The disproportionate number of COVID-19 cases among Black and brown Americans has revealed an undeniable fact about our nation's healthcare system: Racism is a public health crisis.
Brought to you by Everyday Health, WFAE Public Radio in Charlotte, North Carolina, and ClearHealthCosts, an organization that brings transparency to medical costs, the discussion series Racism in Healthcare takes a look at how structural and institutional racism has shaped U.S. healthcare and dictates who receives what kind of care — and, most importantly, how we can start to fix the system.
In the first episode, Mary C. Curtis, an award-winning columnist for Roll Call and the host of its Equal Time podcast, speaks with Netia McCray, the founder of the STEM education nonprofit Mbadika. In June, McCray wrote an impassioned article for The Boston Globe about her experience as a Black woman with COVID-19 and her experience of systemic racism in America.
Here, Curtis and McCray discuss the experience of seeking treatment for COVID-19; what the pandemic has revealed about the United States’ healthcare system; and what structural changes need to be made in order to ensure equitable treatment of all Americans during this public health crisis and beyond.
The following are some highlights from an edited transcript of the interview.
Mary C. Curtis: Give us a personal narrative of your own story — realizing the effects of COVID-19, and how the medical system that you had counted on in such cases was not there for you, an African American millennial woman.
Netia McCray: Early April, I started feeling a little fatigued, having some memory loss, and I felt it had to be the anxiety around the pandemic. And so I started to take it easy from doing our virtual lesson plans and workshops, until other team members started exhibiting the same symptoms. After four to five days of having no symptoms, we quickly realized that [we should] probably err on the safe side [and] check it out.
We spent six hours navigating the healthcare system to get a test in a timely manner at a low cost. Unfortunately, I wasn't able to get tested until mid-April, but by that time I had already started experiencing severe chest pains and trouble breathing. There was even a moment that I had passed out going to the bathroom and my partner had to drag me back to the bed. So, at that point we already know, it's not anxiety, there's something else to this.
From April until early May, I would say my condition deteriorated steadily every 24 to 36 hours, to the point that in early May, I was having a conversation with my PCP — or attempting to reach my PCP, let me say. And I kept getting blocked by her receptionist. The receptionist kept saying [my PCP] doesn't have time for patients right now unless they’re in critical [condition], but if you're in critical you should go to your local ER. And when I stated that my ER wouldn’t admit me unless my PCP sends a referral, the receptionist stated at that time, “Well, you're talking to me for the past five minutes, so you're not doing that poorly.” And it was a click, followed by weeks of clicks, every time I got the strength to call back.
I turned 30 on May 17, and 2020 was supposed to be the year of all celebrations and transitions in my life. As my partner tried to make plans to celebrate my birthday, I had to tell him the honest truth, which took me several weeks to come to terms with […] and that was him working with me in order to create a will to prepare for the worst.
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Curtis: How did you go from writing your will to getting the relief you needed, and when did you realize that perhaps, maybe you're getting a different response because you're an African American young woman?
McCray: I think the turning point was on my birthday. When I woke up and I pulled up my New York Times app like I usually do, and I saw there was an article by Mara Gay, and I went, “Wait, she's talking about COVID and Black women!” [This was] something that blew my mind because I didn't hear anything about people having COVID symptoms for longer than two weeks. She went into detail about how she wasn't able to walk to the bathroom or go down a flight of stairs, and through physical therapy with someone who specialized in patients with Lyme disease and autoimmune diseases like lupus, [she was able to] to sit up on a couch and breathe for 10 to 15 minutes. And I think that was the moment the switch went off in my head, [and I thought] I need to start building my community and doing my research into this weird syndrome I never heard of called “long COVID.”
I spent the rest of the summer researching, looking through Twitter and the networks to try and figure it out, but in July, my condition deteriorated again. I was actually admitted to the emergency room at this time. And while I was at the emergency room, there was a patient there [who was] an African American woman. As soon as she walked in, the rattling in her lungs was the same rattling that was in my partner's lungs, and that was in my colleagues’ lungs, and I knew she was COVID-positive. She told the receptionist at that ER that her doctor had locked the door and told her she needed to go to the ER and that he wouldn't treat her. And it seemed as if all the pieces started to fall into place, what I went through into the spring.
