Providing Answers, Support and Hope in the Northeast

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Racial and Ethnic Bias in Health Care

Race and ethnicity play an important role in health outcomes, and that became much more apparent in the midst of the COVID-19 pandemic. According to the Centers for Disease Control and Prevention (CDC), Black Americans, Hispanics and Latinos, and Native Americans were among the groups with the highest rates of hospitalizations and death due to the virus.

Systemic racism in all of its forms is at the heart of this disturbing reality. Communities of color struggle with a number of socioeconomic factors that contribute to poorer health outcomes, including on-average lower incomes and rates of health insurance coverage which can affect access to the health care system. But communities of color also face bias within the health care system and can receive lower quality of care as a result. Research shows that Black Americans are more likely to receive lower quality care for health services such as cancer and H.I.V. treatment, prenatal care, and preventative care. They are also less likely to receive cardiovascular disease treatment.¹ Research also shows that this lower quality of care is common even when the insurance status, income, age, and severity of the health issue is comparable to white patients.²

For people navigating a chronic illness, this can be a damaging reality of their day-to-day interaction with the health care system. People living with lupus, which disproportionately impacts women of color, may experience both a lack of care and lesser care that negatively affects their health outcomes and heightens the severity of their lupus symptoms.

Systemic racism and implicit bias within the health care system is an issue that ultimately must be solved from within -- it is not the job of patients of color to correct a wrong they did not create. Still, learning how to be your own advocate in these spaces can empower you to seek the best care possible and potentially save both the quality of your life and your life itself.

Below are some of the ways implicit bias (which refers to the stereotypes or attitudes we hold about other groups that affect our understanding, actions, and decisions toward those groups in an unconscious manner) and systemic racism may show up in your interactions with the health care system and how you can combat it.

If You’re Struggling to Pay For Health Care:

For most people in America, particularly those with chronic health conditions like lupus, health insurance is necessary in order to ensure they are able to pay for both primary and specialized care. Many Americans receive their health insurance through their job, but Black Americans and other people of color experience higher levels of unemployment or employment at jobs that do not include health care within their benefit packages than white Americans.³ This crisis has heightened during the COVID-19 pandemic that has left millions of Americans unemployed, many of whom relied on their jobs for insurance for both themselves and their families.

If you are struggling to get care because you do not have insurance, there are organizations that can help you access low-cost or free medical care. There are also organizations that can provide housing, transportation, and financial planning assistance for those living with lupus. If you’re struggling to pay for your prescriptions, there are organizations that can offer assistance. For caregivers, here is some guidance on how to manage your loved ones' finances and information on how you can receive financial assistance if your child has lupus.

If you are experiencing a medical emergency, the Emergency Medical Treatment and Active Labor Act states that you must be treated with emergency services if you ask for them from a hospital regardless of your insurance status.

If You Are Struggling With Language Barriers:

For many patients, English is not their first language and that often makes access to effective health care more difficult. Language barriers should not prevent you from receiving the best care possible, and you have a legal right to an interpreter. Your health care providers should be willing to accommodate you as best they can. Ask your health care provider if there is someone in their office who can translate for you or if they use a medical interpretation service. Make sure that your health care provider gives you all of the important information and instructions in writing so that you can translate it at home if necessary.

If Your Health Care Provider Does Not Use Plain Language:

Language barriers can also occur when health care providers use language that is hard to understand or too technical. Health care providers should speak to all of their patients in plain language that clearly expresses the information and treatment options in an easy-to-understand way.

If you find yourself struggling to understand your health care provider, do not be afraid to ask them to:

Slow down
Explain the information thoroughly in plain language
Write down and define medical terms for you
Repeat the information
Allow you to take notes and read them back to them to make sure you understand what they said

If You Are Worried Your Concerns Are Not Being Addressed:

Research shows that medical students and residents hold false beliefs about the difference between Black people and white people’s bodies -- a recent study published in the Proceedings of the National Academies of Science revealed that 40% of first and second-year medical students believe that Black people’s skin is thicker than white people’s skin. Study participants who held false beliefs about Black people’s bodies rated their Black patients’ pain as lower and made less accurate treatment recommendations.⁴

In the context of a lupus diagnosis, a Black patient may complain of experiencing extreme fatigue but because of implicit racial bias, their doctor may not take it as seriously as they would a white patient. That can result in the Black patient’s life-saving diagnosis being delayed until more serious symptoms arise.

It is important to be your own best advocate by tracking your symptoms carefully and coming prepared to your doctor appointments with a list of questions and concerns. Do not be afraid to find a different doctor for a second opinion if you do not feel like your concerns are being properly addressed.

If You Are Struggling With Mistrust Toward the Health Care System:

There is a large historical context that has created mistrust for the health care system among communities of color, with Black Americans in particular bearing the weight of this history.^5,6,7,8,9This has resulted in less participation in preventive care, a longer time from symptom development to diagnosis which leads to less effective treatment, lower rates of vaccination, and less participation in clinical trials among people of color. All of these factors contribute to the poorer health outcomes and higher rates of death due to chronic illness in communities of color.

It will take a long time for the health care community to rebuild trust within the Black community and other communities of color, but this trust is vital in order to strengthen the health outcomes of marginalized groups. It is worth taking the time to research health care professionals for their cultural competency to build a care team you trust. Finding a doctor or health care professional whom you can build that trust with will allow you to have more honest conversations about your potential misgivings of a diagnosis or treatment option. If your doctor takes the time to address your misgivings in these conversations, it can reassure you that you are receiving the best care possible. With that reassurance, you may be more willing to follow treatment instructions that can increase the quality of your life and potentially save it.