Factors like race, age, and sex can affect the health outcomes of people in the United States, especially those living with chronic health conditions. Systemic lupus erythematosus (SLE), often simply referred to as lupus, is a type of autoimmune disease that disproportionately (unequally) affects women and people of color.
In this article, we’ll explore some of the ways that race, age, and sex disparities (differences in resources or treatment) affect SLE treatment and severity — and discuss what you can do to advocate for yourself as a person living with SLE.
A person’s race affects their risk of developing lupus and may affect their experience with lupus and treatment in several ways. According to statistics from the Manhattan Lupus Surveillance Program (MLSP), non-Hispanic Black women have the highest rate of SLE, at a prevalence (or commonness) roughly three times that of non-Hispanic white women. Prevalence was about two times higher in Hispanic women and 1.4 times higher in Asian women than in white women.
SLE is also more prevalent among non-Hispanic Black, Hispanic, and Asian men than in white men, the study authors reported. Compared to 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 their findings.
A higher proportion of Black women experience lupus complications compared with white women, according to the Lupus Foundation of America. Complications include lupus nephritis (lupus-related kidney disease), end-stage renal disease (kidney failure), and neurological disease.
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 to 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.
According to the Lupus Foundation of America, lupus is much more common in women than in men — researchers report that rates of SLE among women are about nine times that of 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.
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 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 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 over 40 percent for all three groups.
The many 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 noted the following other possible risk factors for pregnancy complications: higher rates of chronic health conditions, lower socioeconomic status, and poorer quality of health care.
Most people with lupus first experience symptoms and are diagnosed between the ages of 15 and 44. Lupus symptoms and progression also vary based on age and when your lupus first developed. People who develop lupus at an older age may experience more mild symptoms.
Research has found patterns between 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 is 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.
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.
Gender and racial disparities in public health care 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 are living with lupus, here are some steps you can take to advocate for yourself, from diagnosis to treatment and beyond.
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 swollen hands and feet.
Other lupus complications include heart attack and stroke. Cardiovascular disease (heart disease) is the top cause of death in individuals with lupus across racial groups. Talk to your doctor about the complications of lupus, their symptoms, and any steps you can take to care for your health.
Research suggests that people of color often receive a lower quality of care from health care providers, often because of racial discrimination and bias. One way to address this is to 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.
Depending on your geographic location and insurance provider, you may not have many options for lupus specialists. It might also be challenging to find a rheumatologist 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.
Planning ahead for appointments can help you make the most of your time with your rheumatologist. 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 doctor doesn’t directly ask you 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.
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 bolster you during hard times with your illness.
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 223,000 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.