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Lupus is a very serious disease where your immune system attacks your own tissues. This autoimmune disorder can damage your joints, heart, kidneys, and even your brain.

“Lupus is the most common life-threatening autoimmune disease out there. People who have it are much more vulnerable to complications such as late stage kidney disease or heart attack compared to people without the condition,” says Shivani Garg, MD, medical director of the University of Wisconsin Lupus Clinic in Madison. 

It can be particularly devastating for patients of color, she adds. Women are nine times more likely to get lupus than men. But Black women are especially vulnerable. Their disease can often progress quickly with worse outcomes.

Here’s a closer look at why people of color are more vulnerable – and what you can do about it.

The Genetics of Lupus

Black women are three times more likely to be diagnosed with lupus according to the Lupus Foundation of America. Some studies show that people of color can also have several gene mutations that raise your risk for this condition. 

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“People of African ancestry are at highest risk, followed by Asians and Hispanics, and lowest in whites,” says study author Timothy Vyse, PhD, professor of molecular medicine at Kings College London in the United Kingdom. “This may have developed initially as a protective response against another condition such as malaria.” 

Research also suggests that race and ethnicity may play a role in how people respond to drugs. In one study, belimumab (Benlysta) a biologic that's commonly used for lupus, didn't work as well for Black people as it did for others. But, when results from Black patients were pooled across multiple studies, belimumab was effective. Another study found that patients of African or Hispanic ancestry responded better to rituximab (Rituxan), a biologic that's sometimes used for lupus, than other participants. More research is needed to understand how race and ethnicity might affect lupus treatments.

“Patients of African descent may have higher levels of certain inflammatory chemicals, which means they will respond best to certain biologics and may even need a higher dose of some of them,” says Vyse. 

Common Health Care Disparities Among Lupus Patients

Women of color may be more likely to develop lupus. But reasons for poor health outcomes most likely go past genetics, says Garg. Social determinants of health, or nonmedical factors that help to determine health outcomes, play a role, too. These can include:

Financial problems. People with lupus may struggle more with financial issues. Their disease flares can make it hard for them to work and keep their jobs. One study found that Black patients with lupus were twice as likely to get fired as white patients.

Lack of health knowledge. Black patients with lupus may have a harder time with health literacy – the ability to find, understand, or use health information. As a result, they may not recognize early symptoms or see the doctor right away. They may also have some distrust of the medical system, adds Garg. 

“If you don’t feel a rapport with your health care team, you may not bring up issues that can make it harder to get care, like lack of transportation,” she points out. “The result is missed appointments and skipped treatments that worsen your outcome.”

Poor health care access. A 2024 study published in the journal Lancet Rheumatology found that lupus patients who had economic insecurity (meaning you may have trouble accessing food, housing, and/or health care) had poorer disease outcomes. “My own research has found that lupus patients on Medicaid, who struggled financially, had lower physical and cognitive function than patients who were more economically secure,” says Garg.

People of color tend to have less access to primary care doctors, and poorer health care coverage. You can also be less likely to get a referral to a lupus specialist from your primary care provider, too. 

In addition, lupus treatments are expensive. Some cost as much as $4,000 per week. While much of this cost is covered by insurance, it can be hard for you to get approval. This can make it harder for patients of color to get access to needed medications.

Racism. People of color are more likely to face discrimination, including by their health care providers. It puts more stress on you, which can worsen your symptoms and make your disease more serious. 

If you have lupus and experience racism, you may also be less likely to trust providers or follow their advice. For example, Black patients with lupus may not be as willing to take their lupus medications, including strong drugs that suppress their immune system. 

Less healthy environments. Black and Hispanic patients with lupus are less likely to have access to nutritious food. This can worsen your lupus symptoms and raise your risk for conditions related to lupus, such as heart disease. If you live in a disadvantaged neighborhood, you're also 60% less likely to receive proper lupus care.

What Can Be Done to Fight Health Care Disparities?

If you have lupus, health care disparities can seem overwhelming. Here are some things you can do about them:

Find a doctor that you trust. “You need to feel like you have a rapport with your medical provider and you can confide in them about issues that may provide a barrier to care, such as limited child care,” said Garg. Once you do that, you’ll be able to engage in shared decision making with them, where you work together with your doctor to decide what to do about your care. 

One of the best ways to do this, says Garg, is to find a doctor who works at a large medical center with a team of other specialists, like kidney and heart doctors, pharmacists, and social workers. The Lupus Foundation of America has a national network of local chapters that can provide a list of doctors in their area for diagnosis and treatment.

Pay attention to comorbidities. Comorbidities are health conditions related to lupus. Patients of color are four times more likely to develop end-stage kidney disease than white patients. They develop kidney problems earlier than other patients and may go longer without a diagnosis. They are also three times more likely to die than white patients. People with lupus are also more likely to have high blood pressure and cholesterol, to have obesity, and to develop thyroid and heart disease than people without the condition.

Your doctor should be aware of all these risk factors and should do appropriate screening tests like blood and urine tests to make sure organs like your kidneys and heart are OK, said Garg. If they aren’t, you should be referred to the appropriate specialist like a cardiologist (for your heart) or a nephrologist for your kidneys. 

Consider a clinical trial. While Black patients make up over 40% of all lupus cases, only 14% participate in clinical trials for the disease, according to a 2018 review published in the journal Current Rheumatology Reports. “Patients who are Black or Hispanic are often wary of clinical trials,” says Garg. But it’s important that they join, to make sure new drugs work as well in patients of color as white patients. Your doctor may be able to connect you to a clinical trial near you. You can also search on the Lupus Foundation’s website.

Show Sources

Photo Credit: The Image Bank/Getty Images

SOURCES:

Shivani Garg, MD, medical director, University of Wisconsin Lupus Clinic, Madison, WI.

Timothy Vyse, PhD, rheumatologist; professor of molecular medicine, Kings College London, U.K.

National Institute of Arthritis and Musculoskeletal and Skin Diseases: “Systemic Lupus Erythematosus (Lupus).” 

American Journal of Epidemiology: “Racial discrimination, disease activity, and organ damage: the Black Women’s Experiences Living with Lupus (BeWELL) Study.”

Lupus Foundation of America: “Health Disparities, Executive Summary.”

Rheumatology: “Genetics of SLE: does this explain susceptibility and severity across racial groups?”

The Lancet Rheumatology: “Economic insecurities and patient-reported outcomes in patients with systemic lupus erythematosus in the USA: a cross-sectional analysis of data from the California Lupus Epidemiology Study.”

Journal of Clinical Medicine: “High comorbidity burden in patients with SLE: data from the community-based lupus registry of Crete.”

Current Rheumatology Report: “The representation of gender and race/ethnic groups in randomized clinical trials of individuals with systemic lupus erythematosus.”

Arthritis & Rheumatology: "Efficacy and Safety of Subcutaneous Belimumab in Systemic Lupus Erythematosus," "Efficacy and Safety of Rituximab in Moderately-to-Severely Active Systemic Lupus Erythematosus: The Randomized, Double-Blind, Phase II/III Systemic Lupus Erythematosus Evaluation of
Rituximab Trial."

Nature Biotechnology: "The discovery and development of belimumab: the anti-BLyS–lupus connection."