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.

Celina Caesar-Chavannes

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