THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY
EVIDENCE
OTTAWA, Thursday, October 2, 2025
The Standing Senate Committee on Social Affairs, Science and Technology met with videoconference this day at 10:41 a.m. [ET] to consider Bill S-201, An Act respecting a national framework on sickle cell disease.
Senator Rosemary Moodie (Chair) in the chair.
[English]
The Chair: Good morning. My name is Rosemary Moodie. I’m a senator from Ontario and the chair of this committee.
Before we begin, I’d like to do a round table and have senators introduce themselves.
Senator Osler: Senator Flordeliz (Gigi) Osler, Manitoba.
Senator Senior: Senator Paulette Senior, Ontario.
Senator Burey: Welcome. Sharon Burey, Ontario.
[Translation]
Senator Arnold: I am Dawn Arnold from New Brunswick.
[English]
Senator Hay: Katherine Hay, Ontario.
[Translation]
Senator Petitclerc: I am Chantal Petitclerc from Quebec.
Senator Youance: I am Suze Youance from Quebec.
[English]
Senator Bernard: Wanda Thomas Bernard, Mi’kmaw territory, Nova Scotia.
Senator Greenwood: Margo Greenwood, nehiyaw, originally from Treaty 6 territory in Alberta, but I live in the beautiful interior of British Columbia.
Senator Muggli: Tracy Muggli, also Treaty 6 territory and Saskatchewan.
The Chair: Thank you, senators. I wish to apologize to the committee for the late start.
Today, we are continuing our study of Bill S-201, An Act respecting a national framework on sickle cell disease. Joining us today for the first panel, from the Sickle Cell Disease Association of Canada, we welcome Biba Tinga, President and Executive Director; from TAIBU Community Health Centre, we welcome Liben Gebremikael, Chief Executive Officer; from the Sickle Cell Association of Ontario, we welcome Ulysse Guerrier, President; and joining us by video conference from the Sickle Cell Awareness Group of Ontario, we welcome Lanre Tunji-Ajayi, President and Chief Executive Officer. Thank you all for joining us.
You will each have five minutes for your opening statements, followed by questions from committee members. We’ll start with Ms. Tinga. The floor is yours.
[Translation]
Biba Tinga, President and Executive Director, Sickle Cell Disease Association of Canada: Good morning, Madam Chair. Good morning, honourable members of the committee. My name is Biba Tinga, and I stand before you today as not only the president of the Sickle Cell Disease Association of Canada, SCDAC, but also the mother of a warrior son. I am also here as the voice of all the families, community members and others who struggle daily against this devastating disease.
When passed, Bill S-201 will ensure that everyone affected by this disease will always have a voice.
My son, Ismaël, who is 36, has had to live with sickle-cell disease, a condition that causes excruciating pain due to blood stagnation, especially when it occurs in joints or organs.
Despite these challenges for not only Ismaël, but also the entire family, Ismaël has survived; he is able to overcome the episodes of pain and has thrived as a pharmacy technician since 2009. However, it does not stop our family from having to be constantly ready to support his fragile health.
For the parents in the room, you understand the level of stress this brings to your daily life. The current health care system does not fully recognize the challenges we face as a community: limited treatment options, inadequate blood supply, and persistent stigma and discrimination.
Debilitating pain episodes and chronic fatigue prevent those affected from living their lives to the fullest. As a mother, I worry about my son’s future and the numerous issues he could be subjected to.
I put my career as a federal public servant on hold to dedicate myself to this cause and my family, voluntarily. I fear that in the future, my reduced pension may not be enough to support my son if the disease prevents him from working.
There is no provision for us in the system. We don’t count. Our community is ignored. That is why I, along with the SCDAC and its member organizations, strongly support the national framework for sickle-cell disease.
On behalf of myself and our entire community, I would like to thank the Honourable Senator Marie-Françoise Mégie for taking the initiative and bringing forward a bill that combines all of our needs. We absolutely need many of the provisions laid out in this bill, including recognition of sickle-cell disease as a disability, increased support and equitable access to care, and inclusion of our voices in the decision-making process.
It is simply about listening to us and hearing us.
Recognition as a disability would provide some peace of mind, as outlined in points 7 and 8 of Bill S-201. It’s high time the health care system recognized the over 6,500 people affected in Canada. This would help those affected to support themselves when they are in hospital, when they are experiencing periods of disability or when they are between jobs.
I implore all senators present today to recognize the importance of addressing the existing gaps in care and support. Together, we can make a significant difference for those affected by this invisible, dynamic disability. I am asking you to take concrete measures to improve the lives of those affected by sickle-cell disease. We are counting on you to make a difference. Thank you for your attention to this crucial matter.
[English]
The Chair: Thank you, Ms. Tinga. Mr. Gebremikael, you have five minutes.
Liben Gebremikael, Chief Executive Officer, TAIBU Community Health Centre: Good morning, distinguished senators and other guests. I’m the CEO of TAIBU Community Health Centre.
I would like to start my comments by acknowledging and recognizing a significant person who has done a lot of work around the sickle cell issue in our communities: the late Ms. Lillie Johnson. I’ve had the privilege of working with her and the Sickle Cell Association of Ontario. She passed away in August at the age of 103. I’m reflecting on what she would have said if she were in the room here with us.
It is with great privilege and humility that I’m here as a witness, and I also want to recognize that this is a very significant process and framework on sickle cell disease. I would like to commend and recognize the vision, the initiation and the work being done in this area.
TAIBU was established in 2008 to address the marginalization, inequities and disparities in health that Black communities face in the Greater Toronto Area, or GTA. For the past 17 years, we have had the privilege of doing quite a lot of work and being recognized as a leader in Black health. One of the things we did from the beginning of our journey was work with Ms. Lillie Johnson and the Sickle Cell Association of Ontario in developing and implementing a pilot specialized community-based primary care service for people living with sickle cell disease in Toronto and in the GTA, whereby we had comprehensive wraparound support and had exceptional outcomes, including improved access to genetic counselling and primary care services; a reduced number of sickle cell crises, where it was reduced by 50% in some instances, according to self-reported satisfaction surveys; increased access to allied health professionals, including nurses, dieticians and social workers; and a significant reduction in emergency department visits, where it was reduced by 65% in one of the studies we did. It also demonstrated improved access to other psychosocial supports. This framework is very significant because it helps us keep the focus on an issue that is invisible.
We always talk about sickle cell communities and sickle cell disease being invisible, so it gives us a focus and provides opportunities for policy change, legislation, resource allocation, strategy and measurements, and we’ve already seen in the draft of the bill that there are significant components that are very crucial. I will not name all of them, because I’m going to lose some minutes here, but the foundation is very good, according to my professional opinion. However, there are areas where we need to strengthen it.
At TAIBU, we have what we call “a model of Black health and well-being,” which uses the following as a foundation: addressing anti-Black racism, which is always one of the foundational challenges, and also incorporating Afrocentric values and principles in the work that we do. It includes things like Ujima, or collective work and responsibility, and also Ubuntu, which means “I am because we are.” This is a great opportunity to have those kinds of conversations when considering this framework.
We have three foundational pillars: prevention, restoration and advancement. Many times, systems respond to issues at the bottom of the cliff when things have already gone wrong. The framework needs to help us lift up and look at upstream situations. Some examples are as follows: Sickle cell disease does not start at the hospital; it starts in the community. How can we bring to light some of the challenges? We did a needs assessment and asset mapping when we started this process, and we found that for people living with sickle cell disease, especially after they hit 18 — under 18, there’s a great service at SickKids, for example, in Toronto — there’s nothing in the community, and they rely and depend on hospital care, but the services they receive there are also not good.
