In this Interview with Stanley Ugagbe of the Nigerian Canadian Newspaper, Canada, Lanre Tunji-Ajayi, a respected leader and global patient advocate for Sickle Cell Disease (SCD) and other hereditary blood disorders community, shared insights on her journey so far. As a sibling of someone living with sickle cell disease (SCD), she transformed her grief into a mission, reshaping the narrative of SCD awareness. Her focus on supporting not just patients but their families and communities has revolutionized care frameworks, particularly in Canada. From relentlessly challenging systemic barriers to pioneering multi-pronged funding strategies, Lanre has emerged as a steadfast champion for health equity. With a legacy marked by numerous accolades and a growing global impact, she continues to inspire the next generation of advocates to advance the fight against inherited blood disorders.
NCNC: Your advocacy for sickle cell disease (SCD) began after the loss of your brother. How did this personal tragedy shape your leadership approach and your vision for SCD awareness globally?
Lanre: Thank you. I’m not a mother to somebody with sickle cell. I’m not a child to somebody with sickle cell. I’m a sibling of someone with sickle cell. That has shaped my outlook because I find that in the sickle cell community, or even outside of the sickle cell community, the people always put the focus on the person with the disease and maybe the parents. But seldom do we reflect on the siblings of the individual living with this disease. How is this affecting them? You know? What does this mean to them? I remember my mother always focused on my brother because he’s the one that is sickly and then my sister to some degree as well because she also has the disease, one of my sisters. But what about we? The thing is because we don’t have a disease, we are okay. But we are not okay because we are also mourning. We are mourning the loss of what could have been if my brother or my sister didn’t have this disease. What could we have been able to do or achieve together? And that has shaped how I run my organization. I put a lot of focus on family members and how we can support them because they are also affected. It’s not just the individual living with the disease, but the extended family members, including the siblings, must be picking it up. We must also, you know, psychologically and psychosocially, we must look at how to support them as well. And that has shaped how I run every organization that I have partnered with.
NCNC: As the founder of SCAGO and SCDAC, you’ve transformed the landscape for SCD in Canada. What strategies were most effective in overcoming institutional barriers, and what challenges remain?
Lanre: Thank you Mr. Stanley for that question. So I’ll tell you, anyone who wants to make a difference and move mountains, you have to be persistent. You will get a lot of no’s, but don’t be deterred and don’t be afraid of their faces and that is what drives me. It doesn’t matter who tells me no, if the Prime Minister tells me no, I’ll say thank you, but I’m going to go back, I’m going to go and review what happened and I’m going to re-strategize and I’m going to come back to you again, I’m not taking a no until you say a yes. And that is what I have, as you know, in Canada, unlike Nigeria, over 6,000, I would say maybe 7,000 people in the whole country, that’s the percent. And in my province here in Ontario, only about 3,500, about half of that number live in one province, which is Ontario. So it’s not a major issue that affects many Canadians. In the beginning, they see it as a minority problem, as a black people problem, but by not taking no, by pushing forward, meeting with the policymakers, the politicians, the parliamentarians, the bureaucrats, and being strategic, that is what is to push and change the landscape of sickle cell in Canada. I can tell you right now, that Canada has approved the new curative therapy for sickle cell cast GD to the cost of about 2.8 million per patient. That didn’t happen because we sat down and we took notes. It happened because we pushed and we pressed. So persistence is the name of the game. In terms of what challenges we need, I mean, our latest needs that we put to the government last year was about the curative therapies and now they have been approved. So, you know, as our patients continue to have needs, we will keep on putting it to the right table to make sure that things are being done well. But I can tell you, people living with sickle cell disease in Canada, especially in the province of Ontario that their quality of life has greatly improved and they have access to modifying therapies and they will soon have access to curative therapy.
NCNC: With your initiatives to address disparities for racialized communities, how do you evaluate Canada’s progress in achieving equity, diversity, and inclusion in healthcare?
Lanre: At the height of COVID, I was a mentor in setting up a racialized community working group. It’s just a loose working group that has organizations working on different diseases that affect people of diseases like diabetes and you know like thalassemia, sickle cell, and similar disorders that affect people from racialized minority groups, maybe people from Africa, from the Caribbean, from Southeast Asian region, Mediterranean communities and so on and so forth. And this is because we need to bring our voices together to advance health equity within this community. And so the work that we’ve done, I can tell you what we’ve seen, especially with sickle cell disease, how much money the government has put into it. I can tell you that in Canada, there’s a strong, strong progress and the government is really helping and working to advance equity, diversity, and inclusion in healthcare. As I told you, in my province, we’ve asked the ministry to set up new centers for sickle cell. And in the last year, 2024, eight new centers were funded by this government. That is amazing. You know, so they are looking to support and ensure that no Canadian, especially in Ontario here where I work, is left behind. Everyone should have access to the right care, whether the disease you have is what affects the majority of the people or what affects the minority of the people, they should still receive the right care at the right time.
NCNC: As a leader of GASCDO, what are the critical steps needed to strengthen the global network of organizations addressing inherited blood disorders?
Lanre: I am a co-founder as well as the chief executive officer for the Global Action Network for Sickle Cell and other inherited blood disorders. It is a newly founded organization founded about two years ago. I can tell you in the last two years it has done quite a bit of work. It has over 70 member organizations across 30 countries and their focus is more on low and medium-resource countries. Again, we’re talking about, from your last question, you were talking about access to the right care. And that is the whole goal, right? To ensure that it doesn’t matter if you are living in a low-resource country or a high-resource country, you are able to have access to the right care.
