Healthy Debate: COVID-19 testing failing marginalized communities
Published on Healthy Debate | Written by Sophia Ikura, Kate Mulligan, and Safia Ahmed
For $400, you can now get a private, for-profit COVID-19 test in the comfort of your own home. If you happen to live near one of 60 pharmacies and are asymptomatic, you might be able to get a test there, too.
It’s clear that for most people, braving hours-long queues outside Ontario’s assessment centres, that dollar figure and those places are far out of reach. For some people – those most impacted by the pandemic – even the testing centres themselves are out of reach. Data shows that racialized, low-income communities in the Greater Toronto Area and around the world have faced higher rates of spread and worse outcomes throughout the pandemic due to underlying factors caused by structural inequities. North Etobicoke’s case rates to date are 1,332 per 100,000 compared with 56 per 100,000 in The Beaches.
Fear, stigma, lack of sick days and time off, precarious employment, poverty, racism and language barriers can make testing inaccessible for marginalized and vulnerable populations.
This reality must inform our strategies to mitigate and contain potential future waves of COVID-19. The “one-size-fits-all’ institutional approach reflects an old-fashioned mechanistic approach to a complex problem and has stranded communities with the highest rates of transmission. Adaptive, local responses are better suited to support and protect racialized and vulnerable communities.
Partnering with community organizations from the North Etobicoke Cluster Table, a cohort of community agencies brought together by the City of Toronto and the United Way of Greater Toronto, we spoke with more than 130 residents and frontline staff from the area. What we heard confirmed the story told by global and local data – the risk of exposure is high for these residents and the burden of the disease is exponentially higher.
However, these conversations also revealed an often-overlooked story: one of grit, deep bonds and the strength and capacity that exists in communities. Residents and organizational leadership have been bootstrapping a response to the pandemic for seven months to fill in the gaps left by health and social safety nets.
“We don’t get enough resources from outside the community,” one service provider shared, “so we have learned how to support each other.” Informal connections, adaptive strategies and a growing network of support reconfigured themselves in North Etobicoke’s time of need.
With similar dedication, these partners have co-designed a strategy for responding to COVID-19’s second wave. These four guiding principles emerged for a stronger, more successful and integrated response to subsequent waves:
Outreach and ongoing surveillance are best carried out by those who have been working and leading in these communities
Create a smart system that is managed by those with the deepest knowledge, who are “closest to the ground” and can adapt and refine approaches as needed. As one frontline worker shared, “Everything that matters spreads by word of mouth in our community. If you want information out, you need to go to the people who are tapped in, the people that everyone trusts.” Community organizations and leaders are the experts in what’s going on in their neighbourhoods. They have their ears to the ground and can act as an early warning system, local connection and community mobilizer.
Over-communicating and messaging can help dissipate fear and stigma
As the pandemic evolves, fear and stigma are the greatest threats to early identification of outbreaks and the chance to contain them. Understanding how misinformation is circulating and how it should be tackled is best managed by community organizations and partners who can monitor and myth-bust as new information spreads. Myths and misinformation can seriously derail containment efforts and continue to arise to fill the void left in the absence of clear, tailored and trusted messaging and effective support. Over-communicating and giving frontline teams the tools they need is a key strategy for outreach.
High touch, targeted and tailored: a response is very different from mass testing
Community organizations interact directly with the people who have tested positive or need adapted, innovative forms of support. Neighbourhoods are teeming with effort and activity and offer fit-for-purpose expertise in responding and adapting to this complex, evolving situation. Community agencies have been offering support for “the whole household,” tackling everything from income stability to symptom management and food delivery. Getting the word out about meaningful support builds trust.
The approaches may fall outside the big system directives to test and isolate but they also play a central role in a successful recovery. Failing to support these efforts puts the system response at risk of losing our greatest opportunity for access and impact.
Formalize, recognize and fund the experts and capacity that is already in place
Working with trusted leaders in the community, it’s possible to start identifying where people are getting their information, balancing access to testing with discretion, knowing when and how increased testing capacity can be introduced and demonstrating to residents that a positive test result will come with support.
These are nuanced tasks that rely on deep knowledge of how the community functions. As subsequent waves unfold, particularly in high transmission neighbourhoods, a degree of nimbleness, flexibility and community trust will be required that our large institutions don’t have. Public health and healthcare systems were tremendously effective in flattening the curve universally but not in these communities. It is critical that we recognize the ability of local leadership to lead. This recognition must come with transfer of power to carry out an appropriate emergency response and with the resources that are required to support these functions.
This strategy, designed by the community, is robust, targeted, timely and efficient. A community driven response recognizes that activating communities brings a whole host of critical assets and expertise to the table for a problem that has gone dangerously unresolved.
We must leverage the abundance of knowledge and wisdom communities hold about what works. Supporting these agencies to make the decisions they are best positioned to, with clear lines of accountability, escalation practices, roles and regular communication can lead to a far more responsive approach to managing the second wave.
