Whiteout: a social history of sickle cell disease in Ontario, Canada

ABSTRACT

What does it mean to develop health policies and services for diseases that are socially constructed as racialized in a country that continuously erases race? Sickle Cell Disease (SCD), the world’s most common genetic disorder, is receiving increased policy attention as a multi–system blood disorder that disproportionately impacts Black communities in the province of Ontario, Canada. In January 2023, Ontario Health launched the quality standard, Sickle Cell Disease: Care for People of All Ages (SCD Quality Standard), positioning this document as an expression of the Province’s commitment to Black health. While the SCD Quality Standard aims to redress institutional neglect, it is vulnerable to claims that it is ahistorical. This commentary therefore seeks to historicize the SCD Quality Standard by tracing the social history of SCD in Ontario during welfare state expansion and devolution. In doing so, this commentary locates the SCD Quality Standard within Canada’s colonial master narrative as a white liberal democracy. Concepts of bounded justice are drawn on to examine Ontario’s racialized responses to SCD and the limitations of health policy-making for social justice.

KEYWORDS:

• Anti-Black racism
• health inequalities
• healthy public policy
• sickle cell disease

Sickle Cell Disease (SCD), the world’s most common genetic disorder, is receiving increased policy attention as a multi-system blood disorder that disproportionately impacts Black communities in the province of Ontario, Canada. In January 2023, Ontario Health, the government body that, under Premier Doug Ford’s Progressive Conservative government, oversees the healthcare system of Canada’s most populous province, launched the quality standard, Sickle Cell Disease: Care for People of All Ages (hereafter referred to as the SCD Quality Standard). Based on evidence and the expert consensus of healthcare providers and people with SCD as well as their communities, the Quality Standard seeks to address the care of all people with SCD in Ontario. Apart from outlining elements of high-quality care, the SCD Quality Standard aims to further ‘the goals of Ontario Health’s Equity, Inclusion, Diversity and Anti-Racism Framework’ (Ontario Health, 2023, p. 7), identifying the health policy document as strengthening the state’s ‘commitment to Black health’ (Ontario Health, 2023, p. 7). Further, in September 2023, Ontario Health situated SCD as one of the ‘needs of Black populations’ (Ontario Health et al., 2023, p. 10) within the province’s Black Health Plan. In doing so, the state positions the SCD Quality Standard as a health equity intervention for Black communities in Ontario (M. S. Creary, 2018, 2021).

Without a doubt, the SCD Quality Standard – a policy document that explicitly engages with Anti-Black racism (ABR) as a distinct form of racism that targets Black peoples and is rooted in colonialism and the Transatlantic enslavement of Africans and African-descent peoples (Anucha et al., 2017; Benjamin, 2003; Mensah, 2010) – is urgently needed in Ontario. Healthcare complicity with systemic ABR (Massaquoi, 2023), coupled with the social construction of sickle cell as a ‘Black’ (Tapper, 1999) and, particular to Global North, multi-ethnic welfare states, ‘immigrant’ disease (R. Bivins, 2013; R. E. Bivins, 2015; K. Flynn, 2014, 2016; Redhead, 2021), creates gross inequities for impacted people. For instance, people with SCD often endure lengthy delays to care in Ontario’s emergency settings (Chan et al., 2020; Gulilat et al., 2023). In such settings, healthcare providers routinely subject people with SCD to dehumanizing treatment, including ‘drug seeker’ stereotyping, especially when they are seeking medical treatment for excruciating pain (City News, 2021; Durgam et al., 2023). Finally, despite living with a life-threatening condition that causes substantial morbidity, people with SCD frequently encounter racialized barriers, including exclusionary medical criteria, to accessing disability accommodations and social security payments (Srikanthan, 2023) – essential tools for supporting quality of life (Atkin et al., 2022; Rouse, 2009).