So this is why the organization came together to really bring the voices of people affected by inherited blood disorders. If you inherit a blood disorder, you did not ask for it. You did not acquire it. You did not cause it upon yourself. You have it because you were born with it. And because you were born with it, in my opinion, irrespective of any other way that we could get a disease or a disorder, being born with something, we need to ensure that those individuals living with those disorders have access to the right care at the right time. Whether they live in Africa, they live in India, it shouldn’t matter. So, to answer your question, the number one step would be collaborating, working together, don’t work in silos. Look at stakeholders that have similar interests and meet with them, network with them. And that’s what we’ve done in our organization, for instance. We have met with different groups and also with the World Health Organization. We have to work with those global groups if we must bring public, private, and government together to advance the cause of people living with inherited blood disorders movement.
NCNC: How has your business acumen with All Naturals Cosmetics Inc. informed your advocacy work and ability to sustain nonprofit initiatives?
Lanre: That’s a very interesting question, given that All Natural is a small profit, which is a business setup, which is my second-management manufacturing company that we have. Number one, the advocacy work that we’ve done, we were able to do it because we have the All Naturals. That is where the idea of giving given back to our communities started from. I see a lot of people that say, I’ve seen people that maybe because they have a child or they have a parent living with a disorder, like sickle cell or maybe seniors or seniors, and they wanted to start an organization because of course, they are moved, they want to help, but many times they don’t have the business acumen necessary to run an organization. So it’s one thing to have the passion for something because I am affected and I want to make a difference, but you must also equip yourself, build your own capacity, which for me came naturally because already I have this acumen gained from being a business owner and I transferred all of those business leadership skills, governance and all of that, business administration into running the non-for-profit. This is why my not-for-profit is very successful. My organization in Canada just received 1.2 million grants from the government. We were able to work at the governmental level because of the business acumen that I have brought into it. And just to make a note, also to say, at the global, the Global Action Network for Sickle Cell and others, in Arizona Project and others, we do have a free online course that people who are patient organizations, or people who are interested in working in patient organizations and leading not-for-profit organizations like that can take to develop themselves and build their acumen in this area.
NCNC: Securing resources is often a bottleneck for advocacy. What innovative approaches have you implemented to fund research, campaigns, and education programs for SCD?
Lanre: So for sickle cell disease, for us, the innovations, so again, like I said, as you think about it, sickle cell is in countries like Canada, sickle cell is a minority health issue in the sense that it affects a minority number of people in the country. Even though I’ve changed the slang to say that if it affects Canadians, it is a Canadian disease. It’s no longer, we don’t want to hear it’s a minority disease, it’s a Canadian disease. But the thing is, in terms of funding, you find like other disease areas like cancer, cancer has a lot of funding because many people have cancer. So you understand why governments would spend a lot of money on cancer. You understand why government would spend money on diabetes, because those disease areas have a lot of people, unlike sickle cell. So then we have to sit down and strategize and say, how can sickle cell also have access to good money? When you compare to cystic fibrosis, for instance, which also affects a very limited number of people, as a matter of fact, Canada has more people with sickle cell disease than even cystic fibrosis. Even though cystic fibrosis affects more white people, there is more sickle cell than cystic fibrosis. There is more sickle cell than hemophilia. Yet, hemophilia has more funding. Cystic fibrosis has more funding. And so this is why I sat down and I said, how do we get funding? How do we make things different? We need to push for the government to fund us. We need to push private organizations and companies to fund us. We need to push with the industries, pharmaceuticals. And so my strategy has been to have this multi-pronged approach whereby we’re seeking funding from government, pharmaceuticals, private and public agencies. And that is how we’ve now been able to fund.
NCNC: Your accolades are numerous, including the Meritorious Service Medal and the Canada Senate 150 Award. Which recognition has been the most meaningful to you, and why?
Lanre: So yeah, you’re right. The one that I think is most meaningful to me is the Meritorious Private Medal because up to today I don’t even know how I was nominated and who nominated me. And when I asked the government office this question, they said, it has to be somebody who really feels that your work has been so impactful, that put your name forward, and they have to do the research and do their work to see if truly I deserve their work. And also there are more, there are also other awards given to me by different community organizations and so on that I also appreciate because again when your community recognizes you, it’s a good thing. And so each one of them is meaningful and I think being recognized by the government of Canada has really touched me as well.
NCNC: With decades of impactful work, what’s next for Lanre Tunji-Ajayi? Are there specific gaps in SCD advocacy or broader healthcare initiatives you aim to address?
Lanre: There’s still so much work to be done, not only in Canada but globally. What I’m trying to do actively is to build the next generation of strong advocates to carry the torch forward and move this work forward. As we get older, we will get tired. This is the time to build and ensure that the next set of advocates that we have in Canada will be strong enough to take this to the next level and do even more work than I have done. And then, at the global level, I’m also hoping to empower many organizations across different countries. I will be in Africa this January before the end of January. I’m doing some work there.
I will also be in other parts of the world. I intend to travel to Brazil this year, to travel to the Philippines this year. I will be in India this year and many parts of Africa and get the work going to ensure that we build up these patient advocates and the programs and the healthcare providers for serving people affected by inherited blood disorders, so whether it’s sickle cell, or thalassemia, or hemophilia.
