Practical frameworks are needed to begin the research necessary to make real progress in treating asthma in Black and Latino children. Image © ATS.

A new study in the USA has highlighted how historic racial practices are still having an impact on the provision of healthcare for black and Latino children suffering from asthma.

Racism does not need to be overt for it to still have an impact on people of colour today. In the USA, historic norms of segregation and location are still having an impact on children growing up because their communities’ roots are entrenched in the time before the Civil Rights movement. In a nation where healthcare typically comes through insurance, and where deprivation remains on a vast scale in one of the world’s richest countries, new research into the healthcare provision for asthma has highlighted the continued inequalities for black and Latino children.

ScienceVega spoke to the University of Michigan’s Assistant Professor Ariangela J Kozik who worked on the research, which was the result of several gatherings of a group of experts and researchers across pulmonary medicine, paediatrics, and health justice disciplines which evaluated the latest findings to summarise them and define updated research priorities for the topic area, and which was published by the American Thoracic Society, to get an idea of the situation facing many children in America today.

ScienceVega: Just how much of an issue is racism within the actual provision of healthcare in the USA?

AK: It’s less about how individual racism currently impacts the provision of healthcare, and more the fact that healthcare is one of the main systems in society and racism was a key method of stratification of that society. In the US, all of the other systems that society uses to function have been affected by this stratification – racism – in some way, whether that is healthcare, the economy, the law, education, housing, or wealth.

Our report is talking more about how we won’t be able to understand why certain groups of people have this disproportionate amount of asthma without understanding how their lives have been impacted by racism over time. Asthma is one of these diseases where we suspect it’s not just genetics behind the disease; the environment has a huge role to play in how it has developed, and racism has made it such that not everyone has the equal amount of agency over their environment.

ScienceVega: Is there a correlation between race and the likelihood of asthma?

AK: Not from a genetic standpoint. Race, as we perceive it and use it, is a socially defined category and not a biological one, and there is not a racial group that maps cleanly onto some particular collection of genetic markers that allows us to say that by looking at someone’s genes, we can tell what race they are. There’s not a parallel there.

However, that’s historically how it’s been used. But that’s one of the underlying problems we address in the report and we can hopefully move forward past the system where we’re used to thinking about race as this fixed, biological, hard-coded factor that can structure your health and your outcomes. It’s not that; it’s how the society used race to organise populations of people and because it was organised in a certain way, different people have different lived experiences of different aspects of society that that could impact their health.

This is about trying to unravel the way that we’re used to thinking about this so that we can design studies to actually get at the root causes of these diseases.

ScienceVega: In terms of inequalities in healthcare, to what extent can they be put down to issues such as wealth, housing or the neighbourhood people live in?

AK: When it comes to asthma specifically, this is a disease where we’re thinking a lot about exposures that trigger symptoms. We know that there are certain things that can make you more likely to develop asthma, that seem to be related. For example your exposure to pollution, rodents, and pests, and whether or not you have access to clean water. When you have neighbourhoods that are concentrated near areas of industry, and there are lots of cities here in the US with neighbourhoods where historically, non-white people were constrained to living in because they were not allowed to live in other places where they’re doing heavy industry, you get heavy pollutants, heavy toxic exposure all the time in the air.

There are communities that have been living there for generations and they are exposed to much higher levels of these things than communities elsewhere that are further away.

That is a really good example of how that kind of exposure makes you more likely to end up with a respiratory condition because you are living in this area where you have these exposures that are so different from the exposures of different communities somewhere else can have.

This is a very oversimplified response, but in the US, funding for a neighbourhood’s schools and other community services are often closely linked to the property values and tax revenue of the local area. There is a direct connection between wealth and community resources. We have areas of lower wealth, higher poverty, more toxic exposures, less resources for healthcare, less access to health insurance, lower quality education and so on. All of these factors tend to track together and perpetuate cycles of scarcity. If you don’t have access to get the healthcare that you need, then you’re going to have worsening health outcomes.

It is a concept that you have to look at from multiple angles because it’s about looking at someone’s structural surroundings and asking how is that constraining their health? Where do they live? What are they exposed to? Can they go to the doctor and get what they need when they need it? Do they have the resources to do these treatments? Can they actually remove themselves from whatever exposure it is that triggers their asthma attacks? Do they own their home and can mitigate environmental issues like mould? Or do they rent from unresponsive landlords?

In some cases they can’t; they don’t have the resources to be able to move. That is just their environment that is surrounding them and that does impact their health. And the key is that, for some people, the lack of resources and agency are vestiges of systematic disenfranchisement that was forced on different groups of Americans based on their racial identity.

There are communities that have higher concentrations of communities of colour that have been living in these places where you have mills and smelter factories and places where they’re doing heavy industry, you get heavy pollutants, heavy toxic exposure all the time in the air. Credit: Image © Ariangela J Kozik.

ScienceVega: When you say that healthcare is less available to people, is it because they haven’t got the money in the first instance or is there actually a lack of healthcare provision in those areas?

