This bill is from the 42nd Parliament, 1st session, which ended in September 2019.
This bill has received Royal Assent and is now law.
This is from the published bill.
This enactment designates the nineteenth day of June in each and every year as “National Sickle Cell Awareness Day”.
All sorts of information on this bill is available at LEGISinfo, an excellent resource from the Library of Parliament. You can also read the full text of the bill.
Bill numbers are reused for different bills each new session. Perhaps you were looking for one of these other S-211s:
National Sickle Cell Awareness Day ActPrivate Members' Business
The Assistant Deputy Speaker Anthony Rota
The time provided for the consideration of private members' business has now expired and the order has dropped to the bottom of the order of precedence on the Order Paper.
The House resumed from December 1, 2016, consideration of the motion that Bill S-211, An Act respecting National Sickle Cell Awareness Day, be read the second time and referred to a committee.
National Sickle Cell Awareness DayPrivate Members' Business
February 8th, 2017 / 6:25 p.m.
Conservative
Kevin Waugh Conservative Saskatoon—Grasswood, SK
Mr. Speaker, it gives me great pleasure tonight to speak to Bill S-211, an act respecting national sickle cell awareness day.
The United Nations, the African Union, and the World Health Organization have all recognized sickle cell disease as a public health priority. They also all recognize June 19 of each year as World Sickle Cell Awareness Day. World Sickle Cell Awareness Day has been held on June 19 since 2008. That day was chosen to commemorate the day on which a resolution was officially adopted by the General Assembly of the United Nations. It recognizes sickle cell disease as a public health concern.
Quite honestly, until last September, I had heard about sickle cell disease but actually had no idea what it was or how serious it could be. I had the opportunity, though, to meet with members of the Sickle Cell Association of Canada, including my constituent in Saskatoon—Grasswood, Mr. Craig Eling. Craig has been a big help in preparing me for my remarks in the House today.
I would like to give some facts about this disease.
Sickle cell disease is the most common inherited blood-related disease. The World Health Organization, the WHO, estimates that up to 5% of the world's population are healthy carriers of the gene for sickle cell disease. It is most commonly found in people from sub-Saharan Africa, the Middle East, Mediterranean countries, and parts of India.
People get one gene from each of their parents. A person with one gene for sickle cell disease is known as a carrier, also known as sickle cell trait. Individuals live normal lives and are very rarely affected by their single gene, but here is where it becomes complicated. A person with two genes has sickle cell disease, also known as sickle-cell anemia, and their lives are greatly impacted by this condition.
Sickle cell disease results in the production of abnormal red blood cells, which are shaped like a crescent moon or the letter “C.” Normal red blood cells look like a doughnut without the hole. Sickle shaped blood cells like to get stuck because of the points on either end of the crescent moon shape, which causes many of the issues associated with the disease. The most common place they get stuck is in the organ that cleans the blood. That, of course, is the spleen. Because they get stuck in the spleen, it withers away by the time a child with sickle cell disease is about five years old. Although people can live without their spleens, they are more at risk of certain types of blood-borne bacterial infections.
As soon as children are diagnosed with sickle cell disease, some as early as birth, they are put on daily antibiotics to prevent an infection. At an appropriate age, they will receive extra immunizations. This also means that the presence of a fever in a person with sickle cell disease could indicate a bacterial infection and such situations are considered a medical emergency that requires prompt treatment with antibiotics and sometimes even hospitalization.
A normal red blood cell lives in the body for about 120 days, while sickle cells live for about 10 to 20 days. The body is constantly destroying the sickle cells and working to produce fresh red blood cells. This can lead to chronic anemia, where the blood is unable to carry enough oxygen to all parts of the body. The common effects of chronic anemia are ongoing tiredness, pale skin, weakness, and delayed growth in development in children.
A crisis occurs when enough crescent moon shaped sickle cells jam up in a blood vessel, causing a disruption of normal blood flow. The body tissues downstream of the blockage lose oxygen and begin to die, which causes, in some cases, severe pain.
