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.