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.