International lupus congress calls for greater social awareness, new drugs

New drugs and greater social awareness would help bring about an end to the "war" against lupus, a chronic autoimmune disease, according to lupus specialists speaking at a press conference Wednesday held at Coex, southern Seoul, ahead of Lupus & KCR 2023.

The 15th International Congress on Systemic Lupus Erythematosus and The 43rd Korean College of Rheumatology Annual Scientific Meeting & 17th International Symposium are being held concurrently at Coex from Wednesday through Saturday. Some 1,500 lupus and rheumatology specialists from 50 countries are participating in the first in-person congress since the COVID-19 pandemic, according to Dr. Bae Sang-cheol of Hanyang University, congress chair of LUPUS & KCR 2023.

Although patient outcome has improved greatly in Korea, as the standard of lupus treatment in the country is ranked at the top globally, medical professionals noted that the latest lupus drugs are yet to be available and more attention needs to be paid to female patients of childbearing age.

Lupus is a “socially challenging disease” affecting mostly women of reproductive age.

“Compared to other illnesses, lupus is an ‘invisible disease,’ meaning that the symptoms might not be visible to those without the disease, and people might not know the severity of the disease. Patients may appear as if everything is fine,” said Dr. Shim Seung-cheol of Chungnam National University said at the press conference.

“Companies are generous and understanding of employees struggling with illnesses like cancer, but that is often not the case for lupus,” Shin said, advising that raising social awareness is crucial to creating an environment where people can understand and empathize lupus patients.

Dr. Lee Ji-soo, a rheumatology professor at Ewha Womans University Medical Center, echoed the view that women with lupus of reproductive age often have to deal with social isolation.

“Adequate policies for lupus patients of reproductive age are missing, meaning they are socially marginalized,” Lee added, calling for better policies, citing that pregnancy is a large health issue for female lupus patients.

Currently, there are around 20,000 to 30,000 lupus patients in South Korea, which is approximately 26.5 per 100,000 people, and 9 in 10 people with lupus are female.

Of the three drugs approved by the US' Food and Drug Administration for the treatment of lupus, only belimum approved in 2011, is available in Korea. The two latest medications, voclosporin and anifrolumab, have yet to enter the Korean market, as international pharmaceutical companies refrain from introducing unprofitable drugs.

Dr. Kwok Seung-ki, a professor specializing in rheumatology at the Catholic University of Korea, underscored the importance of a “game changer” drug for patients with debilitating conditions, adding that more research has to be done and information exchanged through academic congresses.

Lee of Ewha Womans University Medical Center saw hope in the use of AI and machine learning in the development of new treatments.

“In five years, patients will be able to monitor their health conditions at home and go to the hospital only when necessary," she said.