September marks six months since the World Health Organization declared a global pandemic of COVID-19. We’re using this milestone to take stock of the policy response so far and consider next steps as Canada continues to move from reaction to rebuilding. As part of this, First Policy Response is speaking to several policy experts to gather their thoughts on the key policy developments of these past six months, and what they think our next priorities should be.

This interview with Sané Dube, policy and government relations lead, with a focus on Black health, at the Alliance for Healthier Communities, is part of a series of interview transcripts that will run this week and next. You can read the full series here. This transcript has been edited for clarity.

 

First Policy Response: So to start off with, you and the Alliance for Healthier Communities had advocated really strongly for race-based data collection on COVID-19. Why was that?

Sané Dube: Early in the pandemic we started to see the disparities that were being created. It became evident pretty early in the game that COVID wasn’t affecting people in the same way. There were some communities and some groups that were harder hit and disproportionately impacted. We were already seeing that in Ontario and in Canada. At about the same time, we started to see data coming out of the United States and the United Kingdom, and a lot of their data was showing a real, deep impact on Black communities. So that included Black folks who were patients with COVID, but then it also was Black health-care workers, specifically in the case of the U.K., who were the ones who were contracting the virus. And what the data was showing was that when these communities contracted the virus, their outcomes also tended to be worse, so we were seeing that they were higher numbers and then when people did get the virus, they were more likely to have fatal or negative impacts. So many people were really concerned that Ontario was not looking at COVID with this lens. Really, that’s where the calls for data collection became prominent.

Data collection calls are not new. People have been calling for this data to be collected for a long time. The Alliance is one of the organizations that’s also been on record for a very long time calling for this data to be collected. What made it even more urgent for this data to be collected was what we were already seeing in COVID, and also just knowing that without that data, the province couldn’t respond in the way that they needed to. And the same issues remain in Canada. . . . Ontario and Manitoba are the only two provinces that have mandated data connection, at least during COVID. A few other provinces are on their way to doing that. But the fact that we don’t have data that tells us exactly what COVID looks like broken down by race, broken down by other socio-economic markers, is really troubling and it actually hinders our ability to respond to this pandemic.

 

FPR: So what has the data shown us so far about how this is affecting different communities differently?

I would point to the example of Toronto. The public health or the regional authorities here were really great with collecting data earlier and also starting to release that data. They had a study that showed that 83 per cent of the people who had contracted COVID were Black or racialized people, and also showed that a lot of those people came from low-income families or households, and they also tended to live in parts of the city where the average income was lower. And more recently, they’ve had another study that just came out, which was looking at who lockdown worked for. They were saying that if you look at predominantly white, affluent neighborhoods, people there were able to do the lockdown and be able to follow public health guidelines. Whereas if you’re looking at other communities where people continued to work, they were often the low-income, essential workers like grocery shop attendants, or they were janitorial staff or working in public transportation, cab drivers and such. Many of those people didn’t have the option, necessarily, to either work from home or not go to work altogether.

And even if people got sick in their household, just because of the housing crisis and the unaffordability of the city, many people also did not have the option of, “I will go to a hotel and isolate,” or “There’s a room in my house, or there’s a part of my house where I would have my own bathroom.” People couldn’t do those things. So yeah, the data is really striking.

A few regions of Ontario have started to release their data and it’s showing how COVID has impacted other communities, and the same stories repeat themselves over and over again in every region, everywhere where data has been released. And the story is always that it is the people who already are so marginalized who feel this pandemic the most, and whose chances of recovering will be most impacted as well, just because not enough has been invested in making sure that people are getting the help they need and that they can recover well.

 

FPR: How does that fit in with the idea of social determinants of health?

