Debates of Oct. 27th, 2017

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 Act

[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.

[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.

[The Assistant Deputy Speaker, NDP, Carol Hughes]

Unfortunately, the time is up for the rest of the debate on this bill today. The member will have approximately two minutes the next time this issue is before the House.

The time provided for the consideration of private members' business is now expired and the order is dropped to the bottom of the order of precedence on the Order Paper.

The motion to adjourn the House is now deemed to have been adopted. Accordingly, this House stands adjourned until Monday at 11 a.m., pursuant to Standing Order 24(1).

(The House adjourned at 2:11 p.m.)