These realities are rooted in the anti-Black notion that people with SCD, socially constructed as Black people in Global North societies (Tapper, 1999), are undeserving of care (Redhead, 2021) – seemingly, a paradox in Canada’s universal healthcare system (Massaquoi, 2023). And so, while health equity interventions aim to redress institutional neglect, as Dr. Melissa S. Creary (2021) cautions on the bounded nature of justice, the SCD Quality Standard is vulnerable to criticism for being an ahistorical policy document. Specifically, the SCD Quality Standard is silent on the long-term impacts of marginalization that produce neglect in Ontario and the need for social transformation (M. S. Creary, 2021). As such, the SCD Quality Standard is situated within the current projects of white supremacy and neoliberalism, at risk of offering only paltry benefits of recognition to communities that are subjected to deeply entrenched oppression.

To spur meaningful action, this commentary seeks to historicize SCD in Ontario. Specifically, I trace the state’s responses to SCD in Ontario during two critical periods: 1) the post-World War Two (WW2) period of the 1960s and 1970s – an era characterized by welfare state expansion and liberalized immigration; and 2) the 1990s – the neoliberal era of welfare state erosion and healthcare devolution. In doing so, I identify pertinent discourses – that is, the unspoken ideas and norms (Foucault, 1980) – of race and entitlement that govern healthcare services for people with SCD in Ontario. I begin this analysis with an overview of SCD as well as its required care and socio-economic epidemiological profile in Ontario.

A multi-system disease requiring wholistic, multi-disciplinary, and team-based care

SCD is an inherited blood disorder in which impacted people have abnormalities in their red blood cells’ hemoglobin molecules. While red blood cells are normally round, smooth, soft, and flow through the vasculature, those of people with SCD become rigid and crescent-shaped, particularly under stressful conditions. These peculiarly-shaped cells have a propensity to cause blockages in capillaries, resulting in excruciating episodes of vaso-occlusion (also known as pain crises) (Serjeant & Serjeant, 2001).

While vaso-occlusive episodes are ‘emblematic of the sickle cell experience’ (S. M. Dyson, 2019, p. 10), SCD is more than pain. The complications of SCD are manifold and include acute chest syndrome, anemia, avascular necrosis, chronic pain, fatigue, infections, leg ulceration, organ damage, and strokes (Serjeant & Serjeant, 2001). Living with a chronic, unpredictable, and at times, life-threatening condition has implications for mental health, education, employment, relationships, and other social domains of life (S. M. Dyson, 2019).

As pronounced by the Quality Standard, managing SCD, a multi-system disease, requires comprehensive care – a wholistic, multi-disciplinary, and team-based approach to care that not only manages the disease, but also prevents and treats complications while enhancing physical, emotional, mental, and spiritual wellbeing (Ontario Health, 2023). Although elements of comprehensive care for SCD have been extensively delineated (Okpala et al., 2002), implementing meaningful models of care requires consideration for the broader socio-economic and political context.

A socio-economic epidemiological profile of sickle cell disease in Ontario

An estimated 6 500 people with SCD live in Canada (Ontario Health, 2023). Ontario is home to over 3 500 people with SCD, with the majority living in and around the Province’s capital city of Toronto (Pendergrast et al., 2023). These numbers are projected to rise with globalization and increasing immigration due to the association of SCD with ancestry (Ontario Health, 2023). Namely, given the biological links between sickle cell trait and malaria, SCD is thought of as a marker of territory (Carter & Dyson, 2011), with the condition commonly diagnosed in people whose ancestors come from malaria-endemic regions of Africa, the Caribbean, Latin America, the Mediterranean, the Middle East, and South Asia (Ontario Health, 2023).

As a genetic condition, SCD impacts all peoples regardless of race; however, in Ontario, as in other Global North contexts (S. M. Dyson, 2019), the malady disproportionately impacts peoples racialized as Black (Ontario Health, 2023). As healthcare is but a microcosm of society, ABR is invariably organized into the planning and delivery of health and social care for people with SCD in Ontario. For example, impacting only 0.05% of Ontario’s population, the prevalence of SCD in the province is 1 in 4200 (Pendergrast et al., 2023). This figure meets Health Canada’s definition of a rare disease (less than 5 in 10 000 people being affected) and is twice that of hemophilia and cystic fibrosis – genetic conditions that are better-funded than SCD in Canada (Pendergrast et al., 2023) and socially constructed as ‘white’ diseases (Thompson et al., 2001; Wailoo & Pemberton, 2006).

