Bill S-211 (Historical)

National Sickle Cell Awareness Day Act

An Act respecting National Sickle Cell Awareness Day

This enactment designates the nineteenth day of June in each and every year as “National Sickle Cell Awareness Day”.

National Sickle Cell Awareness Day Act

[Len Webber, Conservative, Calgary Confederation, AB]

Mr. Speaker, I am pleased to rise today to contribute to the debate on Bill S-211. The proposed legislation before us today will recognize June 19, on an annual basis, as national sickle cell awareness day.

Approximately 2,000 people living in Canada today have sickle cell disease. Increased awareness of their disease would be beneficial, given the low level of public knowledge at this time. It is a hereditary disease. It is not contagious. Carriers are usually not sufferers of the disease, but in combination with a carrier spouse, the disease usually becomes apparent in their offspring. This disease is most common among those with ancestors from India, Saudi Arabia, the Mediterranean, the Indian subcontinent, and the Sub-Saharan countries in Africa. However, it is still found in other cultures as well. Just to give people an idea, there are an estimated 43 million carriers, with 3.2 million people having the disease because both parents were carriers.

What is sickle cell disease? It is a group of red blood cell disorders. Those with the disease have abnormal hemoglobin. As many know, hemoglobin is the part of the red blood cells that carries vital oxygen throughout the human body. We know how important it is that tissues in the body receive a steady and life-sustaining supply of oxygen to work well. Hemoglobin takes the oxygen from the lungs to the parts of the body that need it. Normal cells are a disc shape, sort of like a donut. This shape allows the cells to be flexible. This flexibility and shape allows the cells to travel easily through blood vessels throughout the body.

Sickle hemoglobin is different. It forms stiff rods within the red cell, and this changes the cell's shape to something more like a crescent or sickle shape. As members can imagine, this creates enormous problems. The sickle-shaped cells result in blockages because the cells are stiff and unable to pass through the vessels easily. These resulting blockages mean that vital oxygen stops reaching the parts of the body that need it.

What impact does this have on the person with the disease? A lack of oxygen results in attacks of sudden and severe pain throughout the body. It is a horrible condition. These pains occur without warning, and often result in hospitalization. The pains usually last five to seven days. While not always the cause, it has been noted that pain crisis can be triggered by temperature changes, stress, dehydration, and even living in high altitudes. Of course, any infection that normally causes a rise the number of red blood cells triggers the disease as well.

Fortunately for most children with the disease, pain usually subsides between pain episodes. Nonetheless, many children known to have the disease take penicillin daily to help the immune system, and face a life-long regimen of daily folic acid. For teens and adults, the pain is usually chronic. The effects of chronic pain are well know. They have a huge impact on the education, the employment, and the human mind of the sufferers.

Due to the lack of oxygen to vital organs on a regular basis, sickle cell disease often begins to cause long-term damage to vital organs. It is common for those with the disease to develop serious issues with their skin, their brain, their bones, their spleen, their heart, their kidneys, their liver, their lungs, and even their eyes. The spleen is particularly susceptible because of its narrow blood vessels and its basic job of clearing old red blood cells.

If this was not enough, there is another layer of cruelty to this disease. Normal red blood cells have a typical 90 to 100 day existence. Sickle cells last only about 10 to 20 days. Imagine what a toll this takes on the human body when it has to replenish red blood cells at 10 times the normal rate. When the body cannot keep up, which is often, there is a shortage of red blood cells and this results in the sickle cell anaemia. The most visible side effect is fatigue. As I mentioned before, this also adds to the pain, the long-term organ and tissue damage, and the toll the disease takes.

Sadly, this disease is a lifelong illness, and when I say “lifelong”, we must not kid ourselves. Lifelong is not a happy story either. Sickle cell disease shortens lives, but it depends greatly on where one lives and one's access to help.

In first world countries like the United States, life expectancy can range greatly, from 40 to 60 years. This is about four times longer than it was 40 years ago. Now, about 90% of those with the disease can expect to see their 20th birthday, and 40% of those will die by age 50.

Is there a cure? There is a treatment and it is called hematopoietic stem cell transplantation, or HSCT. HSCT is the best-known option at this time. Unfortunately, most people with the disease are either too old for a successful transplant or do not have a genetically matched person able to make the donation. The success of this type of treatment is heavily dependent on having a great match.

For HSCT to be successful we need an early diagnosis and good medical treatment. Those who are willing to donate bone marrow should consider the positive effects that their donation could have. Given the need for the best match possible, I specifically suggest that those in affected cultural communities help promote donation of organs and tissue, bone marrow, and blood.

In the meantime, the disease takes it toll. There are increased chances of stroke, infection, gall stones, joint pain, low immunity, erectile issues, bone infection, leg ulcers, vision problems, preeclampsia in pregnant women, and heart and kidney failure.

