moved that the bill be read the third time and passed.
Madam Speaker, I am proud to rise again 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, bringing Canada on the same level, and in line with, international organizations like the United Nations, African Union, and the World Health Organization, all of which consider June 19 as World Sickle Cell Day.
Bill S-211 has been wholeheartedly supported by all members in this House and all senators in the other place, but no person has championed Bill S-211 more than Senator Jane Cordy of my home riding of Dartmouth—Cole Harbour.
Senator Cordy is a strong advocate for Canadians and has brought the voices of those affected by sickle cell disease to Ottawa. Senator Cordy understands the strength of awareness. We have the ability in this House, and in the other place, to bring Canada-wide awareness to sickle cell disease. Senator Cordy was back in Nova Scotia last week, and during a speech at a sickle cell workshop she said:
My fervent hope is that when S-211 passes it will provide the opportunity for Canadians and especially those at all levels of government to learn more about sickle cell. The more we know about an issue, the more power we have to make changes, whether that change is creating policies and laws or changing our understanding.
In the spirit of that quote, I will do my best here to make sure that all members in this House understand what sickle cell disease, also known as sickle cell anemia, is, and what it means to be affected by it.
Most folks out there, if they were asked, probably would not know what sickle cell disease is. It is a disease affecting approximately 5,000 Canadians and their families. The number of Canadians diagnosed with the disease continues to increase. The Sickle Cell Disease Association of Canada now estimates that one out of every 2,500 children will be born with this disease.
Sickle cell is the most common genetic disease in the world. Sickle cell refers to the presence of abnormal hemoglobin resulting in crescent-shaped red blood cells. Unlike normal, doughnut-shaped red blood cells, sickle cells struggle to move easily throughout the body's circulatory system, and struggle to deliver oxygen to the organs. Sickle cells have a very limited lifespan compared to healthy red blood cells. The diseased sickle cells become stiff and break apart as they die, clogging the vessels and starving the body's ability to deliver oxygen to the organs. As the organs are starved for oxygen, patients experience extreme pain, especially in their bones.
I was reading an anonymous Q and A with sickle cell patients the other day where one participant, a young person, explained the nature of sickle cell pain so vividly. It really put the nature of the illness into perspective and I am going to share it now.
This person said, “You know the way the sky and the atmosphere changes gradually just before a major storm? That's how I feel my body changing just before an onset of pain crisis. It sucks knowing that it's coming and there's nothing you can do about it. When the pain hits you it takes everything away from you—you have no thoughts, desires, knowledge of anything, everything within you is focussed on trying to get rid of the pain. Then the pain takes over. Completely. It might just be your arm, or your feet, or hips, or chest, but it chokes the life out of you, literally... The strongest painkillers don't really “kill” the pain—it only keeps it at bay and temporarily stops it from choking the life out of you. I am sure you've noticed the labored breathing just before the pain relievers take effect. It's not for show. You struggle to breathe, to live.”
Most of these people are experiencing lifelong debilitating pain. Some people affected by sickle cell anemia are confined to their homes, requiring around-the-clock care. Many folks with sickle cell are receiving regular blood transfusions and are taking pharmaceuticals to manage chronic pain. Numerous blood transfusions are not uncommon for someone with this disease. This speaks to the importance of donating blood. Canadian Blood Services calls donating blood “giving the gift of life”, and it could not be truer. By donating blood, we could be giving someone who suffers with sickle cell disease a longer lifespan.
This disease primarily affects those with diverse ethnic backgrounds: African, Caribbean, Mediterranean, Middle Eastern, South American, and South Asian. In Canada, sickle cell disproportionately affects members of the African Canadian community.
Some time ago, I met with the Black Health Alliance and learned that black people were overrepresented among people with illness. I learned that discrimination could be one of the major reasons why sickle cell anemia lacked awareness. That lack of awareness results in individuals being underserved by the medical community.
I have heard loud and clear from folks, like my friend Rugi Jalloh, president of the Sickle Cell Disease Association of Nova Scotia, of the discrimination those patients with this disease experience. This disease can be debilitating and obvious, or debilitating and hidden.