Social determinants of health is a way of understanding health care and health policies. So it’s a framework, and it really says that we have to understand that a person’s health is impacted not just by the ability of a person to go to a doctor or walk into a nurse’s office – health is really impacted by social and economic factors. So things like your housing, your ability to have good housing, that’s actually a huge determinant. It impacts the health outcomes you’re able to achieve. We know that racial bias in health care means that Indigenous and Black people, in particular, will face more barriers in getting equitable and good health care, so over the long run, that also impacts people’s health. So there’s a range of social determinants of health – housing, race, income, neighborhood, a range of factors. And what we have said is that in dealing with something which is as severe as COVID, or has impacted us as much as it has both in Ontario and on a global scale, our responses should really be framed in a social determinants of health framework. We can’t actually address this pandemic without addressing all of the other factors that make some people more susceptible to illness, or the factors that make it so that when some people get this virus, they will have worse outcomes. So I think this goes back to what I was saying before: it’s one thing to contract the virus and be unable to stop working, be unable to isolate or be unable to have the resources that you need. That’s a very different story from someone who contracts the virus, has all the support that they need, doesn’t have to worry about facing racism when they go to a health care centre, is guaranteed that they will be treated well. So, our COVID response really needs to centre that social determinants of health approach, because that is what addresses underlying systemic and structural issues.

 

FPR: You’ve also been quite vocal about how racism is a public health crisis in Canada. Can you talk a little bit more about how that intersects with COVID?

So this has been an . . . interesting season. I use that term generously. What we have also seen over COVID is the amplification of movements that were already happening – specifically movements for Black lives and movements for Indigenous sovereignty and life. In late May or early June, there were several Black folks who were killed by police in the U.S.: George Floyd, Breonna Taylor. In Canada, we saw the deaths of people like Regis Korchinski-Paquet and Rodney Levi. And all of these movements spurred a push to really address the ways that people experience racism, systemic and structural inequality.

The experiences that people have with racism really impact the way that they are able to move through the world. I’ll give the example of Regis Korchinski-Paquet, who was a 29-year-old Afro-Indigenous woman who died in police presence, who had been called for a mental health call. We, as advocates, would argue that racism is what contributed to her death, because we see instances where, if police are called to assist a white person who is in mental health distress, they are less likely to end up dead. Whereas studies have shown that Black and Indigenous people have higher rates of fatal outcomes – people are more likely to end up dead. And this is from a system that should be helping them. A system that should be keeping people safe. It should be providing people the protection that they need. And we would argue that part of that is the racism that underlies policing, and that underlies many of the health-care systems and structures that we operate in. So what we have said is that we want recognition of racism as a public health crisis because by declaring it a public health crisis, then you are saying that this is a serious issue that must be addressed. It is something that is endemic. It is something that touches all sorts of systems and structures. Declaring it a public health crisis would recognize the harm that it does to our communities, and actually put things in place to start fixing the situation. Black health leaders, particularly after those deaths in June and May, many people started calling for the declaration of racism as a public health crisis. A few regions and cities in Ontario have done that. Toronto has, but we still don’t have a provincial recognition of racism as a public health crisis.

 

FPR: How does that intersect with COVID?

I think that COVID has really shown the ways that racism harms people who already more marginalized. I’ll give the example of Toronto’s northwest. We know that this is where some of the worst cases for COVID are right now. But we also know that the systemic and structural racism that is in our system means that even when we know that this is where COVID is really hurting people, not enough resources have been directed there.

And racism, it takes many forms. You even hear people talking about how, in the regions where they live, the testing and COVID response hasn’t been done with an appropriate cultural lens. So you will find that someone is being sent in to do testing who doesn’t even speak the language that people in that community speak, who doesn’t understand the cultural norms in a place. And it means that people are not able to access the care that they need. We would say that is actually just an iteration of racism, where you are not willing to work with communities in a way that recognizes and honours how they want to access health care.

So I think racism takes many different forms. And even something like refusing to collect data so that we know who is impacted and how they are impacted, some would say that can also be a form of systemic and structural racism because it makes invisible the ways that we are failing to provide appropriate care to some people.

“We need approaches that put health equity at the centre.”

