(NEW YORK) — Heide Spence, a mother of two, said she does not remember a time in her life since getting her first menstrual cycle at age 10 when she did not suffer from painful period complications.
“I wouldn’t have a period for months at a time and then I would get one and it would look like a crime scene because it was so much blood,” Spence, now 40, told ABC News’ Good Morning America. “I would travel to work with a change of clothes because I would go from home to work 15 minutes away and would have bled through an overnight pad.”
Spence, of New Jersey, said she was told by doctors over the years that her symptoms were nothing to worry about, or that one heavy period was just the result of her not having a period the months before.
Being a young, single mom on Medicaid at the time only made things harder, according to Spence.
“Taking care of my health was at the bottom of my priority list because at some jobs I worked at I didn’t have PTO [paid time off],” she said. “If I didn’t work, I wouldn’t get paid. I couldn’t afford to miss a week of work for an ablation surgery or procedure.”
Five years ago, in 2017, Spence said she reached a breaking point.
“I had bled for a month. I was exhausted and I went to a new doctor,” she said. “I told her, ‘I can’t keep doing this. I don’t have the energy to go to work. I can’t be an effective mother to my kids. I can’t afford to take time off work.'”
The doctor performed a biopsy on Spence, which detected endometrial cancer, a common type of uterine cancer.
“She was like, ‘I need to get you into surgery as soon as possible,'” Spence recalled the doctor saying. “That was just crazy for me, and very life-changing. I don’t know what could have happened if I had not had that wit’s end moment.”
Though endometrial cancer is slightly more common in white women, Black women have a 90% higher mortality rate with the disease, due in part to the advanced stage at which they often receive a diagnosis, according to a 2020 study published in JAMA Network Open.
It’s a similar story for cervical cancer and breast cancer too. A study released in January that looked at women in Georgia found Black women are more likely than white women to be diagnosed at a later stage of cervical cancer and are nearly one-and-a-half times more likely to die of the disease.
With breast cancer, Black women are younger at diagnosis and are more likely to be diagnosed with aggressive or advanced forms of breast cancer, compared to white women. Among all racial and ethnic groups, Black women are more likely to die from breast cancer, according to the National Cancer Institute.
Among other health disparities, Black women have the highest rate of obesity compared to other groups, according to the Department of Health and Human Services Office of Minority Health, and nearly 50% of Black women ages 20 and older have heart disease, according to the American Heart Association.
When giving birth, Black women are three times more likely to die from a pregnancy-related cause than white women, according to the Centers for Disease Control and Prevention.
Following her cancer diagnosis, at age 36, Spence underwent a hysterectomy, which she said she felt like was her only option.
The experience, she said, changed how she approaches her health.
“I definitely prioritize my health more,” said Spence. “I definitely seek out help and I tend to ask to see a minority doctor now.”
A problem with a long history
From the early days of slavery onto segregation, the data threads a line to current poor health outcomes among Black women.
One study released in 2017 found that among women who currently had breast cancer, Black women who were born in a state with Jim Crow laws at the time faced a higher risk of being diagnosed with more severe breast cancer tumors.
The mistrust of the medical community among Black people traces all the way back to examples like Henrietta Lacks, an African-American woman whose cells were collected from her body and used for medical research without her consent in 1951. Decades earlier, in the 1930s, 600 Black men were unknowingly recruited into U.S. Public Health study on syphilis at the Tuskegee Institute, which continued for 40 years.
More recently, a study of over 500 medical students and residents found that half held at least one false belief about biological differences between Black and white patients, like the myth that Black patients have a higher pain tolerance, according to the study, published in the Proceedings of the National Academy of Sciences of the United States of America.
According to Dr. Brooke Cunningham, a general internist, sociologist and an assistant professor in the University of Minnesota Department of Family Medicine and Community Health, Black women face long-stemming social obstacles that negatively affect their health, like often being heads of household and primary caregivers, being more likely to be uninsured, facing financial strain due to the gender pay gap and being more likely to live in places with unequal access to healthy food, safe housing and adequate medical care.
“For Black women in particular, the root cause of racial health disparities lie in structures, particularly structures of racism,” said Cunningham. “The particular social location of Black women … adds to stressors and reduces resources and opportunities to improve health.”
