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”.

Old Age Security Act

[Darren Fisher, Liberal, Parliamentary Secretary to the Minister of Seniors]

Mr. Speaker, I first met the member when I was moving a bill through the House of Commons, Bill S-211, on sickle cell awareness. I know she cares. She is a good MP, and she cares about people.

She talks about supporting seniors, yet Bloc members have voted against seniors in the House for years. They voted against taking the age of eligibility for retirement benefits from 67 to 65 years of age. They voted against that.

I would ask the member why she felt that seniors should have to work two more years to access the benefits they deserve and which they contributed to for decades. It surprises me that someone who cares so much about seniors would vote against seniors on a regular basis.

National Sickle Cell Awareness Day

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

Madam Speaker, over the weekend we celebrated National Sickle Cell Awareness Day in Canada, and today I am rising in honour of those affected by sickle cell disease and to honour the incredible organizations and volunteers who work so hard to support people living with it.

When I first joined Senator Jane Cordy and sponsored Bill S-211, the National Sickle Cell Awareness Day Act, I had the honour of really getting to know the incredible advocacy organizations across Canada. Groups like the Sickle Cell Disease Association of Atlantic Canada, the Sickle Cell Association of Ontario and the Sickle Cell Disease Association of Canada were doing everything they could to raise awareness. They knew that with greater awareness come more support, more research, better treatments and possible cures for this disease.

I am so thankful for the privilege to work with the sickle cell community, and I ask everyone in this House to please rise and join me in honouring those who live with sickle cell disease and the incredible organizations across Canada that support them.

[Heather McPherson, NDP, Edmonton Strathcona, AB]

Thank you, Mr. Chair.

What I'm reflecting on as we listen to the testimony today is that all of us recognize that more must be done to help the Uighurs in China, and I think we can all agree that more needs to be done faster. In terms of the legislation, which we know has been in the mandate letter of the minister and which we know will be coming forward—hopefully and potentially soon—I have a quick question, perhaps for Mr. Patry.

We do know that a bill has come forward in the Senate. It is Bill S-211, an act to enact the fighting against forced labour and child labour in supply chains act and to amend the customs tariff. It is about to go to third reading.

I know, Mr. Patry, that you were a witness at the committee that was looking at this. I'm just wondering whether the Government of Canada is considering what is in this legislation for the legislation that they will be bringing forward, and whether or not it makes sense for us to move very quickly to get this Senate legislation put forward, so that we would have at least something in place in the short term while we wait for the minister to bring forward legislation, perhaps at a later date.

[The Speaker, Liberal, Geoff Regan]

I have the honour to inform the House that when the House did attend Her Excellency the Governor General in the Senate chamber, Her Excellency was pleased to give, in Her Majesty's name, the royal assent to the following bills:

Bill C-305, An Act to amend the Criminal Code (mischief)—Chapter 23.

Bill S-211, An Act respecting National Sickle Cell Awareness Day—Chapter 24.

Bill S-3, An Act to amend the Indian Act in response to the Superior Court of Quebec decision in Descheneaux c. Canada (Procureur général)—Chapter 25.

Bill C-60, An Act to correct certain anomalies, inconsistencies and errors and to deal with other matters of a non-controversial and uncomplicated nature in the Statutes of Canada and to repeal certain Acts and provisions that have expired, lapsed or otherwise ceased to have effect—Chapter 26.

Bill C-23, An Act respecting the preclearance of persons and goods in Canada and the United States—Chapter 27.

Bill C-277, An Act providing for the development of a framework on palliative care in Canada—Chapter 28.

Bill C-67, An Act for granting to Her Majesty certain sums of money for the federal public administration for the fiscal year ending March 31, 2018—Chapter 29.

Bill S-236, An Act to recognize Charlottetown as the birthplace of Confederation—Chapter 30.

Bill C-36, An Act to amend the Statistics Act—Chapter 31.

National Sickle Cell Awareness Day Act

[The Assistant Deputy Speaker, Liberal, Anthony Rota]

It being 5:30 p.m., the House will now proceed to the taking of the deferred recorded division on the motion at third reading stage of Bill S-211, under private members' business.

Call in the members.

