While it shouldn't fall solely on Black women to fight for better care, there are important steps to take to advocate for yourself.
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The COVID-19 pandemic is holding up a magnifying glass to longstanding racial inequities in American health care.
Black, Latinx and Native American people have been hospitalized for COVID-19-related reasons at around five times the rate of white people, according to the Centers for Disease Control and Prevention (CDC). Black and Latinx people are nearly twice as likely to die from the viral infection as white people, per data provided by the agency to the New York Times.
There are many reasons for these disparities; among them, unequal access to COVID-19 testing. An analysis by FiveThirtyEight reveals that in many cities, COVID-19 testing sites in and near predominantly Black and Hispanic neighborhoods tend to serve a far greater number of patients, leading to longer wait times and less access for people who live in those communities.
Such inequities may have an outsized effect on Black women and their families. More than two-thirds of Black women are their families' primary breadwinners, compared with just over a third of white women, according to the Center for American Progress.
Yet whether she is a mother or not, a Black woman's ability to navigate a health care system that is stacked against her is crucial not only for her own wellbeing, but also for those around her.
'Unlike Me, Some People Didnt Make It'
Tamika Harden's experience as a Black woman trying to get tested for COVID-19 reflects how much responsibility the health care system unjustly places on patients. The 34-year-old fitness instructor first started experiencing symptoms of COVID-19 in mid-March. "I was just very tired and lethargic. Out of my norm," she tells LIVESTRONG.com.
Despite resting between sessions with personal training clients, her symptoms worsened, and several days later, "it felt like I had been hit by a truck," she says. "I could not get out of my bed." She had chills and lost her sense of taste and smell.
Harden's now-familiar collection of symptoms prompted her to call a government hotline. She responded to a series of questions and was told she would hear back within 48 hours.
It would take two weeks for the call to arrive. In the meantime, she learned that she had been exposed to someone who was hospitalized and had tested positive for COVID-19.
Harden lives in Brentwood, a predominantly Hispanic community in Long Island, New York, that was quickly becoming a COVID-19 "hotspot." By early April, it had the highest number of cases in its county and a testing site had opened in the community to address the growing need, according to ABC 7 New York.
But back in March when Harden was experiencing symptoms, Brentwood didn't have a testing site yet. The nearby community of Stony Brook, New York where the median income is 60 percent higher than Brentwood and its residents are predominantly Asian and white did. So Harden drove 15 miles to the testing site where the state had partnered with Stony Brook University.
At the time, Brentwood was averaging around 50 new COVID-19 cases each day, while Stony Brook was seeing between 3 and 10 new cases daily, according to the county's COVID-19 case tracker.
Without an appointment, Harden was told to call the same hotline as before, only to be put on hold for several hours. Instead of waiting longer, she asked the drive-up testing site staff if there was anything else she could do. She was told that a triage tent would be set up the next day for walk-ins and to come back then.
She did, with her boyfriend in tow, and both were tested, receiving positive results four days later. "By the time we both got the call back, I had already been sick approximately 10 days," she says.
COVID-19 testing and diagnosis were mishandled and problematic for many people early on in the pandemic, regardless of race. But add that to the existing health inequities facing people of color, and the outcome is catastrophic.
"Because of lack of medical supplies in predominantly minority-based communities, some people weren't able to get tested like me, and unlike my story, some of those people didn't make it," Harden says.
The Health Disparities Black Women Deal With Every Day
Harden is healthy now, and she attributes her speedy recovery to her dedication to fitness. Her age may also be a factor, since the CDC says that risk of serious COVID-19 symptoms increases in older adults.
Yet Black women, as a whole, fare worse with COVID-19 than their white counterparts. This has largely been attributed to a greater prevalence of underlying conditions such as heart disease, diabetes and obesity that the agency says puts them at higher risk for complications.
Black women are 70 percent more likely to have diabetes, 60 percent more likely to have high blood pressure and 50 percent more likely to have obesity than white women in the U.S., according to the Department of Health and Human Services' Office of Minority Health (OMH).
Even before COVID-19, such health disparities amounted to shorter lifespans among Black women 2.7 years shorter than American white women, who have a life expectancy of 81.2 years, according to the CDC.