I’ll give one more example. In Ontario, there’s a group called the Black Health Equity Working Group, which is a group of experts and health-care providers who, now that Ontario has said they will start collecting the data, are developing a governance and accountability framework for how that data is used, one that is developed by and for Black communities. And part of why Black communities are pushing so hard for this is because they know that racism also affects us in this particular instance. We call for data because we know that this is something that could improve our lives, but what racism does – it means that the data is collected, but then the way that it’s used further harms our communities. So that’s just another way that racism plays out.

So again, the example of northwest Toronto – the data has been collected, but then the way that the story is being told in the media, the way that we talk about what’s happening in the northwest of Toronto, is to once again stigmatize the people who are in those communities. So it makes it seem like high COVID rates are somehow because there’s something that’s inherently wrong, or something that’s pathological, with those communities. The way that we tell these stories is that there’s never a full accounting for the systemic underfunding of those communities, that lack of resources, the way those communities have been starved, and the high rates of COVID-19 are actually a result of that. So, racism takes many forms. It’s not always the glaring, the obvious thing. But it’s a conversation that we have to have as we’re talking about COVID.

 

FPR: The Alliance has written about how race-based data collection may actually further entrench harm and inequity. Could you speak a little bit more about how and why that might happen?

When we’re thinking about further entrenching harm, it goes back to how that data is used. A lot of Black communities right now are saying that the collection of the data is not actually justice; it’s not the end goal. The end goal should be improving Black people’s lives. Where we’re coming from with the Alliance is that collecting this data, if it’s not used appropriately, if it’s not understood, if it doesn’t become a tool for systemic change, then it is again just replicating harm for people.

 

FPR: From a policy perspective, what do you think needs to be done from here to try and address some of those issues?

I would say possibly the most important thing is that our health system response very much needs to be based on social determinants of health frameworks. We also need approaches that put health equity at the centre, where health equity is not an afterthought, but it is something that is integrated throughout the policy and health-system development process, right from the beginning right through to the end of any system. We at the Alliance are fully supportive of the collection of data, but we also want the province to engage the right people in these conversations. Data collection does not mean the same thing for all communities. For example, Indigenous communities have very specific concerns. Black communities have specific concerns. The province needs to be speaking to the right people as it develops its processes for the collection of this data. Those communities need to play a key role in determining how the data is used and what the outcomes are, in the long run, from that.

And then I think that we also just need to have approaches that are proactive. We are, for sure, going into a second wave of COVID, if the numbers are any indication. . . . It would appear that we are going back to a place where we will see more cases, and who knows what that will look like once schools open and once people are back to their lives. So, we want a health system that’s responsive. We want a health system that will understand the context, that will understand developments as they are occurring. And a health system that also will work with the most marginalized, those with the least resources, those with the least access. Because right now, in many ways, the health system is working for people who already have access to resources. It’s not working for some of the most marginalized.

 

FPR: Is there anything that any level of government has done so far that’s been helpful to more marginalized communities?

The thing with COVID is, it’s also been really illuminating. COVID has been a time when we’ve seen that systems can be responsive. Policies can be created that really will change people’s lives. Like the example of early in the pandemic, the province of Ontario suspended the OHIP wait period – they made it so that people could get treatment, they could get health care, even if they don’t have health cards. So that provided treatment to people without status, many of whom work in essential roles – they were able to get health care. And we know that’s made a difference in terms of making care accessible for some of the most marginalized. So that’s an example of where a system has worked really well.

Even something like pandemic pay for some essential workers. So when you look at workers who are working in supervised consumption sites or overdose prevention sites, a lot of those folks were able to access pandemic pay, which was good because they work very hard and there was a lot on them in those early days of the pandemic. So it was useful. Unfortunately, the pandemic pay is coming to an end for many essential workers, but that is something that makes a tangible difference in people’s lives. And definitely, we know that this is something people are talking about and saying that the province needs to be thinking about longer-term assistance for people, particularly as it looks like we will be in this pandemic for a while.

So there’s definitely things that have been done that have really, positively impacted people’s lives. And we want the province, and both federal and provincial bodies, we want them to continue to make those types of decisions that actually support people who are in need.

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