The House resumed from November 20 consideration of the motion that Bill S-211, An Act respecting National Sickle Cell Awareness Day, be read the third time and passed.

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

Mr. Speaker, I am proud of my fellow members in the House for showing strong support for Bill S-211, an act respecting national sickle cell awareness day, including the member across the way who just spoke. When all parties work together for the good of all Canadians, we have the ability to accomplish so much in this place.

Throughout all of the stages of this bill, I have been moved by the comments and personal stories from other members. I found that many members in this House and citizens across Canada have a personal connection to sickle cell disease and other rare blood disorders. We know that Canada is a world leader when it comes to championing human rights, along with maternal and newborn health. Canadians are compassionate and empathetic.

It was compassion and empathy that led Senator Jane Cordy to champion this bill through the other place. She has worked very hard to ensure that we all support those who are suffering with sickle cell disease. The sickle cell community is lucky to have a friend in Senator Jane Cordy. Senator Cordy's work has ensured that the bill before us today is already raising awareness. This bill matters to those who are suffering in Canada with sickle cell disease, and it deeply matters to their families and caregivers.

Awareness bills matter. A previous speaker alluded to this. Some folks may say that we parliamentarians create too many days of awareness, but I beg to differ. I believe they are wrong. Greater awareness will lead to less discrimination of those who are affected with this disease. We know that when it comes to health issues, especially issues that tend to affect specific demographics, we can stand together and raise awareness.

We know there are Canadians who do not know they carry the sickle cell trait. Stronger awareness will ensure that all Canadians have a better understanding of just what it means when someone we know has been diagnosed with sickle cell. We must continue to bring awareness to this serious hereditary genetic disease. It is estimated that around 5,000 people suffer from sickle cell disease in Canada. They are 5,000 very important voices.

I ask my fellow parliamentarians to continue to support Bill S-211, and for all Canadians from coast to coast to coast to join us in this place on June 19, 2018, as we observe national sickle cell awareness day in Canada. Let us send our strong and unified voices from this House to those who suffer from sickle cell disease.

The House resumed from October 27 consideration of the motion that Bill S-211, An Act respecting National Sickle Cell Awareness Day, be read the third time and passed.

National Security Act, 2017

[The Deputy Speaker, Conservative, Bruce Stanton]

The hon. member for Sherwood Park—Fort Saskatchewan will have five minutes remaining in his time for his comments on the motion before the House and, of course, the usual five minutes for questions and comments.

It being 6:30 p.m., pursuant to Standing Order 37, the House will now proceed to the consideration of Bill S-211 under private members' business, as listed on today's Order Paper.

National Sickle Cell Awareness Day Act

[Bill Blair, Liberal, Parliamentary Secretary to the Minister of Justice and Attorney General of Canada and to the Minister of Health]

Madam Speaker, I want to begin my remarks by building a little on the remarks made by my colleague from Whitby. She referenced a number of very important advocacy organizations for those who suffer from sickle cell disease, and it is important that we acknowledge their important work.

I would like to take the opportunity to bring to the House's attention another extraordinary organization in the city of Toronto. It is called Camp Jumoke. It is a charitable organization that has been operating since 1994. This is an organization that is entirely volunteer. It receives no government funding but does receive support from the community. Since 1994, it has organized camps every summer for children in our community suffering from sickle cell anemia. I want to acknowledge the extraordinary volunteers and the commitment of the organization for the great work it does. Over the past two decades, I have had the privilege of attending a number of events for this organization and of meeting the children who are affected by sickle cell disease.

As we deal with this issue and speak about declaring a day of awareness, it is important to keep in mind those young kids and their families who have been affected by this disease and to remember those who are working tirelessly in our communities to make a difference and support them.

Because of the nature of these kids' illness and the way they suffer, they miss, on average, 50 days of school each year. They are unable to participate in many things most kids take for granted. To have the opportunity to spend time with each other and experience the fun of a summer camp with people who understand the limitations their health condition places on them is extraordinary. It is a great privilege for the House to have an opportunity to call on all Canadians to keep at the forefront of their thinking those children, their families, and those who support them.