Two things I would suggest are that the framework should also make sure that care is based in the community and has a preventative approach. That is a good model. The other thing that we also worked on with the Sickle Cell Association of Ontario is the implementation of emergency department protocols at hospitals. If a sickle cell patient arrives at the hospital with a crisis, and they are seen within 30 minutes of their arrival and given pain medication, hydration and, if necessary, oxygen — which is not always necessary — they can be discharged within a very short period of time. The framework should also include that all hospitals should have an order set and an emergency department protocol to ensure that happens.
The Chair: You’re out of time. We hope to get to your points through questions.
Mr. Guerrier, you have the floor.
Ulysse Guerrier, President, Sickle Cell Association of Ontario: Good morning, senators and distinguished guests. Thank you for giving me the opportunity to speak today in support of Bill S-201, An Act respecting a national framework on sickle cell disease — an act of hope. My name is Ulysse Guerrier. I was born a warrior, and I have this disease, so I can carry it to help the community.
I’m a Canadian living with sickle cell disease. Today, I speak not only for myself, but also for thousands of Canadians whose voices go unheard every day.
Sickle cell is something with which you are born. It has shaped every part of my life. I’ve been through surgeries that most people never face, such as gallbladder removal, hip surgery, PICC lines, port-a-cath insertions and even a rare bone surgery.
The pain is constant and the damage is permanent. Yet I’m still here when two of my siblings are not. Every morning, before I can stand, I need powerful narcotics — oxycodone, OxyNEO and even a fentanyl patch — just to function. I miss four to five days of work each month for treatments, and I lose even more when complications arise, and because this disease is invisible, many don’t understand the toll it takes. But the man-made inequities make it worse. Sickle cell is not recognized as a disability in Canada, meaning we are denied the Disability Tax Credit. There is little to no research funding, and doctors are pushed toward oncology, leaving the University Health Network’s Red Blood Cell Clinic — the only sickle cell centre in Canada — understaffed and underfunded.
Systemic racism deepens the inequities. Thalassemia, another blood disorder, often receives more empathy and resources. Meanwhile, sickle cell patients, largely Black and Afro-Caribbean, are left behind. Blood donation policies exclude Afro-Caribbean donors due to outdated malaria deferrals, cutting off the most compatible donors and making transfusions dangerous. While gene therapy was approved in Canada last year, its nearly US $3-million price tag makes it a cure in name only.
We need a clear national framework and centres of excellence for sickle cell disease — centres that bring together hematologists, pain specialists, nurses, social workers, dieticians and community health workers, where we’re not dismissed as drug seekers but treated with dignity and compassion.
Senators, Bill S-201 is not just a policy or politics. For people like me, it’s a lifeline. While some organizations use this disease for personal gain financially and politically, the community still suffers. We hope that the Senate will recognize sickle cell disease for what it is: a devastating lifelong illness that demands coordinated and compassionate care from grassroots organizations like the Sickle Cell Disease Association of Canada, TAIBU Community Health Centre and the Sickle Cell Association of Ontario, who all care about one thing only: ensuring that the quality of life for those living with sickle cell is the same as that of any other Canadian.
I’m standing before you today because I survived what my siblings did not. Doctors said I would not live past 4, then 10 and then 20, but I’m here. Survival, however, is not enough. What is life without dignity, without equity, without the chance to live fully? So I ask you, senators: Will you stand with us? Will you ensure that people living with sickle cell disease are no longer invisible in this country, or will you allow another generation to be forgotten and left to suffer? The choice is in your hands.
Thank you.
The Chair: Thank you, Mr. Guerrier.
Ms. Tunji-Ajayi, you have the floor. I understand you have a few remarks for us.
Lanre Tunji-Ajayi, President and Chief Executive Officer, Sickle Cell Awareness Group of Ontario: Thank you very much for having me. Good morning, Madam Chair and esteemed members of the Standing Senate Committee on Social Affairs, Science and Technology. It’s an honour to be with you all today. I am someone with lived sickle cell experience, having lost my brother to sickle cell disease complications. I’m also an advocate serving the sickle cell community in Canada and globally.
Sickle cell disease affects people whose ancestors are from Africa, the Middle East, South America, the Caribbean and Southeast Asia. However, of all these communities, sickle cell disease is disproportionately affecting people who identify as Black.
In Canada, approximately 6,500 people have sickle cell disease, and 3,500 of them live in the province of Ontario. Bill S-201 is not the first time that a national bill for sickle cell disease has been introduced in Canada. We had Bill C-605 and Bill C-221, but what we were not able to accomplish through those bills, we must accomplish now. When you consider disorders such as hemophilia and cystic fibrosis, you’ll find that there is a huge disparity when it comes to funding and research. We need to close those gaps and ensure that there is improved equity when it comes to autosomal recessive disorders.
I also want to say that when you think about diabetes, there was a national framework that was supported by the Senate to ensure that diabetes has a national framework. This was key in the implementation of diabetes medication, which then allowed this medication to be included in the Pharmacare bill.
I would encourage this committee to really look at the national strategy for sickle cell disease bill. While the current bill has a good amount of what will be necessary to improve the age outcome of people with sickle cell disease, I do think that the bill could be improved to really ensure that it encompasses every aspect of what would be necessary to ensure that people who have sickle cell disease in Canada have access to the right care at the right time, whether they live in a big city or in a rural area, and that they are able to access quality care no matter where they are in Canada.
Thank you so much again for having me.
The Chair: Thank you all for your opening remarks. We will now proceed to questions from committee members. For this panel, senators will have four minutes for questions, and that includes the answers. Please indicate if your question is directed to a particular witness or to all the witnesses.
Senator Osler: Thank you to all the witnesses for being here today. My question is around standards because Bill S-201 mandates that the national framework include national standards.
I note that Health Quality Ontario does have a quality standard to improve care for people of all ages with sickle cell disease. Are your organizations familiar with Health Quality Ontario’s quality standard? Is it adequate? Is there more that you would like to see in it? Is it a quality standard that could be scaled to become a national standard?
Mr. Gebremikael: It was one of my points, so thank you for asking that question, which I was not able to finish.
Definitely. I am an Ontario Quality Standards Committee member, and I had the privilege of initiating the quality standard for sickle cell. It is a very great advancement. It is being implemented. It is going to take some time, but it is quite comprehensive. We had a lot of engagement with community members when it was developed.
It is a very good way of not only ensuring quality but also ensuring that there is accountability for primary care or health care facilities to follow that standard. I would recommend that this is also included in the framework: a national standard around care — a quality standard for sickle cell disease. I agree 100%.
Ms. Tinga: For us, it is not about duplicating efforts or starting over. With this framework, what we will do is this: If what is happening in one province is well implemented, for sure that is what we will take and expand it nationwide. That’s the goal and intention.
Mr. Guerrier: We’re still tweaking the standard of care in Ontario. Part of the committee is to be able to add some things that are missing in the framework, because it has only been implemented for four years. There are still a lot of things to tweak and change and also to ensure that we can enforce it. That’s the most important part: the enforcement piece that is unrolling right now.
Ms. Tunji-Ajayi: I am part of the Sickle Cell Disease Quality Standard Advisory Committee in Ontario. It is part of the advocacy work that the Sickle Cell Awareness Group of Ontario did to also ensure that we have these quality standards being developed. Being part of the advisory committee, we were able to provide input based on what our patients and their families were seeing.
I wanted to say that the quality standard is great. It is developed. It is now being implemented.
