Post-COVID Condition, Data Collection, and Health System Capacity: Preparing for Canada’s future

Over the past two years, evidence has emerged to suggest that the impacts of coronavirus disease 2019 (COVID-19) extend beyond the acute phase of illness. This chronic illness, known as long COVID or post-COVID-19 condition (PCC), affects more than 1.4 million Canadians¹ who are experiencing prolonged multi-system symptoms three months or longer after an initial COVID-19 infection.^2—5 In a recent review of 102 primary studies, approximately 50% of the included studies reported PCC-related social impairment, worker absenteeism, and loss of employment.⁶ PCC has also been associated with a reduced quality of life and reduced functional status.⁷ As a Registered Nurse who has worked through many COVID-19 outbreaks in Ontario, I find it unsurprising that PCC has been characterized as a mass-disabling event.

PCC was initially relegated to the dustbins of the internet and dismissed as pseudoscience during the early days of the COVID-19 pandemic. Some physicians (such as Canadian psychiatry resident Dr. Jeremy Devine, for example) conceptualized PCC as psychogenic—a sensationalized invention of feminist activist groups intended to perpetuate the patient-led denial of mental illness.⁸ This psychopathologizing was particularly damaging to Black, Indigenous, and People of Colour (BIPOC), who were reporting symptoms consistent with PCC but having their experiences erased. The current of skepticism at the time meant that researchers had to obtain data about PCC from obscure sources such as Reddit (a popular social media forum), at the expense of methodological rigour.⁹ These early efforts laid the groundwork for today’s prevailing medical perspectives, which reaffirm that there are indeed pathophysiological mechanisms underpinning the illness.^10—13 

This growing body of evidence has underlined the importance of making equity a core pillar of PCC research and building health system capacity in Canada. Whether we choose to acknowledge it or not, racism has always been ingrained within the scientific sphere; the COVID-19 pandemic has merely emphasized its impacts. For instance, pulse oximetry readings have been found to be less accurate in Black, Asian, and Hispanic individuals, leading to delayed treatment for COVID-19.¹⁴ Throughout 2022, Paxlovid—a COVID-19 treatment indicated for individuals at risk for severe health outcomes—was prescribed 35.8% less often for Black individuals when compared to White individuals.¹⁵ The disproportionate impacts among racialized populations are not due to biological differences. Instead, they reflect health inequities influenced by socioeconomic factors such as education and income, which determine an individual’s societal status and what healthcare options they can access. While preliminary evidence suggests that Black individuals also experience higher rates of PCC,¹⁶ uncertainty remains about the magnitude of this impact within the Canadian context because BIPOC have not been sufficiently represented in PCC research. Moreover, the lack of high-quality data continues to impede efforts to accurately estimate the prevalence of PCC, which is required for health system planning and resource allocation. This is important because there has been increased healthcare utilization by individuals who have previously tested positive for COVID-19.¹⁷ 

To protect racialized populations affected by PCC, we need federal leadership and provincial collaboration to address the structural issues contributing to physician and nurse shortages. In Ontario, this will mean striking down Bill 124—the wage-suppression legislation that is contributing to the exodus of nurses from the profession—once and for all. The collection of race-disaggregated PCC data will also be a critical element for identifying at-risk populations and developing targeted public health interventions. 

This situation parallels the early pandemic calls for the collection of race-based data pertaining to COVID-19 infection rates. Time after time, we acknowledge deficiencies in our public health response, yet we do not take the required action to change our trajectory. We sit in our seats quietly, watching the credits roll—or we sit in our seats loudly, using diversionary tactics in the name of ideological preservation to obstruct the scientific pursuit for truth. Racialized populations will continue to bear the burden of PCC unless Canadian policymakers and stakeholders begin investing in a future worth fighting for.

REFERENCES

1. Government of Canada. Post-COVID-19 condition in Canada: What we know, what we don’t know, and a framework for action. Published December 14, 2022.
2. Chippa V, Aleem A, Anjum F. Post acute coronavirus (COVID-19) syndrome. In: StatPearls. StatPearls Publishing; 2022.
3. Hastie CE, Lowe DJ, McAuley A, et al. Outcomes among confirmed cases and a matched comparison group in the long-COVID in Scotland study. Nat Commun. 2022;13(1):5663. doi:10.1038/s41467-022-33415-5
4. Maaden T van der, Mutubiki EN, Brujin S, et al. Prevalence and severity of symptoms 3 months after infection with SARS-CoV-2 compared to test-negative and population controls in the Netherlands. J Infect Dis. 2022;jiac474. https://doi.org/10.1093/infdis/jiac474
5. Xu E, Xie Y, Al-Aly Z. Long-term neurologic outcomes of COVID-19. Nat Med. 2022;28(11):2406-2415. doi:10.1038/s41591-022-02001-z
6. Nittas V, Gao M, West EA, et al. Long COVID through a public health lens: An umbrella review. Public Health Rev. 2022;43:1604501. doi:10.3389/phrs.2022.1604501
7. Quinn KL, Katz GM, Bobos P, et al. Understanding the post COVID-19 condition (long COVID) in adults and the expected burden for Ontario. Ontario COVID-19 Science Advisory Table. Published September 7, 2022. https://doi.org/10.47326/ocsat.2022.03.65.1.0
8. Devine J. The dubious origins of long covid. Wall Street Journal. Published March 22, 2021.
9. Sarker A, Ge Y. Mining long-COVID symptoms from Reddit: Characterizing post-COVID syndrome from patient reports. JAMIA Open. 2021;4(3):ooab075. doi:10.1093/jamiaopen/ooab075
10. Patel MA, Knauer MJ, Nicholson M, et al. Elevated vascular transformation blood biomarkers in long-COVID indicate angiogenesis as a key pathophysiological mechanism. Molecular Medicine. 2022;28(1):122. doi:10.1186/s10020-022-00548-8
11. Su Y, Yuan D, Chen DG, et al. Multiple early factors anticipate post-acute COVID-19 sequelae. Cell. 2022;185(5):881-895.e20. doi:10.1016/j.cell.2022.01.014
12. Klein J, Wood J, Jaycox J, et al. Distinguishing features of long COVID identified through immune profiling. Published August 10, 2022. doi:10.1101/2022.08.09.22278592
13. Castanares-Zapatero D, Chalon P, Kohn L, et al. Pathophysiology and mechanism of long COVID: A comprehensive review. Ann Med. 2022;54(1):1473-1487. doi:10.1080/07853890.2022.2076901
14. Fawzy A, Wu TD, Wang K, et al. Racial and ethnic discrepancy in pulse oximetry and delayed identification of treatment eligibility among patients with COVID-19. JAMA Intern Med. 2022;182(7):730-738. doi:10.1001/jamainternmed.2022.1906
15. Boehmer TK. Racial and ethnic disparities in outpatient treatment of COVID-19: United States, January–July 2022. MMWR Morb Mortal Wkly Rep. 2022;71. doi:10.15585/mmwr.mm7143a2
16. Yomogida K. Post-acute sequelae of SARS-CoV-2 infection among adults aged ≥18 years: Long Beach, California, April 1–December 10, 2020. MMWR Morb Mortal Wkly Rep. 2021;70. doi:10.15585/mmwr.mm7037a2
17. McNaughton CD, Austin PC, Sivaswamy A, et al. Post-acute health care burden after SARS-CoV-2 infection: A retrospective cohort study. CMAJ. 2022;194(40):E1368-E1376. doi:10.1503/cmaj.220728