A Brother’s Legacy Becomes a National Movement
In the landscape of Canadian healthcare advocacy, few stories are as personally compelling or professionally impactful as that of Lanre Tunji-Ajayi. Born in Nigeria and later settling in Canada in 1992, Lanre’s journey from grieving sister to nationally recognized health advocate illustrates how personal tragedy can catalyze systemic change. Her younger brother, Sunday Afolabi, lived with sickle cell disease until his death at the age of 29, a loss that would fundamentally shape the trajectory of Lanre’s life and career.
Sickle cell disease, a genetic blood disorder that causes red blood cells to become rigid and crescent-shaped, affects predominantly people of African, Caribbean, Middle Eastern, and South Asian descent. In Nigeria, where Lanre grew up, the disease is relatively common, yet treatment options and support systems remain inadequate. Watching her brother struggle with the painful crises, fatigue, and complications that characterize SCD gave Lanre an intimate understanding of the disease’s devastating impact on patients and families alike. This personal experience would later inform every aspect of her advocacy work, lending authenticity and urgency to her efforts.
After immigrating to Canada, Lanre pursued additional education in healthcare, completing programs in Hearing Instrument Sciences at George Brown College and eventually earning certification as a Hearing Aid Specialist in April 2002. This professional foundation in healthcare provided her with crucial insights into the Canadian medical system, its strengths, and its significant gaps, particularly regarding rare diseases affecting racialized communities. She later expanded her expertise by obtaining a Certificate in Adjudication for Administrative Agencies, Boards, and Tribunals from Osgoode Hall Law School at York University in 2017, equipping herself with the legal and administrative knowledge necessary to navigate complex policy environments.
The formal beginning of Lanre’s advocacy work came in June 2005 when she and her husband, Elder Timothy Tunji-Ajayi, established the Seed of Life Philanthropic Organization through their business, All Naturals Cosmetics Inc. Created explicitly in memory of her brother, this initiative represented Lanre’s commitment to ensuring that other families would not have to endure the same struggles her family had faced. The organization focused on raising awareness about sickle cell disease and providing educational and social support to patients, addressing the profound isolation and lack of information that many SCD patients experienced in Canada.
By 2010, the Seed of Life Philanthropic Organization had evolved into the Sickle Cell Awareness Group of Ontario, known as SCAGO, with Lanre serving as its Founder and Chief Executive Officer. Under her leadership, SCAGO became far more than a support group. It emerged as a comprehensive advocacy platform that addressed health promotion, patient and clinician education, and direct patient support. SCAGO filled critical gaps in services for individuals living with SCD in Ontario, providing resources that the mainstream healthcare system had failed to deliver. The organization’s work ranged from organizing educational seminars for healthcare providers to offering peer support networks for patients navigating the complexities of living with a chronic, painful condition.
Building a National Framework for Sickle Cell Disease Care
Lanre’s vision extended beyond provincial boundaries. Recognizing that fragmented, province-by-province approaches to SCD care resulted in inconsistent treatment standards and inequitable access to resources, she co-founded the Sickle Cell Disease Association of Canada in 2012. Serving as SCDAC’s first President and Chief Executive Officer until 2017, Lanre worked tirelessly to establish a national framework for SCD advocacy and care. Her responsibilities included liaising with federal and provincial health ministries, facilitating professional development for member organizations across the country, and fostering collaborations both nationally and internationally.
During her tenure at SCDAC, Lanre defined the association’s mission, vision, and strategic priorities, essentially building the organizational infrastructure from the ground up. She developed governance structures that would ensure sustainability and effectiveness, working closely with the Board to deliver programs that directly improved patient outcomes. This was not merely administrative work but rather the foundational labor required to transform grassroots advocacy into a professional, influential organization capable of affecting policy change at the highest levels of government.
One of Lanre’s most significant achievements was her instrumental role in implementing newborn screening programs for sickle cell disease across several Canadian provinces. Newborn screening allows for early detection of SCD, enabling medical intervention before complications arise and dramatically improving long-term health outcomes. In many jurisdictions, however, such screening was not standard practice, particularly for diseases predominantly affecting racialized communities. Lanre’s advocacy efforts, which included presenting evidence to health officials, collaborating with medical professionals, and mobilizing patient communities, helped change this reality. Her work demonstrated that with proper screening and early intervention, children born with SCD could lead longer, healthier lives with fewer emergency hospitalizations and better quality of life.
Equally important was Lanre’s work to establish National Sickle Cell Awareness Day in Canada. In 2013, she collaborated with Senator Jane Cordy to draft and advance Bill S-211, legislation calling on the Canadian government to formally recognize June 19 as National Sickle Cell Awareness Day. The bill’s journey through Parliament was lengthy, but Lanre’s persistence paid off when it passed the House of Commons on November 22, 2017. This achievement represented more than symbolic recognition. It created an annual focal point for education, advocacy, and community mobilization, raising the profile of a disease that had long been neglected in Canadian public health discourse.
