognizing, diagnosing and treating sickle cell disease. Different provinces and territories have developed different policies when it comes to the disease. For instance, not all provinces and territories perform automatic newborn screenings.

We are lacking proper data on the disease and on those who are carriers of the sickle cell trait. It is hard to move forward without good data. As Senator Mégie mentioned, research funding, particularly in the form of grants, is virtually non-existent for sickle cell.

I was fortunate enough to be invited to tour the largest sickle cell treatment clinic in the country, which is located in the Toronto General Hospital. The IWK Health children’s hospital in Halifax has also been a leader in researching and treating sickle cell disease. These are two hospitals, with tremendous staff, that are doing great work.

A problem persists where our larger population centres may be well served, but as you move away from those centres into smaller, more rural areas, Canadians begin to experience more difficulties. Bill S-280 will help to address these limitations.

I am encouraged to see the call for the federal government to take a leadership role in developing a national framework which will provide for the creation of a national research network to advance research, improve data collection and establish a national registry on sickle cell disease; include measures to address the training, education and diagnostic and treatment tool needs of health care professionals relating to sickle cell disease; and set evidence-based national standards for the diagnosis and treatment of sickle cell disease.

I am also happy to see the inclusion of an analysis respecting the implementation of a tax credit for individuals with sickle cell disease and their caregivers.

I have spoken to so many parents who talk to me about the hardships they face as their child, or children, live with sickle cell. Children can miss months of school and be in and out of hospitals for pain treatment. During this time, many parents are unable to work outside the home as they care for their children. Any financial relief, even the possibility of a tax credit, would help in some small way to support those families through difficult times.

Honourable senators, a national framework is long overdue. Since that first speech in 1997 by the Honourable Jean Augustine in the other place, it has been almost 37 years.

I am fully supportive of Bill S-280, the national framework on sickle cell disease act, moving forward to committee and I look forward to examining the legislation in committee.

Thank you.

(On motion of Senator Martin, debate adjourned.)

Hon. Jane Cordy: Honourable senators, this coming Monday, June 19, will be our sixth year of celebrating National Sickle Cell Awareness Day in Canada. Canada is the first and only country to recognize a National Sickle Cell Awareness Day. This day means a great deal to those within the sickle cell community. It is a wonderful way to come together and to share their stories and to highlight the important work they have been doing to move the needle forward regarding sickle cell disease.

I have been so privileged to hear their stories and share their journeys. I have met so many wonderful people who are incredibly dedicated to this work.

There are many events happening this weekend in order to celebrate and to recognize National Sickle Cell Awareness Day. Just this morning, I had the pleasure of attending a breakfast organized by the African Canadian Senate Group. It was a lovely event. I’m always so delighted to meet new people and to see old friends who are so passionate and so motivated in helping the sickle cell community.

On Saturday, I will be attending the Sickle Cell Awareness Group of Ontario’s annual Hope Gala and Awards in Toronto. It will be nice to meet with old friends and new after years of postponing and doing things virtually due to the pandemic. I know the community is eager to come together again and to celebrate one another.

Finally, on Monday, June 19, the Sickle Cell Disease Association of Canada will hold a sickle cell conference here, at the University of Ottawa. I am looking forward to taking part in what I am sure will be an educational session.

Honourable senators, I encourage you to seek out the sickle cell communities within your own regions and to further inform yourselves on the disease. A national day of awareness seems so simple and yet it is so very important in bringing groups across the country together to get their message out and to celebrate their incredible efforts and achievements. I would like to wish all Canadians a very happy National Sickle Cell Awareness Day.

[Translation]

Hon. Jane Cordy: Honourable senators, I rise today to recognize the month of September as Sickle Cell Awareness Month. Sickle cell organizations across Canada use this month to raise the profile of sickle cell disease and to improve the disease management skills of individuals, their families and their caregivers. Furthermore, it is an opportunity to roll out educational activities among care providers, to increase knowledge of the disease and to reduce stigma and systemic racism experienced by individuals when seeking medical care.