Now I will go to my prepared remarks. We welcome the chance to add our voice in support of Bill S-211. I want to reassure Canadians living with sickle cell disease that the government and the people of Canada support them and have their backs. This act respecting national sickle cell awareness day is a testament to our national commitment to increase awareness of sickle cell disease and to improve diagnosis and treatment as we work to find a long-term cure for those affected by this disease.

Sickle cell disease is a devastating disease, as I said, that cannot be ignored. It is diagnosed more than 100 times each year in this country when a baby is born with this rare blood disorder. Those children join the other 5,000 Canadians already living with this disease and the hundreds of millions of people like them suffering around the world.

These are people who learn to cope with tremendous pain from a disease that, to date, has eluded a cure. The pain episodes they experience are due to bone marrow necrosis. These are people who suffer frequent painful attacks that send them to hospital for blood transfusions and drug therapies to manage their disease. They are far more susceptible to infection and have an increased risk of stroke and vision loss. Perhaps most alarming is that these people expect to live shorter lives than other Canadians, because sickle cell disease can lead to serious bacterial infections and tissue death, which can frequently result in an early death. Life expectancy is calculated to be 30 years less than it is for most Canadians. Aside from the terrible loss of loved ones, Canadian society as a whole is shortchanged when this happens. First and foremost, we lose the valuable contributions of these individuals to our economy and our communities. We also pay the high cost to cover their frequent stays in hospital, an average of $20,000 per week for a one-week stay, and there are generally many more weeks than one.

This does not begin to capture the debilitating impact this disease can have on those individuals living with sickle cell disease and their families and friends. Few of us can imagine how harrowing the diagnosis of sickle cell disease must be, yet it is a reality that a significant proportion of the population knows only too well. Approximately 5% of the world's population carries the gene for sickle cell, which means that it is bound to surface in some Canadian families and communities.

In fact, given Canada's multicultural composition, it is sadly inevitable that we will see more babies born with this rare blood disorder. Studies suggest that the odds of a Hispanic person having sickle cell disease is one in 1,000, and that jumps to one in 500 for those of African ancestry. For a couple to have a child with sickle cell disease, both parents must be carriers. According to research, when both parents are carriers of the gene, each pregnancy they have has a one in four chance of the child being afflicted with sickle cell and a one in two chance that the child will be a carrier, even if he or she does not have the disease. The problem is that people with the sickle cell trait often do not know they have it, as they do not have the symptoms of the disease, even though they can pass the gene for the disease on to their children.

That is why we need all parliamentarians to lend their support to Bill S-211. It would create a national sickle cell awareness day each year on June 19 to promote awareness and to spur action to address this dreadful disease. A dedicated national disease day would help prospective parents understand the risks of being a carrier and potentially having a baby with sickle cell. It would also help to increase diagnosis among newborns to make sure that youngsters with sickle cell get the appropriate treatment as soon as possible. This can prevent the complications and improve the child's quality of life. Thanks to earlier advances in diagnosis and treatment, kids born with this inherited disorder can receive the right treatment and support as they grow up, to enable them to live active and productive lives.

Equally important, this national day would inspire researchers in their quest for a cure for sickle cell disease. As the parliamentary secretary noted earlier, some of this country's top scientists are already increasing our knowledge of these disorders and discovering new treatments. For instance, the Canadian Institutes of Health Research is involved in several clinical trials for the treatment of the disease, as well as in the treatment of sickle cell-related pain. This work is taking place under the International Rare Diseases Research Consortium, which we have helped to establish. The Canadian Institutes of Health Research is also engaged in international collaboration on rare-disease research through E-Rare. That is the European Union's main initiative to fund research into rare diseases. This collaboration is enabling scientists in different countries to work together on a common interdisciplinary research project. These are the kinds of hopeful steps that can be inspired by a national sickle cell awareness day each June 19 in Canada, critical steps that would lead to promising results that can improve the lives of Canadians living with this disease.

Therefore, I take this opportunity to call on all parties to release this potential by supporting the passage of this important bill. Let us be part of the solution to this perplexing health challenge by standing up for Canadians already living with the disease and by helping to ensure that we protect future generations from it.

