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May 23, 2020

Reproducing racism

Co-produced with PRX Logo

As racial disparities in health come into the spotlight amid COVID-19, we explore how the legacy of racism affects maternal health in the United States. 

First, we hear the story of Amber Rose Isaac, a woman who died in childbirth in New York, and how her death has become a rallying cry for black maternal health activists.

Reporter Priska Neely explores the complicated legacy of J. Marion Sims, the “father of modern gynecology,” who experimented on enslaved women in the 1840s.

Reporter Julia Simon takes a look at a commonly used calculator that may be leading black and Latina women to C-sections they don’t need. 

We end with a conversation between two activist physicians from different generations. We hear their reflections on balancing outrage with optimism and fighting for justice for all parents and babies.

Credits

Reported by: Priska Neely, Julia Simon

Produced by: Priska Neely

Lead producer: Priska Neely

Edited by: Jen Chien

Production manager: Mwende Hinojosa

Production assistance: Amy Mostafa

Sound design and music by: Jim Briggs, Fernando Arruda

Mixing: Jim Briggs, Fernando Arruda

Additional mixing: Claire Mullen

Special thanks: Justen Alexander, Briana Barker and Ese Olumhense

Executive producer: Kevin Sullivan

Host: Al Letson

Support for Reveal is provided by the Reva and David Logan Foundation, the John D. and Catherine T. MacArthur Foundation, the Jonathan Logan Family Foundation, the Ford Foundation, the Heising-Simons Foundation, Democracy Fund, and the Ethics and Excellence in Journalism Foundation.

Transcript

Reveal transcripts are produced by a third-party transcription service and may contain errors. Please be aware that the official record for Reveal's radio stories is the audio.

Al Letson:

From the Center for Investigative Reporting in PRX, this is Reveal. I'm Al Letson. Earlier this spring, New Yorkers Amber Rose Isaac and Bruce McIntyre were getting ready to welcome their first child. They'd been dating for two years, but had known each other much longer.

Bruce McIntyre:

I actually tried to talk to her six years ago, and she turned me down, because she was just so focused on school and her career.

Al Letson:

Amber was 26, and working in early childhood education. She was about to get her Master's. Bruce was 28, and working in finance.

Bruce McIntyre:

Amber was very excited to have a baby. This is what we planned for. We planned months in advance for this.

Al Letson:

The couple was aware of some scary statistics. That women like Amber, who was black and Puerto Rican, are more likely to die from pregnancy-related complications than white women. In New York, the rate of death for black moms is eight times higher. They were trying to do everything right.

Bruce McIntyre:

Strictly vegan, very healthy woman. She'd make sure that we're reading stories to the baby every night. Sing to the baby, talk to the baby every single night.

Al Letson:

She'd often share her thoughts on Twitter about how active the baby was in her belly, about how her baby shower was thwarted by the pandemic. On April 17th, Amber sent what would turn out to be her final tweet, saying that she couldn't wait to write a tell-all about her experience with her doctors. Days later, she died at Montefiore Medical Center, the Bronx hospital where she had been getting care.

Bruce McIntyre:

She ended up passing away after midnight. My son was born 10:30 that night, on 4/20.

Al Letson:

Bruce was left behind with their newborn baby boy, Elias.

Bruce McIntyre:

Of course every day is hard. Mornings are hard, nights are hard.

Al Letson:

After her death, Amber's final tweet went viral. A local news outlet reported on it. Other media picked it up, and her story was the latest rallying cry for the issue of black maternal mortality. During her pregnancy, Bruce and Amber had been unhappy with the way hospital staff treated her. They said the staff was rude and unprofessional to her during office visits. Then, the pandemic hit.

In March, Amber had to switch to online doctor visits. Bruce says she tried to get an in-person appointment, but didn't get one until April 17th, the day of her last tweet. When she went in, they found out she developed HELP syndrome, a rare pregnancy complication that affects the blood and the liver. It's rarely fatal. Bruce told us that, had they know that earlier, Amber could have gotten treatment for it. On April 20th, the hospital staff induced her labor, then performed an emergency C-section.

Bruce McIntyre:

They came in. I was singing to the stomach, so Elias could be prepared and alert that he's coming. I said my goodbyes to Amber, I didn't get to give her a huge or a kiss because I had to wear PPE.

Al Letson:

She died shortly after the operation. Bruce told us and other media that her platelet levels were so low that she bled out. The hospital wouldn't confirm that, and declined an interview, but in a statement, a spokesperson said that most of their deliveries are minority mothers and that their maternal mortality rate. "Any maternal death is a tragedy," the statement said. "Our hearts go out to Miss Isaac's family." Baby Elias, born about six weeks early, is doing well.

Bruce McIntyre:

Elias is phenomenal. I was able to bring him home after the first week. When he hears my voice, he'll light up and start smiling, because me and Amber were always talking to him.

Al Letson:

In the weeks since Amber's death, Bruce has been speaking out and connecting with people all over the country. He's becoming an advocate for reproductive justice.