We recently had a town hall whereby the community was giving Ontario Health their feedback on how the quality standard is now since the implementation of the framework. Ontario Health took all of this amazing feedback from the community. Some were positive and some were not so positive, but it is good to know and to use that to continue to improve those quality standards.
I think so far, from what the families are saying, the standards are working even though there are still situations whereby they showed up at the hospital and still did not get their pain medication in record time, but they did note that the time to get their first analgesia to support their pain has reduced greatly, which is good. It is going in the right direction, and I would say it is something that could be emulated in other provinces.
Senator Hay: First of all, I’m deeply grateful to you for being here and via the digital platform, and I feel deeply about your journey and the losses that you have experienced. Thank you so much.
I have a comment to pick up on what has been said. I don’t really think there is a question that there is nominal equity in health care — move to mental health care, it’s less — and sickle cell disease is an invisible orphan. I acknowledge that, and I also acknowledge the unconscious and conscious bias that exists. My statement is we must do better, and my hope is this framework addresses this.
My questions are around mental health and any mental health support, and where that should be embedded in this framework.
My second question is much broader: What do you hope this framework will look like in five years’ time? What will it look like for sickle cell disease and the journeys that people are on?
Ms. Tinga: Thank you, senator, for your acknowledgement and comment. That’s a great question. Let’s talk about mental health.
Imagine what Ulysse described to you: the pain and what he has to go through, losing siblings. Think about that when you are a parent raising and caring for a child like this and there is no mental health support.
Have you ever been to the hospital and were allowed to talk to a therapist or psychologist for what you go through with the pain and complications?
Mr. Guerrier: No.
Ms. Tinga: No, because there is no comprehensive care.
If we have comprehensive care teams, then you have the hematologist and all the specialists like therapists and psychologists having access. When there is no mental health support, it means families are left with no expertise to deal with it, and that’s devastating.
As a parent, I need support sometimes. As a community leader, sometimes it is very difficult to go through the losses that we go through with no support.
Five years down the line, our hope is that all of these needs will be addressed if the federal government creates a framework that the provinces can work with and makes sure that there is accountability to ensure that not only do we support all Canadians living with sickle cell disease, but we also lift the burden on our system, because this is a heavy burden to carry. When you leave one aspect of this condition untreated, then you create other problems that last a lifetime and cost so much money.
Our hope is that there will be equity down the line, there will be inclusion for us in the health care system and there will be support so that we can thrive and just contribute as Canadians.
I would like to go back to my position as a public servant and finish my career and serve my country, but I can’t because this cause is taking so much of my time, and somebody needs to do it.
Mr. Gebremikael: It is possible. If the care is in the community and it is comprehensive care, mental health is also part of that. I’m not a person with lived experience, but people with lived experience or “warriors,” as we call them, are sitting in this box of sickle cell as if nothing else exists with them.
What we did at TAIBU Community Health Centre with the Sickle Cell Association of Ontario is provide that comprehensive wraparound service.
We had a physician, but we also had a social worker, a dietician and a nurse, and when we did the evaluation survey, the best service that was provided to them was not the physician; it was the social worker because they addressed the mental health issues. They addressed the particular issues. Then the community also led their own self-help group that meets regularly for that peer support.
The Chair: Thank you.
Mr. Gebremikael: So it is possible. Then in five years’ time, I think that is what we want to see, where people can come in and they are seen as who they are and not just a small —
The Chair: Thank you so much.
Senator Muggli: Thank you for being here.
Mr. Guerrier, I appreciate your comments around pain. My background is as a social worker, and I ran a hospital for five years. We had a lot of pain management, and it was difficult to provide support from the psychological aspect, so I really appreciate that.
Ms. Tinga — as a warrior mother — and Mr. Guerrier, I’m interested in hearing your perspectives on what is the number one priority that can be addressed in this. If you have to give a number one priority — on behalf of your son, Ms. Tinga, and also Mr. Guerrier — what would be the top piece that you would hope would be addressed in the framework?
Ms. Tinga: Sickle cell is a multi-system disease. It means wherever the blood flows, you can have a crisis; you can have organ damage. Most of the time, they are not drug seekers, and they are not lazy; they want to work. But sometimes they lose jobs because of that. Like Ulysse said, he misses work — just four days a month — and sometimes some employers don’t want to keep them. They need support when they are in between jobs or when they are incapacitated by the disease.
We need sickle cell to be recognized as a disability in Canada, and that will provide support for the warriors and for us also as caregivers so that we don’t have to chip in and pay rent when they don’t work for a week. When my son doesn’t work for two weeks, then he is not paid. He is in the private sector, and who is going to pay his rent? The family.
Mr. Guerrier: To echo Ms. Biba, what I would say is to have funds allocated for sickle cell care. For the Disability Tax Credit, I think the number one thing for me is to have sickle cell recognized as a disability and be on the list so that it is a known disease and it is not a guessing game.
When you go to the hospital, doctors are saying, “I’m not familiar with it. I don’t see a lot of clients who come to the hospital with sickle cell.” And they are guessing how to take care of you. That should not be the case in 2025.
If we have allocated funds for sickle cell disease — number one is being recognized — then we would be able to allocate a lot of different resources. I think that’s the number one thing for me.
[Translation]
Senator Petitclerc: I’m going to ask my question in French. Collectively, you answered my question. I was looking for some context around the importance of recognizing the disease as a disability, so thank you for that answer. Now I’ll ask you this: Why hasn’t it happened yet? What is standing in the way? Where is the resistance coming from? I know it’s been recognized in other jurisdictions. As I understand it, sickle-cell disease is recognized as a disability in the U.S. Why isn’t that the case here? Lastly, you mentioned this yesterday and you talked a bit about it today: Where does the stigma come from? Is it due to the fact that the disease is invisible to those who aren’t aware that a person is affected? Where does the stigma come from? I can see how it would have an impact on young people, children, schooling, access to accommodations and so on.
Ms. Tinga: Thank you for your comment. Why hasn’t it happened yet? I said it earlier: We are a community that has been forgotten and ignored, and the people affected in Canada are mainly Black. That alone comes with a certain level of neglect, in that we are visible minorities, but we are invisible when it comes to having access to services. That’s the first issue. That is why we are raising our voices and sharing our stories. The invisible nature of the disease also plays a role. Look at Mr. Guerrier. He told you about the complications he’s faced, including one that no one else in Canada has. Two people in the U.S. were known to be living with the complication and they are no longer alive. Doctors don’t know what to do because there is no research. When a patient says to a health professional that they need to stop working, they’re told that they are just lazy.
Mr. Guerrier talked about the prescription drugs he takes every morning, and you’ll assume that he has an addiction. Yes, he depends on the treatment he needs to survive, but addiction is not the same thing. All of that contributes to the stigma attached to the disease; even the health professionals caring for these patients sometimes judge them and wonder whether their pain is truly real because it can’t be seen. We have a very tough time proving that the person is unwell, because they are suffering on the inside, unless there is necrosis and the person is limping—then they are taken seriously.
Mr. Guerrier: Because sickle-cell disease mainly affects racialized people, the disease is not given any importance throughout the system. It is systemic. I fell, I fractured my arm, it hurt, but not as much as the pain caused by sickle-cell disease. I broke my arm one evening; I put ice on it, I put heat on it and I went to bed, but I didn’t take anything for the pain.
When I got up the next day, my arm was swollen and huge. When I arrived at emergency, the response was immediate. They rolled out the red carpet right away. I received excellent service from the emergency department. That incident proved to me that, because they saw something, they moved quickly. I’d like to get that same response when I show up at emergency with a sickle-cell crisis. We have to educate health professionals. They look at how the patient presents, so if I’m not crying out, if I’m not outwardly showing that something is wrong, I’m not taken seriously. Imagine, I was born with this disease. All that time, I learned to live with the pain. I’m in pain right now, but you can’t tell. Someone who knows me would see on my face that I’m suffering, but someone who doesn’t wouldn’t.