[Celina Caesar-Chavannes, Liberal, Parliamentary Secretary to the Minister of International Development]

Madam Speaker, it gives me great pleasure to stand in this place, in solidarity with my colleague from Dartmouth—Cole Harbour, to support S-211, an act respecting national sickle cell awareness day. I also want to acknowledge Senator Jane Cordy who brought the bill forward and was a real champion for the legislation.

I want to take some time at the outset of my speech to thank the member from Dartmouth—Cole Harbour. As he said in his speech, he did not know anything about sickle cell before. I alluded in my previous question that I live with sickle cell trait.

Last night was a very difficult evening with me. I was talking to my kids on the phone. I am an Ottawa mom and they are Whitby kids. I kept thinking how tough it was sometimes to be a mom when I was here.

I had the opportunity to start thinking about writing this speech. I thought where else in the world would someone from Dartmouth—Cole Harbour, who had no idea about this disease, meet up with someone who lived with the trait of this disease and be able to work together, along with every other member, to raise awareness, do some incredible work, and amplify the voice of Canadians who suffer day in and day out with this disease. I cannot thank the member and the senator enough for their diligent work in bringing this forward. I am so proud to be here to see this go across the finish line.

Other members in the House have spoken to the thanks we should give to our researchers and medical professionals. With this bill and this day, I urge them to continue to ring the alarm around this condition. Members have spoken to the tremendous pain individuals go through when they appear at the hospital, looking for help. Oftentimes very young children arrive at the hospital in excruciating pain, asking for pain medication. The automatic dial is set, that these people are addicts.

I urge health care professionals and researchers to continue to talk to their colleagues and use June 19 as the day to tell them to turn the dial the other way, to show compassion and humanity for individuals, knowing they may have a condition about which we might need a little more awareness.

As I mentioned, I live with sickle cell trait. I do not have any symptoms of the disease and go through my normal life pretty much fine. However, this disease affects individuals of the Mediterranean, Middle Eastern, South American, and South Asian communities, and it disproportionately affects members of the black community. Many different people are affected and impacted by this condition.

It is so important to have a day like this for a couple of reasons.

One is to create that awareness and to continue the advocacy for newborn screening. The fact that it has a patchwork across the country really does a disservice to Canadians. Again, we are talking about young people with this condition who suffer excruciating pain.

Second, we want to ensure that people who live with this condition are also able to talk about it. We have heard that they may undergo 10 to 20 blood transfusions per month. There are only 31 days in a month. They spend more than half their time in hospital getting blood transfusions.

At this point, I would like to take a page from both of the individuals who spoke to this, to give a massive shout-out to the Canadian Blood Services, and encourage people to donate blood. It really does save lives and makes quality of life for people a lot better, especially when we are talking about this disease.

I am going to go back to the individuals, their caregivers and families living with this condition. I encourage people to use this day and every day to advocate, to talk to friends and to neighbours.

My colleague, the member for Sarnia—Lambton, said that it was a conversation we had in the workplace, at school, and at the dinner table. That is such a profound statement because we do not want this to just be politicians, researchers, doctors, or people who do not have access to everyday individuals. People live with this condition. They feel it. People should use this day to feel empowered to go out, talk to and advocate for themselves and their children, and tell their neighbours. They might need someone to give them a casserole a couple of days a month because they are in hospital. I have never made a casserole, but I could make a macaroni pie or something.

It gives people an opportunity to get together with their neighbours and really do what we do best as Canadians, and that is help each other out. Use this day to speak about it. Do not continue to suffer in silence or suffer alone.

I want to also speak to the importance of individuals in the community speaking to each other. Imagine being in hospital 10 to 20 times a month to get a blood transfusion. What does that do? That decreases a person's ability to go to school every day. It decreases people's ability to get good, stable employment. That decreases people's quality of life. If that happens, I assume these individuals need support. They need a community. They need, as they say, a village to help them in their suffering, in the transition they have with their family and their loved ones who are going through the condition.

It might be that a friend from school is able to bring homework home. It might be that individuals are able to get a hot meal from someone who shares that. It might be the fact that individuals are able to just breath for five minutes, because they are taking care of a child who is in exceptional pain.

Again, this bill and this day, June 19 would allow parents and loved ones the reprieve and the respite to say that they need help, or that they have this condition, or their sons or daughters or love ones have this condition.

