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.