Existing data suggests that 41% of all people with SCD in Ontario live in neighbourhoods with the province’s lowest incomes (Ontario Health, 2023; Pendergrast et al., 2023) – a figure that is triple that for Canada’s general population (Uppal, 2023). In Toronto, which houses Canada’s largest as well as oldest SCD clinic and is home to a significant number of people with SCD (Pendergrast et al., 2023), such figures spatially align with racialized and newcomer communities that are under-resourced for healthcare and social services as well as public transportation (Hulchanski, 2010, 2019; Ontario Health, 2023). Brampton, a suburb northwest of Toronto, is home to the largest number of people with SCD in Ontario and likely, Canada (Binding, 2022). A multicultural and diverse community, Brampton, as a whole, is impacted by racialized poverty as well as inequitable access to services and public transportation (Ahmed-Ullah, 2016; Hulchanski, 2019).

Together, the epidemiological profile of SCD (Pendergrast et al., 2023), viewed in the context of racialized social constructions of diseases (Tapper, 1999; Thompson et al., 2001; Wailoo & Pemberton, 2006) and available socio-economic data on areas of high prevalence (Ahmed-Ullah, 2016; Hulchanski, 2010, 2019), suggests that the health of people with SCD in Ontario is exacerbated by widespread and systemic ABR, poverty, and inequity. This socio-economic epidemiological profile invites critical public health attention to the socio-historical context of SCD in Ontario.

Sickle cell disease amidst welfare state expansion: immigrant exclusion and healthcare

While the history of SCD is well-documented in the USA, its Canadian story remains to be fully told. An examination of Canada’s responses to SCD during the Post-WW2 period of the 1960s and 1970s – an era characterized by welfare state expansion as well as liberalized immigration – yields insight into the discourses of SCD circulating in Ontario as the province built its social infrastructure (George, 2017). As Canada emerged from the World Wars, social values largely favoured a public and state-managed welfare system. Accordingly, this era saw the emergence of social welfare programs, including the introduction of universal healthcare (George, 2017). Additionally, to meet widespread labour shortages, this era also saw the liberalization of Canada’s previously ‘white only’ immigration policies. This included the introduction of immigration policies that sought to attract workers from the Caribbean, which, due to the legacies of imperialism, colonialism, and enslavement, was characterized with high unemployment rates and limited opportunities (Calliste, 1993; K. C. Flynn, 2011; Mensah, 2010).

While SCD gained intense visibility in the USA in the 1960s and 1970s (Nelson, 2011; Tapper, 1999; Wailoo, 2014), the condition was socially obscure in Canada (K. Flynn, 2014, 2016). Briefly, the first case of SCD in Canada was reported over 90 years ago in Montreal, Quebec in 1929 in a 7-year-old girl who immigrated to Canada from New York City, USA (Scriver & Waugh, 1930). 15 years later, Ontario saw its first case report of SCD in Hamilton in 1944 with a 58-year-old man who was originally from Missouri, USA (McKendry, 1944). Aligning with Canada’s post-WW2 welfare state expansion and liberalization of immigration (George, 2017), it was not until the late 1960s and into the 1970s that Ontario saw a rise in case reports of SCD (K. Flynn, 2014, 2016; Johnson, 2014; Speakman et al., 1966).

Race, illness status, and citizenship

Despite increasing case reports in the 1960s and 1970s, SCD remained largely invisible in Canada as it was ‘not exactly included in the medical research agenda on hereditary and genetic diseases, nor was it part of public discourse and consciousness’ (K. Flynn, 2014, p. 153). According to K. Flynn (2014), Ontario’s post-WW2 ‘sickle cell population consisted disproportionately of newcomers from Caribbean’ (p. 154), of whom ‘many, but not all, were of African descent’ (p. 167) and had received a ‘lack of material and medical attention’ (p. 154).

