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Same doctors, different health care: Black women tell of health care disparities in Delaware

Shamiya Gould knew she needed to see a doctor.

Her acid reflux had gotten so bad that she struggled to swallow at times, and the procedure in early July was considered routine.

But when she woke up at the hospital, dazed and confused from the anesthesia, all she remembers was the belittling surgeon insulting her intelligence and loudly proclaiming to everyone in the hallway that Gould needed to eat less and lose weight. 

"It was almost like anything that I said he just disregarded,” said the mother of three who burst into tears when talking about the doctor's treatment.

Gould said she tried asking questions about the condition that had plagued her since the birth of her daughter nine years ago. She wanted to understand what was going on, but Gould said the doctor did not give her the time of day.

“I felt like nothing I said was validated," she said. "He made me feel stupid.”

Shamiya Gould (far left) and her family pose for a portrait their Wilmington home on Tuesday, Sept. 1, 2020.
Shamiya Gould (far left) and her family pose for a portrait their Wilmington home on Tuesday, Sept. 1, 2020.
Jenna Miller/Delaware News Journal

Tell this story to other Black woman and it isn’t new or shocking. Across the state of Delaware and around the country, people who look like Gould have a tumultuous relationship with health care providers who are supposed to be helping them live their healthiest lives. 

While there is no specific data on the number of complaints made by Black women, the stories poured in when Delaware Online/The News Journal asked Black women across the state about their own experiences at the doctor’s office. 

And it’s not just affecting poor women or those who think they don’t have power or influence.

Shamiya Gould
I felt like nothing I said was validated. He made me feel stupid.

In 2018, Serena Williams detailed how she almost died giving birth to her daughter after suffering a slew of health complications. She described how she knew if she didn’t have the money to pay for the medical team she had, she may be like thousands of other Black women who die every year from childbirth at rates 2.5 times that of white women. 

The same trend of disparities in health care is seen here within the First State, as well. 

BLACK BIRTH STORIES: Serena Williams reveals she 'almost died' giving birth

Take the experience of Dr. Kara Odom Walker, former secretary of the Delaware Department of Health and Social Services and a Black practicing family physician. She said she, too, has experienced this racism in health care. 

“If me as a physician, as a Black woman who's in a leadership role has these health experiences, what's the non-health care person with training and research training going to do when they're faced with an encounter with somebody who's in a position in power trying to make a clinical diagnostic decision?” Walker said. “I think there's no chance that people will have a fair shot at what they're supposed to have.”

This national conversation about Black women's health care has reached prominence in the last few years, but again surged to the forefront in recent months as a nationwide reckoning with racism crystalized.

Delaware Online/The News Journal spoke with seven Black women around the state who have faced these issues, as well as experts and health care professionals trying to empower women – and all people – when at the doctor’s office. 

The stories don't appear unique. Women described being misdiagnosed or given painkillers instead of addressing underlying issues. One woman lost her child traumatically. Another had to experiment and eventually diagnose herself because her doctor was no help.

All of them say they are now more wary when they go to the doctor, hoping that history and decades of racism in health care won't repeat themselves. 

Come prepared: How to advocate for yourself at the doctor's office

'Dramatic differences' in care

For Gould, the issue is particularly personal. 

Gould works as a lactation consultant at Nemours Children’s Health System, focused primarily on assisting minority women in Wilmington. And through this job, she's heard from other Black women that health care providers would sometimes treat them this way.

In the past, she had tried to defend the doctors nearby. Maybe the women didn't understand what the doctors were saying or misinterpreted their actions. 

But then it happened to her. And as much as she tried to get over it, it stuck with the 33-year-old.

Gould remembers sitting in the hospital earlier this year in just a gown, exposed and alone, wondering why someone would treat her this way following her acid reflux procedure. 

Gould immediately called patient relations, which she said didn’t help.

Again, she was told maybe she didn’t understand what the doctor meant. Other excuses were made. Gould said the representative she spoke with even insinuated that if she didn’t see this doctor, there was a chance other doctors wouldn’t see her because she made a fuss. 

“Why would you even say that to somebody? Like it's my fault that I was treated this way,” she said through tears as she recounted the incident. 

Gould has not gone back to the doctor’s office since then. Her issue was never resolved, but the trauma was so much that she didn’t want to return. She’s still working through it with a therapist. 

These experiences are not just having an impact on whether or not Black women feel safe in the health care system, experts say. 

“We know that stress related to racism does create biochemical change," Walker said. "It increases cortisol levels. It increases stress levels. It actually increases the multiple episodes of feeling this way, create kind of a chronic stress reaction and has been linked to chronic conditions."