[English]
Senator Senior: I’m also grateful for your testimonies today. I want to acknowledge Mr. Gebremikael in particular because we know each other, but also because I know the organization that you run. I know the comprehensive care that is provided and how much the community values it, including my mom and aunt who went there for care. Thank you for doing that.
I would love to see the kind of comprehensive care that’s provided by TAIBU replicated as it concerns sickle cell disease, because I think that’s the kind of community response that we need.
I also appreciate the way that you demonstrated the double whammy of having a disease that is invisible and also the impact of anti-Black racism in health care. I think it is important to acknowledge that formally and to understand the critical nature of the need for this framework. I also take the point that there are critical pieces missing, and you pointed to that. What we probably haven’t heard yet is the connections not just in Ontario and Quebec but also across the country and what other provinces and territories are doing to make sure that this is a true national framework. Can you speak to that a little bit?
Ms. Tinga: That’s why we need a national framework, right? It is to be able to take it to them and say, “Look, this is the national framework on sickle cell disease, and we expect you to implement it in your province and work.”
Also, in every single province of Canada, we have people living with sickle cell disease because, again, it is not a Black disease; it is a blood disorder. We have to ensure that we understand that it is not only a Black disease. Yes, the majority impacted are Black, but it is a blood disorder. It can happen to anybody. Doing that is just serving Canadians in this.
We are working. We have smaller groups. Let’s say we have a group in B.C., and we have one in Manitoba. We have people working in Saskatchewan. Everywhere there is community. In New Brunswick, we have a community. And Nova Scotia, of course, and the provinces came together. Even in Prince Edward Island, we have people living with sickle cell disease. It is everywhere across the country, and that’s why we need this framework that will enable us to work cohesively nationwide.
Ms. Tunji-Ajayi: Thank you very much. I wanted to thank Senator Senior for her comment about how to ensure that this national framework is truly national. I wanted to use the example of a simple drug called hydroxyurea, which is for sickle cell disease. It was initially approved by Health Canada for cancer, but in one way or the other, we realized that this drug will help sickle cell disease. You can imagine patients with sickle cell disease will typically end up in hospital — let’s say every month or every two months — with an admission, and if you think about the health economics of it all, non-ICU admission to a hospital can cost up to $20,000 for a week or so.
For people with sickle cell disease who are on hydroxyurea — who would end up in hospital every so often and be missing work and missing life — sometimes for five years, they don’t have a single crisis. They can be a mother. They can be a father. They can work. They can do their life. They can truly have a good quality of life.
This drug is only about $100 a month — generic, of course — for most families to be able to get this drug. Yet even though it is about $100, you still find that not everybody is able to afford it.
The Chair: Thank you.
Ms. Tunji-Ajayi: But if we are able to afford it, we will — thank you.
We need to replicate this, and similar to a province like Alberta that’s giving this medication for free to patients, we must also make sure we can do the same across the country. Thank you.
The Chair: I’m going to remind folks that we have to stay within the time. Senator Bernard, can you direct your question to a witness, please, if that’s helpful? Thank you.
Senator Bernard: As you can see, we could spend a lot of time with you. Having the lived expertise here is really important. Senator Senior made a comment that I was going to speak to: the importance of naming systemic anti-Black racism in health care and the work of TAIBU, which you have highlighted. Some of my questions have been asked and answered. I’m going to ask one question. I’m sorry; I won’t be able to direct this. Any of you who feel compelled to answer, please do.
The proposed framework speaks to education, training and research. What difference do you think it would make in terms of the curricula that are offered in medical and other health professions, and is there some of that already happening? But how will this framework specifically help with that?
Mr. Gebremikael: I think it is very critical, as identified in the framework already. Thank you also, because I was going to answer the question of why this didn’t happen as yet. It is because of the systemic issues and structural racism that we face.
The first time I met the late Dr. Graham Serjeant, he said, “Sickle cell disease is preventable.” And I was like, “What?” It is preventable if we have the right education, awareness and public engagement, knowing our status and making informed decisions.
But as Ulysse was saying earlier on, we are also seeing that the health care system is not well equipped or not informed because they don’t practise a lot. That’s why people like Ulysse stopped going to primary care physicians because the primary care physicians would tell them, “Oh, it’s a crisis. Go to the hospital.” And so Ulysse stopped going to the doctor because he knows if he goes to the doctor, they tell him to go to the hospital.
We did some work with Humber Polytechnic, where we did some education with nurses so that they are a little bit more aware of what the disease is, its complications and how to address it. I think at that level, it is very important that this is part of our health care professional training.
We found out nutrition is very significant to address sickle cell disease. We developed a nutrition guideline for sickle cell disease. For every discipline — not just primary care physicians or nurse practitioners but also nurses, social workers and dieticians — this has to be part of the curriculum. It’s going to be very important.
One last thing I want to say is that part of this being a preventable disease, to be honest, is with the neonatal screening. It is part of the framework right now, and I always have to mention our ancestors. Ms. Lillie Johnson did a lot of work to get infant screening done, but the results are not shared with parents, for example, if there are traits or they’re carriers. This is not given to parents, and how can we start the education, the engagement and the awareness if we don’t know? That means we have to know — people have to get tested to know their status in the future, and if we know this, then we are able to start the education, the engagement and the awareness and make sure that people have information to make informed decisions.
The Chair: Thank you for recognizing the late Graham Serjeant. He was my teacher at The University of the West Indies.
Senator Burey: I cede for him to finish.
Mr. Guerrier: I just want to add that for the work that we have done with TAIBU and the Sickle Cell Association of Ontario, we engaged a lot of different CHCs to be able to build their capacity. With the work that we have done with Humber Polytechnic, we created a curriculum that we teach with the student nurses. When they graduate and they go to the work field, they will know what sickle cell is, and they will know how to treat sickle cell. At that point, this is the first line of defence: It’s the nurses. If the nurses know about the disease, they can advocate on our behalf, and that can change the dynamic.
We can use that framework that we use with Humber Polytechnic and make it national. Those are things that we can do.
Senator Bernard: As a follow-up to that, you mentioned CHCs. People may not know that’s community health centres. And has that been across the country or just in Ontario?
Mr. Gebremikael: Just in Ontario.
The Chair: Thank you.
Senator Burey: This is wonderful. I want to thank you from the bottom of my heart for being so courageous and for all the work that you have done to get us to this place. We are standing on your shoulders, those shoulders you mentioned before and the many shoulders. This is a very special, sacred moment in the history of Canada in that we have come this far. I want us to take a moment to really say that and to reflect on that. So thank you.
There are so many wonderful questions, and, of course, being a pediatrician, I have my own, but I wanted to bring out the importance of federal leadership in shaping this framework now that you have literally put all the pieces together and you are looking for a structure where we can make the best practices and the evidence-based standards applicable across the country, where we can truly appreciate the Canada Health Act and the universality principle of this — one of the foundational things.
The question I am asking is about the population and why the work in Ontario is so important, as well as the newborn screening and the amount per capita of people who have sickle cell in Ontario and why your work is so important to share when comparing that, for example, to cystic fibrosis. Can you comment on that and why it is important now to bring this to the issue? Let’s just start with that question. I don’t know if I’ll have any more time.
