Race and other factors, including sex and age, can affect the health outcomes of people living with systemic lupus erythematosus (SLE). Often simply referred to as lupus, SLE is a type of autoimmune disease that disproportionately (unequally) affects people of color. Lupus is also more common among women.

In this article, we’ll discuss research regarding three risk factors for lupus — race, sex, and age. We’ll also explore how disparities (differences in resources or treatment) in race affect SLE treatment and severity. Keep reading to find out what you can do to advocate for yourself as a person living with SLE.

1. Race

Those familiar with SLE may know that lupus is more common in certain racial groups. A person’s race has an impact on their risk and may affect their experience with lupus and treatment in several ways. According to lupus statistics by race from the Manhattan Lupus Surveillance Program (MLSP), non-Hispanic Black women have the highest rate of SLE, at roughly three times that of non-Hispanic white women. Lupus rates are about two times higher in Hispanic women and 1.4 times higher in Asian women than in white women.

Black women have the highest rate of SLE, roughly three times that of white women, according to researchers. Lupus rates are two times higher in Hispanic women and 1.4 times higher in Asian women.

SLE is also more prevalent among non-Hispanic Black, Hispanic, and Asian men than among white men, the study authors reported. Compared to the condition’s commonness among white men, the prevalence of SLE is roughly seven times higher in Black men, five times higher in Hispanic men, and four times higher in Asian men, according to the researchers’ findings.

People of Color Experience More Severe Lupus Complications

Lupus in Black females is more likely to result in severe complications compared with white females, according to the Lupus Foundation of America. Complications include lupus nephritis (lupus-related kidney disease), end-stage renal disease (kidney failure), and neurological disease.

Black people with lupus are more likely to die of the disease than white people, according to the Centers for Disease Control and Prevention (CDC). Among people who die of lupus, the average age of death is significantly younger for Black people than for white people.

Other racial and ethnic groups are also disproportionately affected by lupus complications. A 2019 study found that African American, Asian/Pacific Islander, and Hispanic people living with lupus had higher rates of kidney complications, neurological complications, and blood disorders, compared with white people living with the condition. In the MLSP data, the prevalence of lupus nephritis was as high as 53.2 percent in Asian people, 50.7 percent in Black people, and 49.4 percent in Hispanic people — versus 25.4 percent among white people.

Health Disparities in Disease, Diagnosis, and Treatment

Although the causes of lupus aren’t fully understood, higher prevalence and poorer health outcomes among non-white people compared with white people with SLE are related to social and societal factors, according to the American Journal of Epidemiology. Research suggests that social factors (such as poverty and discrimination) may have more of an impact on disease progression than genetic factors do.

Inequalities in how many people get SLE and how severely people experience the disease are worsened by implicit bias (an unconscious negative attitude against a particular social group) and unfair medical treatment, according to the Annual Review of Public Health.

Researchers have reported findings such as these:

• Because Black people are underrepresented in clinical trials for SLE, treatments may not be as effective for Black people as they could be, according to a 2022 study in Clinical Rheumatology.
• A “relatively large percentage” (almost 28 percent) of 427 Black women with SLE reported racial discrimination while seeking medical care, wrote the authors of the American Journal of Epidemiology study.
• Compared with white people, Black and Hispanic people with lupus were less likely to receive a specialist referral from their doctors, per a 2023 study in ACR Open Rheumatology.

2. Sex

According to the Lupus Foundation of America, lupus is much more common in women than in men, with rates of SLE among women about nine times higher than those among men. Scientists still aren’t sure why this happens but suggest that it has to do with genetic and hormonal differences between men and women.

Rates of SLE among women are about nine times higher than those among men.

Lupus Can Affect Pregnancy

Anyone who has SLE is at high risk of complications during pregnancy. However, both Black and Hispanic people living with SLE have higher rates of certain pregnancy complications than do those who are white.

A 2016 study found that nearly 25 percent of Black and 21 percent of Hispanic women had preterm labor, as opposed to roughly 14 percent of white women. Preeclampsia (high blood pressure that develops during pregnancy) affected almost 20 percent of Black and Hispanic women with SLE during pregnancy, compared with 13.5 percent of white women. Rates of cesarean section were more than 40 percent for all three groups.