She pointed to issues like cancer and mental health. But it’s not just a woman's own health that's affected. 

Throughout the state, Black babies are also dying at rates far greater than white and Hispanic infants. According to the Centers for Disease Control and Prevention, Black babies in the United States are 2.3 times more likely to die than white babies.

Dr. Karyl Rattay
Differences in community conditions and resources still lead to dramatic differences in health.

Here in Delaware, this rate is even higher, where Black babies are 2.5 times more likely to die than white babies, according to the Health Equity Guide for Public Health Practitioners and Partners released by the Delaware Division of Public Health in November 2019. 

“We can talk about all the barriers to getting good care, but there's also something once you look at two people who are of different races that have everything else the same – same insurance, same socioeconomic background, same educational level," Walker said. "There is still something different about a health encounter that creates difference." 

On average, life expectancy for Black people in Delaware is three years less than their white counterparts, according to the state Department of Health and Social Services.

In some Wilmington neighborhoods, life expectancy varies by as much as 16 years, according to Dr. Karyl Rattay, director of the state Division of Public Health. 

“Differences in community conditions and resources still lead to dramatic differences in health," she said in the 2019 Health Equity Guide.

Inside the doctor’s office

Nearly everyone has found themselves in a doctor’s office, but for Black women, that experience often triggers frustration and concern. Delaware Online/The News Journal spoke with seven women across Delaware about their experiences with health care and what they want to see change. Read their stories here.

An unwanted exam, a lasting impression

The issue of health disparities as it relates to women is not new. In fact, it's an issue that has been discussed for decades. 

For certified nurse midwife and family nurse practitioner Michelle Drew, that disparity – and one specific and deeply personal incident – is what drew her to medicine.  

A Wilmington native, Drew remembers growing up in the city in a very religious home. At 16, she was not going out or having sex, she said – she was the type of person that did her chores on time and went to church every weekend. 

So about three months after her 16th birthday, when her stomach hurt so badly she didn’t want to go to church, her mother knew something was wrong and took her to the hospital. 

“Everything that went into my mouth was coming back out one end or another,” she remembered. 

It was there that the doctors asked her if she was pregnant. Even though Drew told them there was no way she could be, she remembers the physician in training saying “Yeah, right.”

Drew then described how even when she said no, she was held down and had a metal speculum forced inside her. The physician then proceeded to perform an internal vaginal exam with his hands to see if she had an ectopic pregnancy. 

“That stayed with me for a long time,” she said.

About a week later, Drew found out her pain was caused by her appendix rupturing. She eventually had surgery at another hospital to correct the rupture. 

Years later, the experience still affects her actions. Even now, if a doctor makes her feel uncomfortable in any way, she speaks up swiftly and repeatedly. 

“When I said that I couldn't be pregnant, it wasn't believed,” she said. “It kind of carried me forward even to when I did eventually start a family.”

It was also one of the reasons Drew went into working with Black mothers as a doula and midwife. She now helps deliver babies safely and also cares for mothers before and after their babies are born so they don’t have to experience what she felt. 

Drew said she not only hears about the health disparities being faced by Black women, she sees it around her from other health care workers. 

Dr. Walker has also heard these stories when working with Black and brown women. 

“People perceive the symptom of headache or bleeding or pain differently when a Black woman reports it versus when a white woman reports and that shouldn’t happen in this day and age," Walker said. "Unfortunately, we know all too well that it does." 

Drew said this isn’t just because some doctors have internal biases – some of them are taught. 

“One of the things that has been taught and like really goes back to slavery and goes back to Marion Sims – one of the people who invented the speculum – is that Black women, or Black people, don't perceive pain as strongly as a white woman does, so we have higher pain tolerance,” she said, noting that this false claim is believed by some. 

Sims was a doctor in the late 1800s who experimented on Black enslaved women – in many cases without anesthesia – because he thought they couldn’t feel pain. 

FACT CHECK: Father of modern gynecology performed experiments on enslaved Black women

Drew also cited a 2016 study led by Kelly Hoffman at the University of Virginia that found racial biases in pain management. 

The study asked a group of medical students and residents to rate the pain of two mock patients – one Black and one white – for various conditions, as well as answer true-false questions about racial stereotypes, including whether Black people’s skin was thicker than white people's. 

Of the 200-plus participants of the study, half of them believed at least one of the false claims. That group was also more likely to select lower pain ratings for Black patients and had less accurate treatment suggestions for those Black patients than the white medical students who did not believe any of the racial biases. 

How to be your best advocate

Speaking up about your concerns at the doctor’s office can be difficult, especially when going there to seek help and guidance. We spoke to doctors and experts who offered tips about how to make your voice heard, even when it feels challenging. Read more about what they suggest and hear from women who have tried their advice.