Black women are also three times as likely to die from a pregnancy-related cause than white women a disparity that actually grows to five times as likely when you compare Black and white women with a college degree, according to the CDC.
The reasons why Black women are more likely to have diabetes and other underlying conditions have nothing to do with biology and everything to do with society: Racial inequities and discrimination in education, housing and access to health care, among other factors, can lead to chronic stress and illness, per the CDC.
Why Black Women Face Inequities in Health Care Treatment
Health Care Is Unaffordable
Black women are less likely to be able to afford health care in the first place. In 2018, 14.4 percent of Black adults 19 to 64 were without insurance, versus 8.6 percent of white adults in the U.S., according to a January 2020 Commonwealth Fund report.
"As much as we try and keep clinicians in high esteem, they mirror our community. There is still a lot of inherent racism and bias," says Nanette Thomas, MD, medical director of ambulatory care at Brookdale Hospital Medical Center in Brooklyn, New York.
Dr. Thomas remembers a time just a few decades ago when those biases were often expressed explicitly.
"I trained in Boston and I remember as a medical student hearing the residents and the attendings talk disparagingly about certain types of patients; for instance, Hispanics being considered histrionic and hysterical," she says. (She doesn't recall hearing comments aimed at Black people, which she believes is potentially because she is Black and others were hesitant to share those views in her presence.)
Yet bias doesn't have to be expressed out loud or even consciously acknowledged to affect how a health care provider might treat a patient. People of color receive lower quality care than white people on many measures tracked by the federal Agency for Healthcare Research and Quality (AHRQ), such as treatment effectiveness and patient safety, according to a 2018 report.
Implicit bias attitudes or stereotypes that affect a person's understanding, actions and decisions in an unconscious manner contributes to such health disparities, per the American Academy of Family Physicians.
"Let's face it, Black people do not trust the system. They don't trust doctors."
For instance, false beliefs about biological differences between Black and white people may be widespread among health care providers.
In an April 2016 study in the Proceedings of the National Academy of Sciences, half of medical students and residents surveyed were found to hold beliefs such as "Black people have thicker skins." When presented with mock cases, the study participants rated Black patients' pain lower than that of white patients' and made less accurate treatment recommendations.
And in a June 2019 review of pain treatment studies in the American Journal of Emergency Medicine, Black patients were 40 percent less likely to receive treatment in emergency departments for acute pain than their white counterparts, and Hispanic patients were 25 percent less likely.
Even algorithms that analyze scheduling can have racially biased outcomes. Formulas designed to identify patients who are more likely to be "no-shows" led Black patients to be overbooked more often than white patients, according to preliminary, unpublished October 2019 data from researchers at Santa Clarita University.
That in turn leads to longer wait times and results in more negative patient experiences, according to the researchers.
The System Breeds Fear and Mistrust
Black women's past experiences with the health care system can also become barriers to getting good care, says Ketly Michel, MD, an ob-gyn at Lenox Hill Hospital in New York City.
"Certain women don't have any faith in the system. Once you tell them, for example, that their blood pressure is elevated, they're thinking about their mother or grandmother who died of a stroke with high blood pressure, and they think that they are going to die."
Mistrust is another obstacle, adds Dr. Michel, who is Black. "Let's face it, Black people do not trust the system. They don't trust doctors."
This lack of trust has historical grounding: In the infamous Tuskegee experiment, the U.S. Public Health Service studied Black men with syphilis between 1932 and 1972 without telling them they had it or offering treatment. Many died from syphilis-related causes as researchers watched the natural progression of the disease.
National disclosure of the study in 1972 led to such widespread mistrust of doctors in the Black community that it measurably decreased physician interactions for older Black men, according to a June 2016 paper from the National Bureau of Economic Research. As a result, Black men's life expectancy at age 45 had dropped by 1.5 years by 1980.
Meanwhile, discrimination in the world at large may affect how some Black people approach health care settings. The more a pregnant Black woman perceives that she is subject to racial microaggressions in her daily life, the more likely she is to delay prenatal care, according to a July 2019 study in the American Journal of Preventative Medicine.
Specifically, the researchers found this effect in women who reported having light or dark brown complexions, though they did not find this effect in women with medium brown skin tones. The study authors speculated that may be due to a mix of perceived attitudes toward skin complexion, both within and outside of the Black community.