South of the border, SCD, largely due to the efforts of the Black Panther Party, gained intense political visibility in the USA (Nelson, 2011). Namely, during the Civil Rights Movement, SCD came to symbolize the pain, suffering, and disenfranchisement of African Americans (Wailoo, 2014). As US President Richard Nixon signed the National Sickle Cell Anemia Control Act of 1972 into law, establishing funding for a national three-year program for SCD education, information, screening, testing, counseling, research, and treatment (Nelson, 2011), those impacted by the malady in Canada – a nation state that continues to erase its own histories of enslavement and complicities with the Transatlantic Slave Trade (Mensah, 2010) – received ‘barely any institutional support’ (K. Flynn, 2014, p. 153).

The stark differences in the responses to SCD during this era point to unique national discourses of race, illness status, and citizenship. While medicine socially constructed SCD as a ‘Black’ disease across the globe (Tapper, 1999), the enduring invisibility of SCD in Canada suggested differences in how the condition was understood in this country due to its distinct imagination of race. Namely, in an American imagination governed by a racial ideology of hypodescent (‘one-drop rule’) (M. Creary, 2021), SCD, an inherited condition that disproportionately impacted African Americans, came to be a springboard for civil rights in the USA (Wailoo, 2014). However, in Canada, much like the UK (R. Bivins, 2013; R. E. Bivins, 2015; Redhead, 2021), the malady was constructed as one that exclusively impacted immigrant communities (notably, from the Caribbean) (K. Flynn, 2014), who were also targeted by the state’s liberalized immigration policies to meet the nation’s labour shortages (Calliste, 1993; Mensah, 2010). Reflecting broader trends of immigrant welfare state exclusion (George, 2017), SCD was obscured in Canada as an ‘immigrant’ disease (K. Flynn, 2014, 2016; Johnson, 2014). Moreover, as a condition that disproportionately impacts Black communities in Canada, the social obscurity of SCD is a function of the enduring and purposeful erasure of race in the Canadian imagination (Thobani, 2007).

With Canada’s master narrative as a benevolent white settler society, in which citizens are constructed as white, masculine, competent, and civilizing subjects while non-citizen outsiders are constructed as racialized, immigrant and/or Indigenous, irrational, deceitful, savage, and criminal Others (Thobani, 2007), the confluence of health and immigration policies constructed newcomers as foreign workers – a source of cheap labour – as opposed to citizens with state entitlements and political rights (Calliste, 1993). It is in this context that the healthcare needs of newcomer communities in Canada – including the care of people with SCD – were erased (K. Flynn, 2014). In line with Canada’s nation-building mythology, people with SCD, socially constructed as members of the nation’s immigrant labour class, were seen as invisible non-citizens who were undeserving of state entitlements, including healthcare (K. Flynn, 2014; Thobani, 2007). These broader policy discourses informed health services for people with SCD in Ontario, including emergency care and universal newborn screening, during the 1960s and 1970s.

Disjointed, fragmented, reactive, and racist care

While a SCD clinic sprung up for adults at the Toronto General Hospital (TGH) in 1970 (Sickle Cell Disease Association of Canada [SCDAC], 2016) and children at the Hospital for Sick Children (HSC) in 1988 (Wright, 2017; Zipursky, 1991), care for these patients was often disjointed, fragmented, reactive, and marked by racism. The late hematologist, Dr. William Francombe, began caring for adults in Toronto with SCD in 1965. He described the difficulty of estabishing an organized approach to care for SCD during this period:

Many of our patients were regularly unwell with pain and ended up in the emergency room, so it was difficult to keep organized as they were often receiving treatment outside of the clinic. Doctors and nurses did not have a lot of experience with SCD and it was difficult to set an organized approach. (Francombe as cited in SCDAC, 2016, p. 11)

Disorganization meant that patients frequently resorted to accessing care in emergency room settings. Here, Dr. Francombe described that patients faced barriers to care, with healthcare providers subjecting SCD patients to racist ‘drug seeking’ stereotypes:

ER [Emergency Room] staff did not always believe the patients when they claimed they were in extreme pain and thought they were just looking for drugs. We had to educate the ER and ward doctors and nurses.

