Bill S-211 (Historical)

National Sickle Cell Awareness Day Act

An Act respecting National Sickle Cell Awareness Day

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

National Framework on Sickle Cell Disease Act

[Maggie Chi, Liberal, Parliamentary Secretary to the Minister of Health]

Mr. Speaker, I am pleased to rise today to express our government's support for Bill S-201, which seeks to establish a national framework to support Canadians with sickle cell disease. I want to express my sincere thanks to Senator Ince and Senator Mégie for their hard work in the Senate and for their advocacy. I want to also thank my dear friend, the hon. member for Scarborough—Woburn, for all his work in the House of Commons and his years of advocacy on this issue.

This is an important bill. It passed the Senate with unanimous support, and I hope we will do the same here in the House. Bill S-201 asks us to consider how a national framework could improve consistency, coordination and outcomes for Canadians living with sickle cell disease. The bill invites us to consider not only the individuals directly affected but also the families, caregivers and communities that share the burden of managing this complex condition.

I think it is important to talk about what sickle cell disease is, because it is not well-known, as the member mentioned. As with any rare disease, raising awareness is a key step in building broader understanding.

Sickle cell disease is a group of inherited blood disorders where red blood cells form an abnormal sickle shape. This can lead to reduced life expectancy and acute episodes of severe pain, commonly referred to as sickle cell crises. Current treatments include blood transfusions and medications aimed at reducing the frequency of pain crises. Stem cell transplants offer a potential cure but are limited by donor availability and significant medical risk. Emerging gene therapies show promise but come with extremely high costs.

Approximately 6,000 Canadians live with this condition, and there is a disproportionate impact on people of African, Caribbean, Middle Eastern and South Asian ancestry. Black Canadians in particular bear the brunt of sickle cell disease. Approximately one in 10 black Canadians carry the sickle cell gene mutation, yet because the disease is so poorly known and understood, Black patients frequently report discrimination in care, which leads to delayed diagnosis, increased reliance on emergency services and poor health outcomes. Limited clinical expertise, inconsistent guidelines and under-representation of Black health professionals further compound these challenges.

There has been some progress toward national training standards. Canadian Blood Services formally endorsed the sickle cell disease education program for health care professionals, a program developed by the Sickle Cell Awareness Group of Ontario. This represents a credible evidence-based framework already available to jurisdictions across the country. Established standards such as these could ensure greater consistency in care and strengthen our collective capacity to support Canadians living with sickle cell disease.

We also know that research can play an enormous role in furthering our understanding of this disease. That is why it is so exciting to hear that the Canadian Institutes of Health Research has supported significant research efforts in this field, including an investment of $13.8 million in new sickle cell-related research over the past decade. This represents a strong foundation on which to build that will create opportunities for Canadian researchers to continue advancing knowledge, improve diagnosis and treatment, and ultimately enhance the quality of life for individuals and the families affected by sickle cell disease.

Standardized care pathways are also important. We have started to see progress on this front as well. For example, the Canadian Hemoglobinopathy Association developed and published comprehensive clinical guidelines that outline best practices for both diagnosis and treatment.

I am pleased to report that Ontario has already integrated these guidelines into the Ontario health quality standard related to sickle cell disease. Hopefully more provinces and territories will follow its lead. Similarly, several provinces and territories have already established standards related to newborn screening notification, diagnostic processes and ongoing care for individuals living with sickle cell disease that integrate these national standards. These efforts demonstrate the important progress that is being made at the regional level.

The federal government has a role to play here as well, and we have been. Thanks to funding under the national strategy for drugs for rare diseases, Canada's Drug Agency is supporting greater consistency in newborn screening across the country, including a recommended pan-Canadian list of conditions to screen for newborns that is inclusive of sickle cell disease. Thanks to this approach at a national level, 11 provinces and territories now screen newborns for sickle cell disease, and this condition is under review or development in the remaining jurisdictions.

In fighting against sickle cell disease, however, nothing is more important than education, and Bill S-201 recognizes this. We need to raise public awareness of sickle cell disease, especially the critical importance of blood donation.

In 2017, the House unanimously adopted Bill S-211, which created National Sickle Cell Awareness Day on June 19. Thanks to this bill, which was sponsored by my colleague, the member for Dartmouth—Cole Harbour, there is a national spotlight on the experiences of individuals and families affected by sickle cell disease.

We also have Sickle Cell Awareness Month every September, during which Canadian Blood Services, the provinces and territories collaborate, increasing the understanding of the disease and encouraging blood donation, with a particular focus on engaging donors from African, Caribbean and Black communities. These efforts are critical because donation rates among under-represented communities remain low. Less than 1% of Canada's blood donor base is from Black individuals, despite the disproportionate impact of sickle cell disease among this population. By increasing awareness of the disease and of what we can do to treat it, we can work to meet the transfusion needs of many patients living with sickle cell disease.