How to Confront Bias and Advocate for Yourself
Write down a list of questions before meeting with a health care provider and take notes on the answers during your appointment.
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It too often falls on Black women to push to get equal treatment by health care systems, as Harden's story illustrates. There is work to be done on both the structural and individual levels by all people to make health care more equitable. But as that work is being done, experts say there are effective ways Black women can advocate for themselves and their loved ones.
For many patients, Dr. Thomas says, "being in the medical arena is very confusing. You're hearing terminology that you are not familiar with." The result can be information overload. "Oftentimes when you are hearing what the provider is saying, you're not really hearing it. It goes over your head because there's just so much to take in."
She suggests doing a little research about your symptoms or any medical questions you have before you set foot into your provider's office. "Google as much as you can, because information is power. And then you can go in and ask questions to advocate for yourself."
Because some sources are more credible than others, Dr. Thomas recommends that you look for information that has been published in respected medical journals or by the National Academies of Medicine. More consumer-friendly sources include the U.S. National Library of Medicine's MedlinePlus database and the CDC's website.
Don't be shy about speaking up when you don't understand something or want to know more. If you're not sure what to ask, Dr. Michel suggests starting with: "Is there anything that you would want me to ask that I am not asking?"
She also recommends asking: "Do you feel comfortable treating my case? If not, should I be referred to a specialist?"
Find out what hospital your provider is affiliated with as well, she says, and make sure it's one you're comfortable with, in case you should ever have to be admitted.
Be Prepared to Provide Honest Answers
At the beginning of your visit, your health care provider will likely ask you a series of questions about your symptoms, family medical history, lifestyle habits, what medications you are taking and other information to help determine what tests or treatment you might need.
This is where it's important to take a leap of faith, even if you're feeling mistrustful.
"You should tell me everything that is pertinent to your history so that I can come up with a diagnosis. You cannot hide things," Dr. Michel says. "Sometimes patients withhold the history, thinking it isn't relevant. Well, every piece of information is relevant."
Make Sure You're Comfortable With Your Provider
If you find yourself questioning whether or not your doctor is truly delivering the best available care, call it out.
In an April 2019 viral tweet, Yamani Hernandez, executive director of the National Network of Abortion Funds, thanked "#BlackWomenTwitter" for teaching her to ask a doctor to document any refusal to provide treatment or medication that she asks for.
However, Dr. Thomas recommends that you never feel wedded to using a particular doctor if you have concerns of any kind. "When you are feeling uncomfortable with a visit with a medical provider, do your own research about what the issue is, get information from friends about other providers and then get a second opinion."
Also pay close attention to the type of person giving you care, Dr. Michel says. "If you feel that you have a lot of issues, then you should not be seeing a nurse practitioner or physician's assistant. You should demand that you see a doctor."
If you prefer to be treated by a Black medical provider and don't know one, she suggests checking with the National Medical Association, which has a provider database run by BlackDoctor.org. Other organizations with databases of Black health care providers include the Association of Black Psychologists and the Skin of Color Society.
Even if you've found a provider you're happy to work with, health care settings can be intimidating.
"If you are feeling uncomfortable and you become overwhelmed with information, bring a friend or someone who you trust who can ask and advocate on your behalf," Dr. Thomas says.
Share the questions you have with that person and let them take notes for you.
Walk out of the office with a pamphlet in your hand containing information about the condition in question, Dr. Thomas says or at least with more information than you came in knowing.
Your questions may not end with the conclusion of your visit. Take notes during your visit and jot down any follow-up questions that occur to you afterward. You can always call your health care provider's office afterward with the additional queries or send a message through your online patient portal, if your doctor has one.
From there you will find out if you need to make an additional appointment or will receive an answer in the form of a call, electronic correspondence or documentation in the mail.
Learn more about the questions you should ask before, during and after a doctor visit through the AHRQ.
Harden wants other Black women to know that when they advocate for themselves, others benefit. "If they feel as if they are not receiving adequate health care or the right answers, it can't stop there. Their health and the health of their loved ones counts on them seeking the help that they need."
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How Our Health Care System Fails Black Women, and What You Can Do to Be a More Empowered Patient - LIVESTRONG.COM