(Francombe as cited in SCDAC, 2016, p. 11)

Dr. Francombe lamented that this racist stereotype ‘continues to be a challenge 45 years later’ (SCDAC, 2016, p. 11). To this day, healthcare providers in Canada continue to weaponize pain against people with SCD (City News, 2021; Durgam et al., 2023).

Universal newborn screening for sickle cell disease: preventable morbidity and deaths

Another area of institutional neglect during the era of welfare state expansion in Ontario took the form of delays in implementing universal newborn screening for SCD, which, in identifying impacted babies for treatment, saves lives. In the USA, universal newborn screening for SCD had been considered since 1975 and fully implemented in 2006; however, in Canada, universal newborn screening for SCD was formalized in Ontario only in 2006 (El-Haj & Hoppe, 2018), requiring 25 years of community advocacy and lobbying (Johnson, 2014). Miss Lillie Johnson, a retired nurse, educator, and healthcare leader, ‘[became] an advocate for those living with SCD in 1965’ (SCDAC, 2016, p. 22). Miss Johnson describes how the absence of universal newborn screening for SCD in Ontario led to preventable deaths and suffering:

The doctors did not know these infants were being born with sickle cell. Because they were not testing if the gene was there … these children got very, very sick and we lost a lot of babies. (Johnson as cited in Nation, 2011)

Despite the availability of universal newborn screening in Ontario for rarer inherited diseases, such as Phenylketonuria, in 1965 (Newborn Screening Ontario, 2023), the state’s failure to implement universal newborn screening for SCD amidst increasing case reports meant that, ‘during the 1960s and 1970s, many patients died of the disease because not all doctors were familiar with the symptoms of sickle cell’ (Nation, 2011). It was not until 2006, and only with the advocacy of community members, that universal newborn screening for SCD was fully implemented in Ontario (Johnson, 2014). The 40-year delay in implementing universal newborn screening for SCD – a life-saving public healthcare measure – reflects institutional neglect of care for impacted peoples (S. M. Dyson, 2019), speaking to racialized exclusion of citizenship through health policy.

Neoliberal welfare state devolution: systemic racism and the fight for care

While specialist SCD care began to formalize in the 1980s in downtown Toronto at HSC and TGH, the 1990s’ era of widespread neoliberal restructuring in the public sphere brought new threats to people with SCD in Ontario. Neoliberalism is an economic and political project in which the relationships between the state, capital, and institutions are re-arranged such that the free market expands into all domains of society (Baines, 2017). Brodie (1999) summarizes the key features of neoliberalism as follows:

1. Privatization: State provision of services by virtue of citizenship are now met by the free market;

2. Decentralization: State responsibilities are devolved to local sites; and

3. Individualism: Needs are met at the level of the self or the family/voluntary sector.

Under neoliberalism, citizens are transformed into consumers while the state provides minimally and only as a last resort (Baines, 2017). The project of neoliberalism is particularly devastating towards racialized and immigrant communities because it renders systemic racism invisible to justify the retrenchment of public systems (Arat-Koç, 1999, 2012). SCD, socially constructed as a ‘Black’ and ‘immigrant’ disease (K. Flynn, 2014, 2016), was no exception, with the strategic erasure of race used to justify the undermining of care.

Racialized threats: decentralizing Ontario’s only pediatric sickle cell disease clinic

The neoliberal restructuring of Ontario’s healthcare system in the 1990s under Mike Harris’ conservative provincial government saw imperilled care for people with SCD as well as other chronic conditions that were marked by race and poverty (Braedley, 2012). During the 1990s, local HSC administrators targeted the SCD Clinic, then, Ontario’s only pediatric site for specialist SCD care, for decentralization. While the proposal was historically conflated with the deferiprone (L1) controversy (Wright, 2017),¹ a critical reading of the events with a focus on race reveals the unique vulnerabilities of healthcare for Black communities under neoliberalism (Atkin et al., 1998; Mota et al., 2022).