If not promptly treated, the loss of oxygen can lead to permanent damage to affected areas. The most serious and really the most relatively common outcome of sickle cell disease is a stroke. This can occur in children as young as two years old.
To prevent crisis, people with sickle cell disease must stay well hydrated and avoid rapid temperature changes. Children often cannot play outside in winter. They are also asked to avoid intensive exercise, eat a balanced diet, stay well rested, and avoid smoking.
They are required to take a special medication every day to decrease the number of sickle cells the bone marrow produces and avoid crises. The only cure for sickle cell disease is a bone marrow transplant, which, by the way, does not occur very often because of a lack of an appropriate donor. Even though we have a bone marrow registry connected to worldwide donors, the best chances of an acceptable match would actually be a person's siblings.
National Sickle Cell Awareness DayPrivate Members' Business
The Assistant Deputy Speaker Carol Hughes
I want to interrupt the hon. member for just a moment. I do not mean to throw him off. There is quite a bit of talking going on and I am having a hard time hearing this very interesting speech. I am hoping that everyone will listen, and hopefully take as much interest as I have in it. I will let the hon. member continue.
National Sickle Cell Awareness DayPrivate Members' Business
February 8th, 2017 / 6:30 p.m.
Conservative
Kevin Waugh Conservative Saskatoon—Grasswood, SK
Mr. Speaker, I have this booming voice and usually everybody listens. I guess I will tone it down for the rest of this speech.
Some people with very severe sickle cell disease require frequent blood transfusions every three to six weeks. This procedure uses a machine that separates and discards the patient's own red blood cells, while transfusing the non-sickle donor blood into the person. Because they are receiving so much donor blood on a frequent schedule, they require blood that is phenotypically similar to their own blood. This means a person with African heritage requires blood donated from a person with the same heritage. Thus, finding an appropriate donor is often an issue in Canada, although it is improving.
Once patients are started on scheduled blood transfusions, they also have to start medications to decrease the amount of iron that builds up in their body, which is a side effect of frequent transfusions. This treatment, as we all know, is very expensive, and often starts with a pump that releases the medication slowly into people through needles in their abdomens. Unfortunately, they are required to have the pump running, sometimes from eight to 24 hours a day.
One of the biggest challenges for managing sickle cell disease is when a person in crisis or with a fever sees a health care practitioner who is not familiar with the disease. Any delay in treatment can be life-threatening and, unfortunately, often is.
I have learned that in Saskatchewan we do not track the number of people with sickle cell trait, although in the last year the pediatric hematology met 14 new children in our province of Saskatchewan with carrier status. They now follow 17 children living in Saskatchewan, and many in my riding of Saskatoon—Grasswood, with the full sickle cell disease, a population, I might add, that has increased by 30% in the last nine months.
In Saskatchewan, sickle cell disease is primarily found in people who have immigrated to Canada or are first-generation Canadians. Many of the new Canadians are actually unaware of their sickle cell status, until arriving in Canada and taking their child into a hospital with a crisis. This ultimately leads to a diagnosis of sickle cell disease for the person in crisis and a diagnosis of sickle cell trait for the rest of the family, even though the family is from a country with high levels of sickle cell disease.
We have many volunteers in my city of Saskatoon. In fact, they are arranging a blood drive targeting people with African, Caribbean, East Indian, Middle Eastern, and Mediterranean heritage. That will take place this March. We will have a big donate blood awareness.
The Sickle Cell Disease Association of Canada is planning to begin advocating for expanded newborn screening in my province of Saskatchewan, which would include testing for sickle-cell anemia. Remember, as the number of people with sickle cell trait increases in Canada, there is more risk of children being born with sickle cell disease.
As I see it, there are three important things we can do to combat this disease. First and foremost, we all agree we can devote more resources to research and finding a cure. We can raise awareness, like we have tonight, through Bill S-211. Last, we can encourage all regular blood donations in our communities.
Gary Anandasangaree Liberal Scarborough—Rouge Park, ON
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 hemoglobin. Hemoglobin 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 hemoglobin causes red blood cells to become rigid and sickle shaped due to a hardening of the irregular hemoglobin 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 patients' 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.