Before I close, I want to give special kudos and shout-outs to the organizations that were mentioned by many of us today: the Sickle Cell Disease Association of Canada, the Sickle Cell Disease Association of Nova Scotia, and in particular, the Sickle Cell Association of Ontario.

Before getting to this place, I volunteered with a young woman in her nineties by the name of Lillie Johnson. Lillie Johnson is a force to be reckoned with and a staunch advocate for sickle cell disease. She received the Order of Ontario in 2011, the Toronto Public Health Champion in 2009, and was the first black director of Public Health. This woman is a tour de force in her advocacy for people with sickle cell. I worked in a research consulting firm. She solicited me to help her get the resources to advocate for research.

For my colleague who mentioned it, we do need continued and exceptional research dollars and funding for genetic conditions. We do need to continue to be that voice, to amplify the voices of those in our community who need our help, to continue to advocate for the funding to ensure Canadians can live the best possible quality of life.

I am so happy to stand with my colleague today. I am even happier right now to give a shout-out to his wonderful daughter, Ava, who is totally cool. I will do that right now.

The House resumed consideration of the motion that of Bill S-211, An Act respecting National Sickle Cell Awareness Day, be read a third time and passed.

National Sickle Cell Awareness Day

[Marilyn Gladu, Conservative, Sarnia—Lambton, ON]

Madam Speaker, it is a pleasure to rise in the House today to speak in favour of Bill S-211, an act respecting national sickle cell awareness day. This legislation seeks to designate June 19 national sickle cell awareness day in Canada. This is in line with many international groups that have also recognized the importance of raising awareness of this terrible disease. These include the African Union, the World Health Organization, and the United Nations, which designated this day for sickle cell disease in 2008.

There was a time when I was unaware of what went on in terms of the creation of these days and the benefits thereof, but since I have come to the House of Commons, nearly every day we have something presented as an awareness day for this or that topic. I have learned so much about the different needs of people suffering from various illnesses and about different causes. There is a lot of value in bringing forward and celebrating such a day when this kind of information can be brought to bear and the government can be informed of what the needs are to eradicate this terrible disease.

Today is not the first time sickle cell awareness has been brought before the House. A Nova Scotia senator brought a similar bill forward in early 2015. The same topic was brought forward by the current Minister of Science, who introduced Bill C-605 in 2010.

Designating June 19 national sickle cell awareness day would not give holiday status to this date. It would be used as a tool nationwide to raise awareness of this disease not only in the House but in schools, in workplaces, and at dinner tables across the country.

For these reasons, and many more, I would join my voice to those of my colleagues across the House and in the other House in favour of Bill S-211.

I would like to use my time today not only to show my strong support for the bill but to do everything in my power to educate Canadians about this little known disease.

Sickle cell disease is a condition people are born with. It is a hereditary disease caused by abnormal hemoglobin. Instead of being round like the letter o, in people with sickle cell disease, these cells look more like the letter c, similar to a farmer's sickle.

Hemoglobin is the part of the blood that carries oxygen and allows the vital organs to function. That ability is exactly what sickle cell disease affects. The red blood cells become hard and clog the blood vessels. Although normal red blood cells live for 120 days, sickle cells have a lifespan of no more than 20 days. The rapid breakdown of these cells often leads to anemia.

Although there is no patient registry in Canada, it is estimated that approximately 5,000 Canadians live with sickle cell disease today. In the United States, the number is close to 100,000. Worldwide, sickle cell disease affects almost 100 million people. However, many Canadians do not know the symptoms, effects, or treatments related to this painful disease.

Sickle cell disease causes complications in two ways. First is the breakdown of red blood cells at a rapid rate. Second is the blockage of blood flow in blood vessels. Both problems can cause immense pain, especially in the bones.

Sickle cell disease can also lead to a whole list of other complications, including damage to the liver, kidneys, and heart; infection; chest pain; acute joint pain; blindness; and stroke. It can also cause irreparable damage to major organs, going as far as heart failure. This multi-system disorder has also been known to cause premature death.

Sickle cell disease does not have a cure. However, it is treatable, and I would like to recognize all the medical professionals and caregivers who treat and support those who live with sickle cell disease across our country.