Both the CDC and the American Medical Association (AMA) have identified racism as a public health issue.
“Racism impacts every pillar in the driving course of social determinants of health,” said Dr. Jessica Shepherd, a board-certified OBGYN and chief medical officer of Verywell Health, a website that provides health and wellness information. “That can create a barrier to health equity, how patients have access, how they have resources and also the choices that they’re given as far as the management of their symptoms or being heard. That’s the fundamental issue.”
Though Black women have faced health disparities for decades, the alarming statistics around maternal mortality have put a new spotlight on the issue. Another source of renewed attention in recent years has been the broader conversation on race in the U.S., according to Dr. Kemi Doll, a gynecologic oncologist at the University of Washington, who is investigating causes of disparities in gynecological cancers among Black women.
“People are saying, ‘If I could have been so off about how I thought race might manifest in policing, or how race could influence these things, how else might I have missed or been off about how race is influencing my research or my clinical care?,'” said Doll. “That drove a lot of interest in let’s start over. Let’s think about things differently.”
Doll was at the forefront of change in 2016, when she co-authored a research paper looking at the disparities Black women faced specifically in reproductive health. Up until that point, there had been little research on why Black women faced worse health outcomes, according to Doll.
“The narrative was basically: There’s something wrong with Black women’s bodies. There was just so little investigation into why,” said Doll, founder of the Endometrial Cancer Action Network for African-Americans (ECANA). “There is not an inherited reason why Black women have more aggressive endometrial cancer.”
She continued, “In 2022, we’re just starting to ask the question: So then what would be the other things that would drive this more aggressive disease and why would Black women be more exposed to those things?”
While experts like Doll propel research on Black women’s health, others are working to re-educate medical providers.
According to the AAMC, a “growing number” of medical schools are working to add anti-racism education into their curriculum.
In one example, the Icahn School of Medicine at Mount Sinai in New York City last year enrolled 11 partner medical schools in its Anti-Racist Transformation (ART) in Medical Education initiative, a three-year project to “dismantle racism in medical education.”
Cunningham, who lectures on race to first-year medical students at the University of Minnesota, said one thing health care providers can easily learn is to listen to Black women.
“I really feel like Black women are telling providers and telling health care systems about what is going wrong or what can be done better and we have to have the humility to get really curious about that,” said Cunningham. “A big part of the answer has to be partnering with Black women and listening to Black women.”
Black women find solutions to chip away at a long-standing problem
For Eddwina Bright and Ashlee Wisdom, their personal experiences of going to doctors’ offices as Black women led them to launch their company, Health In Her HUE, a digital platform that connects Black women to culturally sensitive health care providers, health content and community.
Wisdom, 31, said that as a kid, she watched her mom make conscious choices around medical care, like seeking doctor recommendations from family and friends, choosing doctors in private practices and traveling to a hospital in a predominantly white suburb of New York City versus going to a local hospital in the Bronx, where the family lived.
As an adult, Wisdom said started experiencing hives while working in a stressful job where she said she dealt with racism and microaggressions. Once she left the jobs, the hives went away.
Wisdom said she was evaluated by a doctor at the time, but said because of her own preconceptions, she did not talk with her doctor about the stress she was experiencing in her job.
“I remember thinking that if I felt like my doctor, as a white woman, would understand the experience of dealing with racism at work and microaggressions, then I might have naturally shared with her that was going on going on at work,” said Wisdom.
Wisdom said it is those kind of instances that, in her experience, make going to a doctor’s office a different experience for Black women, adding that she believes, “There are all these assumptions that are made about you when you step into a doctor’s office as a Black woman that I don’t think white women necessarily have to experience.”
“Black women have shared with me that they sometimes wear college paraphernalia or they talk really proper with their doctor so their doctor will see their humanity and take them seriously,” Wisdom continued. “Some show they have commercial health insurance because they want to make sure that the doctor doesn’t assume that they don’t have access to quality care.”
Bright, 35, said to this day, if she is seeing a new doctor, she personally goes in with the expectation that she will be “treated poorly.”