Possible reasons for the increased risk of complications in people of color include lupus complications outside of pregnancy, according to the study authors. For example, lupus nephritis, which is more common in Black and Hispanic people with SLE, is a predictor of complications like preeclampsia and preterm birth.

The researchers also noted other possible risk factors for pregnancy complications, including higher rates of chronic health conditions, lower socioeconomic status, and poorer quality of healthcare.

3. Age

According to the Lupus Foundation of America, most people with lupus first experience symptoms and are diagnosed between ages 15 and 44. Lupus symptoms and progression also vary based on age and when the condition first developed. People who get lupus at an older age may experience milder symptoms.

Impacts of Age and Race

Research has identified patterns related to age and race in people with lupus. Lupus tends to develop at a younger age in Black people than in white people. For example, the National Lupus Patient Registry in Georgia found that lupus rates are three times higher in Black females than in white females, especially among those ages 30 to 39. A different study found that the average age of lupus diagnosis was six years younger in African Americans than in white people.

There’s some evidence that genetic factors may play a role in earlier SLE onset among African Americans. However, the precise reason for this difference is not well understood, and some researchers believe that environmental factors also play an important role.

It’s important to receive care as soon as possible when lupus symptoms appear — an earlier onset of symptoms can have negative consequences on health and quality of life. “These are young women in the prime of their careers, family, and fertility. This means a severely compromised future, with a disease that waxes and wanes, affecting every aspect of daily living for the rest of their lives,” the lead researcher of the Georgia study said in a press release.

How To Advocate for Yourself When Living With SLE

Racial disparities in public healthcare can have a significant impact on the diagnosis, treatment, and management of SLE. But through research, advocacy, and education, we can begin to improve the quality of life for people of color living with lupus.

If you’re living with lupus, you can take some steps to advocate for yourself, from diagnosis to treatment and beyond.

Learn About the Warning Signs of SLE Complications

SLE complications like kidney disease disproportionately affect people of color, so it’s important to be familiar with the symptoms of these other conditions. For example, symptoms of lupus nephritis include foamy urine, blood in the urine, and swelling in the hands, feet, and face.

​Other lupus complications include heart attack and stroke. Cardiovascular disease (heart and blood vessel disease) is one of the top causes of death in individuals with lupus across racial groups. Talk to your doctor about the complications of lupus, the symptoms of these conditions, and any steps you can take to care for your health.

Seek Out Healthcare Providers Who Understand Your Needs

Research suggests that people of color often receive a lower quality of care from healthcare providers, often because of racial discrimination and bias. Be aware of the possibility of discriminatory treatment, and be ready to ask for a referral, tell medical leadership about your concerns, or look for a new provider if you’re being treated poorly. Seek out culturally competent doctors and specialists who understand and address your unique needs. You deserve to be treated well.

Seek out culturally competent doctors and specialists who can understand and address your unique needs.

You can research specialists online by reading their bios on practice websites. Consider where a provider was trained or previously practiced, which might suggest if they have experience in treating diverse populations. You can also connect with people in lupus support groups to get referrals from others who live near you.

Your geographic location and insurance provider may limit your options for lupus specialists. It might also be challenging to find doctors or rheumatologists of your same racial or ethnic background. Even if you have limited choices, you may be able to learn what to expect from a specific rheumatology provider from individuals you meet in your area.

Prepare for Doctors’ Appointments

Planning ahead for appointments can help you make the most of your time with your doctor. Write down your questions and reflect on how lupus affects your life. Speaking up about your concerns regarding symptoms, treatments, or quality of life — even if your healthcare provider doesn’t directly ask about a specific issue — can help ensure your needs are met.

Your rheumatologist will ask about your family history, so check with family members to learn if anyone else has been diagnosed with SLE or has experienced symptoms, such as joint pain, rashes, and oral or nasal sores.

Build Your Support System

Building a strong support system of people with lupus can help you be your best health advocate. In addition to connecting with people on MyLupusTeam, look for support groups in your area so you can ask questions about others’ experiences and share your own. Doing so may help you connect with resources you weren’t aware of before and can give you strength during hard times with your illness.

Talk With Others Who Understand

MyLupusTeam is the online social network for people with lupus and their loved ones. On MyLupusTeam, more than 233,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Are you a person of color living with SLE or another type of lupus? Have you taken steps to advocate for yourself? Share your experience in the comments below, or start a conversation by posting on your Activities page.