Mr. Speaker, first, I would like to thank my friend from Saskatoon—Grasswood for taking away 90% of my speech, but a very eloquent outline of the issues with respect to sickle cell, and I thank him for that.
Let me begin as always by acknowledging that we are gathered here on the unceded lands of the Algonquin people.
I want to thank Senator Jane Cordy from Nova Scotia for passing Bill S-211, an act respecting National Sickle Cell Awareness Day in the Senate. Her hard work over the years on this issue came to light with the passage of this bill in the Senate. I certainly want to thank my good friend from Dartmouth—Cole Harbour for sponsoring it in our House and for his great advocacy on this issue.
Before I entered politics, my understanding of sickle cell was very limited. I must admit that it was on a tour during Black History Month two years ago, with my good friend from Bourassa, of a local community health centre called Taibu that I found out about sickle cell disease. Taibu Community Health Centre is the first and only black focused health care centre in North America, and I would say in the Americas.
I learned that many young people face an uncertain future due to bouts of pain that limit them from reaching their full potential.
There are systemic challenges in accessing medical services and government programs, due to a lack of understanding of the disease. For example, for CPP disability, accessing disability tax credits and those types of facilities that are available to those who have long-term conditions are often unavailable to those suffering from sickle cell disease.
There is a lack of support for family members caring for their loved ones, and the disease disproportionately affects members of the African Canadian community, as my good friend from Saskatoon—Grasswood said. The lack of awareness about the disease often results in individuals being underserved by our health care system as a whole, including in the areas of research.
The fact that treatment and knowledge of the disease vary from province to province, and even from hospital to hospital in a particular region compounds the problem. It is one of the most common genetic diseases in Canada and one that has serious effects upon the lives of those suffering from it. Currently, people with sickle cell disease live with life expectancies as much as 30 years lower than the general population.
Let us look at the disease. Sickle cell anemia is caused by a mutation in the gene that makes an individual's body produce haemoglobin. Haemoglobin is the component in red blood cells that allows them to carry oxygen from the lungs to the rest of the body. In people with sickle cell anemia, the abnormal haemoglobin causes red blood cells to become rigid and sickle shaped due to a hardening of the irregular haemoglobin into long rods. Individuals who are sickle cell carriers have only one sickle gene and do not usually experience serious symptoms. However, as carriers of the disease, they are able to pass it on to their children if their partners have the disease or are also carriers.
The symptoms of sickle cell effects are as follows. Sickle cell disease affects each person differently and can manifest in many ways. For example, it may damage the spleen, cause bouts of pain, delay growth in children and adolescents, damage vision.
Around 10% of children with sickle cell disease have suffered strokes, and one in four adults have suffered strokes. It can cause life-threatening chest conditions, high blood pressure, blocked blood flow to kidneys and liver, open sores on patient's legs, gallstones, and priapism among men.
Treatment is often quite complicated. It can be treated in two ways, one by pain management, or through blood transfusions. Unfortunately, both methods of treatment are not without side effects.
I want to share a very personal story, one that involves a very dear friend of mine. My friend and her partner both have the sickle cell trait and therefore are carriers of the disease. Their first child was born in 2005, and at that time there was no mandatory pre-screening process for sickle cell disease in Ontario hospitals. It was not until a few months after his birth that they discovered that he was a carrier.
By the time their second child was born, the process had changed significantly in Ontario. My friend and her partner received genetic counselling, and the process of testing children after birth had become standard in Ontario, as it would in Saskatchewan as well.
This test performed shortly after their second son's birth revealed that he had inherited the sickle cell trait from both parents and thus had sickle cell disease. Early detection provided my friend with the tools and counselling necessary to take control of the situation and ensure that their son receives the care he needs. However, today only six out of 10 provinces require early detection for sickle cell disease.
Today my friend's second son is a relatively healthy boy, and the treatment he has had since his first acute chest crisis, at age one, hydroxyurea and daily amoxicillin, as prophylaxis, have kept most of his symptoms at bay. Despite the young boy faring well for someone with sickle cell anemia, my friend and her family have nevertheless spent countless nights in the hospital and even more time taking him from doctor to doctor. Due to the seriousness of sickle cell disease, every fever must be treated as an emergency, and any sign of pain is frightening.
My friend is relatively lucky. Her family is a middle-income family. Her mother is happy to look after her son, so she does not have to worry about him during the day as she works. She has a flexible work environment that allows her to take time off when necessary. While my friend can effectively navigate the health care system because of her advocacy skills, this is not available to most people, particularly those from racialized communities.
On a broader level, sickle cell disease has not been given the level of attention it deserves due to the fact that it primarily affects particular communities. These communities, in particular the black community, often face more than one level of discrimination.
In Canada, second-generation black Canadians face lower wages and almost twice the unemployment rate when compared to other Canadians. This economic disparity makes it more difficult to raise awareness about sickle cell disease inside and outside the health care system, as many people in the sickle cell community are not traditional power brokers in Canada.
If a parent of a child with sickle cell disease were working a minimum wage job, it would be virtually impossible for that person to take time off work to care for a sick child and be able to pay the bills. Attending every shift might make the difference in affording the necessary medication or healthy food that people with sickle cell anemia need to remain healthy. In fact, in these situations, having a sick child can result in parents not being able to hold down a job.
The lack of awareness about sickle cell disease only exacerbates the problem. Employers who do not understand the disease might also not be as accommodating when staff members must take time off to care for a relative or because of their own pain crises.
One of the major reasons people with sickle cell disease are being underserved by the health care system is a lack of awareness. This is a disease that individuals can die from if not treated appropriately.
Last month was a very difficult month. I saw first-hand the effects of sickle cell disease. I was able to attend a memorial for Kesten Petgrave, who was a client of the TAIBU Community Health Centre. Kesten died on January 7, on his birthday, due to complications associated with sickle cell disease. Kesten was actively involved in advocating for those who live with sickle cell disease through various groups and organizations. He mentored children and youth who attended Camp Jumoke and was active with the sickle cell support group at TAIBU. He was talented and expressed himself through various forms of art, including music. This is the real face of sickle cell disease.
Declaring June 19 national sickle cell awareness day will serve as an annual reminder of the suffering people go through.
I want to take a moment to acknowledge the individual victims and their families and all the organizations that have worked so hard on this issue over the years. In particular, I want to call out the TAIBU Community Health Centre, the Sickle Cell Awareness Group of Ontario, the Sickle Cell Disease Association of Canada, the Sickle Cell Association of Ontario, the Black Health Alliance, and Camp Jumoke for the great work they have undertaken over the years.
If more Canadians were aware of the repercussions and the effects on individuals and families, we would be much more inclined to put research dollars and additional support toward those who need the help.
I want to thank the Senator, as well as my friend, as well as all those who have spoken in support. I ask the House to support the motion unanimously so that June 19 can be declared sickle cell awareness day.