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Human Rights and Social Stigma Review for Leprosy Patients in Korea Advances in Infectious Diseases, 2021, 11, 73-83 https://www.scirp.org/journal/aid ISSN Online: 2164-2656 ISSN Print: 2164-2648 Human Rights and Social Stigma Review for Leprosy Patients in Korea Seungshin Lee1,2, David Ahn2, Justin Kim2, Cathy Park2, Kunmin Kim2, Alice Kim2, Chae Eun Kim2, Jisu Shin2, Timothy Cho2, Jonathan Jo2, David Park2, Tae Youn Kim2, Paul S. Chung2,3* 1School of Medicine, University of California, Irvine, CA, USA 2Youth with Talents, Fairfax, VA, USA 3Fuzbien Technology Institute, Rockville, MD, USA How to cite this paper: Lee, S., Ahn, D., Abstract Kim, J., Park, C., Kim, K., Kim, A., Kim, C.E., Shin, J., Cho, T., Jo, J., Park, D., Kim, Leprosy is a chronic disease caused by a low multiplying bacillus, Mycobacte- T.Y. and Chung, P.S. (2021) Human Rights rium leprae, which primarily affects the skin and the extremities. Multidrug and Social Stigma Review for Leprosy Pa- therapy (MDT) and Bacillus Calmette-Guérin (BCG) vaccinations are effec- tients in Korea. Advances in Infectious Diseases, 11, 73-83. tive at treatment of the disease, but social misconceptions about the disease https://doi.org/10.4236/aid.2021.111009 inhibit efficient health care for affected individuals. In South Korea, leprosy patients face social, economic, and political discrimination. Korean leprosy Received: April 16, 2020 Accepted: March 20, 2021 patients are isolated into Sorokdo island and face challenges such as diffi- Published: March 23, 2021 culty receiving education and limited job opportunities. Leprosy cognitively, emotionally, and socially impacts patients’ lives, and represents a serious so- Copyright © 2021 by author(s) and cial inequality issue. To raise awareness, dispel myths about the disease, and Scientific Research Publishing Inc. This work is licensed under the Creative to end patient discrimination that destroys families, we conducted case stu- Commons Attribution International dies based on scientific journals. The paper specifically focuses on difficulties License (CC BY 4.0). faced by Korean leprosy patients, and subsequent initiatives by the govern- http://creativecommons.org/licenses/by/4.0/ ment to aid patients. To reach the WHO’s target of health and wellbeing for Open Access all by 2030, we need to educate the masses about leprosy and address relevant social inequality issues. Keywords Leprosy, Sorokdo 1. Introduction History and Origins of Leprosy: Leprosy (Hansen’s Disease) is a chronic neurological disease caused by a pa- DOI: 10.4236/aid.2021.111009 Mar. 23, 2021 73 Advances in Infectious Diseases S. Lee et al. thogen, Mycobacterium leprae, a close relative of the tubercle bacillus [1]. M. Leprae has the longest doubling time of all known bacteria and has thwarted every effort at culture in the laboratory. The bacteria’s incubation period is about 5 years and it can take as long as 20 years for the symptoms to appear [2]. The prevalence of leprosy has been reduced extensively by the World Health Organiza- tion (WHO) through Multi-Drug Therapy (MDT) and Bacillus Calmette-Guérin (BCG) vaccinations, but incidences of this disease continue to occur with more than 690,000 new cases reported annually [1]. Means of transmission remain uncertain, but like tuberculosis, leprosy infection is thought to spread by the respiratory route, because lepromatous patients harbor bacilli in their nasal pas- sages [1]. The bacterium accumulates in the extremities of the body where it re- sides within the macrophage and infects the Schwann cells of the peripheral nervous system [1]. Lack of myelin production by infected Schwann cells and their destruction by host-mediated immune reactions lead to nerve damage, sensory loss, and disfiguration which are the hallmarks of leprosy. Ancient texts describe the existence of leprosy in China, India, and Egypt in about 600 BC, and skeletal remains bearing hallmarks of the disease that have been found in Egypt [3]. Leprosy is believed to have originated in the Indian sub- continent and to have been introduced into Europe by Greek soldiers returning from the Indian campaign of Alexander the Great [3]. From Greece, the disease is thought to have spread around the Mediterranean basin, with the Romans intro- ducing leprosy into the Western part of Europe [3]. Little is known about its pres- ence in sub-Saharan Africa except that the disease was present prior to the colonial era. From India, leprosy is thought to have spread to China and then to Japan and Korea, reaching the Pacific Islands like New Caledonia as recently as the 19th cen- tury [3]. In 1873, Armauer Hansen discovered the leprosy bacillus in skin biopsies but failed to culture M. leprae [3]. Possibly due to its exceptionally slow growth of the bacillus, which has a doubling time of 14 days, multiplying the bacteria in synthetic media seemed impossible, though metabolic activity can be detected [1]. It was only when it was discovered that the nine-banded armadillo, Dasypus novemcinctus, could be infected