Not content with federal recognition alone, Lanre worked at the provincial level to ensure Ontario also formally acknowledged the importance of SCD awareness. In 2021, she collaborated with MPP Andrea Khanjin and MPP Rudy Cuzzetto to introduce Bill 255, which called on the Ontario government to recognize both June 19 as Ontario Provincial Sickle Cell Awareness Day and May 8 as Thalassemia Awareness Day. The bill’s passage through the Legislative Assembly in just three months, receiving approval on June 3, 2021, demonstrated the effectiveness of Lanre’s advocacy approach, which combined personal narrative, scientific evidence, and strategic political partnerships.
Lanre also played a key role in the development and implementation of Ontario Health’s Quality Standards for Sickle Cell Disease, a comprehensive framework designed to standardize care and improve treatment outcomes across the province. Additionally, she supported the introduction of the Improve Access to Health Care Act in 2020, legislation aimed at reducing barriers to hospital treatment for patients with SCD and other chronic conditions. These policy achievements reflected Lanre’s systematic approach to advocacy, one informed by her professional qualifications in healthcare and legal administration, which enabled her to translate patient needs into actionable policy recommendations.
Confronting Treatment Access and Equity Challenges
Despite these successes, Lanre has been outspoken about the significant challenges that remain in SCD care, particularly regarding access to disease-modifying therapies and cutting-edge treatments. She has consistently advocated with provincial governments to cover the cost of hydroxyurea, a disease-modifying therapy that has been shown to reduce the frequency of painful crises, decrease emergency room visits, and improve overall health outcomes for people living with SCD. The fact that financial barriers still prevent many patients from accessing this relatively affordable medication represents, in Lanre’s view, a failure of the healthcare system to prioritize the needs of racialized communities.
More recently, Lanre has actively lobbied the Canadian government to approve gene-based therapies such as Casgevy, Lyfgenia, and CRISPR-based treatments, which are currently available in the United States and United Kingdom but not yet in Canada. These therapies represent a potential cure for sickle cell disease, offering hope to patients who have spent their entire lives managing a painful, life-limiting condition. However, the price tags associated with these treatments, approximately $2.1 million per patient for Casgevy and $3.1 million per patient for Lyfgenia, present enormous challenges for healthcare systems already struggling with budget constraints.
Lanre has emphasized both the curative potential of these therapies and the urgent need for creative funding solutions that would make them accessible to Canadian patients. Her advocacy in this area reflects a sophisticated understanding of healthcare economics, recognizing that while the upfront costs of gene therapies are substantial, the long-term savings from reduced hospitalizations, emergency room visits, and ongoing medical management could make these treatments cost-effective over a patient’s lifetime. Nevertheless, she has been realistic about the barriers, noting that affordability and equitable access remain significant obstacles that will require coordinated efforts from government, pharmaceutical companies, and patient advocacy organizations to overcome.
Beyond her work in Canada, Lanre has established herself as a global leader in SCD advocacy. In 2019, she co-founded the Global Alliance of Sickle Cell Disease Organizations, which was officially launched in the Netherlands in January 2020. Serving as GASCDO’s first president and CEO, Lanre brought together SCD advocacy groups from around the world to strengthen collaboration, share knowledge, and coordinate advocacy efforts across different countries. This international perspective has enriched her Canadian work, allowing her to identify best practices from other jurisdictions and adapt them to the Canadian context.
In 2022, Lanre took her global advocacy efforts even further by co-founding the Global Action Network for Sickle Cell and Other Inherited Blood Disorders, known as GANSID. As its inaugural Chief Executive Officer, she has advanced advocacy efforts across multiple countries and strengthened GANSID’s collaboration with the World Health Organization, positioning the organization as a key global partner in improving care and outcomes for people affected by inherited blood disorders. This work reflects Lanre’s conviction that while local advocacy is essential, many of the challenges facing SCD patients transcend national borders and require coordinated international responses.
Throughout her career, Lanre has received numerous awards and honors recognizing her contributions to healthcare advocacy. She was named one of the 100 Most Accomplished Black Canadian Women and received the Meritorious Service Medal from Governor General Mary Simon for her exceptional contributions to SCD awareness and advocacy. In 2017, she received the Canadian Senate 150 Award for her work on newborn screening and the establishment of National Sickle Cell Awareness Day. Most recently, in 2025, she received the King Charles III Coronation Medal for her significant contributions to her community.
These accolades, while gratifying, represent for Lanre not personal achievements but rather recognition of the broader movement she has helped build. Her work has demonstrated that effective health advocacy requires not only passion and personal commitment but also professional expertise, strategic thinking, and the ability to build coalitions across diverse stakeholders. From her early days establishing the Seed of Life Philanthropic Organization in memory of her brother to her current role leading global advocacy efforts, Lanre Tunji-Ajayi has transformed the landscape of sickle cell disease care in Canada and beyond, ensuring that Sunday Afolabi’s legacy lives on in the improved lives of countless patients and families.