Simple lifestyle changes have been shown to make a tremendous difference in the disease, and those living with sickle cell disease are encouraged to exercise regularly, eat a healthy diet, and reduce the amount of stress in their lives. In fact, I think we could all benefit from doing those three things.

Many complications can be prevented or treated through regular blood transfusions and through powerful medication. Those living with sickle cell disease routinely have between 10 and 20 blood transfusions every month. As such, I want to encourage Canadians to donate blood whenever possible.

This is a disease people live with around the clock, and we need to do more to draw attention to the way it affects Canadians and the need to improve research and data collection. Many people say that education is the first stage in the process and that a national sickle cell awareness day is an important step.

Sickle cell screening tests are available, but many people do not know about them. Since sickle cell disease is hereditary, it is very important to get the word out to those who want to have children. Universal sickle cell screening now exists in every state in the United States and, in Canada, this test is available upon request in Ontario, British Columbia, Yukon, New Brunswick, Prince Edward Island, and Nova Scotia. Screening is available in a limited number of hospitals in Quebec, but plans are being made to make the test available across the province as soon as possible.

When a child is born with sickle cell disease, we do not always know what complications will develop. For the first six months of life, high levels of fetal hemoglobin in the blood help to prevent most complications, but things can quickly go wrong after that.

Infection is the biggest concern for children with this disease. According to the World Health Organization, sickle cell disease is one of the main causes of death in children under the age of five. We need to do more to ensure that sickle cell disease detection, awareness, and education become an integral part of our health system.

As I said in my speech, it is important that we bring awareness to this disease, do research into how we can prevent the disease or reduce some of the terrible effects it has on different organs in the system, support those who are living with the disease and those who are caregivers, and share with our global partners. As I said, we have only 5,000 people in Canada who have the disease, but there are millions around the world who have it.

There is research happening around the world. We need to be at that research table. We need to be collaborating. We have seen Canada lead in medical health research when it comes to vaccines, disease, and things like brain complications. We can contribute, but we also need to work with our partners around the world to have a big enough population to learn how we can combat this disease.

In closing, I would like to thank the sponsor of the bill. I encourage all my colleagues in this House to join me in support of those living with sickle cell disease and in support of those who care for them. With groups like the African Union, the United Nations Organization for Education, Science and Culture, and the World Health Organization, I want to recognize June 19 as sickle cell awareness day.

I believe Canada should take this step in the right direction and raise awareness about this important cause.

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

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.

The House proceeded to the consideration of Bill S-211, An Act respecting National Sickle Cell Awareness Day, as reported (without amendment) from the committee.

Health

[Bill Casey, Liberal, Cumberland—Colchester, NS]

Mr. Speaker, I have the honour to present, in both official languages, the ninth report of the Standing Committee on Health in relation to Bill S-211, An Act respecting National Sickle Cell Awareness Day. This follows the lead of the United Nations in recognizing the most common genetic disease in the world. The committee has studied the bill and has decided to report the bill back to the House with no amendment.

I would like to thank the member of Parliament for Dartmouth—Cole Harbour and Senator Jane Cordy for sponsoring this bill and bringing it forth in such good order. I want to thank all the members of the Standing Committee on Health for their diligence and deliberation on this bill as we sought an answer.

[The Chair, Liberal, Bill Casey]

That's it. We're done with this. Now we refer this to our legal expert here to finish up. That is Bill S-211.

Congratulations, Mr. Fisher. It was a tough battle, but we got it through.

[The Chair, Liberal, Bill Casey]

We'll reconvene and begin.

I noticed that Mr. Fisher is in the audience. I don't know if he wants to say anything. He's a proponent for Bill S-211, which we're going to consider clause by clause. We have no witnesses. We have no discussion. We're going to move right to clause-by-clause.

Pursuant to Standing Order 75(1), consideration of clause 1, the short title, and the preamble is postponed. We'll move to that later.

(Clauses 2 and 3 agreed to)

Shall the short title carry?

[The Chair, Liberal, Bill Casey]

Time is up.

That concludes our session, Mr. Doherty. It sounds like you've been on quite a journey. If I read the committee right, I think you've made a little progress on your journey today. The committee will be having other hearings with witnesses, and you're welcome to attend at any time and help us in any way.