Bruce McIntyre:

What I went through should never happen to anyone, especially if it's avoidable.

Al Letson:

The Centers for Disease Control and Prevention estimates that around 700 women die from pregnancy-related complications each year, and that the majority of those deaths could be prevented. The rate of deaths for black moms is three to four times higher than the rate for white moms. I talked to Joia Creer-Perry, an ob-gyn and founder of the National Birth Equity Collaborative.

Dr. Creer-Perry:

We know that the United States has the worst outcomes for maternal health than any industrialized country in the world. I have a black daughter who is more likely to die in childbirth than I was when I had her 27 years ago.

Al Letson:

She told me that what Bruce shared has heartbreaking similarities to the stories she's heard from so many families of women who died in childbirth.

Dr. Creer-Perry:

She advocated very much so for her own health. She was worried about not being heard, not being listened to. Ultimately, she died in childbirth. When we look around the different medical reasons that women are dying in childbirth, things like hypertension, high blood pressure, or having a blood clot, or having a heart attack. Despite income, education, and weight, black women are still more likely to die. It's not because we're not getting prenatal care, it's not because we are too obese, or we don't listen. When you control for all those things, we are still more likely to die. What happens, the difference, is how they are treated and seen inside of those systems.

Al Letson:

We know that whether it's asthma, heart disease, or even COVID-19, the rates are higher in the black population. Joia wants to be very clear about the reasons why.

Dr. Creer-Perry:

There's no magic black gene. I'm sitting here with my Afro and my black skin, but that has nothing to do with my biology as far as my increased risk of having a baby early. That's due to the impact of racism on my body, not that I was innately, inherently broken. That is why it's so critical for us to move away from saying, "Black is the risk factor," to, "Racism is the risk factor." The thing that harms black people is not our mere existence, it's all of the policies, and the cultural beliefs that we are broken, that harm black people and our health.

Al Letson:

She draws the lines from those cultural beliefs all the way back to slavery. In particular, a man named James Marion Sims.

Dr. Creer-Perry:

In gynecology, we use Sims retractors, Sims speculums.

Al Letson:

Sims invented the speculum that patients still encounter today at the gynecologist. He developed surgical techniques that led to him being known as the father of modern gynecology. He did this by experimenting on enslaved, black women in the 1840s, performing operations on them, sometimes dozens of times, without anesthesia.

Dr. Creer-Perry:

Truthfully, I did not, as an ob-gyn, learn about the father of modern gynecology, what he fully represented, until I started studying reproductive justice. Talk about how we need to change medicine. Instead of just memorizing the names of the instruments, we need to tell the real story, and the real truth around him exploiting black women's bodies for his own professional career, and how that shows up today when we provide care to black and brown patients.

Al Letson:

For decades, there was a nine foot tall bronze statue of Sims in New York Central Park. Community organizer [Jule Cadet] says she passed that statue for most of her life without a second thought.

Jule Cadet:

Like many New Yorkers, we walk past statues and monuments all the time, and don't really read about who these people are.

Al Letson:

But a few years ago, Jule came to understand Sims as a towering symbol of oppression.

Jule Cadet:

J. Marion Sims violated black women and girls' bodies.

Al Letson:

In 2017, as Confederate statues were coming down across the country, momentum built to get the Sims statue removed.

Jule Cadet:

We have nothing to lose but our chains.

Crowd:

We have nothing to lose but our chains.

Al Letson:

In August of that year, Jule was a part of a protest. She and three other black women stood before the statue wearing white hospital gowns.

Jule Cadet:

We asked if there was a white person who would be willing to splatter mock blood that we had in a water bottle in our uterine region. We were doing this chant.

Crowd:

We're not living in the south.

Jule Cadet:

Mama, mama, can't you see?

Crowd:

Mama, mama, can't you see?

Jule Cadet:

What the docs have done to me?

Crowd:

What the docs have done to me?

Jule Cadet:

We have an altar space to the right of where the statue was, because we really wanted to say that we are invoking the spirits and honoring our ancestors who had their bodies mutilated.

Al Letson:

Photos from this protest went viral, and boosted calls from the community to take it down.

Jule Cadet:

Mr. de Blasio, tear down this statue.

Crowd:

Take it down.

Al Letson:

The city finally removed the statue in April of 2018, but a larger conversation about the legacy of Sims, and his work, continued. Reveal's Priska Neely digs into that complicated story.

Priska Neely:

When these protests started gaining national attention, news headlines framed things this way: "Was Sims a medical hero or a monster? Savior or butcher?"

Deirdre Cooper ...:

Those either-or framings are really problematic, because the world tends to be more complicated than that.

Priska Neely:

That's medical historian Deirdre Cooper Owens. Her book, Medical Bondage: Race, Gender, and the Origins of American Gynecology, came out in the heat of the statue debate.

Deirdre Cooper ...:

Journalists would ask me, "So do you think the statue should stay or go?" I would tell them I'm not really interested in that, because eventually something's going to happen. It's either going to stay or it's going to leave. What are we actually doing to talk about the effects of medical racism?