I reached out to a couple of my colleagues who were experiencing similar symptoms, and I said, “Does it seem like our PCPs knew that we were COVID-positive, but because they couldn't do anything, or there was nothing for them to gain, that they just left us home to die?” And one of my friends said, “I'm thankful you said that, because that's exactly what it feels like.”
I have colleagues from my job who work at Google, who were able to get into experimental trials for remdesivir or other antibody cocktails, before we the general public even knew about this, because Boston is the biomedical capital of the world. And yet, I have the same PCP [as they do], and this PCP won't even pick up the phone for me.
Curtis: We all know that saying “When America gets a cold, Black people get pneumonia.” So, do you feel that perhaps your experience, as an African American, you were the canary in the coal mine for America? And this is a comment on the United States’ healthcare system, which really is unprepared for the long-term effects of COVID. I mean yes, we think we all have a vaccine, but it's not here yet, so these folks will have symptoms and effects for years to come. What does your case say about the U.S. healthcare system?
McCray: I would say, I grew up [being told] that everyone's in charge of their own destiny. If you work hard, and you make the right decisions, and do what you're supposed to do to take care of not only yourself but your family and your loved ones in your community, then you will be rewarded in this country, whether it's the American dream of owning a home or having a career that is able to sustain you and provide for your family. That is what I've always been told. […]
The part where I feel that healthcare system failed this spring and to the present is that it exposed ugly scars that have always been there. I've known these scars have existed because I've dealt with healthcare for not only my parents, but my grandparents, family members and even loved ones. I know the battles you have to have on surprise billing, or having a physician refuse you care — something that most Americans, I feel, who have not been a caregiver, do not understand as a possibility.
I will relay a conversation I had with my insurance company — the unsung hero of my story. She hung up the phone, after I gave her my phone number, and the actual adviser for my insurance company called me privately. She informed me that I was not the only African American woman that this insurance company has had to battle for their primary care physician to pick up the phone and do a telehealth medicine call.
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When we say that Black people get pneumonia when America gets a cold, it is because my white colleagues […] across the board did not understand when I literally would get on the phone with them, and I sounded, to quote one, like I'm dying, how I could not get to an emergency room when I live three blocks from the number one emergency room in the United States? They could not understand why I couldn’t walk in there and say, “You must admit me.” And as I explained to them, months into my illness, the Black household has [nearly] 10 times less wealth than a typical white household. On top of that, in most Black households, the Black woman is the breadwinner. So when you're talking about the economic fallout from individuals battling COVID, as well as the mental, and spiritual — I like to just say the foundation of the Black community is on the Black woman’s shoulders, as we saw with the 2020 election. And if that foundation crumbles because she's not able to be supported by a primary care physician or hospital, even giving her something as little as an aspirin to relieve her pain, what is going to happen to other fabrics of society?
For one of my colleagues in the office building, the first signal [that] something was wrong with the Black women around her was when she went into the office building in August, and she realized that the strawberries were dirty, and that the office floor wasn't clean, and she's like “We’re in the age of COVID! Why isn't all this clean?”
I said, “Let me explain to you what Black and brown women in downtown Boston have dealt with since March, while you were isolating in the suburbs. We've died. Our parents have died. Our children have died, or they're suffering from long COVID. So we have had to make a decision. Do we go into the office and wash those dirty strawberries and make them shiny for you? Do we vacuum, do we answer the email so you can understand what your books will look like by the end of the year, do we stock those grocery store shelves or manage the numerous businesses you patronize but don't realize Black and brown labor keeps propped up?” And a lot of my colleagues, myself included, have had to make decisions. We cannot.
So while now there's devastation in Black and brown communities, I am slowly starting to see it spread into my white colleagues’ communities. They're texting me asking, “Well, what happened to Suzanne?” I said “She died from COVID in April. That's why you don't know where the permanent markers are or where certain things are in the office.” And that's what the canary in the coal mine is.