With that, I'm going to call a short break and then we're going to move to Bill S-211, the sickle cell bill. We'll take a quick break and be right back.

[The Chair, Liberal, Bill Casey]

We will delay those meetings until we have the information, I would say. That would be my opinion. The committee would have to decide, but that would be my suggestion. We wanted that very specific information.

Any other questions?

The clerk is suggesting that yesterday was the deadline for witnesses for our Bill S-211 sickle cell study. He's suggesting that we move it to Friday. So April 7, this Friday, will be the deadline for the witness list for the sickle cell bill.

We asked Dr. Gahagan to send us a study she referred to. She sent us 124 pages. That is going to take a lot of work to translate. We have a scientific summary and we're proposing to translate those four pages and distribute them. Is that all right with the committee—instead of 124 pages?

[The Chair, Liberal, Bill Casey]

I think we're going to find a way to do that thanks to Mr. Oliver's proposal If we can do Bill S-211 very quickly, we're going to try to do that.

Also, we all seem to be operating with different calendars here. I've got my own calendar, but I'm going to share my calendar, for what it's worth, with everybody henceforth so you can see what I'm working with. Sometimes it doesn't coincide with others'. I'll work with the clerk to come up with a calendar to accommodate everything as best we can.

Mr. Davies.

[The Chair, Liberal, Bill Casey]

Okay.

I want to go to the schedule now. I think on Thursday we're starting our study on the effects of violence and pornography. Then on April 3 we have another session on the same subject. The minister is coming on April 6. On April 11, we're back on pornography. On April 13, we're proposing to do the clause-by-clause of Bill S-211, on sickle cell recognition day, quickly. On that same day, we can possibly also have a pharmacare update from the PBO.

Does everybody agree with those so far?

I'm proposing that we do clause-by-clause on the sickle cell bill, if that's okay with everybody. It's just to recognize sickle cell day. They're anxious to get it done for this year. So on April 13, we'll do clause-by-clause on Bill S-211.

On May 2, we have a pharmacare meeting and the fourth day of a steering committee, proposed. On the 9th and 11th, we have our thalidomide study. Then on the 16th and 18th we have the anti-microbial resistance issue to consider. I need some direction on where we're going to go with that. I understand there's a lot of concern about the anti-microbial resistance issue. My proposal is that we do that on the 16th, the 18th, the 30th, and on June 1.

Are there any thoughts on that?

Dr. Carrie.

National Sickle Cell Awareness Day Act

[The Speaker, Liberal, Geoff Regan]

The House will now proceed to the taking of the deferred recorded division on the motion at second reading stage of Bill S-211.

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.

National 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.

[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 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.

[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 though 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 haematology 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.

[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-Saharian 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 5-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 amount 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.

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 Day Act

[Kamal Khera, Liberal, Parliamentary Secretary to the Minister of Health]

Mr. Speaker, thank you for the opportunity today to voice my strong support for this very worthy and necessary legislation. I am proud to promote and support Bill S-211, an act that would make June 19 a national day to raise awareness for sickle cell disease, or SCD for short.

I want to thank Senator Jane Cordy and the member for Dartmouth—Cole Harbour for bringing this extremely important bill to the House.

By supporting the bill, we can join the African Union, the United Nations, and the World Health Organization in observing world sickle cell awareness day on the June 19 every year. Setting aside this dedicated day is not about joining an international club. It is about supporting people living with sickle cell disease, a devastating genetic disorder that affects millions of people around the world, including an estimated 5,000 Canadians.

People with sickle cell disease experience frequent bouts of debilitating pain that damages their quality of life and which, very often, shortens their lives. This is a very complex disease that still baffles the medical community.

To try to explain it simply, people who have SCD inherit two abnormal hemoglobin genes, one from each parent. At least one of the two abnormal genes causes a person's body to produce an abnormal type of hemoglobin called “hemoglobin S”. When the person has two hemoglobin S genes, the disease is called sickle cell anemia. This is the most common and generally most severe kind of sickle cell disease.