Mr. Guerrier: I would say that the population of individuals living with sickle cell in Ontario is greater than other places in Canada because the majority of immigrants coming to Canada come to Toronto, and then they go to other provinces.
The numbers that we have are an estimate, and we don’t have the national registry to use to be able to gather that data. This is what the framework would have in place, so that would allow us to get the exact numbers to know exactly where people are and how the care is being done.
With the standard of care in Ontario, it’s about using that — because we were able to gather some of the data right now — so we can use that as the framework to implement it in the national framework.
Mr. Gebremikael: Data is always a challenge because we don’t have that, and maybe it should be something in the national framework to say race-based data — yes, it is, right? That is very important because we don’t have the numbers; we only know anecdotally what is happening.
It is also very interesting when we look at other kinds of — I don’t know if you want to call them “rare diseases” and stuff like that. From our perspective, the numbers should not tell all the story. The experience should tell all the story so that we can ensure that even if it’s a smaller proportion of population that we have, it’s their quality of life as number one. Number two, it is also compared to cost to the system. We also need to see it on the other end.
If we were able to reduce 65% of emergency department visits with a pilot project that was not funded — we just got resources together to do this pilot project, and it was not funded — and if that could be monetized, that is what really counts.
For us, though, it’s not just that, but it’s actually the quality of life. If Ulysse can go to the hospital and be seen in 30 minutes with no judgment that he’s there to seek narcotics and if he has to prove himself to do that, those are the kinds of things that we have to be able to measure and establish that this is the best way and the best care that we can provide.
Senator Osler: Thank you, witnesses. I was surprised when I heard that sickle cell disease is not recognized as a disability. I’m going to ask you to clarify. I did a quick cursory search, and it looks like sickle cell disease is recognized in human rights legislation, both provincially and federally. Certainly for federal benefits, the Disability Tax Credit and the Canada Pension Plan disability benefit recognize sickle cell disease depending on severity. It sounds like the specific criterion recognition of sickle cell disease may vary from federal to provincial to territorial jurisdiction, but could you, please, enlighten us by providing us with some clarification on that?
Ms. Tinga: That’s exactly the issue; you’re right. It’s mentioned there. But how is everyone going to interpret the information and apply it when people apply for disability according to where they live? People have reported if you are in Ontario compared to B.C., depending on who fills out the form, we know what the physician agrees to put. And if they agree with you that you are incapacitated for a certain time, then you can be eligible.
Recently, I was in B.C. this past weekend, and I met a young warrior who is 21. She was in school and then she had to drop because she was sick. She told me it took her two years and three attempts to be able to be covered. She was really sick, and she was waiting for surgery in the meantime. It depends on each province, and that’s why we need this framework: to be able to just standardize and then have a clear, specific case for sickle cell so that people can be eligible quickly.
Mr. Guerrier: I want to add that when someone applies for the Disability Tax Credit or any kind of disability, if they put sickle cell alone, chances are they’re going to be rejected. If they put sickle cell with another complication or illness, then they are more favourable to get the resources, I guess.
Senator Senior: I don’t have a specific question, but I know that Ms. Tunji-Ajayi had her hand up before. I wanted to give my time to her and whatever else you may want to say to finalize our session with you.
Ms. Tunji-Ajayi: I wanted to thank you for your kindness, Senator Senior.
I wanted to add to what has been said: Number one, in terms of training, medical schools having the curriculum is not going to be enough. It has to be continued training, and that is why the Sickle Cell Awareness Group of Ontario has a health care provider training program that can be emulated in other parts of the province. We’ve trained over 2,000 health care providers, and that has allowed many health care providers to refresh on what they learned from university and also to be able to see new cases, as new variations of sickle cell disease are springing up, and they can learn more. That’s number one.
Number two, in terms of sickle cell traits, I wanted to also say that many may not be aware, but right now the Ontario Ministry of Health is working with Newborn Screening Ontario, and now babies with sickle cell disease will be disclosed automatically to families. We’re currently working with the ministry on policies around that.
Number three, I wanted to also say that it’s great that we have Ontario and Quebec on this platform, providing our feedback on the national framework. We also encourage that all the stakeholders across the country from other provinces also be given the same opportunity to provide their feedback on the framework.
Thank you so much.
The Chair: Thank you very much.
Senators, this brings us to the end of the first panel. I would like to thank Ms. Tinga, Mr. Gebremikael, Mr. Guerrier and Ms. Tunji-Ajayi. Thank you for your testimony today and for being with us to help us understand a little bit more the importance of this framework.
For our next panel, we welcome the following witnesses joining us in person: From the University of Ottawa and The Ottawa Hospital, we welcome Dr. Smita Pakhale, Professor and Senior Clinician Scientist; and from the University of Toronto, we welcome Sinthu Srikanthan, PhD Student, Factor-Inwentash Faculty of Social Work. Unfortunately, a witness who was to join us on video conference is unable to meet the technical standard, so we won’t be able to have him with us today.
Thank you for joining us today. We will begin with opening remarks from Dr. Pakhale, followed by Ms. Srikanthan. You will each have five minutes for your opening statements, followed by questions from committee members. Dr. Pakhale, the floor is yours.
Dr. Smita Pakhale, Professor and Senior Clinician Scientist, University of Ottawa and The Ottawa Hospital, as an individual: Thank you for this invitation and this opportunity. Honourable senators, I’m a lung physician, senior clinician scientist and professor at the University of Ottawa and The Ottawa Hospital Research Institute. I’m here today to discuss the critical importance of this bill: Bill S-201, An Act respecting a national framework on sickle cell disease.
As a health care provider treating patients with sickle cell disease, I have witnessed firsthand the devastating impacts of this disease on individuals and families alike. Sickle cell disease is a genetic disorder that affects hemoglobin production, causing red blood cells to become misshapen. They become C-shaped, or sickle-shaped, and block small blood vessels. This leads to excruciating pain, multi-organ damage and repeated bacterial infections. Unfortunately, sickle cell disease is often overlooked and underfunded, despite being the most common inherited disease in Canada.
As a lung physician, I’ve seen the deadliest complications of sickle cell disease, including pulmonary hypertension, acute chest syndrome and respiratory failure. Over 90% of people living with sickle cell disease have abnormal lung function — just to state one statistic — and these complications can be life-threatening and significantly impact quality of life, as we heard in the previous panel.
Moreover, people with sickle cell disease often experience poor access to health care, limited treatment options and inadequate support. I’m the nominated principal investigator of the Canadian Sickle Cell Disease Registry, which is the Sickle Cell Disease Association of Canada’s initiative that aims to improve our understanding of the disease burden and clinical care. This registry will provide valuable insights into the needs and gaps in the care of each community across Canada, enabling policy-makers like you to make informed decisions.
However, to make the registry successful, we need ongoing support, as outlined in Bill S-201. This bill will accomplish the following: First, it will enhance research and data collection. Establishing a national research network to advance research and improve data collection on sickle cell disease is crucial. Second, it will improve health care professional training. Providing training and education for health care professionals on sickle cell disease diagnosis and treatment is important. Third, it will increase public awareness by supporting public awareness campaigns to reduce stigma and promote understanding of sickle cell disease. Fourth, it will also ensure equitable access to care, guaranteeing equitable access to neonatal screening, diagnosis and treatment for affected individuals. Most importantly, all this data will allow us to recognize that sickle cell disease is a disability and to include it in the Canada Disability Benefit program and the Disability Tax Credit. This would significantly improve the quality and quantity of life for individuals living with sickle cell disease, enabling them to access necessary care and support.