that sufficient quantities of M. leprae were ob- tained for biological and immunological analysis [3]. Challenges of Leprosy: Leprosy is two conjoined diseases [4]. The first is a chronic mycobacterial in- fection that elicits an extraordinary range of cellular immune responses in hu- mans [4]. The second is a peripheral neuropathy that is initiated by the infection and its accompanying immunologic events, but whose course and sequelae often extend many years beyond the cure of the infection and may have severely debi- litating physical, social, and psychological consequences [4]. Effective multidrug regimens are now used worldwide, and the infection in individuals is curable [4]. While the reported number of registered cases worldwide has declined in the last two decades, the reported number of new cases registered each year has re- mained the same (at 500,000 to 700,000) over the same interval [4]. In some DOI: 10.4236/aid.2021.111009 74 Advances in Infectious Diseases S. Lee et al. countries where leprosy is endemic, the number of new cases actually appears to be increasing, while in others decreasing trends are reported [4]. Mathematical modeling of the potential decline in leprosy incidence and prevalence, using various premises regarding the efficacy of treatment and prevention, suggests that the diseases will remain a major public health problem for at least several decades [4]. Leprosy remains a medical and scientific challenge of the first order, even though support for research on these diseases has declined substantially as other conditions have assumed greater global priority [4]. There are some inherent risk factors associated with leprosy. Those who have close and long-term contact with leprosy patients tend to have higher risk factors of developing leprosy [5]. Furthermore, when a close genetic relation- ship such as siblings, children, and parents was grouped together, there was an indication of increased risk [5]. However, multidrug therapy, which was rec- ommended for leprosy by the WHO starting in 1981, has proven effective at im- proving treatment efficacy and overcoming problems caused by drug-resistant strains of M. leprae [4]. Multidrug therapy has been very practical and successful in treatment of both multibacillary (MB) and paucibacillary (PB) leprosy [4]. Despite being cured through multidrug therapy, people with leprosy are often discriminated by society and the government, and encounter difficulty in getting married, receiving education and obtaining job opportunities. This paper focus- es specifically on the corollaries faced by Korean leprosy patients due to their physical abnormalities and demonstrates that currently, leprosy is more of a psychosocial problem than a public health problem. 2. Leprosy Patients’ Life in Korea For the past century, Leprosy patients have been targeted for discrimination as they have lived in a special, segregated social group in our society. During the Japanese Colonial period, colonial authorities took a strict quarantine policy and blocked any exposure of Leprosy disease to healthy civilians. Thus, during the time of Japanese rule (1910-1945), leprosy patients in Korea were exiled to Sorok Island [6]. The island was used as a prison camp for these patients, and hospital workers forced them into sterilizations and abortions [6]. Hansen’s disease pa- tients were heavily discriminated even by the Japanese clinicians [6]. Patients were forced to receive unnecessary surgeries such as abortions and vasectomies, and to work under violence [6]. Their corpses were used for experimentations [6]. Even after Japan’s rule in 1945, patients’ conditions did not improve. Recent investigations confirmed a 1948 slaughter of 84 leprosy patients [6]. South Korea abolished its anti-leprosy segregation policy in 1963, but human rights abuses on the island continued for decades [7]. Government officials con- tinued to relocate leprosy patients to the island as recently as 1991 [6]. In 2009, a bridge was built to connect Sorok Island and the mainland of Korea [6]. The bridge was used to end isolation and segregation, but the public’s distrust about patients’ disfigurements remains [6]. Some patients refuse to leave the island, DOI: 10.4236/aid.2021.111009 75 Advances in Infectious Diseases S. Lee et al. feeling unwelcomed by society, and many that have fled the island are returning [7]. Most returnees to the island are cured of leprosy, and free to live wherever they choose but chose the life in Sorok Island facing outside prejudices against leprosy [7]. For instance, Yu Myung-Sun, 61, who lived on Sorok until 1974, re- turned in 2008 after living with other former leprosy sufferers in a village near Seoul [7]. “People outside the village wouldn’t even look at me,” Yu said. “Res- taurants wouldn’t sell meals to us [7].” Despite being cured, she continues to wear a big pair of sunglasses to cover up black spots on her face caused by an- ti-leprosy medication [7]. Yu is one example of the discrimination that leprosy patients face.
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