Without getting too technical, sickle hemoglobin is not like normal hemoglobin. It can form stiff rods within the red blood cell, changing it into a crescent or sickle shape. These cells are not flexible and stick to vessel walls. This can cause a blockage that slows or stops the flow of blood. When this happens, oxygen cannot reach nearby tissues, leading to a long list of complications that can compromise the person's life.

Sickle cell disease provokes attacks of sudden, severe pain that can occur without warning. The person usually needs to go to the hospital for treatment. Blood transfusions and drug therapies are used to treat and manage the disease. Stem cell transplants are the only potential cure.

It is hard to watch a child suffering from a pain attack, but it is heartbreaking to know that this is something they will rarely escape as they grow older. Adolescents and adults with SCD often suffer from chronic pain that limits their ability to attend school or go to work. Needless to say, this has negative ripple effects on their families' incomes and housing.

However, even that does not capture the long-term consequences of SCD. Over a lifetime, the disease can cause major organ damage that eventually results in premature death. Tragically, most will endure excruciating pain for most of the years they have.

As much as this takes a terrible toll on the individuals involved and their loved ones, it also comes at a high price for the health care system. The lifetime cost for a patient with sickle cell disease has been estimated at $9 million. In Canada, the total cost to treat patients with sickle cell disease for their lifetime may be approximately $4.5 billion.

More than dollars and cents, common sense dictates that we must do whatever we can to improve the lives of these individuals. I have seen patients who suffer from this serious blood disorder. In every case, I can attest to the serious health challenges they face. Therefore, I know how crucial it is that we raise awareness of sickle cell disease.

I also know from experience the importance of genetic testing for prospective parents and the necessity of screening newborns for the disorder. Early diagnosis and regular medical care can prevent complications and improve the well-being of affected individuals and their families.

Sickle cell disease is most common among individuals whose ancestors come from India, Saudi Arabia, and Mediterranean and sub-Saharan African countries, but in rare cases, it also affects Caucasians.

One of the best ways Canadians can help is by donating blood to provide sickle cell disease patients with the blood transfusions they require, not just on June 19 but every day of the year. Donors are especially needed from ethnic communities whose heritage traces back to the Mediterranean, Middle East, South Asia, Africa, and the Caribbean.

We also need to find ways to better educate Canadians about this disease and explore ways to work more productively with our partners all across the country to provide better support for sickle cell disease patients and their families.

Especially important is to continue research programs that spawn new sickle cell disease treatments that will someday lead to a cure.

Advancing these goals is precisely what Bill S-211 sets out to do. Once passed, this bill would dedicate June 19 as national sickle cell awareness day in Canada. This would send a clear signal to everyone, as a nation, that we need to improve the diagnosis and treatment of sickle cell disease and demonstrate our unwavering support for Canadians living with this terrible disease.

Earlier this year, I had the pleasure of meeting with members of the Sickle Cell Disease Association of Canada. I am proud of the work already under way in this country to alleviate the chronic pain of sickle cell disease sufferers.

Through the Canadian Institutes of Health Research, the Government of Canada has invested resources in rare disease research, including $1.3 million for sickle cell disease research, since 2010. Top researchers across Canada are actively working to identify long-term solutions to the health problems facing people with sickle cell disease.

CIHR is also a founding member of the International Rare Diseases Research Consortium. It was established to explain the causes of rare disorders and to develop diagnostic tools and treatments. There are currently four sickle cell disease clinical trials under way as part of this major international research initiative.

These studies will contribute to increasing our knowledge about the disorder and hopefully lead to the discovery of new treatments while ultimately pinpointing the cure that people with SCD seek. Until that day comes, the Government of Canada will continue to work with our provincial and territorial partners. Together we will address the health challenges confronting Canadians as we transform Canada's health system to ensure that it meets the needs of each and every one of us.

It is now up to all parliamentarians to do their part by designating June 19 national sickle cell awareness day in Canada. I encourage all members to lend their support to Bill S-211, which would provide people living with sickle cell disease the national recognition they deserve.

Once again, I want to thank Senator Jane Cordy and the member for Dartmouth—Cole Harbour for bringing this extremely relevant piece of legislation to the House. Canadians with sickle cell disease are counting on us to improve their lives and livelihoods as we improve their health and quality of life. Let us make sure we do not let them down.

[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)