Following Harris’ deep cuts to healthcare, local administrators identified HSC’s SCD Clinic for decentralization to ‘satellite’ sites in community-based hospitals. While both SCD and Thalassemia patients made up HSC’s Hemoglobinopathy Program, administrators specifically targeted the SCD Clinic:

One of the targeted programs was the thalassemia and sickle-cell disease (SCD) program at the hospital, which had expanded rapidly in the new Atrium hospital. Indeed, from 1986 to 1998, the patient load of the lead clinician, Nancy Olivieri, had trebled from 150 to 450 patients (100 patients with thalassemia and 350 with sickle-cell disease), a reflection, in part, of the waves of Southern European, Middle Eastern, and African-Caribbean immigrants to the Metro Toronto area. The sickle-cell disease program (but not the thalassemia program) was designated in 1995 as “one of several programs to be decentralized (or ‘satellited’) to regional hospitals”. Both clinics had been part of one joint haemoglobinopathy program (established in 1988), of which Olivieri was the head. (Wright, 2017, p. 323)

The Sickle Cell Association of Ontario (SCAO), a community-based advocacy group founded by Miss Johnson, voiced concerns about the capacity of Scarborough Centenary Health Centre, one of the proposed regional hospitals for satelliting SCD care, in meeting the needs of children with SCD, a medically complex patient group that requires extensive healthcare coordination. In the following passage, Jeffrey (1997) quotes a SCAO newsletter article, which raised serious concerns on the impacts of decentralization of the SCD Clinic for patient care and research:

Although the Centenary [one of the community-based hospitals identified for decentralizing the SCD clinic] administrators gave us their assurances the satellite clinic will be closely linked to the Sick Kids [HSC] clinic and will maintain an equivalent standard of care, they were unable to answer our concerns regarding whether adequate funding has been committed to recruit and train the necessary personnel, such as a pediatric hematologist trained in sickle cell disease; whether measures the Centenary proposes to achieve an equivalent level of care to the expert care that is now available at Sick Kids [HSC] is feasible; and what safeguards will be put in place to ensure continuation of research in a tertiary care setting to treat or cure the disease. (SCAO as Jeffrey, 1997)

Dr. Nancy Olivieri, the then medical director of HSC’s Hemoglobinopathy Program, expressed concerns about decentralizing the SCD Clinic for patient safety and outcomes, including increased morbidity and mortality for children with SCD:

[SCD] is an illness which requires tertiary, expert management … in a tertiary clinical setting … There is no role, as the United States has shown us, for satellization of patients with this potentially fatal, and certainly chronically serious illness, to secondary or primary care centres. (Olivieri as cited in Jeffrey, 1997)

While administrators argued that decentralizing the SCD Clinic – which was relatively inexpensive as an outpatient program – was a rational measure in response to budget cuts, the research evidence suggested otherwise. Rather, the proposal ignored that decentralizing a clinic that vulnerable children and families relied upon was unethical and counter to their human rights (Jeffrey, 1997).

It is also important to note that the administrators proposed no such recommendations for decentralizing clinics treating children impacted by hemophilia, an inherited disease that largely affects communities racialized as white (Thompson et al., 2001). Further, there was no proposal to decentralize the Hemoglobinopathy Program’s Thalassemia Clinic, despite it sharing the same facilities with the SCD Clinic (Jeffrey, 1997). While Thalassemia also disproportionately impacts children from immigrant communities in Ontario, the SCD Clinic alone was targeted for decentralization (Wright, 2017). Although the particular reasons for this discrepancy remain unclear, it is worth noting that ethnographies of various North American hospitals facing neoliberal restructuring reveal how these institutions conflate SCD with poverty, Blackness, medical uncertainty (particularly around chronic pain), and high acute care utilization (and its costs) to socially construct patients as undeserving of care (Brewer, 2023; Ragins, 1995; Rouse, 2009). Finally, the administrators, who cited coordinated care close to home for patients as a reason for decentralizing HSC’S SCD Clinic, neglected the fact that the only adult SCD clinic in Ontario at the time was housed across the street at TGH (Thompson et al., 2001).