Priska Neely:

Deirdre says though it may be easy to just focus on Sims and label him as a bogeyman, at that point in history, his methods were common practice.

Deirdre Cooper ...:

There were many folk like him, southern, white men, during the antebellum era, who had experimented on enslaved people, in particular in gynecology. This is not in defense of him. This is showing, when you exceptionalize people, that then flattens out, in my opinion, the argument around the systemic nature of oppression.

Priska Neely:

At the time, two decades before slavery was abolished in the United States, the system of oppression was the law of the land. Those norms shaped medicine. There was no criticism of his methods back then.

Deirdre Cooper ...:

In terms of Sims's public profile, he was an international medical superstar.

Priska Neely:

His claim to all that fame was a surgical technique that fixed a painful childbirth injury, known then as the vesicovaginal fistula. We're going to describe the injury in a few seconds, so just a heads-up, in case that sort of thing makes you squeamish. Dr. Lewis Wall is a professor of obstetrics and gynecology at Washington University in St. Louis.

Lewis Wall:

Basically stated, a fistula is a hole that opens up between a woman's bladder and her vagina, as the result of a childbirth complication, through which urine runs in a continuous stream.

Priska Neely:

These horrifying injuries occur after labor goes on for days, when the baby can't fit through the birth canal. In these early days of surgery, C-sections weren't an option. With this hole there, the women were left incontinent, suffering from inflammation and intense odor. Doctors had tried various sutures to repair the fistula, but they didn't work,

Lewis Wall:

It was regarded as one of the accursed afflictions of surgery, because nobody could figure out how to fix these injuries.

Priska Neely:

This is where Sims come in. He was a family practitioner, working on plantations in Alabama, when he first saw a fistula in an enslave woman. He considered it incurable, but after doing more examinations, he wanted to find a solution. Sims put out a call for enslaved women with the condition, and made an arrangement with their owners to keep them. In his memoir, called The Story of My Life, Sims describes working at his eight bed hospital on the corner of his yard. From 1845 to 1849, he performed experimental surgeries on maybe a dozen women, some as young as 17. Finally, after what was the 30th operation he performed on a woman named Anarcha, he found a lasting fix.

That's not 30 operations overall. That's 30 operations on Anarcha alone. This may sound shocking today, but professor Lewis Wall has published articles in medical journals arguing that the charges that have been made against Sims are largely without erit.

Lewis Wall:

Sims operated on these women with the legal consent of their owners, but they understood what they had to gain by having their injuries cured with a surgical procedure.

Priska Neely:

Historian Deirdre Cooper Owens disagrees. She says when it comes to these issues around consent, you have to look at the business of slavery and the mindset of the antebellum era.

Deirdre Cooper ...:

You have a lot of scholars who have written things to say, "Well, Sims was benevolent, because he took money out of his pocket to take care of these women." I'm like, "No, Sims brokered a business deal with their owners." Because they were on loan to Sims, to repair, that's how it went.

Priska Neely:

The enslaved women were valuable property for their owners that ensured the institution of slavery would continue. This is why Deirdre wants to challenge the notion that Sims was a butcher.

Deirdre Cooper ...:

Black women's wombs literally propagated and maintained wealth for the white men and white women who owned them. So no slave owner worth his or her salt is going to intentionally cause harm to a black woman's reproductive system.

Priska Neely:

In the years it took to come up with a successful repair for the fistula, Sims failed so many times that other doctors stopped wanting to help. His surgical assistants quit. He writes in his book, "At last, I performed operations only with the assistance of the patients themselves." The enslaved women became his surgical assistants.

Deirdre Cooper ...:

They were standing in the roles that young white men who were literate stood in. It was because of your team of black enslaved women assistants, who were also your patients, that he was able to finally get it right.

Priska Neely:

We only know the names of three of Sims's patients. Lucy, Betsy, and Anarcha. There were more who endured these surgeries. We don't know their side of the story.

Deirdre Cooper ...:

I think this is the most frustrating part, for me, as someone who studies enslaved people's lives. Most enslaved people were illiterate. Every thing that I'm uncovering about these enslaved women is through the writings of the men who owned them, who treated them, who experimented on them.

Priska Neely:

There's another layer to this erasure. Most summaries of Sims's work refer to the hospital he founded in New York as the first hospital for women in the United States, glossing over the hospital on the corner of his yard in Alabama, the place where he made his most notable discovers.

Deirdre Cooper ...:

Anti-blackness can lead you to totally erasing that that slave hospital existed. It wasn't because Sims said it, it was literally because black people didn't matter. That's why the first sentence on the first page of my book says, "The first hospital for women in the United States was on a slave farm."

Jule Cadet:

Remember that Anarcha, Lucy, Betsy, the mothers of modern gynecology.

Priska Neely:

I asked Jule Cadet, the activist who protested the statue in New York, what she thought of Deirdre's book and her efforts to complicate the narrative.