“The way that I have combated that has been by intensely preparing for a doctor’s visit, doing things like researching the condition that I may be facing, the medication, the generic name for it, the cost of it, and that’s such a high bar as a patient to set for myself, just to ensure that I’m getting quality care,” said Bright. “It leads to a lot of stress and it leads to me feeling dismissed.”
Bright said that as a child, she watched her mom, who has chronic asthma, navigate the health care system.
“I’ve seen her carted off in an ambulance, fighting for her life and struggling to talk and advocate for herself,” said Bright. “One of the key things she taught me was if you’re in pain … you have to really, really articulate your symptoms, say that your pain is a 10 and make them take you seriously because, otherwise, a lot of bias comes into your experience.”
Even with that guidance, Bright said she suffered a “traumatic” birth experience with her first child, noting, “Even in trying to ask questions and seek out information, I was repeatedly marginalized and told, ‘You don’t need to know that. You don’t need to worry about that.'”
With the birth of her second child, Bright said she worked with a different OBGYN and used a doula before and during the delivery, resulting in what she described as a much smoother experience.
Both Bright and Wisdom say that through Health In Her HUE, they are not calling for Black women to only see Black doctors. They say they want to provide a health-focused community with culturally-resonant resources for Black women.
“Women have shared with us that through engaging with our content, they’ve been more intentional about seeking out preventative care services, making time for their appointments because they’re engaging with the health information that we designed specifically for them, centering their experiences,” said Wisdom. “We’ve had doctors share with us that patients drove three hours to see them after finding them on Health In Her HUE.”
Added Bright, “The demand that we’ve been seeing so far has been really reassuring. Users are saying, ‘This is a solution that we want. It’s something we’ve been looking for.'”
Adrienne Hibbert, a 36-year-old marketing professional in Fort Lauderdale, Florida, said she felt completely dismissed when she gave birth to her first son 16 years ago, at age 20.
“I almost gave birth to my son in the hallway of the hospital,” said Hibbert, who recalled being struck by the fact that she saw no photos of Black women or Black children included in the hospital’s hallways. “I was 20 years old and I was terrified. I didn’t know what to expect, but I knew what was happening shouldn’t be happening.”
Based on her personal experience, Hibbert went on to launch Black Doctors of South Florida, a website that has grown into a database of over 1,500 Black doctors.
“One woman said she was willing to travel up to 100 miles for a Black female OBGYN,” said Hibbert. “A lot of women will say, ‘I do not mind traveling because I just feel safer.’”
In California, two doctors, Drs. Monique Smith and Joy Cooper, founded Culture Care, a platform that connects Black women with trusted physicians, after Smith suffered a scary birth experience and relied on Cooper, also a doula, for help.
“I always tell people that the health care system was not designed [with] Black women in mind,” Cooper, an OBGYN, told GMA last year. “J. Marion Sims, who’s considered the father of gynecology, actually performed surgeries on slaves with their master’s consent, without anesthesia.”
How Black women can be their own best advocates
While progress is being made, more changes to make health care more equitable across races and gender will take time.
In the meantime, it’s important for Black women to be advocates for their own health, according to both Bright and Wisdom.
Here are four tips from Health In Her HUE.
1. “Advocate that any notes or any conversations you have with your doctor are documented in your chart. If there is something that you don’t agree with, or something that you think is really important, or if you are asking for a second opinion, make sure that is recorded in your chart.”
2. “Track your own data because when you’re having conversations with providers, the information that you have on yourself will help equip you to manage those conversations, things like your weight, your temperature, your blood pressure.”
3. “Trust your body and trust your instincts. If you’re being prescribed new medication or you’re being prescribed a new medical regimen, ask questions like, ‘What side effects may this cause? What kind of effect will it have on me?'”
“Definitely lean into what you know about your body and your health, and then use that as a tool to advocate for yourself and get the care that you need.”
4. “Know your family medical history so you’re in a better position to seek out preventive care screenings you may need because of your family history.”
“Also, seek out information even before you feel like something’s happening. Know what preventive care services you should be seeking out based on the stage of life that you’re in. That’s a key thing that we can do to stay on top of our health.”
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