Bill S-201 presents a framework that aims to address many of the challenges faced by Canadians living with sickle cell disease. The principles associated with each of the bill's nine elements underscore both the importance of the issue and the complexity of the solutions. I look forward to continuing the discussion and to hearing the perspective of all members of this House. I hope all of us will join together to pass this important bill.

[Michael Coteau, Liberal, Scarborough—Woburn, ON]

moved that Bill S-201, An Act respecting a national framework on sickle cell disease, be read the second time and referred to a committee.

Mr. Speaker, it is always an honour to rise in this House to speak on behalf of constituents of Scarborough—Woburn. Today I am also speaking on behalf of the many families and individuals who are impacted by sickle cell disease right across this country, and reflect on some of the pain and challenges that they go through.

I would like to thank the member for Ottawa Centre for seconding the second reading of this bill. I would also like to recognize an advocate, Biba Tinga, who is joining us here today. This legislation comes from the other place, from Senator Mégie and also Senator Ince. They brought this proposed piece of legislation forward to this House. It is an honour for me to be able to speak on behalf of the tens of thousands of community members across this country who support this. I also want to acknowledge the role of parliamentary Black caucus members from the Senate and the House of Commons who have been working on this issue for many years. I would like to thank both senators for their leadership and compassion.

If this bill is passed, it will make a significant, positive difference in the lives of thousands of Canadians across this country. For far too long, sickle cell disease has had a negative impact on too many Canadians. Bill S-201 represents a massive opportunity to improve the lives of Canadians today and in the future. This disease is life-threatening. It often has the ability to reduce someone's life by up to 30 years. There are 6,000 Canadians who are suffering from this disease today. It disproportionately impacts people of African and Caribbean descent. It also impacts people of Middle Eastern and South Asian descent and members of racialized communities.

Due to its genetic nature, the disease affects every single part of the body. A person with sickle cell disease is highly vulnerable to organ failure and abnormal lung function, as well as loss of vision. Sickle cell disease also causes extreme pain. In many instances, it requires long visits to the hospital. When a person is in a crisis, in an episode, the illness affects patients' daily lives. This severe pain requires very strong painkillers to mitigate the pain. Often those suffering from sickle cell are stigmatized and labelled as drug-seekers. Far too often, their pain is dismissed, and they are subject to unfair treatment, labelling and judgment.

Additionally, people with sickle cell disease do not suffer alone. Their families suffer. When there is an absence of adequate health care providers, the families take on the role as caregivers. Besides the emotional toll of watching their loved ones suffer, all of these factors put a high strain on caregiving family members to be in a constant state of readiness since a crisis can happen at any given moment.

Due to the nature of this disease, many patients and family members suffer from employment instability, and they find themselves carrying the weight on their shoulders alone. Alarmingly, sickle cell disease does not qualify for the appropriate benefits within our Canadian system, such as the disability tax credit. With many patients or their families navigating unemployment due to the illness, the cost grows quickly, both financially and psychologically.

This is very troubling, especially because people who suffer from sickle cell disease normally come from low-income neighbourhoods. Some 41% of those who suffer from sickle cell disease live in the lowest-income neighbourhoods in the country, amounting to roughly triple the rate of the general population. As such, many with sickle cell disease face barriers ranging from decreased educational opportunities, lack of financial stability due to the risk of work termination, issues with obtaining accommodation, lack of recognition of a disability and exclusion from many government programs.

This ends up causing an ongoing cycle that disproportionately impacts our society's most vulnerable communities. It is crucial that health care professionals be able to recognize the symptoms and respond accordingly. Unfortunately, too many frontline health care professionals lack the professional awareness and knowledge in identifying and treating the disease. Moreover, access to specialized health care remains heavily dependent on geography, with services fragmented right across the country.

These issues extend beyond hospitals because they are rooted in the system and institutional barriers that exist. This is specifically true in the case of blood donation requirements for the long-term treatment of sickle cell. We need more donors to meet blood demands. As the complexity of this illness increases, there is a need for donors of African and Caribbean descent to make those donations, as they are most likely compatible.

However, Canada permanently bans donations from individuals who have had malaria or who have recently visited countries where there are high cases of malaria, unlike countries like the United States, the United Kingdom and France, which instead impose temporary deferral programs. This disproportionately affects Canadians of African and Caribbean descent, the very communities that need these types of blood donations the most.

Now is the time for members of this House to support a national framework for sickle cell disease in this country. Bill S-201 proposes a comprehensive national framework to improve how Canada understands the diagnosis and treats sickle cell disease. At its core, the bill is about coordination rather than duplication. It is about consistency rather than patchwork. It calls for the federal government to work collaboratively with provinces and territories, health care providers, researchers, experts and community organizations to ensure that patients receive timely, evidence-based and compassionate care, no matter where they live.