Jule Cadet:

It's not what's going to come out of my mouth, but it's what's going to come our to Deirdre's mouth, and that's important too. But I think that we're both saying that Lucy, Betsy, Anarcha put their bodies on the line and were treated as less than, and also, that's how black people are still being treated.

Priska Neely:

An African-American artist has been commissioned to create a new piece to go where the Sims statue once stood. Her proposed design features a winged woman, a black angel, holding the Staff of Asclepius, the medical symbol with the serpent entwined rod. Images of women will be etched onto the body of the angel, to honor the unknown. The Sims statue was supposed to be relocated and displayed at the Brooklyn cemetery where he's buried. I contacted the cemetery. They say for now, it's in storage.

Al Letson:

That's Reveal's Priska Neely. Racism has continued to show up in the field of women's health up until the present day. Next, we look at a commonly used calculator that may be leading black and Latina women to C-sections they don't know. That's next on Reveal, from the Center for Investigative Reporting and PRX.

From the Center for Investigative Reporting and PRX, this is Reveal. I'm Al Letson. A few years ago, Christine Smith was pregnant with her first kid, planning a vaginal birth.

Christine Smith:

I come from a family of very strong Hispanic women that have always done completely natural labors with no problems. My grandma had many children on a farm with a midwife. She didn't need a hospital.

Al Letson:

Christine did plan to use a hospital, so when her water broke, she headed there.

Christine Smith:

They recommended the epidural. I took it.

Al Letson:

Lying in the hospital bed on her back, she was numb, but the baby was coming out. Even though she saw the baby's head, the doctors recommended Christine do a C-section. She and her husband assumed it was an emergency, but only later, she realized, there could have been other options.

Christine Smith:

Not the nurse, not the doctor could just turn on my side or put me on my knees. They tried nothing to get this baby out when I was just so close.

Al Letson:

Christine was determined that for her next pregnancy, things would be different. Doctors used to think after one C-section, if you got pregnant again, it was too risky to deliver the baby vaginally. But in the late 80s, U.S. doctors were getting concerned about the growing rates of C-sections. C-sections, though sometimes necessary, can cause infection, hemorrhaging, and increase the risk of maternal death. So around this time, more doctors started giving people who had C-sections a trial of labor.

Basically, giving them the option for vaginal birth rather than going straight to surgery. As for Christine, she found a doctor that would oversee a vaginal birth after caesarian, commonly called a VBAC.

Christine Smith:

He sat me down in his office, and then asked me the questions for the VBAC calculator.

Al Letson:

The calculator is basically like a form, where you input your information, and it gives you a score on how likely you are to have a successful VBAC. Christine's doctor got her answers. Height, weight, number of prior cesareans, and race.

Christine Smith:

I think he asked the race question for last. He asked what race I was, and I said I'm Hispanic. He then asked me, "Well, how Hispanic are you?" I said, "I'm 100% Hispanic."

Al Letson:

The calculator gives a lower score if you identify as Hispanic or African-American.

Christine Smith:

Then he said, "Okay, that lowers your chance even more." Then he gave me my score and said they wouldn't be able to offer me a trial of labor. I paused, and I thought for a second, "Should I just lie about it?" Then I'm like, "Why? Why even bother lying? It's not even worth it, to lie about my race." He offered me a tissue from his tissue box because I was in tears.

Al Letson:

Christine left that exam room and never went back. She eventually found another doctor and was able to deliver her second child vaginally late last year, but her experience with that first doctor is not unique. The use of this particular VBAC calculator is widespread. The American College of Obstetricians and Gynecologists talks about it in their guidance on VBACs. Doctors and midwives use it all over America. Reporter Julia Simon wanted to find out why race is a factor in the calculator, and whether this common tool is leading black and Latinx pregnant people to get multiple C-sections they might not need. Julia begins our story with a med student in Boston.

Julia Simon:

It all started with when Darshali Vyas was in her second year of med school at Harvard.

Darshali Vyas:

Start of the teaching section, and we're discussing VBAC.

Julia Simon:

A resident was showing slides, and up on the screen flashed this form.

Darshali Vyas:

You input the age of the woman, their BMI, their prior labor course.

Julia Simon:

What Darshali was looking back was looking at was the same VBAC calculator Christine's doctor used. Then the resident flashed the next slide, and in that moment, Darshali got to see something Christine never got to see: the math behind the calculator, the algorithm.

Darshali Vyas:

It was very clear, you could see the subtraction factors highlighted on the screen.

Julia Simon:

Subtraction factors. Things that were built into the algorithm that meant a patient would get a lower score. This got Darshali's attention.

Darshali Vyas:

The equation very clearly has two subtractions factors. It subtracts for the likelihood for successful VBAC if the woman is identified as African-American, or as Hispanic. The discomfort, I think that's how I would describe it. There is a discomfort as a trainee, and as a future provider, of how race is being used in this way, and how it's almost deceitful, in a way, if you don't look at the algorithm, then you would never know that it's subtracting from the success.