Bill S-201 is a vital step toward addressing the needs of Canadians living with sickle cell disease. I urge you all to support this bill and recognize the importance of providing comprehensive care and support to individuals affected by this devastating and excruciatingly painful disease. By working together, we can improve the lives of people living with sickle cell disease and create a more equitable health care system. Thank you.
Sinthu Srikanthan, PhD Student, Factor-Inwentash Faculty of Social Work, University of Toronto: Thank you, Madam Chair and honourable senators, for allowing me to speak today. I’m a PhD student at the University of Toronto in the Factor-Inwentash Faculty of Social Work. I’m also a social worker at the University Health Network’s Red Blood Cell Disorders Clinic, which is Canada’s largest hemoglobinopathy program with over 2,500 patients.
I have had the privilege of supporting adults with sickle cell disease for the last six years. Direct advocacy in systems such as income support, education, employment, immigration and housing is a feature of my everyday work.
As we know, sickle cell disease disproportionately impacts Black people in Canada. Many also come from newcomer and refugee communities. Poverty is especially salient for understanding sickle cell. A 2023 study by Dr. Pendergrast and colleagues found that 41% of all people with sickle cell in Ontario live in the neighbourhoods with the lowest incomes. That’s a rate that is triple that of Canada’s general population.
As a social worker, this statistic is alarming. It reflects the costs of living with sickle cell in a society that provides minimally for people with disabilities, especially for those who are experiencing the intersections of anti-Black racism, immigration and settlement.
Despite being a serious and life-threatening condition, sickle cell is contested as a disability in Canada. Many are unaware that sickle cell is a disability under Canada’s human rights laws and that they have the grounds to challenge discrimination. Even with this knowledge, people with sickle cell may struggle to secure accommodations for flexible scheduling, work from home and time off due to unexpected illness.
As a result, people with sickle cell often lose educational opportunities and are at risk of being terminated in the workplace. Many experience microaggressions, including scrutiny of whether their disability is real. This speaks to the widespread lack of recognition of sickle cell as a disability in Canada.
People with sickle cell are also excluded from federal disability entitlements, including the Canada Pension Plan disability benefit, the Disability Tax Credit and the new Canada Disability Benefit. They are also excluded from provincial disability benefits such as the Ontario Disability Support Program.
Due to racial biases built into the medical model, providers may not provide medical documentation that affirms sickle cell as a disability, and even when you have supportive medical providers, Canada’s social welfare programs do not account for the chronic and episodic nature of sickle cell. This means that impacted people are screened out of necessary benefits.
I wanted to mention that a number of my patients also have intellectual disabilities which, according to the medical literature, is related to the disease process. This group is especially vulnerable as they have two invisible disabilities, plus various intersections, but they face misunderstanding, intersecting stigma and barriers to accessing resources that they are entitled to.
The result is a vicious, ableist and racist cycle of social exclusion and poverty, where people with sickle cell face discrimination in education and the labour market, and then they are excluded from social welfare programs at the provincial and federal levels. There’s an insidious message that people with sickle cell are undeserving of support.
When medical conditions are affirmed as a disability, impacted people receive accommodations at work, school and services, as well as benefits that help offset the financial costs. These are tools that allow people with sickle cell to shape their lives.
As we have seen with the HIV/AIDS movement, access to disability accommodations and entitlements, housing and medications can transform what was once considered a palliative disease and a life-limiting disease into an episodic disability.
I strongly support Bill S-201. I urge for the removal of rigid adjudication criteria to recognize sickle cell as a disability for accommodations and benefits. Access to housing and the inclusion of medication such as hydroxyurea in public drug programs will improve the quality of life for people with sickle cell. Bill S-201 will empower society and other levels of government to remove barriers for people with sickle cell.
While there have been some advances in the medical management of sickle cell, it is by challenging discrimination and championing human rights where the greatest impacts can be made. Thank you.
The Chair: Thank you for those opening remarks.
For this panel, senators will have four minutes for questions, and that includes the answers. Please indicate if your question is directed to a particular witness or both witnesses.
Senator Osler: Thank you to both witnesses for being here today.
The national framework must provide for the creation of a national research network to advance research, improve data collection and establish a national registry on sickle cell disease.
I have a two-part question: What, if any, elements needed for a national research network are present in Canada right now? Second, would new funding be needed to create a national research network?
Dr. Pakhale: Thank you. It’s a very poignant question. As a clinician and scientist deep in the research, it’s a crucial question.
We do have a national research framework, as you know. There’s funding from the Canadian Institutes of Health Research, or CIHR, the Natural Sciences and Engineering Research Council of Canada, or NSERC, and the Social Sciences and Humanities Research Council, or SSHRC. These are the three funding organizations that provide funding for all the research in Canada for all the diseases that you know and don’t know of.
There’s nothing specific for sickle cell disease, whereas we do have a lot of specific calls and specific national frameworks for multiple diseases, including diabetes, HIV and cystic fibrosis. Even though sickle cell disease is the commonest inherited disease, we do not have any dedicated funding pocket or funding stream that encourages people to adopt this as their career pathway or encourages the junior researchers to take on this disease that they hardly learned in medical school.
We need to do more in education and research. If you have research pathways for research funding, we will have more people and more students interested in the disease, so they feed each other.
We need to have dedicated research funding and pathways that will groom researchers in this kind of discipline, which remains unknown.
Ms. Srikanthan: There’s a tendency for funding to be diverted to medical. There needs to be a more interdisciplinary focus. This is a social issue as well, so I do think we need funding from that perspective as well.
Dr. Pakhale: All three levels — CIHR, NSERC and SSHRC — are the three main funding bodies for academic research, pure sciences and social sciences. All three need to have that focus for dedicated funding streams for sickle cell disease.
The Chair: Thank you.
Senator Hay: Thank you both for the work you’re doing day in and day out.
My question will sit in the realm of AI, technology and digital solutions and your view on how e-solutions, digital solutions and AI can help with care path support and help with mental health support, as well as training and education, because it could be a cost barrier. It could also be a geographic barrier — a solution. How do you see that working with your research and data analytics from a trends perspective, predictive perspective and even prevention perspective of crisis moments?
Dr. Pakhale: Thank you. AI is talked about everywhere, but we’re talking about a field which is not even known, not even recognized, not even acknowledged and we do not have data.
When AI is there, AI is nothing if we don’t have data, so we need to first support the registry strongly, taking it nationally and ensuring that all the people who are living with sickle cell disease are a part of that registry by creating the data based on their lived experience, their clinical experience and their experience in the community. Once that data is there, we have all the tools of AI to help us analyze, see the patterns and create solutions, which are relevant and context specific to people living in Nova Scotia or New Brunswick or Newfoundland, not just in Toronto or Ottawa. We need to do that.
We have all the tools. We need the data. That’s why we need your ongoing support with this kind of a national framework, where we can have that living and breathing registry for many years to come, like we have, for example, with cystic fibrosis. We have had it for more than four decades. What happened with the Canadian Cystic Fibrosis Registry? It was started four decades ago, but when it started, we did not know much about that disease. Canada is at the cutting edge of cystic fibrosis research. You may ask why. It’s a single-word answer: registry.
The cystic fibrosis registry data showed us many things, most importantly the nutritional parameters, and we learned that nutrition is important in cystic fibrosis care. We started with that and provided the nutrition that became not just the Canadian standard but also the global standard. Canada became the global leader of cystic fibrosis research and clinical care.
We have yet another opportunity to become a global leader for sickle cell disease clinical care and research. Somebody mentioned earlier that this is a poignant and historic moment that we must reflect upon not just for the history of Canada. I come from India originally. There is a lot of sickle cell disease in my country which, again, affects the most marginalized and the lowest of the low-caste people — those who are ignored, neglected and systemically oppressed.
