Linda Villarosa lays bare an uncomfortable truth in U.S. health care

California Uncovered

The premise of Linda Villarosa’s book Under the Skin: The Hidden Toll of Racism on American Lives and on the Health of Our Nation is simply stated. “The poor health outcomes of the world’s wealthiest nation are often presented as a mystery, yet their root causes are hiding in plain sight,” she writes. Those root causes are inequality and discrimination, and feeding those roots is racism. 

Villarosa asserts that poverty and racism are not interchangeable, even if they often overlap. Lack of money, education, information and access to health care “can be tied to being Black in America,” Villarosa notes. Even when accounting for income and education, Black health outcomes are still worse than those for other races. Racism, she writes, creates “physical vulnerability and systemic disadvantages that education, income, and access to healthcare can not erase.” 

A former New York Times health editor and contributor to its 1619 Project, Villarosa teaches journalism at the Newmark Graduate School of Journalism at the City University of New York. Villarosa spoke to Capital & Main about the toll that racism takes on health, and why addressing racism in both the practice of health care as well as an aggravator of illness is vital to closing the racial health gap in the United States. 

This interview was edited for length and clarity.

Capital & Main: You distinguish race as a risk factor versus racism as the driver of health inequity. How do you explain that difference? And is that difference what motivated you to write this book?

Linda Villarosa: There has been a longstanding idea that something about being Black was causing unequal health outcomes for Black Americans. And there’s never been a time in the history of the country where Black people and white people have equal health outcomes. Ours have always been worse and generally worse than other people of color as well. And that started at birth, starting with infant mortality and maternal mortality, through most of the diseases we call lifestyle, like heart disease, the No. 1 killer, and diabetes and stroke all the way to the end of life and life expectancy, where Black people have always lived fewer years. And then with COVID, we found out that Black people had worse health outcomes, more hospitalization and death. The idea was that it was something about being Black, which meant race.

And the thinking behind that is [that] it is either something genetic, something wrong with the Black body, or something wrong with Black culture, a lack of education, too much poverty, all these things. 

But as I was researching the book and interviewing people and really looking more closely, it became clear that this wasn’t just that.

What has not been looked at very well at all in our country is the effect of discrimination and racism on Black people’s health. It’s been undervalued and underreported.

In your book, you write about seeing this racism play out in your adult life when your father was not well.

That was in 1999. I was the health editor of the New York Times, and my mother called me. Both my parents lived in Denver, and she said, “You need to come home. Your father’s very sick and he needs you.” And she gave me these instructions, “Put on really nice clothes. Put your New York Times business card in your pocket and then I will pick you up at the airport and we will go right to the hospital.”

When my mom met me I said, “What’s going on?” She was very dressed up too, and I said, “What’s going on?” And she said, “Your father’s really ill.” And she said, “They’re treating him like an N-word and we need to go and make them see who he is.”

So we went to the hospital and my father looked terrible. His hair was not combed, he was wearing a dirty gown, and worse, he was restrained to the bed and was really upset.

It turned out he had colon cancer, but he didn’t know. And he was getting more and more upset about not being treated well and not having things explained to him. And it was super upsetting to see him looking like that. 

We took the health care providers aside and said, “Wait a minute. Something’s got to change here.” We had gone home, we got his medals from his military service. He was a veteran, a hero. We got his degree. His college degree was in bacteriology. So he was actually a scientist. And if they had slowed down and explained things, he wouldn’t have been so fearful.

We showed them pictures of how he looked before he was ill. He was always impeccably dressed and just a quiet, soft-spoken, really kind person with a good sense of humor too. And we made them see him, not the disease, but him as a human being, which we should not have had to do. We should not have had to pull out some middle class respectability card, but we did it because that’s the card we had to play. But that started making me think this system is unfair to people, especially Black people.

This is a phenomenon, you said, of people not seeing patients as individuals. And there was another example where you followed a woman named Simone and saw the same thing happening.

In 2017 I was working on a story about infant and maternal mortality among Black mothers and babies. And I had interviewed Simone Landrum, who told me about the tragedy the year before of her baby daughter’s stillbirth. She named her Harmony. And Simone almost bled to death. 

Then a year later she was pregnant, and this time she has a different doctor, she has a doula to help her with the birth and pregnancy. She’s at a different hospital. It was time for her to give birth. She and I and Latona Giwa, her doula, went to the labor and delivery room. And I was surprised by how badly she was treated.

So there were three of us in the room from the New York Times Magazine, Latona Giwa, a trained labor and delivery nurse, and Simone, the birthing mother who had had a tragedy the year before. A parade of nurses would come in and they’d ask her the same questions, “How many children do you have?” And she’d say, “I have two children. And then I had a stillbirth last year.” And then each time they said, “When was the demise? When exactly was the demise?” 

To call that baby “a demise” was really upsetting for someone who was traumatized. Each time they said “demise,” you could see her getting more and more upset. Latona said, “Please stop calling what happened ‘a demise’ because it’s upsetting her. And also stop asking her the same thing over and over. It’s in the chart. Put it in the chart.”

She was in a lot of pain. She asked for an epidural. We left the room. When we came back, she was upset again because they were asking her kind of snarky questions like, “Oh, how many children do you have? Are you going to have room for this baby in your house?” And also, they gave her the wrong kind of epidural so her legs felt paralyzed. And when she complained, they said she was wrong. She was right. 

