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Systemic lupus erythematosus (lupus) is one disease, but it doesn't affect every group of people the same. While anyone can get lupus, the disease is two to three times more common in African American, Hispanic, Asian American, American Indian/Alaska Native, and Pacific Islander people. 

The outlook also differs by race. Black people develop lupus earlier in life, have more serious disease, and get more complications. Not only are they three times more likely to die from the disease than people of other races, but can die an average of 10 years sooner with lupus. Hispanic people also face issues with care and are at greater risk for organ damage from the disease.

There are also disparities in lupus nephritis, a complication of lupus that causes inflammation and damage in the kidneys. It affects Asian and African American women more often. 

What's behind these differences in lupus diagnoses and outcomes? Researchers have identified a few possible reasons for the health disparities among people of color, including genes, access to health care, and a lack of trust in doctors. 

Learning what barriers might stand in the way of treatment and advocating for yourself could prevent health disparities from affecting your lupus care. 

Genes for Lupus

People of African, Asian, and Native American descent get lupus nephritis more often than people of other races. Black and Asian people often have more severe lupus, with increased complications like heart disease and kidney damage. And African American people develop lupus at an earlier age than people of other races. Genes might contribute to these differences. 

One gene that researchers have focused on is apolipoprotein 1 (APOL1). It holds the instructions for making proteins that help your body fight infections. Everyone has two copies of the APOL1 gene. If your ancestors came from Western or Central Africa, you may have a mutation to these genes. About 13% of Black Americans have these gene variants, which puts you at higher risk for lupus kidney damage.

Genes might also affect how your body responds to treatment. People whose ancestors came from Africa and Latin America don't do as well on the drug cyclosporine, which is a treatment for lupus nephritis. People of Asian descent tend to have more side effects from the drug mycophenolate mofetil (MMF).

Access to Health Care

Many barriers can stand in the way of getting lupus treatment. One is cost. Black people who have lupus may also be less likely to have health insurance. And without health insurance coverage, you're less likely to see a primary care doctor or rheumatologist. 

A lack of health insurance can also lead to lower quality care and worse outcomes. One reason why people with lupus who live in Puerto Rico have better outcomes than Hispanic people in the United States is because they're more likely to have health insurance.

Health Care Bias

Some health care providers show bias when treating patients in certain racial and ethnic groups. Black patients are more likely to say that their rheumatologist doesn't treat them with compassion or respect. As a result, these patients are less likely to take the medicine their doctor prescribed. 

Racial bias in health care can sometimes delay a diagnosis or misdiagnose patients of color. Delays could give the disease time to progress. Misdiagnoses may result in people taking the wrong medicine. 

Bias is also an issue when it comes to treatment. Rheumatologists less often prescribe standard lupus treatments like hydroxychloroquine (Plaquenil) and biologic drugs to their Black patients than to patients of other races. Black and Hispanic patients get fewer referrals from primary care doctors to rheumatologists.

Stress

Being under stress can both trigger lupus and make its symptoms worse. While everyone deals with stress, patients of color face added stressors like financial and racial discrimination. Black lupus patients are 10 times more likely to live in a lower-income neighborhood. One study linked exposure to racial discrimination — from the news, friends and family, or by witnessing racism in public — to more serious lupus.

Language and Culture

Your ability to communicate with your medical team could affect your treatment. Not speaking English can be a barrier to care. Without a translator it may be hard to understand your doctor and ask questions. 

The beliefs you and your family share also influence your treatment. For example, some Asian immigrants don't like to stay on medicine long-term, especially if they don't have symptoms. That's a problem with a chronic disease like lupus that requires long-term treatment to manage.

Trust Issues

Racism has a long history in the American medical system. From 1932 to 1972, experiments were performed on Black men with syphilis in Tuskegee, Alabama, without their consent. Unethical experiments like the Tuskegee Syphilis Study have led to a deep distrust of the medical system among members of the Black community. 

When you don't trust your doctor, you're less likely to communicate with them, follow their advice, or take the medicine they prescribed. People tend to have more trust for doctors who look like them. And since there are not many minority rheumatologists, finding a doctor of the same race can be difficult.

Clinical Trials

Researchers study the safety and effectiveness of new lupus treatments in clinical trials. And minority groups aren't well represented in these studies. 

While Black people make up 43% of lupus patients, they only represent 14% of clinical trial participants. Distrust of the medical system is one reason why minority groups don't participate in studies. Other reasons include: 

  • A lack of transportation 
  • Problems getting childcare
  • Work conflicts
  • Worry that they'll get a placebo (inactive pill) instead of the real treatment
  • Limited understanding of how research works
  • Doctors who don't refer them to studies

Having diversity in clinical trials is important. Medicines don't work the same in everyone. When studies heavily include one racial group, researchers can't learn whether a medicine is effective or causes different side effects in other racial and ethnic groups. 

Closing the Gap

The many issues that lead to inequality in lupus treatment won't go away overnight. Yet there are things you can do to ensure that you get diagnosed promptly, referred to a rheumatologist, and prescribed the right medicine. 

Learn about lupus and its treatments. Being a well-informed patient will make you a better partner in your care. Talk to other people with lupus or join a support group. They can offer valuable tips to help you manage your disease more effectively. 

Finally, be an advocate for yourself. If your doctor doesn't recommend a medication or clinical trial, ask about it.

Show Sources

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SOURCES:

ACR Open Rheumatology: "Disparities in lupus and the role of social determinants of health: current state of knowledge and directions for future research," "Unraveling race, socioeconomic factors, and geographical context in the heterogeneity of lupus mortality in the United States."

American Kidney Fund: "APOL1-Mediated Kidney Disease."

Arthritis & Rheumatology: "Epidemiology and sociodemographics of systemic lupus erythematosus and lupus nephritis among U.S. adults with Medicaid coverage, 2000-2004."

Arthritis Care & Research: "Misdiagnosis, missed diagnosis, and delayed diagnosis of lupus: a qualitative study of rheumatologists."

Arthritis Foundation: "Equity in Health Care."

Best Practice & Research Clinical Rheumatology: "Reframing health disparities in SLE: a critical reassessment of racial and ethnic differences in lupus disease outcomes."

CDC: "People With Lupus."

Clinical Rheumatology: "Health Disparities in Systemic Lupus Erythematosus—A Narrative Review."

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

Harvard Medical School: "Embracing Diversity: The Imperative for Inclusive Clinical Trials."

Journal of Racial and Ethnic Health Disparities: "Vicarious racism stress and disease activity: the Black Women's Experiences Living with Lupus (BeWELL) Study."

Lupus Foundation of America: "Lupus Health Disparities in the United States."

Michigan School of Public Health: "Understanding Black Distrust of Medicine."

Rheumatology (Oxford, England): "Genetics of SLE: does this explain susceptibility and severity across racial groups?"