It is not just a poignant moment for the history of Canada; this is a moment in the history of the world. We are making global history by passing Bill S-201. We will be on the leading edge of research and clinical care of sickle cell disease yet again, after four decades of doing what we did for cystic fibrosis.
The Chair: Ms. Srikanthan, do you have a short comment that’s 14 seconds’ worth?
Ms. Srikanthan: AI can be used to enable access to care, but I’m conscious of racism through the algorithms. That is something to be mindful of too, especially with sickle cell.
Senator McPhedran: My ears perked up when you talked about the need for education, and my question comes from spending decades trying to have curricula among medical and allied health professions on the sexual abuse of patients and not succeeding very well. Much of the curricula is the same as it was when I led a task force 30 years ago.
My question about the education that you have identified is this: First of all, do you feel that there currently are adequate knowledge products for the level of education that you believe is necessary? That’s part one. This is part two: Do you believe that there is a path for successful uptake in the faculties of medicine and allied health professions that you need to reach?
Dr. Pakhale: Thank you for the question about education.
Our medical education system — not just doctors but also nurses, occupational therapists and social workers — is A1 in Canada. We pride ourselves in the standards that we carry at the Royal College of Physicians and Surgeons of Canada, et cetera, and the nursing school and social work. However, there are very vivid gaps in education. I ask medical students when I get residents — because I see a lot of sickle cell patients in my lung health clinic — if they know something about sickle cell, and by and large, I always receive the answer that they have never heard about it, or they saw somebody somewhere or they heard somebody say something. However, there is no dedicated education on sickle cell disease as such, even though it is a multi-system disease affecting every organ from head to toe and even though it is the most common inherited disease. Yet there are so many vivid lacunas.
I’m talking about medical education for doctors. It is the same for nurses, physiotherapists, nutritionists and everybody. We have a great opportunity with this kind of a national framework to create national standards for the whole of Canada and for all these medical systems of the allied health care system because it is a multi-system disease, and we need all allied health care to be educated in this disease. And we do have pathways. We have products in different pockets, like we heard before with the nursing education with Humber Polytechnic. We have those kinds of products hiding everywhere because local efforts and grassroots-led efforts are there.
I do a lot of education in my field, like lung health, so there are a lot of these kinds of products available hiding nationally, and we have pathways to successfully implement those in our current education system.
Ms. Srikanthan: I would say that — as she said — it is hidden. I’m also part of the Humber Polytechnic program, but it is done at the side of your desk — the people who are organizing it. There is no institutional support. As a social worker, sickle cell disease was not in my curriculum, but what is also important is learning about anti-Black racism, ableism and disability justice. And for social work, anti-Black racism is a concept that was developed by a social work professor, Dr. Akua Benjamin. I didn’t have that in my curriculum. It needs to be emphasized more, and that will give you the conceptual tools as a social worker, if you meet somebody with sickle cell disease. You will have the framework. You don’t need to learn about the medical pieces; you will know how to understand the systems. So tools exist, but it needs to come together.
Senator Burey: Thank you for the important testimony. I will get right to the questions, so you can have time to answer them. I have a question about how much money Canada spends through the various funding agencies on sickle cell research, if that is known. I know there has been some research recently from the U.K. and before from the U.S., looking at the inequities in funding when you compare sickle cell to cystic fibrosis, as you noted. I just want to know if you have an answer to that question.
The second question is about blood donation restrictions. We were supposed to have an oncologist testify, but he wasn’t able to, so you may be able to answer this. What effect do blood donation restrictions have on not having enough matches for bone marrow transplants and the effect on the sickle cell community?
Dr. Pakhale: Thank you. That is a very important two-part question. Just for the money spent and how much Canada spends, we do not have the exact answer for a good reason: Because we don’t spend much money. But we know about how little money we spend, and I will bring up cystic fibrosis again, which is a parallel disease because it is also a multi-system disease — not to take anything away from people with cystic fibrosis. I’m a lung doctor. I see cystic fibrosis very closely. It is also an inherited disease, a multi-system disease and a life-limiting disease. However, Canada spends more than 10 times the amount of money in clinical care and research on cystic fibrosis compared to sickle cell, and that’s a very conservative estimate.
The second part of the question is about blood donation. It is a very important question again. We have another colleague who actually couldn’t make it for this panel, Dr. Jude Cénat, whose work is on this, and the restrictions for the donors who are Black is a very important one, and there was earlier mention of the malaria deferral. This is because there are archaic deferral principles in our blood donation system. Canada is the only country where a Black person, even if they had malaria 30 years ago, cannot donate blood. They can donate in the U.S., France and many European countries, but not in Canada. We have these archaic, evidence-lacking restrictions which speaks to the systemic racism, not to the science, because there is no science — rather, there is a lot of science that has proven that this is ill-founded. We have a lot of science against that, and still we have continued those restrictions.
Hopefully, this national framework would speak to those restrictions and help relieve those restrictions.
Second, what impacts does it have on the people living with sickle cell? We are talking about stem cell and about their day-to-day life. More than half of these people actually survive repeated blood transfusions, and if they are getting repeated blood transfusions, when you get the transfusion, you are putting somebody else’s blood in your body and your body reacts. When you repeatedly get those transfusions every few weeks, some of them every month, your body is reacting every time, and your body is developing those antibodies. When those antibodies are there, then sometimes you might get reactions to the blood transfusions, and they could be devastating. They could be life-limiting. They could be fatal.
That is their day-to-day life: Am I going to react this month? It is their day-to-day life.
Because of the limited supply, there cannot be perfect matchings because you get what is available. It affects their day-to-day quality and quantity of life because of the regular blood transfusions.
The stem cell transplant will come later. We have just started doing it. But for regular people living with sickle cell disease, it is very hard for them.
Senator Senior: I really appreciate the passion and dedication you both bring to this discussion. It gives me hope.
I want to go back to a similar question that Senator McPhedran asked, which is around education, because the framework depends a lot on the pillar of education. Thank you for mentioning Dr. Akua Benjamin, but I do wonder if you think education will make a significant difference in the systemic barriers that you have named. Do you think education is the way around that?
Ms. Srikanthan: I think it is part of it because these are future citizens. It educates the clinicians. As a social worker, I could be working one-on-one with people. I could be in a policy-making space. I do think it could help.
There is also another part of the policy creation piece. There are the barriers that I spoke to with social policy, and that is a different level of intervention. I do think education can help remove barriers.
Senator Senior: I’m just thinking about what she said: 30 years of trying to implement education around sexual assault, and it hasn’t made a difference.
Ms. Srikanthan: I wouldn’t say there is enough institutional support for education right now.
Dr. Pakhale: We also need a paradigm shift in our education system. When it comes to issues of discrimination, stigma and anti-Black racism, we need a paradigm shift. What I mean by “paradigm shift” is what our education system is teaching in the classroom, or didactic teaching. You come, you give a lecture and sometimes there are small group discussions, et cetera.
What we need to do is bring people with lived experience to the classroom or take the students into the community to see the lived experience firsthand. We have to have this paradigm shift.
In the ancient days, 2,600 years ago in Buddhist India, they used to learn in the community under a tree. We need to bring that. We need to bring the classroom to the community.
Until people see what others are going through every day and what their challenges are, they will never relate. By putting four questions on their exam, they will never know what sickle cell is. They have to be in the community and in people’s houses, talking to them. That curriculum has to be integrated, so we need a paradigm shift in our education system.