Julia Simon:

She wondered, if black and Latinx already have higher rates of C-sections, what if this calculator, by giving them a lower score, was making their C-section rates worse? When I met Darshali in Boston, I had her show me the calculator. It's easy to find online, so I had Darshali fill it out for me.

Darshali Vyas:

Let's just say...

Julia Simon:

Let's just say I had a cesarean.

Darshali Vyas:

Let's say you had one cesarean.

Julia Simon:

One cesarean.

Darshali Vyas:

And this is your second pregnancy, right?

Julia Simon:

Okay.

Darshali Vyas:

Do you identify as African-American?

Julia Simon:

I do not.

Darshali Vyas:

Do you identify as Hispanic?

Julia Simon:

No.

Darshali Vyas:

Any prior [crosstalk].

Julia Simon:

The fact that the calculator even asks this question shows how much room there is for error. Hispanic's used broadly to refer to people who share Spanish as a common language. Many people also consider it part of their racial identity, but some don't. Also, if you identify as both Hispanic and African-American...

Darshali Vyas:

The calculator does not let you. If you say yes to one, it automatically puts no in the other category, and you can't enter someone as both. It just makes no sense.

Julia Simon:

Filling it in as a white woman, I got a 63% chance of successful vaginal birth after cesarean. Then we tried it all again, all the same, except...

Darshali Vyas:

So I switched African-American yes, and now it's 47.

Julia Simon:

That's a big change.

Darshali Vyas:

Yeah, it is a big change. If you are a provider who has a threshold in mind, then certainly this could have been the difference between being willing to do it or not.

Julia Simon:

After Darshali saw the calculator on the screen, she wanted to learn more. A year later, she was taking a medical school social science course, had a paper to write, and thought this would be the perfect topic. Her professor encouraged her to try to publish it in a medical journal. Darshali got to work.

She learned this calculator debuted in 2007. Around this time, there were a lot of conflicting views on how to counsel patients on vaginal birth after cesareans. This group of obstetricians said, "What if we made a tool that would help to standardize advice?" A calculator to give doctors and patients a set of odds for successful feedback. The doctors used this huge stash of data over 7000 women who had given birth at a bunch of U.S. hospitals.

Darshali Vyas:

Basically they look at all the women in this dataset who had successful VBACs, and then looked at all of the qualities they had. Then they look at which characteristics correlate with feedback success.

Julia Simon:

Things like having health insurance, being married, being white. All these things correlated with success, but those first two things didn't end up in the calculator. Race did. Did the study say why it was using race?

Darshali Vyas:

It didn't give an explanation. I think that was part of, I assumed if they were putting race into this, they would have addressed it more explicitly.

Julia Simon:

Darshali couldn't find a smoking gun for why race was in the calculator. But she did find a study from 2006 with a possible clue. The study said nonwhite women had worse outcomes for VBAC and offered the women's pelvic types as a factor. Turns out these pelvic type of a dark history.

David Jones:

Going back into the 19th century, there was a long tradition of doing skeletal analysis.

Julia Simon:

This is David Jones, Darshali's professor at Harvard Medical School. He's a historian of medicine and eventually became a coauthor of her paper.

David Jones:

Anthropometry was the scientific term for what they were doing. Anthropos is man, and metry is measure. So measuring man, but in this case they were measuring skeletons. A lot of this anthropometry was done in the service of proving differences between the races.

Julia Simon:

Enter a research duo, Cogswell and Malloy.

David Jones:

And so in the 1930s, this pair of researchers do a study of the shapes of pelvises, and they convince themselves that there was a typically Caucasian pelvis, there was an african pelvis. Then they made claims that different shaped pelvises were better or worse for different things. The European pelvis was good for childbearing, the african pelvis was better for physical labor. Those kinds of claims that get made.

Julia Simon:

Researchers at this time were often starting from a belief in a biological basis for race. They were looking to prove differences between the races, whether those differences existed or not. Meaning, their methodologies were often flawed. Cogswell and Malloy were no exception. Here's Darshali.

Darshali Vyas:

The way they determined those races was actually, it's very circular. They looked at the measurements and thought, "Well, black women are thought to have narrower pelvises, so the fact that this collection of black skeletons has a narrow pelvis means that this is a pure sample of black skeletons."

Julia Simon:

So they didn't even know the race of the woman before the woman died and got the skeleton?

Darshali Vyas:

That's the whole, how can you ascribe someone else's race to them retrospectively, right? You don't know. They're bones.

Julia Simon:

These pelvic types have been debunked multiple times. Last year, a group of Australian researchers called them a myth. The thing is, I've talked to obstetricians and midwives across the U.S. for this story. Most still use them.

Darshali Vyas:

Yeah, it's still in the most recent version of the obstetrician gynecologist textbook, the Williams text book. It still has the four pelvic types.

Julia Simon:

It's an example of a sort of feedback loop. If the research we base medicine on is biased, then the health outcomes can end up reflecting that bias, even reinforcing it. That seems to be what happened to a woman named Janae Somerville. Janae was living in Huntsville, alabama. She had already had two children via C-section, was pregnant with her third, and her new doctor suggested she try a vaginal brth, a VBAC.