Unrecoverable loss 

When Jonda Brown was 17 and pregnant in the early 1990s, she was excited. Her family was supportive and the baby’s father was jazzed. 

But the Friday before she was due to deliver, she went to Northeast Clinic in Wilmington for one more ultrasound. For about an hour, the nurse tried to find the baby’s heartbeat. 

Jonda Brown poses for a portrait outside her Wilmington home on Tuesday, Sept. 8, 2020.
Jonda Brown poses for a portrait outside her Wilmington home on Tuesday, Sept. 8, 2020.
Jenna Miller/Delaware News Journal

“She was like, ‘It is Friday and we can just make another appointment,’” Brown said.

But they stayed, as Brown wanted the nurse to do whatever was needed to find the heartbeat. 

Eventually, the nurse said she had found the heartbeat and sent Brown home. At this point in her pregnancy, Brown had been to many ultrasounds and heard her baby's heartbeat numerous times. Though she didn’t hear it on that particular Friday, she trusted that the nurse had because she thought the nurse knew best. 

“I never heard, but you're the nurse, you're the doctor,” she recalled thinking at the time. 

Still, it stuck with her.

On May 20, 1990, Brown went into labor and drove to the hospital. It was her due date, so she wasn't nervous. Her family, as well as her baby’s father and his family, were there with her. 

But as the doctors started to come in and surround her, events took a turn. 

As Brown sat on the bed, waiting to deliver her baby boy, the doctors gave some devastating news to the first-time pregnant woman: They couldn’t find the baby’s heartbeat and she was going to have to deliver the stillborn child. 

With tears in everyone’s eyes, she brought her son, Jahem Kevin Brown, into the world. He was 7 pounds and 19 inches, she said.  

After he was cleaned up, Brown said she never saw her son again. The doctors didn't come back to tell her where he was taken or offer to let the family bury him, she said. 

“I cried and I cried. And me and the father, the grandparents of the child," Brown said, "we were just sad."

Her mother told her not to fight for answers, as the family was poor and on welfare. They didn’t want to further ruffle any feathers, so they buried the memory deep, she said. 

Brown doesn’t talk about it much. Even now, as a mother of five children – four boys and one girl – the pain of that day is something she doesn’t bring up often. 

Because of her son's death, she was deemed a high-risk pregnancy the following year when she got pregnant again. This time around, she said she went in much more prepared. 

And while she didn’t get to raise Jahem, Brown made sure she not only took better care of herself with the next pregnancy, but also demanded better care from the doctor. 

Dr. Kara Odom Walker
That leads to greater trust, greater empathy, feeling like you've been listened to and a greater connection.

A caregiver at Comfort Keepers, an in-home senior living organization, she knows what happened was wrong and wants doctors to try harder when it comes to their patients. 

Namandjé Bumpus is a professor and chair of the department of pharmacology at The Johns Hopkins University School of Medicine.
Namandjé Bumpus is a professor and chair of the department of pharmacology at The Johns Hopkins University School of Medicine.
Courtesy of Namandjé Bumpus.

Rushing to get patients out of the office is one of Brown’s biggest issues with the state’s health care system. Even now, with a doctor she has been seeing for 20 years, she still faces this issue and believes this is one way for health disparities to be resolved. 

“Why am I sitting in his office for 30 minutes then when you come here, you only do me 10 minutes,” she said.

But better bedside manner is not the only way to help eliminate health disparities.

Namandjé Bumpus, a professor and chair of the department of pharmacology at The Johns Hopkins University School of Medicine, said the program has "increasingly embedded the idea of disparities" into lectures and materials provided to medical students.

In charge of teaching students how they think about drug production and usage, Bumpus said a chunk of the teaching is focused on both racial and gender disparities so drugs down the line can more successfully help people of all backgrounds. 

“The scientists are the ones that are researching the diseases and how they're affecting (people) and coming up with new therapies, so it's important for them to get this exposure too,” she said.

Another way is to get more Black and brown people into clinical trials to more accurately see and assess their health issues, she said.

And yet another is to get more diverse scientists – people who look like those they serve – to help develop these drugs and therapies. 

Similarly, Walker said there are multiple studies that have shown that when people have doctors who look like them, it makes patients more comfortable. 

"That leads to greater trust, greater empathy, feeling like you've been listened to and a greater connection," she said, "and then similarly created this causal linkage to not only those measurable items but also whether or not they have better health outcomes." 

Contact Marina Affo at maffo@delawareonline.com. Follow her on Twitter at @marina_affo.