In addition, the bill pushes for a national standard of care and universal newborn screening across the country, recognizing that early diagnosis, consistent treatment and equal access to care can significantly improve the outcomes and prevent avoidable complications. Bill S-201 also looks beyond the clinical setting. It recognizes the need for public awareness and anti-stigma campaigns to reduce misinformation, support families and encourage community participation in areas such as blood donation and peer support.

The bill highlights the importance of a more diversified blood supply, especially since many patients benefit from closely matched blood donations from people of African and Caribbean descent. It also addresses the financial realities of living with sickle cell disease by calling for stronger financial supports, better disability recognition and more equitable access to medication, so that treatment is not determined by postal code or one's ability to pay.

Ultimately, the urgency of this bill cannot be overstated. Sickle cell disease is a severe and life-altering condition, yet it has long been marginalized and systematically neglected, despite being one of the most common genetic diseases in the world. Bill S-201 is an important step toward correcting that neglect, and building a more fair, coordinated and humane system for patients and families across our country.

I would like to take a moment to recognize some of the many people who, for the last many decades, have been looking for ways to mitigate the impact of sickle cell disease and build better lives for Canadians.

I would like to thank those who have worked on this topic in this House. There have been tireless advocates like Kirsty Duncan, who unfortunately passed away earlier this year. She was a strong advocate for this issue. Her torch was carried by the Hon. Jane Cordy, who introduced Bill S-211, which called for the designation of June 19 as National Sickle Cell Awareness Day. There is also the member for Dartmouth—Cole Harbour. He was the one who sponsored that bill in this House. The bill was passed and it has been law now for almost a decade.

I want to thank some community members, but before I do that, I want to say that there have been literally hundreds, if not thousands, of people who have added to this effort over the last four decades, in Ontario and across the country. I wanted to take a moment to speak about a few people who have gone above and beyond.

Outside the government, there are folks like Biba Tinga, as I said, who is with us today. She is the president of the Sickle Cell Disease Association of Canada and one of the main drivers of the bill. I want to recognize her work. For more than a decade, she has been advocating for better treatment, more options for patients and families, and stronger public understanding of the disease. Her work is focused not just on the medical component. It is also focused on looking for ways to deal with the everyday realities that people go through, including stigma, employment disruption, mental health pressures and, of course, financial strain.

As members may know, I served as a member of the Ontario legislature for 10 years. While I was there, I met many advocates from the Ontario side who worked for decades to better the lives of Canadians suffering from sickle cell disease. I want to recognize the work of the Sickle Cell Awareness Group of Ontario, specifically Lanre Tunji-Ajayi, who has been raising awareness and has been advocating for better screening and care and a better public understanding of sickle cell disease within the community and within government.

I have to take a moment to recognize the extraordinary work of Nurse Dotty Nicholas. She has done incredible work in Ontario. She was awarded the Order of Ontario in 2010, and in 2006 she worked with the Ontario government, with then premier Dalton McGuinty, to put in place screening in Ontario that has been replicated right across the country.

I want to thank TAIBU Community Health Centre and its executive director, Liben, for the extraordinary work they are doing in this area. They are looking for ways to focus on prevention, restoration and advancement. Their work with the Sickle Cell Association of Ontario develops specialized community-based care and improved access to genetic counselling and primary care.

Finally, I want to take a moment to thank one of the pioneers of all this work, the late Lillie Johnson, who advocated for decades for the screening of newborns.

The bill is about fairness. It is about correcting the mistakes of the past. Systemic barriers were put in place, and people suffering from this very common genetic disease were not provided with the right types of tools necessary to advance themselves in a fair way in society when it came to employment, benefits and medication. I have met many people who suffer from sickle cell disease. I have known people growing up in my community who have passed away from the disease. In fact, people very close to me have suffered and passed away from this disease. It is a very devastating disease.

When people go into an episode, they can hardly move their body. The pain is so strong, and they do not know when it is going to hit. As Canadians, when talking about one of the most common rare diseases that exist in the world, we can do a better job, and the leadership is going to start in the House. If we pass the national framework for sickle cell disease, we would have the opportunity to build a better life for thousands of Canadians directly and indirectly through their networks, communities and families, and strengthen the ability for people to build themselves up, do exactly what they want to do, contribute as much as they can to build this beautiful country and make it an even better place.

One of the highlights of my political career has been to introduce and speak to this bill. I want to thank all members of the House for listening today and thank all those who will support it. I appreciate their time.

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.

[The Speaker, 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 Security Act, 2017

[The Deputy Speaker, 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.

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.