Rather, the local administrators were operating in a broader racialized context that deprioritized and undermined the healthcare needs of Black communities. The administrators used neoliberal rhetoric to argue that ‘in a climate of diminishing institutional resources, some programs would need to be closed, reorganized, or decentralized’ (Wright, 2017, p. 323). In the following passage, Dr. Olivieri’s commentary reveals how the neoliberal policy of decentralization negatively impacted a largely Black patient community through a colour-blind rhetoric that erases the salience of racism:

Such marginalization of services to an almost exclusively [B]lack population is a delicate issue. It is difficult to see how the Hospital’s Executive could justify to Toronto’s [B]lack community the policy of moving children with sickle cell disease away from the province’s only Comprehensive Care Program. (Olivieri as cited in Thompson et al., 2001, p. 227)

Following Dr. Olivieri, Antoni Shelton, then the executive director of the Urban Alliance on Race Relations (UARR), a community-based anti-racist advocacy group, spoke to how the proposal of decentralizing the SCD clinic placed Black communities at greatest risk: ‘This decision [decentralizing HSC’s SCD Clinic], if allowed to be implemented, will be harmful to many families in the Black community’ (Shelton as cited in Thompson et al., 2001, p. 229). In 1998, the legal counsel for Dr. Olivieri advised that clinical resources to the Hemoglobinopathy Program were reduced. Dr. Olivieri’s legal counsel further spoke to the implications of neoliberal privatization and individualism for a patient community that was already marginalized through social relations of race, gender (vis-à-vis caregiving), and class (Burnes et al., 2008; Hill, 1994), noting that the ‘children at risk include 350 sickle cell anemia patients, most of whom are [B]lack with sole-support mothers’ (Thompson et al., 2001, p. 230).

While HSC’s SCD Clinic was ultimately salvaged from decentralization, the fight it entailed illustrates the vulnerability of equity-deserving communities as a dynamic of neoliberalism (K. C. Flynn & Taylor, 2009). The proposal to decentralize HSC’s SCD Clinic was not race neutral – it did not appear to emerge from rational processes of research, needs assessments, and community engagement. Rather, saving Ontario’s only pediatric SCD Clinic required the efforts of Black-led organizations, including SCAO and UARR (Thompson et al., 2001). Despite a rational evidence base illustrating the importance of centralized care for SCD (Jeffrey, 1997), healthcare for people with SCD was precarious and only continues to exist as a result of advocacy, particularly from Black communities (Atkin et al., 1998; Mota et al., 2022). Finally, it is important to consider that, while, within a decaying welfare state, healthcare, on a whole, was being hollowed out, the needs of white communities remained prioritized over those of Black communities through rhetoric that rendered systemic ABR invisible (Arat-Koç, 1999, 2012; Thompson et al., 2001; Wright, 2017). This reflects how the Canadian imagination strategically erases race to continuously secure its master narrative as a white nation (Thobani, 2007). As a dynamic, neoliberalism exacerbates the already shaky institutional support for Black communities.

Conclusion

Healthcare does not simply respond to health issues; rather, as suggested by Atkin et al. (1998), healthcare operates ‘within a context of policy and resource priorities, statutory responsibilities, professional ideologies and historical practices’ (p. 306). This commentary reveals that SCD in Canada has always been fraught by racial anxieties that have resulted in institutional neglect. The entanglement of race, illness status, and citizenship has socially constructed Sickle Cell as a ‘Black’ and ‘immigrant’ disease in Canada. This discursive context has materially produced disjointed, fragmented, reactive, and racist care as well as delays in life-saving public health measures in the post-WW2 era, reflecting welfare state immigrant exclusion (K. Flynn, 2014, 2016; Johnson, 2014; SCDAC, 2016; Thobani, 2007). These same discourses would later shape how, amidst neoliberal welfare state devolution, local administrators targeted Ontario’s only pediatric SCD Clinic for decentralization, compromising access to medically necessary care for vulnerable children and their families (Jeffrey, 1997; Thompson et al., 2001; Wright, 2017).