In the end of Janae's second trimester, everything was looking good, but then Janae showed up for an appointment, and the doctor came into the room with a paper in her hand, a study.

Janae Somervill...:

She basically said that, you know, if we tried for a VBAC, because of my race, that, and I quote, "Bad shit could happen," end quote. What she did say was that compared to Caucasian females, African-American females do not have the pelvic structure to support having a VBAC.

Julia Simon:

Do you remember what you said to her?

Janae Somervill...:

Yeah, I said something along the lines of, "Black women are made fun of for having baby making hips all the time, yet you're telling me that these hips that I'm stereotyped for can't push a baby... I don't know."

Julia Simon:

We made repeated requests for comment from Janae's doctor. She didn't get back to us. What did you feel in this moment?

Janae Somervill...:

I was... I felt abandoned, to be honest with you. She told me to find another doctor and she said she was needed elsewhere, walked out of the room and left me in there, alone.

Julia Simon:

A year ago, Darshali, David, and their coauthors published their paper. In it, they argued the calculator should take out race in part because in countries like Canada and Sweden, they already have. Here's David again.

David Jones:

Seen in a global context, the U.S. looks more and more like a real outlier. Is that because we know something medically that everyone else doesn't know, or is that because we are somehow obsessed with this notion of race that we just can't let go? I think it's that we're obsessed with race and can't let it go.

Julia Simon:

To definitively answer why race is in the VBAC calculator, there was one guy to call.

Bill:

Hi, my name is Bill [Gropeman].

Julia Simon:

Bill is a professor of obstetrics and gynecology at Northwestern University in Chicago, and a big deal in his field. One of the many things he's famous for, being the main doctor behind the VBAC calculator. I asked Bill why race was in the calculator, but not, say, insurance status. He said when they put all the factors into the computer, looking for what related to VBAC success, race came out on top.

Bill:

Yeah, that's just what came out to be most, one of the factors that was most predictive.

Julia Simon:

Which led me to ask, if race was so predictive, is the idea that there's some biologic difference between the races?

Bill:

Oh, gosh, absolutely not. Absolutely not. That would be a really, really wrong, an interpretation that I would want to argue strenuously against.

Julia Simon:

But, bill said, there are racial and ethnic differences in obstetric outcomes. He himself wrote a paper about it. If your paper says that there is racial and ethnic disparities in obstetric care, and if you're saying there's no difference between a white woman and a black woman's pelvic shape or whatever, then that has to mean that the differences in the outcomes are explained by racist, right?

Bill:

Yeah, I think race ethnicity is a socially determined variable. There's no reason to think that those differences are biologically based.

Julia Simon:

So then my question is, do you worry that there's a way that this use of race in this tool perpetuates the racial inequities of our society?

Bill:

I worry about all of that every day. Could I point out one thing, though? Again, one assumption that was baked in there is, and if race was not in the calculator, somehow those doctors would suddenly be not using it anyway, right? This is not a calculator problem, this is a calculator, no calculator, this is something that is a core, incredibly important issue, not just in obstetrics and gynecology, but in all of medicine and society.

Julia Simon:

I totally agree that it goes beyond the calculator, but the face that race is in the calculator, a lot of people see a tool with this kind of aura of medicine around it. What do we do about that?

Bill:

Again, I would return to the concept of, if there's no calculator, then what the world look like there, is that you have people, conceivably, doing the same thing but without any structure around it.

Julia Simon:

I sent Darshali's paper to bill. He wrote me back acknowledging the importance of the discussion. He said that the creators of the calculator thought deeply before putting race in, and ultimately decided it was the best approach to be, "Most patient centered and equitable." But I told Bill race in the calculator doesn't feel equitable to some women. I told him about Christine, who identifies as 100% Hispanic and wasn't offered a chance at a vaginal birth.

These women are being told that their numbers are much lowr because of their race, these women ar being told that.

Bill:

This is not supposed to be used, and has never been proposed to be used as something which says, "Oh, there's this number, you're allowed or not allowed," whatever even that means. This is supposed to be something that conveys information to an individual such that she can make decisions that are best for her.

Julia Simon:

Still, people don't always feel empowered to make their own decisions around birth. Janae says her first C-section happened in a state of confusion.

Janae Somervill...:

I guess they didn't want to take the time to explain how things were supposed to be, and they just put me under general anesthesia and I woke up to being a mom for the first time, and to a new baby. I missed the birth of my first child.

Julia Simon:

With her third pregnancy, when the doctor told her she couldn't do the VBAC because of her race, she started looking for a new doctor. Already in her third trimester, she did something she had never done before.

Janae Somervill...:

I specifically made a conscious decision to look for someone that looked like me, to take care of me.

Julia Simon:

Janae found a black, female doctor, who supported her wish to have a vaginal birth. To make sure the new doctor was available to deliver her baby, Janae was induced at 39 weeks. She did attempt a vaginal delivery, but in the end, had another C-section. Janae and her husband would love to have more kids, but because of all the surgeries...