These are folks like 16-year old Canadian Adeniyi Omishore, who says, “This disease is very limiting and many on the street look at me weirdly....Some kids in school even make fun of me.” Contrast that with this anonymous statement by a Canadian sickle cell disease patient who said, “A good hospital stay is whenever I'm not perceived as a drug seeker/junkie. A 20 year old black kid asking for heavy doses of narcotics always triggers an alarm. I've been refused care many times because of this.”
This shows the importance of increasing sickle cell disease awareness across our country, awareness for all health care providers to recognize and understand this disease, and the importance of recognizing discrimination and how it affects people with sickle cell. Time and again, when learning about this disease, I have heard that folks have gone to the hospital for care only to be turned away and treated as junkies looking for a fix. For someone to be turned away at the emergency room because he or she may appear to be an addict and not someone in major pain, we must do better. There are organizations across the country working hard to raise awareness.
The Sickle Cell Disease Association of Canada remains focused on building awareness of sickle cell disease. It is working to enhance methods of identification, diagnosis and treatment. It also partners with universities and researchers to help toward a cure.
The Sickle Cell Foundation of Alberta is doing great work by helping patients deal with the condition and helping improve their quality of life.
The Sickle Cell Anemia Association of Quebec is working to raise awareness among at-risk groups of this disease. It is promoting research and education, and working to support sufferers and their families.
The Sickle Cell Association of BC, led by Adobie McAllister, is working on an education handbook for sickle cell patients to help better inform them of treatments and to help handle their concerns.
The Sickle Cell Association of Ontario has educated the community about sickle cell and aims to reduce the incidence of sickle cell within at-risk communities. Its initiative on poverty deserves recognition also as chronic illness and poverty often go hand in hand.
As I mentioned, in my home province of Nova Scotia, the Sickle Cell Association of Nova Scotia, led by Rugi Jalloh, is working hard to support individuals with sickle cell and their families financially and morally. I met with this society and I was blow away by its incredible advocacy. I will admit that before our meeting, I knew very little about this disease.
The Government of Canada recognizes the importance of rare disease research and has invested $92 million since 2010. Close to $1.3 million have been spent on sickle cell disease research, still some Canadians are living, undiagnosed, with this disease. Many Canadians have no idea they carry the sickle cell trait. Children of hereditary carriers of the disease who do not suffer any symptoms unfortunately have a 50% chance of inheriting the sickle cell trait and a 25% chance of inheriting the disease. These are frightening statistics and they speak to the importance of raising awareness. I firmly believe that, as a country, we can and will do better.
Some provinces are doing it right by automatically screening newborns for diseases like sickle cell, but many provinces still do not. We have a nationwide patchwork of testing programs, which is leaving Canadians with diseases like sickle cell undetected. Canadians are slipping through the cracks. This matters. If left untreated, sickle cell anemia not only leaves people with extreme pain; it can lead to organ damage, organ failure, and even death.
If members leave here remembering one thing they can share with their constituents today about sickle cell, I hope they will remember the importance of screening. We must encourage the screening of young children who are moving to Canada from countries with substantially higher risk of having sickle cell. We must screen all newborns in Canada for this disease and its trait. No one in Canada with this disease should go undiagnosed, and no one should go untreated. The earlier we diagnose, the better the outcome for individuals to lead a normal life.
Yes, Bill S-211 is an awareness bill, but awareness and understanding often lead to more research and less discrimination. For example, on the Sickle Cell Awareness Group of Ontario's website, Doreen Alexander wrote:
As a nurse, unfortunately I have heard the cries of many sickle cell patients in pain who are often misunderstood or dismissed by health care professionals while in desperate need for support.
Greater awareness could lead to more understanding and better training across Canada for health care staff. More people knowing about and understanding this condition could mean better, more supportive health care. Stronger research matters to sufferers of sickle cell disease. Every day, researchers are learning more about this debilitating disease. I have heard that doctors in Alberta are making progress with stem cell research and transplants, but we must continue to do more.
I would like to thank all my colleagues throughout the House for listening to me speak today about this and for their support, both past and continued, for Bill S-211. I ask all members in the House to continue supporting Bill S-211, an act respecting national sickle cell awareness day. Let us send a strong message to those who suffer with sickle cell that we support them, that we believe in stronger awareness for this disease, and that we hope greater awareness will keep sickle cell top of mind among our best researchers and health care providers.