Ms. Srikanthan: Humber College’s Sickle Cell Disease symposium is so powerful because it’s people with lived experience, health care providers and nurses at the beginning of their careers. There is a big auditorium, but then there are these breakout rooms where very intimate relationships are made.
I agree that it is a paradigm shift. It is not a very Eurocentric way of doing education. It is relationship-based.
Senator Muggli: Thank you both so much for your incredible passion on this issue. I am a fellow social worker, so my question is for you, Ms. Srikanthan.
I know that social workers spend a lot of time helping people fill out forms and applications. I am curious: In your experience with your colleagues, what does that look like in terms of rejection of applications to whatever programs there might be, particularly disability benefits?
Ms. Srikanthan: It is awful because it takes a lot of time to do these applications. You also have to work with the medical providers, because they are not going to necessarily agree that sickle cell is a disability. It is awful for the patients because you basically have to put all your suffering on a piece of paper and then have it rejected, and then it takes six months. That’s all time spent waiting, and waiting is work and money lost, and it is your health also getting worse.
Your question is this: What does rejection look like? That’s what it looks like. Then it’s having to possibly start all over again, and that’s another six months or a year.
Senator Muggli: Do you have a percentage? How frequently does it happen?
Ms. Srikanthan: For the Ontario Disability Support Program, I would say it’s 50% to 60% rejection. I have developed some tools to try to prevent that, and I have tried to also build capacity with my care team, but I would say it’s 60% for the Ontario Disability Support Program. For the Canada Pension Plan disability benefit, it is a higher threshold.
For the Disability Tax Credit, just because of how the form is worded and also how the clinicians are reacting to how the form is worded, I would say very few patients would ever get accepted for the Disability Tax Credit.
Senator Muggli: Thank you.
Senator Bernard: I’m also a social worker who is moonlighting as a senator. My first question is for you, Ms. Srikanthan.
You mentioned that funding often gets channelled through the medical route. Can you elaborate on what ways supports can be enhanced through social work and social programs?
Ms. Srikanthan: For example, in the research world, if you wanted to research sickle cell, instead of it going to NSERC or CIHR, which is a medical model, I think SSHRC would be a way to ask more critical questions, having space within the social sciences body to ask.
Research calls for research that looks at the intersections of health with social justice or participation. There is so much that you can do. It’s about having more explicit mandates. That’s where sickle cell could fit.
Also, for me, disability justice, anti-Black racism, immigration and settlement are core features, and poverty as well. I am alarmed by that 41% rate. I think having those mandates will allow for more research in the social sciences for sickle cell.
There is one department in the U.K., and they do have a Unit for the Social Study of Thalassaemia and Sickle Cell. I really rely on their research. It is for the U.K. context, but we inherited all our colonial policies from the U.K., so I am able to apply it to advocate for our patients. We need that in Canada as well.
Senator Bernard: May I ask a personal question. What is your PhD research on?
Ms. Srikanthan: For my PhD research, I’m only one month in, but it will be an institutional ethnography on the health care experiences of adults with sickle cell in Ontario.
Senator Bernard: We look forward to seeing it.
Dr. Pakhale, you mentioned the need for a paradigm shift, and my question is this: Will a paradigm shift help us to help people in the medical field better understand intersectionality, multidisciplinary work and interprofessional education and how it applies to people with sickle cell so that we can shift them from undeserving to deserving of support?
Dr. Pakhale: Indeed. That’s my other hat, actually; it’s what I do. I have a community-based research centre called The Bridge Engagement Centre. We call it The Bridge Model. I was on sabbatical, and I just got back to my clinical work, but that’s exactly what we do. We sit in the community and do the research, but I bring the students to the community, and we help people with lived experience when doing the research and it’s not from the top down. It is from the ground up. That is what The Bridge Model is.
We have created something called Bridge Inclusivity Training which speaks about racism and discrimination in the health care system. We bring students and trainees from the ivory tower to the community. We have our community centre in Vanier here, and that’s what we do.
It is possible; we can create those frameworks. I have been working on The Bridge Model for more than 10 years now. That’s why I took the sabbatical. I know it has come to that fruition.
Senator Petitclerc: This is a double level of questions. What can we say about the situation when it comes to early diagnosis? The framework calls for neonatal screening but also diagnosis and the sharing of results. What does that look like now? Also, am I correct to believe that the earlier someone and their family know, the better the treatment, pain management strategy and quality of life will be?
Dr. Pakhale: Exactly. You hit the nail on the head. Knowledge is power: If we know it, we can act upon it. It is the same thing we have done in the world of cystic fibrosis for all these years. We have the diagnosis as soon as the child is born throughout Canada, and as soon as you know the diagnosis, things are put in place in terms of what the child needs to survive, and that is sustained. It is the same thing. We have a blueprint from cystic fibrosis. We don’t have to reinvent the world; we just have to apply the blueprint from cystic fibrosis to sickle cell disease. We can do the early diagnosis and dissemination exactly how we —
Senator Petitclerc: So it doesn’t happen now —
Dr. Pakhale: No, it doesn’t happen uniformly. The organizations are trying to advocate for neonatal screening throughout Canada. We are getting adoption, but then again, you have the policy and then the implementation and the transfer of knowledge. There are a lot of glaring gaps.
The Chair: Do we know where we have gaps?
Dr. Pakhale: Yes, we do. We do not have neonatal screening all throughout uniformly. But as the earlier panel was suggesting, even if neonatal screening is done, the result is not transferred to the patient and the families. What you know about a Black mother giving birth in a hospital, even today — many times, the police is behind taking the baby out because that person is not deserving of the baby or there were some charges on them 10 years ago. This happens all the time, even in my ivory tower.
What about giving the neonatal diagnosis of sickle cell when the baby is not with the mother? There are also so many other issues.
[Translation]
Senator Youance: With the registry, will it be possible to collect data on those who are suffering from sickle-cell disease and on those who are carriers of the trait and who are not suffering from the disease but who can pass it on?
My second question is about something we haven’t talked much about. You said that sickle-cell disease can affect cognitive capacity. I have loved ones who are parents, and because of their child’s cognitive behaviour and capacity, they had the test done to see whether their child was a carrier of the gene for sickle-cell disease.
Is that just a reaction, or is it something real for carriers of the sickle-cell disease gene or carriers of the trait?
[English]
Dr. Pakhale: “Yes” and “yes” are the short answers. The registry will be including people with sickle cell disease and also those with the carrier — the trait — so that we have the complete picture and also because the people with sickle cell disease get devastating symptoms, as you heard before, but people with the sickle cell trait also get symptoms, which are totally ignored everywhere right now because they just have the trait. One of my cousins is getting a hip replacement because of the sickle cell trait. Nothing else is there, just the sickle cell trait.
There are a lot of symptoms that we don’t know because there is not a lot of research, so we need more research in this field so that we know the symptoms that a person with the sickle cell trait presents with. We need to learn that. The registry will include that.
For the cognitive capacity, sickle cell affects from head to toe, as I said. A lot of sickle cell patients get multiple strokes. Some are overt strokes and some are mini-strokes. That is repeated damage. Also, sickle cell is affecting the blood vessels, blocking them. With repeated chronic lack of blood with repeated attacks, the cognitive capacity could be affected in certain people with the severe disease, and their brain is directly affected.
Those concepts will also be captured in the registry as well as the impacts of that in decision making, disability credits, schooling and accommodations for that. It is very important. But we do not know that landscape right now.
The Chair: Thank you very much, witnesses. This brings us to the end of this panel, and I would like to thank you for your participation, for your testimony and for helping to enlighten and focus us on what we need to think about.
(The committee adjourned.)