Long COVID is disproportionately affecting Latinos. They're struggling to get diagnosed

By Lauren Gilger
Published: Tuesday, January 30, 2024 - 11:26am
Updated: Tuesday, January 30, 2024 - 3:10pm

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Most of the world has moved on from the pandemic — with vaccines and treatment widespread. Most of us aren’t wearing masks anymore. Most of us aren’t social distancing or quarantining or doing all of the things that were such hallmarks of life with COVID-19. 

But there is a big group of people for whom the COVID-19 is anything but behind them: people suffering from long COVID. For them, life hasn’t been the same since they contracted COVID-19, and Lygia Navarro reports they are disproportionately Latino. 

Navarro is an independent journalist and contributor for Palabra, the nonprofit news outlet for the National Association of Hispanic Journalists. The Show spoke with her more about her reporting — and the people she profiled in the rural, farming community of Yakima Valley, in Washington state. 

Lygia Navarro
Lygia Navarro

Full interview

LYGIA NAVARRO: So one of the long haulers who we spoke with was, she wanted to use the name Maria, which is not her real first name, because a lot of people feel very nervous about being public about being a long hauler. So she was infected with COVID and then she never recovered. So she, you know, started to develop really intense, full body pain, extreme exhaustion, discoloration of her hands, they turned purple. This is common with other long haulers, that happens to their hands and their feet. And so, you know, this is not just a small health nuisance.

It's really an all encompassing life-altering event, which also impacts her life in the sense that what she can do every day. So, you know, her kids had to adapt to her not being able to do everything for them that she used to do. She struggles with work some, and her family also early on really doubted what was going on with her. They thought that it was psychological, it was all in her head. And this is a common thing that we heard from other Latino long haulers, is that their communities often don't understand that it's a physical illness.

I want to ask you very straightforwardly like to give us a definition of long COVID because you've done a lot of reporting on it for this story. And I think a lot of people still see it as like this mysterious thing, but there is a real definition, right?

NAVARRO: There is. And I think it's really important to talk about that because people don't know enough about long COVID, including what it is. So I think a lot of people have it and don't realize that. So the World Health Organization's definition of long COVID is new or worsening health issues that last at least three months after a COVID infection. So that can be, it can be completely new symptoms, so it can be that you develop migraines and you've never had them before, after having had COVID. It can be that you already had diabetes but that your diabetes dramatically worsened. So those are a couple of examples, but there are over 200 symptoms that long haulers have reported while having with long COVID.

So a wide variety of symptoms. So let's talk a little bit about the challenges in that. For the people that you profiled in particular, there's a real challenge, it seems like in, in just even getting a diagnosis for folks, right?

NAVARRO: Huge challenge, huge challenge. This is something that's common among long haulers en masse. They have to, you know, suffer, go through a lot of testing that is all negative and then often they figure it out themselves. And so this is what happened with both of the long haulers who I profiled or who I followed in the story. Both of them understood that what was going on in their bodies had happened after having had COVID.

So both of them had to essentially propose the diagnosis to their own doctors or insist over and over and over, over again that the health issues that they were dealing with, which they've never had before COVID, were because of COVID. And for Maria, the woman who I spoke about a minute ago, you know, it is really detrimental that her doctors were not listening to her, her family doctor, you know, her regular practitioner tried to diagnose her with multiple sclerosis, which she doesn't have. Another specialist told her that if she didn't get better within a month that they were going to operate on her hip, she has never had hip problems. So, you know, it goes from the range of doctors being uneducated, which is kind of the best case scenario, to misdiagnosing and doing actual harm to people.

You know, something that we hear a lot about in long COVID is people who are told, oh, you're dealing with fatigue, you need to get more exercise, you're just deconditioned, or you know, you're out of breath, you have anxiety. And so people are told then to do exercise to push themselves physically, but that can actually make long haulers sicker, not just that it can, but it does.

So you're reporting something here as well that is sort of as of yet unreported and important, which is that long COVID is having a disproportionate impact on the Latino community in in particular. Tell us a little bit about that and the numbers that you uncovered.

NAVARRO: Yeah. So let me first say that the numbers are, they're hard to depend on, the numbers are hard to trust. They're hard to use as a real guide for what's happening with long COVID among Latinos because all of the statistics that exist thus far are not accurate. The federal data that's available is using a small sliver of the population. It's an online survey that's done semimonthly. And so the data that we get from that is that yes, Latinos are reporting having long COVID at a higher rate, 36% of Latinos have had or do have long COVID.

But part of that is that a lot of people do not realize that they have long COVID. So when you're talking about Latinos in particular, one of the other people who I spoke with for this story, who wanted to use the name Victoria, she figured out herself that she had long COVID, but she's never been able to get a doctor to diagnose it. But in addition to that, she sees so many people in her community having long COVID.

So first you have lack of diagnosis, right? Especially among Latinos because there is either, you know, a limited amount of time that doctors have with their patients. You know, we talk about like the average 15 minute visit and doctors are rushed and they don't, may not know their patients. Well, doctors don't have education to know what long COVID looks like and then sometimes what happens is stereotyping. So racism in medicine, you know, with doctors assuming, OK, here is a diabetic patient whose diabetes is really worsened. That's just because she's Latina, or here is another Latino patient who has developed high blood pressure. Well, that's just because cardiovascular disease is, is high among Latinos.

When I first started to report this story, some researchers and clinicians were kind of wondering aloud, well, what's the, what's the reason for this? You know, nobody thought that there was a genetic or, you know, a genetic ethnic reason. But what became clear, really pretty early on in the reporting was that this has a lot to do with who was protecting the country early in the pandemic. And that was people of color.

Let me ask you lastly, I know you are experiencing long COVID yourself. How has your own experience of this kind of played into your reporting on it?

NAVARRO: Well, in the first part, I think that it's motivated me to report on long COVID. You know, I still see that there is not enough reporting on long COVID period and it ties in with the drive to move back to normal, you know, to let's leave the pandemic behind us. And so if you don't report, you know, if you don't see media reporting on long COVID, you might think that it doesn't exist.

So that's the first part of it, you know, is that I have experienced for three years, this really catastrophic event in my health and in my life. And I wanted to tell other people's stories about that, especially these stories of you know, people who are already, you know, underserved and marginalized, who are really fighting to have to get help with it.