Sinthu Srikanthan advocates for removing barriers for people with sickle cell disease in Senate testimony

First year PhD student, Sinthu Srikanthan, was invited to testify to the Senate last week on BILL S-201, an Act respecting a national framework on sickle cell disease.  

As a social worker for the University Health Network’s Red Blood Cell Disorders Clinic, Sinthu has supported adults with sickle cell disease and thalassemia — inherited blood disorders that disproportionately affect Black and racialized populations. As a PhD student, her goal is to advance an understanding of sickle cell disease from a sociological and anti-colonial perspective. In particular, she is interested in using Institutional Ethnography to investigate how the social organization of our healthcare system impacts the experiences of people with the disease. 

“I see the everyday health challenges faced by people with red blood cell disorders (hemoglobinopathies) as microcosms of anti-Blackness, racism, and ableism in Canadian society,” describes Sinthu. 

Click here to watch a video of Sinthu’s testimony (starting at 11:49:26). Sinthu also shared the text from her testimony, below. 

Testimony to the Standing Senate Committee on Social Affairs, Science and Technology 

Text of Sinthu Srikanthan’s testimony on October 2, 2025, Ottawa, ON, Canada. 

Thank you, Madame Chair, Honourable Senators, and Members of the Senate committee for allowing me to speak today.  

My name is Sinthu. I’m a PhD student at the University of Toronto in the Faculty of Social Work. I’m also a social worker at the University Health Network’s Red Blood Cell Disorders clinic, which, with over 2,500 patients, is Canada’s largest hemoglobinopathy program. 

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 affects 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 of that for 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 Canada Pension Plan’s disability program, 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, a life-limited 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 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 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. 

Sinthu Srikanthan, PhD Student and Social Worker in University Health Network’s Red Blood Cell Disorders Clinic, with Senator Wanda Thomas Bernard

Read More about Sinthu’s Approach to Understanding Sickle Cell Disease 

Srikanthan, S. (2024). Whiteout: a social history of sickle cell disease in Ontario, Canada. Critical Public Health, 34(1), 1-11.  

Srikanthan, S. (2023). Contested disability: Sickle cell disease. Health & Social Work, 48(3), 209-216. 

Left to right: Ulysse Guerrier (Sickle Cell Association of Ontario), Biba Tinga (Sickle Cell Disease Association of Canada), Senator Wanda Thomas Bernard, Sinthu Srikanthan, and Liben Gebremikael (TAIBU Community Health Centre)