Janae Somervill...:

I was told the last time that I had a C-section that I need to maybe start thinking about not having anymore children. There's so much scar tissue there now, it's not just, well, can I have more children? It's can my body handle it? I feel like I can, but I don't know.

Al Letson:

Thanks to Julia Simon for that story. Since publishing the paper challenging the use of race in the VBAC calculator, Darshali Vyas has heard from physicians in New York, Boston, San Jose, and Albuquerque who are no longer entering their patient's race. Today, we've heard how racial bias is ingrained in our medical system. But there are doctors working to turn things around. We hear from two of them next, on Reveal, from the Center for Investigative Reporting and PRX.

From the Center for investigative reporting and PRX, this is Reveal. I'm Al Letson. We've been focused on the risks for moms this hour, but there's more to the story. Here's a heart breaking statistic that's been true for decades. In the united states, black babies are twice as likely to die before their first birthday, compared to white babie.s most of the babies die because they're born premature, and with complications. They just don't make it.

That's the statistic that has touched me personally. A little over 20 years ago, my daughter Lauren died in utero about a month before her due date. The pain of that loss, it never really goes away. You just learn how to live with it later. Back in 1984, there was a Congressional hearing focused on the failure to close the gap. One of the speakers was an obstetrician named Dr. Vicky Alexander. In her testimony, she called the situation genocide through neglect perpetuated by the U.S. government.

Dr. Vicky Alexa...:

I stand at the bedside of these mothers, some white, some Latina, but mostly black. At the bedside of these mothers whose babies are dying, and when I know it can be prevented, I don't want to hear about task forces.

Al Letson:

This is Vicky reading a transcript of the testimony all these decades later. She's 79 now.

Dr. Vicky Alexa...:

It's like I can say the same thing again, right now. The ratio is still two to one.

Al Letson:

Almost 40 years later, there's a lot that's changed. The infant mortality rate in the U.S. is lower, more babies make it beyond that first year, but the gap is still there. Black babies are still twice as likely to die as white babies, and this is regardless of income or education level of the mother.

Dr. Vicky Alexa...:

It has to do with economy, with housing, with jobs. The social determinants of one's health, as well as the toxic stress of living in a racist society.

Al Letson:

Vicky has continued to fight for these issues. Along with testifying and organizing, she founded a San Francisco Bay Area nonprofit called Healthy Black Families. Along the way, she's mentored other doctors with the same mission.

Zea Malawa:

So hi, my name is Zea Malawa. I'm a mother, and one of the few people who is black, born in San Francisco, and still lives in San Francisco.

Al Letson:

Zea practiced as a pediatrician for 11 years before she decided to go back to school and get a degree in public health.

Zea Malawa:

When I was getting my Master's of public health at Berkeley, people would always approach me and they would ask me, "What are you going to do when you graduate?" I was like, "What I would like to be is an activist physician, so do you know anyone who could help me figure out what job that is?" Multiple people introduced me to Dr. Vicky as a prime example of what it means to have a career as an activist physician.

Al Letson:

Zea now runs a program called expecting justice, focused on improving maternal and infant health in San Francisco's most marginalized communities. These two activist physicians have dedicated their lives to this work. We invited them into our studio to interview each other.

Zea Malawa:

So Dr. Alexander, I was hoping you could tell us a little bit about you have so many decades of incredible work behind you. Tell us how you took a traditional physician job and made it an activist physician job.

Dr. Vicky Alexa...:

I don't remember a time when I did not want to be a doctor. I went to UC San Francisco. At the time I finished medical school, I really knew I wanted to do women's health. This was the time of the Panthers. There were movements all over the place. I couldn't do all of that, even though I wanted to, but I had to study and I had to do my residency.

In the process of doing my residency, it became clear to me the statistics around birthing for black people. Then I became real angry. And so, I became the spokesperson for something called the coalition to fight infant mortality. That type of activity really helped me to politicize myself, and feel good about myself, whereas prior, I was feeling really like, "Oh, God, this is hard. Maybe I'm stupid." But this helped me to find my niche, an activist doctor. How did you get started?

Zea Malawa:

When I was little, I had really bad asthma. I was born in the '70s so the asthma medicines we have now were not there, then. My mom was in her early 20s when she had me. She's a single mother. We were this black family that would come in once a month with a kid with very severe asthma. We would frequently leave the hospital against medical advice because of how abusive and abrasive, sometimes, the medical staff would be in treating us.

On one of these particularly hard ER visits, at a certain point when these residents were literally fighting with my mom because I couldn't swallow this pill, this doctor came into the room. He threw everybody out, he took this pill, he opened it into some apple sauce, and he said, "We are going to have a tea and applesauce party." I remember in that moment when I was five or six, thinking, "Every black kid should be able to have this kind of hospital experience, so this is probably my work."

