Dr. Matthew H. Liang, professor of medicine at Harvard Medical School and professor of health policy and management at the Harvard TH Chan School of Public Health

The three-year COVID-19 pandemic was not only a great disruptor, it also highlighted long-standing problems, including health inequity around the world.

“I thought this was the final straw on bragging about our health care system. It showed every weakness, including huge health disparities in mortality and impact,” said Dr. Matthew H. Liang, professor of medicine at Harvard Medical School and professor of health policy and management at the Harvard TH Chan School of Public Health, talking about the impact of COVID-19 in the US in a video interview with The Korea Herald in late May.

Cumulative age-adjusted data showed that COVID-19 death rates for African Americans was 1.6 times higher than that of white Americans, according to a US Centers for Disease Control and Prevention report released in May.

Discussing how racism was a factor in the high mortality rate of African Americans with COVID-19, Liang said Black Americans often “had none of the advantages that people with money or resources or acceptance into the society have. They probably had other underlying illnesses in many cases as well.”

While the study of racism in health care accelerated in the US during the pandemic and in the aftermath of the murder of George Floyd -- an African American man -- by a police officer during an arrest in May 2020, racism and its impact on death and outcomes in Systemic Lupus Erythematosus (SLE) has only been recently studied in the last decade, Liang said.

A chronic autoimmune disease, SLE is two to three times more common in African American women than in white women. African American women also get SLE at a younger age, experience more severe disease activity and have higher mortality rate.

In his presentation titled “Ending SLE Racial Health Disparity,” delivered at the 15th International Congress on SLE and the 43rd KCR Annual Scientific Meeting and 17th International Symposium held May 17-20 in Seoul, Liang noted the history of SLE mortality disparity in the US.

From the 1950s to the 1990s, case series showed SLE to be more common and more severe in African Americans and also that these disparities were related to markers of socio-economic status such as income.

In 1998, Dr. Bae Sang-cheol of Hanyang University was the first to link the epidemiology of SLE to the slave trade route in a prevalence gradient hypothesis -- There may be an increasing prevalence of SLE as one goes from Africa to North America and from Africa to Europe.

A 2002 study showed that African Americans had the highest SLE mortality rate in the US population as a whole. Studies from 2014-2021 showed that racism had adverse effects on telomere length in men and on organ damage and disease activity in Georgian African American women in SLE.

A study from 2017 found that while SLE mortality had improved, the African American mortality disparity from the 1960s persisted.

“There are obviously things that are related to genetics and genetic differences. But race, as it is often used, is a social construct without scientific evidence and is hurtful and dangerous for individuals subjected to these beliefs,” Liang said.

Social determinants have significant impact on SLE outcomes in patients. Black American women with SLE bear the brunt of being a racial minority and often coming from a lower socioeconomic background without access to quality health care.

According to Liang, the health care system in the US penalizes people living in high-risk inner city areas: There has been progressive de-investment in hospital and clinics that serve the poor and physicians are in short supply. The latter group is actually penalized by compensation formulas which favor results in otherwise healthy or less complicated patients, according to Liang.

“Our system is so monetized that everything is around value rather than the fact that health care should be a right of being a human being,” he said.

In a system where insurance is tied to employment and medical care and treatment one receives are largely dependent on what the insurance company will pay, it is inevitable that the disadvantaged and the marginalized will suffer.

“We (US) are a wealthy country, technologically advanced and it’s basically you get what the insurance company pays,” said Liang in discussing how a universal health care, such as the National Health Insurance in South Korea, would make a difference, especially for patients with chronic illnesses such as SLE.

Living with a chronic illness presents an additional challenge for patients: health literacy. In acute care, for example treating a broken arm in an ER, the doctor and the system are in charge and there is a standard for treating a broken. In chronic illness, the reverse holds true. “The patient is the expert and is the best judge of what’s going on because they live with it,”

In such circumstances, health literacy is of great importance as the patient needs to be proactive in self-management and monitoring of the condition. According to Liang, health literacy involves not just comprehension of words, but the ability to find the resources necessary to understand what the medical professionals are saying and doing. “It’s a huge and lifelong learning job,” Liang said.

“But now, with ‘Dr. Google,’ t’s made so much more difficult in some ways because we’re in an era of information excess and experience deficit,” he said.

What about the use of artificial intelligence, touted by many as a potential game changer in the field of medicine?

“Again, it’s garbage in, garbage out. I think it has amazing possibilities but also has amazing potential for doing harm, especially in terms of reinforcing racism,” he said.

He cited the example of eGFR, or estimated glomerular filtration rate, an equation that is commonly used in considering dialysis and kidney transplants. “It came to light by vigilant people thinking it through the lens of racism that the most common equation for kidney function is racist in its assumptions,” Liang said.

For the last two decades, eGFR has been used to evaluate how efficiently a person’s kidney removes substances toxic to the body. The equation reports a score taking into account a patient’s age, gender and race and is an important measure to determine whether a person should under dialysis or transplantation. The eGFR was adjusted for race but inaccurately misclassified Black patients as having better kidney function than they actually had and thus delayed life-saving treatment. Removing race in calculating the eGFR reclassified one-third of Black patients to a more severe chronic kidney disease. SLE is not only more common in African American women then in white women, but African American women are usually sicker by the time they are seen by a doctor and have more organ involvement. And that could explain the differences in their ultimate death rate.

“You’ve got to do things that are practical and doable,” said Liang, about measures to improve the mortality rate in African American women with SLE. “The pernicious effects of racism and poverty are intertwined and there is no magic cure. One has to acknowledge racism, try things. Implement known and effective interventions and measure the results, and persist,” he said.

As Black American women of childbearing age are at highest risk of SLE, Liang said that a more proactive approach to finding lupus patients early on is needed.

One strategy he suggests for the US is to do outreach at churches, beauty parlors and family planning and maternity clinics.