Eventually, it’s time for the baby to come. And the doctor comes in; none of us have ever seen him. He was not the doctor I met who was a woman, and he was much older. So we didn’t know him. And then he just put his hands right inside of her without really talking to her or formally introducing himself. Then he leaves to change his gown, the baby’s about to come. And the young women who were residents and interns, maybe a medical student, were going, “Oh, it’s your turn to deliver the baby. It’s your turn.” And they were sort of taking turns and not focusing on her. There was one nurse. Me and Latona were focusing on Simone, who was really, really scared because she had lost a baby the year before.

The baby was fine. He’s 5 years old now, he’s great. But I just thought, I cannot believe I witnessed this kind of treatment for someone who had been so upset because of what happened previously. And also that there were no other health care providers of color from the doctor to the nurse to the intake person who were treating her in New Orleans, which is a city with such a high percentage of Black people. And I wrote about that for this story and I saw it and I never forgot that. It’s what motivated me to write Under the Skin.

So Simone was in a room with a New York Times editor and a person who knows their system very well and all that still happened.

Yes. Three Black women and all this happened.

How do we correct these kinds of situations?

One of the things I did for the book was go back to New Orleans because, as a reporter and a writer, sometimes you just go into a city and you write a story that is sort of investigative or negative and then you just leave and don’t go back.  [I went] back and saw that there was a health equity group, a perinatal equity group that was trying to make a change. And they went back to that very hospital. They didn’t talk to Simone, but they talked to other women, Black women who had had difficult experiences with birth. And they listened to their stories, and sometimes the very people that caused the harm were in the room. And that was part of their sort of restorative justice training for the hospitals in Louisiana.

I listened to a woman who was treated badly and who had a very hard birth and her baby is disabled. She told her tearful story with the hospital folks listening. And after the hospital administrators heard what she said, they also had a positive story of treatment there. And they opened an OB-GYN emergency room — they hired four people, and they equipped it because of the stories that they heard. So I think listening to people’s stories and being proactive in making a change is one way to correct a system that’s broken.

And you also saw another promising example in California.

Kira Johnson, a Black woman, died at Cedars-Sinai [in 2016] as a result of a botched C-section. And so what happened in California is there was a sort of all-hands-on-deck change in the hospital system. Technical innovations and clinical protocols were put into place to really fix the system so that women in general weren’t dying or almost dying. But it didn’t affect the racial disparity.

So there was a bill passed before the pandemic to say, “Anyone who works with pregnant and birthing people in your state, in the state of California, must go through some kind of anti-racism or implicit bias training.” I think when the pandemic happened it was hard to see the real effects of this, but I think it’s an explicit nod towards saying we can’t doctor our way out of these problems. You have to look at race and confront race and racism head on. You can’t just change the system and expect it just to work out for everyone in a system that has discrimination and racism embedded in it. And it has been there for a long time.

You write about a study in Iowa that tracked the effects of an immigration raid that actually may have had an effect on health long after the actual event. 

In 2008, in a town called Postville in Iowa, there was at the time the largest ICE raid in the history of our country. It was at a meat processing plant where there were almost exclusively Latin American immigrants working. Families were separated, people were arrested. There was fear throughout the community, especially for those who were undocumented, but even for everyone working there because so many people were busted and it was very public. People were taken away in handcuffs. I looked at the pictures recently. It’s really jarring to see that kind of mistreatment. There was also a lot of media coverage in Spanish language and other news in other media. So it reverberated to the community.

Dr. Arline Geronimus coined the term “weathering.” It describes the effects of systemic oppression on the body. Her theory is that what happens to the body as it tries to withstand and overcome challenges and insults from society, it has an effect at the cellular level and it kind of creates a kind of premature aging. She had a graduate student who was from Iowa, so they went to Postville and they looked a year later at the birth rate of the Latinx people, birthing people, comparing it to the white community and even those who are not directly involved in the ICE raid. And she found that the babies born of the Latinx women were 25% smaller.

So that meant they had a lower birth weight, which can be a precursor to losing a baby to infant mortality, but the white babies were the same size. She attributed it to the kind of coping that people had to do and real extreme stress that affected the mother’s body and also affected the baby’s birth rate. And  [Geronimus] took it beyond Black people and looked at the idea that anyone who is oppressed and has to cope with that kind of challenge and insult, and how it can ravage health.

So what are some things that make you optimistic about the prospect for addressing racism in health care?

The most exciting thing for me is looking at the next generation of medical students, nursing students, public policy managers and creators and midwifery students who are really interested in making a difference. I am really impressed with them. It’s often the students themselves who are pushing for changes in the system and don’t want to be the same kind of health providers and policy makers that the past generation has been.

They did it on their own with little support or funding. Their group is called the Institute for Healing and Justice in Medicine. And I’m keeping an eye on them and other groups around the country of up and coming health care providers. 

I’m also, this semester, teaching pre-med students at the City University of New York School of Medicine. I have a bunch of very engaged students, mostly of color, who are learning about how racism gets baked into the systems and institutions of society, including the health care system that they’re entering. It’s been a really rewarding challenge for me. Just to see how hungry they are, how open they are, how interested they are to learn and to do better, be better.