Darren Fisher Liberal Dartmouth—Cole Harbour, NS
Mr. Speaker, I am delighted to rise today to speak to Bill S-211, an act respecting national sickle cell awareness day. Senator Jane Cordy, from my riding of Dartmouth—Cole Harbour, has worked tirelessly on this important bill, and I commend her for the hard work she has put in to see the bill to fruition. I understand that there is a rumour that she may be nearby.
Bill S-211 has been unanimously supported, without amendment, in the Senate and thus far throughout this House. I would like to thank the many members who have spoken on sickle cell in the House during the process.
Let us recap. Sickle cell predominantly affects those with diverse ethnic backgrounds, including African, Caribbean, Mediterranean, Middle Eastern, South American, and South Asian. It is a hereditary genetic disease that features abnormal hemoglobin. The abnormality causes crescent-shaped red blood cells, which have a shortened life span. They clog blood vessels and starve the body's ability to deliver oxygen to its organs.
This disease is debilitating. Sufferers experience extreme pain, are often bedridden, and have reduced life expectancies. Those with sickle cell routinely have 10 to 20 blood transfusions a month. This disease does not have a cure, and over 5,000 Canadians are living with the disease every day.
There is a serious lack of awareness of sickle cell, and as I mentioned, sickle-cell anemia disproportionately affects minorities. Just this week, I met with members of the Black Health Alliance, who told me that Canada lacks nationwide race-specific data and that diseases affecting minorities are often not as researched as others. I firmly believe that a bill like Bill S-211, which promotes awareness and gets people talking, will help this important cause.
Sickle cell disease affects almost 100 million people worldwide, yet many members and constituents have come up to me since I sponsored the bill and let me know that they had no idea what sickle cell disease was.
Sickle cell is the most common genetic disease in the world, and the lack of awareness is astonishing. Many Canadians are currently unaware that they are living with the sickle cell trait, meaning that they are hereditary carriers of the disease. Greater awareness and consistent newborn screening in all provinces and territories would help. The Sickle Cell Disease Association of Canada is currently advocating for a national newborn screening program, which would also help identify carriers of this trait.
Some unknowing sickle cell sufferers have been dismissed as would-be patients looking for pain killers. When left untreated, sickle cell disease is often fatal.
June 19 has been recognized as World Sickle Cell Day since 2008. By joining me in passing Bill S-211 ,we can increase public knowledge and bring awareness to the struggle sickle cell disease sufferers live with every day. Better awareness leads to better research and understanding, and better research will lead to more compassion and better health care for those with sickle cell disease.
I ask all members of the House to join me in supporting Bill S-211 to establish June 19 as national sickle cell awareness day.
National Sickle Cell Awareness DayPrivate Members' Business
The Assistant Deputy Speaker Carol Hughes
The question is on the motion. Is it the pleasure of the House to adopt the motion?
National Sickle Cell Awareness DayPrivate Members' Business
Some hon. members
Agreed.
No.
National Sickle Cell Awareness DayPrivate Members' Business
The Assistant Deputy Speaker (Mr. Anthony Rota) Carol Hughes
All those in favour of the motion will please say yea.
National Sickle Cell Awareness DayPrivate Members' Business
Some hon. members
Yea.
National Sickle Cell Awareness DayPrivate Members' Business
National Sickle Cell Awareness DayPrivate Members' Business
Some hon. members
Nay.
National Sickle Cell Awareness DayPrivate Members' Business
The Assistant Deputy Speaker (Mr. Anthony Rota) Carol Hughes
In my opinion the yeas have it.
And five or more members having risen:
Pursuant to Standing Order 93, the recorded division stands deferred until Wednesday, February 15, 2017, immediately before the time provided for private members' business.
Pursuant to an order made on Thursday, February 2, the House shall now resolve itself into committee of the whole to consider Motion No. 11 under government business.
I do now leave the chair for the House to go into committee of the whole.
The House resumed from February 8 consideration of the motion that Bill S-211, An Act respecting National Sickle Cell Awareness Day, be read the second time and referred to a committee.