Stretching back 65 years, the social history of SCD in Ontario is located within Canada’s wider colonial master narrative as a white liberal democracy, where the state positions the healthcare needs of equity-deserving communities as ‘special interests’ as opposed to matters of Canadian public health issues, citizen entitlements, and political rights (Arat-Koç, 1999, 2012; Thobani, 2007). Echoing Black communities’ overarching challenges in accessing statutory services, healthcare for people with SCD in Ontario, as in other multi-ethnic welfare state contexts, has always been precarious, emerging only from and enduring with community activism (Atkin et al., & Taylor, 2009; Johnson, 2014; Massaquoi, 2023; Mota et al., 2022). Today, the ongoing devolution in responsibility of medical care from the state to the voluntary sector – particularly for Black, racialized, and newcomer communities – has led to a poor geographical allocation of resources with respect to need (Massaquoi, 2023; McGibbon & Etowa, 2009). As state funding and care become contingent upon discretionary advocacy, inequities impacting people with SCD come to be institutionalized (S. Dyson & Berghs, 2019).

An instrument of the state, the SCD Quality Standard is a product of a Canadian society, which, following the police murder of Mr. George Floyd and a racialized pandemic, is beginning to face its own violent relationship with Black communities, including healthcare complicity in ABR (Massaquoi, 2023). By discursively linking genes, race, illness status, and claims to the state, the SCD Quality Standard, reminiscent of the Nixon Administration’s National Sickle Cell Anemia Control Act, creates new subjects, conferring citizenship to Black peoples through a disease-specific health policy document. However, such policies are limited in the redress they seek to deliver. As Tapper (1999) observes on the implementation of the National Sickle Cell Anemia Control Act:

the Nixon Administration was clearly more inclined to address the government’s neglect of specific segments of the population through genetic screening – a relatively inexpensive strategy – than to work to transform the social and racial hierarchies that produced the neglect in the first place. (p. 113)

The Act functioned to control and surveil African Americans, giving rise to stigmatization as well as workplace and insurance discrimination for people with SCD and its trait (Tapper, 1999). Moreover, by offering a narrow form of citizenship through SCD, the Act dissipated growing political critique on the state’s neglect of Black health (Nelson, 2011).

This genealogy of SCD in Ontario similarly unravels how the state of care for impacted people in the province is produced by institutional failures. Without a grounding in the past, the SCD Quality Standard is also at risk of neutralizing broader political critique of ABR and colonialism within Canadian healthcare – including what shapes the troubling history and present reality of SCD in Ontario.

The well-intentioned Quality Standard brings urgently required visibility to SCD; however, there is also a pressing need for social investment and change to address the long-term impacts of poverty and racism as well as inequities in housing, employment, education, access to healthcare, and justice – the roots of disparity that produce institutional neglect (Rouse, 2009). This speaks to the bounded nature of justice in contemporary policy-making processes (M. Creary, 2021). Without the state’s commitment to structural change, health policy documents, such as the SCD Quality Standard, distribute only meager benefits through a narrow view of citizenship to a neglected community that is owed much more.

Acknowledgements

I thank Colleen Johnson for her review of this manuscript as well as her mentorship and support. I am grateful for the invaluable feedback of the two anonymous reviewers for enriching this manuscript. Finally, I am indebted to the contributions of people with SCD and their communities in Ontario.

Disclosure statement

The author is a member of the Advisory Committee for Ontario Health’s Quality Standard Sickle cell disease: Care for people of all ages.

Notes

1. The L1 controversy refers to disputes over the efficacy of L1 between Dr. Nancy Olivieri and the pharmaceutical company, Apotex. The dispute led to a litigious saga that raised critical questions on research integrity, patient safety, academic freedom, university-industry partnerships, and the relationship between medicine and industry (Thompson et al., 2001; Wright, 2017).