The pain of the disease often means that patients are prescribed opioids to deal with the pain. The good news is that addiction among sickle cell patients to opioids is not any higher than among the general population. However, that said, opioid addiction is a reality for many with sickle cell disease. We have heard a lot in the House recently about the effects of opioid addictions, and it is alarming. This type of addiction is often deadly, and even when it is not, it results in many other significant problems for patients and their families.

There are an estimated 5,000 Canadians living with the disease and the rate is increasing. There is prenatal screening, but with the knowledge comes the difficult decisions that parents must consider, which I cannot imagine.

The Sickle Cell Disease Association of Canada does a lot of advocacy and awareness work. I applaud it for its efforts, which have have gone a long way toward bringing this disease into the fore and making it better known in our society. The association faces an uphill battle in finding a cure. Research dollars are not easy to come by, especially for a disease that is most prevalent in parts of the world that are not able to attract the attention of major pharmaceutical companies. It is still a disease that is very much not discussed, even within the communities most affected.

However, things are improving. There is an increase in research funding and awareness is slowly building.

Passing this legislation would go a long way to normalizing discussion about the disease. It would show those with the disease that we care and would help to educate those around them about their disease.

I will be honest that I knew nothing about this disease until I prepared for this speech. As I learned more about sickle cell disease and the thousands of Canadians who suffer from it, I wanted to share my comments with others. I applaud the hon. member for presenting this bill and the work that he has done on this. I give him my thanks. I am happy that I was able to talk a bit about it here today to help share awareness.

Let us support this legislation and keep spreading awareness and education.

[Darren Fisher, Liberal, Dartmouth—Cole Harbour, NS]

moved that Bill S-211, An Act respecting National Sickle Cell Awareness Day, be read the second time and referred to a committee.

Mr. Speaker, I am proud to rise today to speak to Bill S-211, an act respecting national sickle cell awareness day. Bill S-211 seeks to establish June 19 as national sickle cell awareness day, aligning Canada with international organizations such as the United Nations and the World Health Organization, both of which already recognize this date as World Sickle Cell Day.

I would like to commend, if I could, Senator Jane Cordy, who is from my home riding of Dartmouth—Cole Harbour, for introducing this important bill, and I would like to thank her for allowing me the honour to sponsor the bill in this House.

Coming here to Ottawa as a member of Parliament not only means that I get to meet fascinating people with fascinating stories to tell, but it also means that every day is a constant learning experience. I am hopeful that neither of these experiences will change during my time here.

Many people have not heard of sickle cell disease, and if they have, they do not understand what it means to have it. Allow me to briefly describe what sickle cell disease, also known as sickle cell anemia, is. Sickle cell disease is a hereditary genetic disease and refers to the presence of abnormal hemoglobin, resulting in crescent-shaped red blood cells. Normal red blood cells are doughnut-shaped, and move easily throughout the body's circulatory system, delivering oxygen to the organs. Healthy red blood cells carry out this important life function for up to 120 days, whereas sickle cell diseased cells have a lifespan of only about 20 days.

Sickle-shaped red blood cells unfortunately do not float easily in blood vessels and regularly become stiff and eventually break apart. The diseased red blood cells clog in the vessels and starve the body's ability to deliver oxygen to the organs. Because the organs are continually not receiving adequate oxygen, the result is severe pain, especially in the bones. Most sufferers feel that pain in their shoulder and hip joints as well as in their chests. I am told that the pain is truly debilitating.

Canadians affected by sickle cell disorders are those with diverse ethnic backgrounds: African, Caribbean, Mediterranean, Middle Eastern, South American, and South Asian. I was amazed to find out that it is the most common genetic condition in Canada.

The disease currently affects approximately 5,000 Canadians, and the number of Canadians diagnosed with this disease continues to increase. Here is a statistic that really stuck out for me. The Sickle Cell Disease Association of Canada estimates that one out of every 2,500 children will be born with this disease.

People affected by sickle cell anemia are living in chronic pain. Some are confined to their homes, requiring constant care, while others can live mostly normal lives. However, even those living close to normal lives, live with the realization that life with constant pain is most likely on the way. That pain will limit mobility and affect their quality of life. I am sad to say that people with sickle cell disease have a reduced life expectancy, 30 years lower than the national average. There is currently no cure for sickle cell disease. Research is desperately needed.

In late September, I met with Ms. Rugi Jalloh, president of the Sickle Cell Disease Association of Nova Scotia, along with her delegation, Mr. William Njoku, Mr. Ricardo Peguiro, and Dr. Jacob Pendergrast. Each of them had compelling and personal stories of how this disease has affected their health or the health of their family members.

Rugi herself has the sickle cell trait, meaning that she is a hereditary carrier of the disease. Though she does not suffer from any symptoms of the disease, a child of hers would have a 50% chance of inheriting the sickle cell trait, or a 25% chance of inheriting the disease itself. Imagine having to live with that frightening statistic.

William told us of how he lost a friend to the disease recently, and his grief was compounded by the fact that his sister is one of many sickle cell disease sufferers who live in chronic pain. She is mostly bedridden and receives home care. His sister has a diminishing quality of life.