This year’s theme is “The Lesser Told Stories of siblings with Sickle Cell Disease.” Lanre Tunji-Ajayi, an active leader within the sickle cell community and president of the Sickle Cell Awareness Group of Ontario, speaks often of her experiences as the eldest of eight and having two siblings with sickle cell disease. Lanre continues to support those with sickle cell disease here in Canada and around the world.

Due to the nature of the disease, it is very difficult for those living with sickle cell disease to continue their education and to work at the same time. Because of this, the Sickle Cell Awareness Group of Ontario has established the Sunday Afolabi Scholarship Grant and the Sholape Animashaun Scholarship Grant for Canadians with sickle cell disease to inspire and to help them in their pursuit of higher education. Honourable senators, this funding is instrumental in allowing Canadians with sickle cell disease to achieve their dreams while still managing their day-to-day living with the disease.

Honourable senators, it is truly remarkable the work that is being done by Canadians affected by sickle cell disease. Their commitment to furthering awareness and effecting change is second to none. I have been so fortunate to meet many of them, and they have been so open and honest when sharing their stories.

While there is an acute focus during the month of September and for National Sickle Cell Awareness Day on June 19 of every year, it is important that we keep these Canadians in the forefront throughout the rest of the year as well. I urge you to learn more about sickle cell disease and invite you to take part in the virtual Sickle Cell Summit on November 4 and 5, whose theme for 2022 is “Delivering Equity in Sickle Cell Disease, Lessons from the Pandemic.” Those living with sickle cell disease, as well as their families and caregivers, are eager to share their stories with you.

Thank you.

Hon. Jane Cordy: Honourable senators, yesterday, on Sunday, June 19, we celebrated World Sickle Cell Day and National Sickle Cell Awareness Day in Canada. The recognition of this day has been extremely important and meaningful to the sickle cell community in Canada. Not only does it bring awareness to the disease, but it allows us to celebrate advancement in sickle cell care and it encourages momentum for the work that is left to do.

Since first becoming involved with the sickle cell community through an advocacy event on Parliament Hill in 2013, I have come to know many sickle cell patients, caregivers, supporters and advocates. They speak passionately about their experiences and best next steps to support Canadians living with this disease. The goal is to develop a national strategy for early sickle cell detection and sickle cell care. Honourable senators, I believe this is an achievable goal.

While sickle cell disease is inherited and can affect anyone who has both parents with a sickle cell trait or sickle cell and another hemoglobin trait, it is primarily found in people who are Black, Southern European, Middle Eastern or of Asian-Indian ancestry. It is therefore important to note that systemic racism in health care is, unfortunately, a reality for sickle cell patients. Individuals who present at Canadian hospitals with pain are sometimes treated as drug seekers when compared to their non‑racialized counterparts. Racial injustice in health care must be stopped. The Sickle Cell Awareness Group of Ontario have committed themselves particularly to equitable access to comprehensive standard care across the province.

To those who work so diligently on behalf of Canadians with sickle cell disease, I want you to know that your work, energy and enthusiasm are valued. I would like to express my deepest thanks to Lanre Tunji-Ajayi, Biba Tinga, and Rugi Jalloh for the work they have done and the work they continue to do. I also extend my thanks to MPs Darren Fisher and Dr. Kirsty Duncan for their advocacy for those with sickle cell disease and their families. They work tirelessly to keep sickle cell disease and the needs of those with sickle cell at the forefront. Honourable senators, it seems like most days out of the year are linked to recognizing some particular event or disease. It would be easy to dismiss such bills as frivolous; I assure you, they are not. They mean something.

When National Sickle Cell Awareness Day was passed in 2017, the community was overjoyed. Each new person who is made aware of this disease, donates blood or advocates for legislation moves the needle slightly and allows us to better care for Canadians struggling with the disease. This is the reason that on June 19, we celebrate. I encourage you to take some time to learn about sickle cell disease and to meet and speak with those affected in your communities. I have no doubt you will be as touched by their passion as I have been. Thank you.

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