The field of gynecology has an ugly past, part of a deep rift between the community and healthcare providers. The 'father of modern gynecology,' James Marion Sims, conducted various surgeries, medical examinations, and experiments on Black slaves, often without anesthesia and without consent, or through coercion.
While many advances were made in the field of female health at this time, it was at the expense of these women, rooted in racist unfounded beliefs that black people experience less pain than white people.
"So all of that really heavy history leads into a kind of a cultural lack of trust of the medical institution, which is super understandable," said Dr. Lindsey Kathryn Buckingham, a healthcare provider with Novant, specializing in women’s health.
According to the CDC, “in 2020, the maternal mortality rate for non-Hispanic Black women was 55.3 deaths per 100,000 live births, 2.9 times the rate for non-Hispanic White women.”
And according to a recent study, more Black women presented with metastatic disease compared to white women, meaning Black women’s cancer was further along and diagnosed in later stages.
What's behind the inequity?
Healthcare professionals blame the diagnosis delay on the Black community’s well-earned and longstanding mistrust of the medical profession, and those unfounded but persistent beliefs about black women’s pain tolerances that lead to undermanaging pain, especially during birth.
Part of that issue, Buckingham said, is that conversations around women’s health are still culturally very taboo. Mothers are not having in depth conversations with their daughters about ovulation cycles, what a period really is, and practicing safe sex, leaving many children to learn about their bodies through sex-ed in schools.
However, those programs are being targeted and pushed back on.
“I grew up in North Carolina and I remember not having any sort of real sex ed until middle school… And I think in recent decades, with a lot of crackdown on any and all sex education — because of the idea that it gives a green light for young people to have sex and potentially become pregnant or contract sexually transmitted infections— we're actually doing a real disservice to our young people, because we're not giving them the tools or the information to understand their bodies," Buckingham said.
The issue has only been exacerbated by the contentious conversations behind vaccines. The HPV vaccine is one of the more touchy ones, according to Dr. Buckingham. Most vaccines require parental consent to be administered to minors, but many states, including North Carolina, have an exception to this rule when it comes to the HPV vaccine. Since it’s a vaccine to prevent STIs in men and women and cervical cancer in women, parents who believe in abstinence believe the vaccine encourages risky sexual behavior and may not agree to the vaccine being administered. But data shows this to be false, Buckingham said.
“I like to point people to the fact that we vaccinate babies at birth. You get your first Hepatitis B vaccine at birth, before you leave the hospital. That's a sexually transmitted infection. And nobody thinks twice about it, because it's an older vaccine, it got a lot different press," she said.
Access and affordability
Buckingham completed her OBGYN training in the northeast, and in comparison to the south with more rural areas, women were much better about keeping up with Pap smears, and cervical cancer was caught early on. Women in the south with little to no access to transportation would come in with cancer much further along, requiring more intense treatment.
"And my sense is that it has a lot to do with access, right? And so it starts with education and ends with with access, so you gotta learn about it, but then you have to be able to go get those those tests and get them, you know, either inexpensively or free, and be able to get to the place to get the test," she said.
Dr. Elizabeth Forte is a Transcultural Health Manager with Novant, and in her relatively new position, she is working to address these very issues with cultural beliefs and disparities.
“I'm really wanting to make sure that we are bringing equity to the team members and helping them understand what disparities are, how they might be contributing to them, helping them to understand where a patient may be coming from when they have a certain concern, because what we recognize is that everyone is coming from their own background," Forte said.
Her goal is to educate fellow healthcare workers how to deal with the vast variety of patients they will come into contact with. Something seemingly small she’s pushed for is having providers ask which language patients would prefer to communicate in. Language barriers pose a very difficult obstacle for many providers, as communicating sensitive information and care options can be quite literally lost in translation.
Burnout, demographics, and trust
2020 was not an easy year for healthcare providers. According to a study conducted by the CDC, 93% of health workers reported being stressed out and stretched too thin, and 69% of physicians reported experiencing depression and 13% had thoughts of suicide.
One of the most prominent cases was the suicide of Dr. Lorna M. Breen, who worked at a Manhattan hospital in New York that was hit hard during the pandemic.
Dr. Forte reaffirmed that trend.
“And I've just seen so much, especially since what 2020, with so much compassion fatigue, and people are just tired, we're burnt out. And in any sense when a person is feeling all those different things, it takes a toll on how they're communicating and treating other people," she said.
Another factor in addressing healthcare inequities is getting good demographic data.
Novant has pushed for mammogram equity throughout Southeastern North Carolina. Dr. Forte said a big part of her job is looking at data and breaking it down by demographics of race and ethnicity to fully understand trends and potential disparities. For example, data showed that Black women were doing a good job keeping up with their mammograms, and that it was the Asian and Hispanic populations that needed more encouragement and support to see a provider.
When providers ask for demographic information, they are not trying to push stereotypes or put people in boxes and reduce them to a label, Dr. Forte said. Not knowing, makes reading the data more difficult.
“Because otherwise people get labeled as unknown, or other and we know that there's no one who is unknown," she said.
There are a lot of competing concerns when it comes to addressing concerns about one’s health. And it starts with being able to trust your provider is on your side, and willing to listen, Dr. Forte said.
“Yes, we have these medical degrees and a lot of training and all that great education. And patients live in their bodies, they know their experiences, they know the world that they live in. And we need to be able to respect that and respect the things that they're sharing with us when they're coming because they don't have to share that information," she said.
And healthcare cost is not something Dr. Forte takes lightly, as she feels the effects of it too: “That's a tough one. Because I mean, even me, myself, I've been in that situation recently, where I'm sitting there counting the cost and go, 'oh, do I need to go?'”
However, no matter how difficult it may be to rationalize spending a large amount of money on treatment, Dr. Forte says it’s important to have an outsider loved one give a second opinion. Health is the most important, she says, while also acknowledging there are massive financial barriers present. That issue is not so easy to solve, Dr. Forte said, as it will require a massive overhaul of the healthcare system as a whole in the United States.
In the meantime, Forte said she and other healthcare professionals in the Novant system will continue to push for equitable treatment and intentional outreach to communities that are underserved and have lack of access to robust healthcare.