As Dr. Pendergrast emphatically explained in our meeting, sickle cell disease does not have a cure. Researchers are working on therapeutic options for sickle cell disease sufferers. Dr. Pendergrast explained that sickle cell disease patients can receive regular blood transfusions and can take a powerful drug called hydroxyurea to manage their chronic pain. This may sound like an easy, solid solution for sufferers of sickle cell disease, but these folks are routinely having 10 to 20 blood transfusions a month. This is yet another reason why we must encourage Canadians to donate blood when possible.

It is important to note that sickle cell anemia is an inherited disease. We cannot catch it from someone. It cannot be communicated from one person to another. Due to a lack of awareness in Canada, I learned that many people who carry the sickle cell trait had no idea they did until they had a child diagnosed with the disease. I firmly believe that raising awareness could change this. Due to the lack of awareness, there are Canadians out there who are living with this disease and remain undiagnosed. These people are living with chronic pain and sometimes have their symptoms dismissed as just those of another would-be patient asking for pain killers. When left untreated, sickle cell disease can be fatal. Canadians in high-risk ethnicities for sickle cell who feel they have symptoms or feel that they have been misdiagnosed should be encouraged to take a simple and pain-free blood test. A diagnosis is that simple.

Earlier I mentioned that there is a high risk of babies born to sickle cell carriers inheriting the disease. Luckily, some Canadian provinces are moving in the right direction. I am pleased that newborn screening for sickle cell disease is available in the Yukon, British Columbia, Ontario, New Brunswick, Prince Edward Island, and now my home province of Nova Scotia.

I understand that the Sickle Cell Disease Association of Canada is advocating for a national newborn screening program, which would also help identify carriers with traits.

Since 2008, June 19 has been recognized internationally as World Sickle Cell Awareness Day. The awareness day was created to increase public knowledge and bring awareness to the struggle sickle cell disease sufferers endure on a daily basis. This date was chosen to commemorate the day on which a resolution was adopted by the United Nations General Assembly, recognizing sickle cell disease as a public health concern.

Sickle cell disease affects almost 100 million people worldwide, and according to the World Health Organization, it is one of the main causes of death for children under five years of age.

I am sure many folks out there would ask why we need to make another day of awareness for a cause. Why should Bill S-211 matter to Canadians? When it comes to health issues, especially when it comes to health issues that generally affect very specific demographics, we must raise awareness. There are Canadians out there who do not even know that they carry the sickle cell trait. Awareness will ensure that more folks are tested, that we have a better understanding of what it means when our friends or family are diagnosed with sickle cell, and what it means if we ourselves are diagnosed. By raising awareness, we bring attention to this serious hereditary genetic disease. We keep it top of mind among our best researchers, our fundraisers, and our communities.

I want to thank all of my colleagues from throughout the House for listening to me speak on Bill S-211. After sitting in my office and listening to the stories of those affected and suffering from sickle cell disease, I jumped at the opportunity to sponsor and support this bill.

Canada is a world leader when it comes to championing human rights and maternal and newborn health. We are known throughout the world for our optimism, compassion, and empathy. We have the ability here to shine a light on this disease and to change the lives of those who are suffering. If we, as parliamentarians and Canadians, were to adopt June 19 as national sickle cell awareness day, we would be lending a powerful united voice to the world stage in recognizing the devastating effects of this disease. Together, we can honour those who suffer in silence, those who spend 10 to 20 days per month sitting in hospitals getting blood transfusions, and those babies who are born every day with this debilitating disease.

I ask hon. members to join me in supporting Bill S-211 to establish June 19 as national sickle cell awareness day.

[The Chair, Liberal, Ginette Petitpas Taylor]

We'll get our short meeting started.

We're here today to consider two items, Bill S-211, an act respecting national sickle cell awareness day, and Bill S-217, an act to amend the Criminal Code (detention in custody). We're not going to be considering Bill S-225 today. That will be done at our next meeting.

[Darren Fisher, Liberal, Dartmouth—Cole Harbour, NS]

moved that Bill S-211, an act respecting National Sickle Cell Awareness Day, be read the first time.

I am very pleased to rise in this House to introduce Bill S-211, an act respecting National Sickle Cell Awareness Day, which, about two weeks ago, passed in the Senate unanimously and without amendment.

On September 29, my office met with Rugi Jalloh, president of the Sickle Cell Association of Nova Scotia, along with her delegation. Each of them had compelling and personal stories of how this disease has affected their health or the health of their family members.

People with sickle cell disease frequently experience extreme pain in their bones. One person we met with has a sister who is mostly bedridden and requires home care. Another person we met had lost two family members to this disease.

June 19 is recognized as World Sickle Cell Day by many organizations, including the World Health Organization. Bill S-211 seeks to add our voice to this important cause by marking June 19 as National Sickle Cell Awareness Day in Canada.

I ask that my colleagues on all sides of this House join with the Senate in the speedy passage of the bill.

(Motion agreed to and bill read the first time)