Minority Populations, Genetic Factors, and Higher Risk of Lupus

Inequalities in treatment, care, and environment make minority populations more likely to have severe lupus, but there may be other differences in the disease that stand in the way of better health for all people with lupus.

Systemic Lupus Erythematosus (SLE,) is a disease where the immune system attacks the body’s own cells and causes organ damage and pain. The disease often comes and goes in flares, and it can be brought down to a temporary low- to no-symptomatic state called remission through a combination of medication and lifestyle changes. Unfortunately, SLE does not affect all people equally.

Health Disparities and Lupus

Women are disproportionately more likely to develop SLE, and people of African, Asian, or Amerindian (including Hispanic) origin are even more likely to develop it. These groups have worse symptoms and, statistically speaking, have a lower life expectancy. Currently, researchers believe that this problem is a combination of genetic, epigenetic, and socioeconomic factors, and racial, sexual, and gender discrimination also plays a role. Minority groups and other marginalized communities are often unrepresented in lupus clinical trials, making treatment a lot more limited and less effective in these cases, and this coupled with poorer care due to bias leads to worse outcomes due to inadequate treatment. In countries where racism is less prevalent (and in places like Puerto Rico where people of European origin are not the majority,) outcomes end up much better.  You can read about how our society affects lupus and the many factors that lead to worse outcomes here. 

Health disparities can also be affected by age, disability, sexual orientation, gender expression, and even geographic location and can be very profound – their cost measured in quality of life and even lives lost. Sometimes these factors feed into each other, creating harmful stereotypes that make the situation worse. Many people with lupus have found their issues brushed aside and devalued because of these disparities, and as a result are often mistrustful of even the ‘good actors’ in medicine. Efforts for change are ongoing, but the medical establishment still has a long way to go and persistence is sometimes the only way for people with lupus to get results. These groups are also often more likely to be exposed to environments that make their conditions worse, including injuries and pollutants. 

You can read more about health disparities and lupus here.

Differences in Lupus Symptoms Between Races

People with lupus have more in common with each other than they have differences. However, it’s important to look at the differences to find the right treatment for each person.

African Americans (Afro-caribbean ancestry) were five times more likely to suffer from SLE than European Americans. SLE also occurs earlier and hits harder in African American populations compared to European Americans, with more kidney-related symptoms. And, although the mortality rate of SLE has greatly improved over the decades, people of African origin in the US continue to have higher mortality rates from SLE, with a survival rate of 57-78% over 5 years.  

The symptoms of lupus are unique from patient to patient, but different groups have different patterns of symptoms that show up more frequently. For example, people of African and Asian origin in the US and Pacific Islanders have higher frequencies of blood-related symptoms such as thrombocytopenia, with African Americans having higher frequencies of neurological symptoms than any of these groups. Neurological symptoms of lupus include fatigue, depression, anxiety, and even seizures, and can range in severity from inconvenient to very serious. Brain fog, a cognitive issue that feels like struggling to think through a cloudy haze or fog, is an extremely common symptom. 

Cutaneous (skin) lupus symptoms are also different between races and origins. European origin people have higher rates of photosensitivity and malar rash, while patients of African decent are more likely to have the circular lesions known as discoid lupus.

Lupus nephritis and cardiovascular disease are higher in all marginalized groups (including people struggling with poverty,) compared to patients of European origin and are among the top causes of eventual death for people in these groups with lupus. Lupus nephritis is a form of lupus that heavily affects the kidneys. You can read about Lupus nephritis and dialysis, a common treatment for severe lupus nephritis, here. Cardiovascular disease can affect the heart, lungs, kidneys, and blood vessels (and therefore other organs including the brain.) People with lupus are significantly more likely to have cardiovascular disease, though the risk is also heavily influenced by lifestyle and diet. Both of these are the leading causes of death in these populations.

Hispanic and Asian-origin women with lupus are 4-6 times more likely to die than people of European origin with lupus, and African American women with lupus are estimated to have a 20-year less life expectancy on average. 

This implies that there are differences behind the presentation of SLE in different populations that are not fully understood. However, there may be a hint in the bloodstreams of people with lupus and those at high risk of developing lupus. 

The LAUREL Study

The LAUREL study looked at volunteers of European and African origin in the US. Some participants had lupus, some were healthy controls, and a third group had the blood markers of lupus but did not have any active symptoms of SLE. The study found a difference in how the immune systems of European-origin and African-origin immune systems work in the period before they develop lupus: The European Americans in the study had a suppressed immune system and fewer T-cells, while the African Americans had higher levels of T-cells and T-cell activation. 

T-Cells are a type of immune system cell produced in the thymus that seek out and destroy threats to the body, specifically pathogens that hide in the body’s own cells. Usually, T-cells only attack cells that have been damaged or altered by attacking viruses and bacteria and stop these invaders before they can get a foothold. However, in lupus, T-cells target healthy cells for destruction and the regulatory cells that are supposed to catch and remove these faulty T-cells fail in their job. This is how SLE comes about. Read more about T-Cells here. 

Relatives of Lupus Warriors: Is There Higher Risk?

Researchers were also interested in seeing if there is a way to detect and diagnose lupus before symptoms arise. The relatives of people with lupus are at increased risk of developing lupus. Early onset of SLE, without counting any other factor, is most associated with severe SLE. However, earlier onset dates of SLE, including childhood-onset SLE, disproportionately affect minority ethnicities and genetic groups. Even if they don’t have obvious symptoms, some of these relatives might have incomplete lupus (ILE,) where the autoimmune activity doesn’t (or hasn’t yet) progressed to full-blown lupus. This still causes damage in the body that accumulates over time, making it important to monitor for these individuals. SLE also has a major effect on quality of life and the damage from SLE can be a heavy financial, psychological, and physical burden. Early, proper treatment will reduce this burden. This makes it important to diagnose SLE early and determine what causes it to manifest differently in different populations. 

The relatives of people with lupus show similar antibodies and blood proteins to relatives who have diagnosed lupus. The inflammatory markers were ANA (antinuclear antibodies,) T-Cells, and IL-6, an interleukin. Antinuclear Antibody (ANA) tests are a common test for lupus that looks for antibodies that target healthy proteins usually found in the nucleus – the area in the center of a cell that contains your DNA. Most people have some ANA without issues, but people with lupus have a large amount of them and this causes their immune system to target healthy cells. You can read more about lab tests for lupus here, and how they can be used to diagnose lupus.

Higher inflammatory markers means that the immune system is already active and is more likely to become an autoimmune disease like lupus. It’s unclear whether genetic factors are involved or whether societal stress plays a larger role, and it may be a combination of the two.

Raising Awareness and Research Studies

Raising awareness is the primary way to combat health disparities and this can help lead to the other solutions: expanded and improved health insurance coverage, the placement of better-quality providers in inadequately served communities, and pushing clinical studies and overall knowledge of diseases affected by disparity to improve treatment and outcomes. Medicaid, in particular, is an important resource for people with lupus. Social supports are linked to socioeconomic status, and better supports can help improve many of the factors that are involved in health disparities. Expanding and exploring these solutions cannot happen without awareness. 

Additionally, participating in research studies can help you play an active role in educating yourself about your health and help others do the same.

If you and or someone you know may be at risk of Lupus, please visit: https://www.proactive.progentec.com/