I think another really critical piece of this, though, was that my mom grew up with some of the most intense childhood trauma that I know. Despite that, by the time she had me, when she was 24, she had us on full vegetable, organic, healthy diet. I asked her, "How did you get there?" She told me that the Panthers reached her when she was in her late teens in San Francisco. By the time she had me, she was really clear that she was going to raise me healthy. She was going to invest in my education, but she was also going to raise me with a sense of accountability to my community.

Something that strikes me a lot, Dr. Vicky, is that even though we've been able to reduce infant mortality rates for people of all racial backgrounds, the disparity between races persists completely untouched. As far back as 1984, you were in front of Congress testifying about this.

Dr. Vicky Alexa...:

Here's a paragraph. "I'll leave you with a question: how long is it going to take to change this? Why should black babies die twice as frequently as white babies? How many bedsides am I going to have to sit at constantly, over and over, and how many times are we going to have to take time away from that patient and come in here to Washington DC to say it over and over again? Thank you." That was my last statement.

Zea Malawa:

But it's a valid question.

Dr. Vicky Alexa...:

I was really pissed.

Zea Malawa:

Because how many times are we going to have to say it? What do you think it will take to start to change things?

Dr. Vicky Alexa...:

Are you asking that as a rhetorical question, Zea? Or do you have some ideas?

Zea Malawa:

No, I'm asking that as an authentic question. Of course I have ideas, you know me.

Dr. Vicky Alexa...:

Why is it not changing? It's not changing because the housing situations continue. The education system continues in a biased way, despite all these nice little programs we got. The social things, and those things have not been addressed in concert with the medical stuff. It's almost like a separation.

Zea Malawa:

You know, I'm in my 40s, and I hear this testimony. All of it is totally applicable right now, and it hurts my heart, a lot, honestly, because I know how hard folks have been working. That being said, there are a lot of things that are happening that also give me a lot of hope. There's such an incredible coalition right now across the country of incredible black leaders who care about this work. We have powerful legislators like Senator Kamala Harris on our side, in this struggle. But I also feel very moved by non black leaders who are showing up in solidarity, because that's the only way we move forward. In the name of racial solidarity, I want a name that is not just black women who are experiencing birth disparities, but also a lot of indigenous communities, including Native American and Pacific Islander communities.

I feel the synergy of people who recognize that enough is enough, that it's time for us to do the deeper work of really addressing the consequences of racism and the fact that people recognize this, it just gives me hope. I feel magic in the air. I feel like in the next five years, we're going to see something different. I truly believe that.

Dr. Vicky Alexa...:

Wow, Zea, it's wonderful to have you up and coming. This is precisely what's necessary. Congratulations.

Zea Malawa:

Thank you. Come along, don't act like this is not your work, too.

Dr. Vicky Alexa...:

Yeah, right.

Zea Malawa:

You can't escape it.

Dr. Vicky Alexa...:

It's all our work.

Zea Malawa:

You can't escape it.

Dr. Vicky Alexa...:

It's all of our work.

Zea Malawa:

You know, Vicky, neither of us are new to our careers anymore. This work, it takes a personal toll. What keeps you in the game, Vicky?

Dr. Vicky Alexa...:

I think underlying it all is healthy families, healthy babies. Just seeing them keeps me motivated. My own child, I adopted a child. I waited too long and then couldn't get pregnant, so I adopted. And my grandchildren. On the other hand, I am in therapy.

Zea Malawa:

That's real.

Dr. Vicky Alexa...:

I do meet times of real depression. I guess I'm just like any other person. How about you? How are you going to deal with the next 40 years?

Zea Malawa:

You know, I can't help but see possibility everywhere I look. In these beautiful communities that I do work in, if I'm seeing all of these incredible possibilities, it's impossible to step away. Although it's exhausting, and I hope that I get to a place where I'm like, "I don't see any other things that need work."

Dr. Vicky Alexa...:

Oh, wow.

Zea Malawa:

I hope I get there.

Al Letson:

That's activist physician Zea Malawa and Vicky Alexander. We recorded this interview before the pandemic. But their sense of outrage and optimism is still intact. Zea is now running a branch of San Francisco's emergency response, providing guidance to residents and businesses. Vicky's organizations, Healthy Black Families, has shifted to offering their classes and other services virtually.

A lead producer for this week's show is Priska Neely. [Jen Chien] edited the show. Thanks to Amy Mostafa for production and sound design help. Special thinks to Justin Alexander, Brianna Barker, and [inaudible]. Victoria Barenetsky is our general counsel. Our production manager is Mwende Hinojosa. Original score and sound design by the dynamic duo, Jay Breeze, Mr. Jim Briggs, and Fernando, my man, Arruda. They had help this week from Claire C. Mullen. Our theme music is by Camarado, Lightning. Support by Reveal is provided by the Reva and David Logan Foundation, the John D. and Catherine T. MacArthur Foundation, the Jonathan Logan Family Foundation, the Ford Foundation, the Heising-Simons Foundation, the Democracy Fund, and the Ethics and Excellence in Journalism Foundation.

Reveal is a co-production of the Center for Investigative Reporting and PRX. I'm Al Letson, and remember: the only way through this is together.

Narrator:

From PRX.