AK: It’s both. There are some areas that are ‘healthcare deserts’ where there’s not a health facility within a reasonable distance of a certain community. A recent study estimated that 80% of counties in the US lack adequate healthcare infrastructure. People have to go further out to get what they need (if they have access to reliable transportation), or it could be the healthcare they have access to is urgent care or a hospital, but not a long-term primary care. In that case they don’t have a physician that they’re seeing regularly that knows them, knows the conditions they are dealing with and what they need.

There are people who don’t have access to that just because of the geography of where the hospitals are built and where there are lots of healthcare providers and resources. This happens in the US and there are communities of colour that have to deal with that, but there are also white communities that live in very rural, very isolated areas like in the mountains such as Appalachia, where they are lacking the amount of healthcare resources that they need. Aside from the availability of the actual facility, whether there is healthcare available, there is this other aspect of it which is, can you afford the healthcare that is near you?

Here, when you don’t have insurance, typically you can still be treated if you go to the emergency room or at the hospital in an emergency situation. If you show up there, they will stabilise you and send you on your way, but then you will get a bill later. But a lot of the time, if you go to the emergency room, they will treat you and they might say, “okay, you’re not dying, you’re stable now, but you need to go to someone later to follow up”. But if you don’t have insurance, you’re not going to follow that up.

What happens in that instance is people rely on the emergency room as their primary source of care for when it’s something that is urgent, but it’s not actually dealing with the underlying condition that needs long-term care. When you don’t have the resources to access regular healthcare and you’re going from crisis to crisis that is not good for your health outcome.

For asthma specifically which we talk about in the report, sometimes people don’t seek care until they’re having an asthma attack, they go to the emergency room, get treated and told they need follow up treatment or drugs to control their symptoms, but there’s a cost associated with that. If they cannot afford that cost, then they’re not actually going to be able to get the care they need so they end up back in the emergency room the next time something triggers an asthma attack. The cycle then repeats itself. And one day, the attack may be too severe to recover from.

ScienceVega: Although this report is about asthma in black and Latino children specifically, do we see similar situations with regards to other childhood diseases?

AK: Probably. What’s unique about asthma is the environmental aspect because of how much your environment and your exposures seem to be related to the development and management of this disease. That is one of the reasons why this is one of the conditions where we are thinking about it and writing about it now. But I do think that it’s possible that other diseases will be similarly talked about as we think about how does a history of these kinds of injustice affect people’s health.

Infectious disease is an area that could be impacted by this as well. We even saw it during the Covid pandemic where communities of colour here were experiencing Covid at higher rates. They were getting sicker, they were dying at higher rates and they were in the hospital for longer.

Whenever there is a stress on the system such as a pandemic will provide, these kinds of cracks in the foundation of the system start to be more visible and then you see how differently people are impacted.

Detroit – early 20th Century. There are lots of cities in the US that historically non-white people had to live in and which had neighbourhoods concentrated near areas of industry. Image ©.

ScienceVega: What research would you like to do following on from this study?

AK: One of the things we say several times is that what seems to be lacking in research about diseases like asthma, where we have this disproportionate burden, is we lack the voices of the people that are directly impacted by it. If you are as I am, a black woman who has a child and you know what it’s like to have that lived experience, you know what your relationship to the healthcare system is. So by doing a study that centres the voices of the people that are most affected by it we can begin to understand what some of these other variables are that are at play that we may not be thinking of and how we might be able to intervene.

What is it like to have a child with asthma in your area? Maybe your child’s going to school but the school is right next to a factory of some sort and there is something that the factory emits into the air that’s irritating them all the time. You’re trying your best to manage symptoms but when they’re at school they’re having this exposure and then this symptom. How is that navigated? How is that managed? What are the things we could be doing to ameliorate that exposure?

That kind of study would be unique because it would require people from different areas of expertise to be working together on the same project. It would need to have engagement from the community, potentially the school, and the local community health support. There are projects we could do in new ways that are more multidisciplinary and that I think would be really cool because we could then tell a fuller picture of what is actually going on and identify areas where we could intervene to hopefully improve the situation. It would be about not looking at it from just a molecular viewpoint only thinking about the biology, but also incorporate some of these other social and environmental aspects into this study. I think that is what needs to be done.

Even though we’re talking about racism and specifically the way it has affected people in the United States, I do think that there are larger concepts of justice at play that affect everyone everywhere such as people’s exposure to toxins, to pollutants, and other environmental concerns. That is certainly an issue all over the world as we are dealing with all of these extreme weather patterns and wildfires that are happening, putting different types of exposures at the forefront of people’s lives. How can our systems work together? How does our environment impact our health and what are we doing to help mitigate that? It is a topic that’s important for everybody, regardless of background.

Moving forward we really need to be thinking about how are we trying to protect our health, and how does that relate to our environment? How is our healthcare working for us, or is it not working for us? How do these systemic and structural forces shape our experiences? It is about trying to put these different pieces of the puzzle together because I do think that ultimately, it affects everyone. As environmental pressures continue to change we are going to have to respond to that in some way.

Ariangela J Kozik, PhD

Assistant Professor

Department of Molecular, Cellular, and Developmental Biology

Department of Internal Medicine – Pulmonary & Critical Care Medicine

Center for Computational Medicine and Bioinformatics

UM Precision Health

University of Michigan

The original study can be found in the Annals of the American Thoracic Society.