海角大神

海角大神 / Text

South Korea struggles to overcome cultural stigma of AIDS

HIV/AIDS patients have long found it difficult to find medical care in South Korea. But as the number of cases rises, so too does the collective voice of victims and their supporters.

By John Power , Correspondent
Seoul, South Korea

It did not take long for Lee Jong-nam to grasp how his caretakers viewed patients with HIV/AIDS.

When he arrived at the Sudong Yonsei Sanitarium in 2013, South Korea鈥檚 only long-term care center for HIV/AIDS patients, he handed nurses 100 pages of medical history, only to have it returned 30 minutes later with assurances it had been thoroughly reviewed.

Nights were often humiliating for Mr. Lee 鈥 whose diagnosis left him paralyzed on one side听鈥 as staff ignored his calls for assistance in relieving himself.听Relatives had to provide vital medication, and verbal abuse was common.

Once home to dozens of patients, Sudong's designation as a long-term care facility for HIV/AIDS patients was revoked in December 2013. Lee, which isn鈥檛 his real name, left five months later.

The center鈥檚 tarnished past has made it a poignant symbol of the fear and disdain that HIV/AIDS patients often evoke in South Korea. Many risk being ostracized by family and friends, saddled with a stigma that has its roots in Confucian beliefs that still thrive alongside the country鈥檚 advanced economy and pop culture juggernaut.

Kim Jae-cheon, an HIV/AIDS activist, says that many Koreans believe people with the illness are simply bad and that they bring shame upon their community. In a society dominated by conservative views of sex, HIV/AIDS is also often associated with the LGBT community and prostitutes, both of which are viewed听negatively here.

鈥淥nce they find out their [child] is infected with HIV, then they will ignore it,鈥 says Mr. Kim. 鈥淪ometimes they don鈥檛 collect their body when they die.鈥澨

While still uncommon, HIV has become markedly more prevalent in South Korea since its first case in 1985. The country recorded 1,280 cases between 1985 and 2000. Over the past 16 years, that number has jumped to more than 13,000.

A lasting stigma

The government鈥檚 decision to revoke Sudong鈥檚 designation followed a flood of听reports of negligence and abuse at the center, including the alleged rape of one patient and early death of another.

But more than two years later, the patients鈥 fates remain precarious. A number of them remain at Sudong. The rest are scattered among non-medical facilities that activists say are ill-equipped to provide adequate care.

Nanuri Plus, anHIV/AIDS听advocacy group, has documented more than two dozen health facilities that have refused to admit former Sudong patients for fear of spreading the virus.

鈥淓ven medical personnel are afraid of people living with HIV,鈥 says Kim, who works for the group. 鈥淭hey are afraid of being infected.鈥

Nanuri reports that three patients who were previously at Sudong听have died since the center was downgraded, including one from suicide. In 2005, a study by the National Human Rights Commission of Korea found that HIV/AIDS听sufferers are 10 times more likely to commit suicide than the average Korean. The country has one of the highest suicide rates in the world.听

The government says it is illegal for health care providers听to refuse treatment to HIV/AIDS patients, but so far it has appeared unwilling to intervene more forcefully. Authorities have yet to punish anyone for mistreatment or denial of care.

鈥淚n our opinion, the legal punishment should be handled by the court,鈥 the Ministry of Health said in statement, while noting that the National Human Rights Commission had found 鈥渘othing significant to report鈥 in its investigation.

The ministry introduced new subsidies for the long-term care of low-income HIV/AIDS patients in January.听But Son Moon-soon, the president of Korean Network of People Living with HIV/AIDS, says the government has 鈥渘o will鈥 to act, pointing to other funding cuts.

鈥淗ospitals not receiving people is a problem,鈥 he says, 鈥渂ut the government itself has no determination about AIDS. It thinks we should be thankful that it gives out medication."听

Life after Sudong

Today, the health and even location of many of the more than 50 original patients from Sudong remain unclear. Advocates charge that the center has denied them access to monitor their wellbeing.听

Nonetheless, both advocates and the government agree that some patients remain at the maligned facility and that others now reside at non-medical facilities, such as shelters run by religious charities.

Ben Wagner, a longtime human rights activist in South Korea, says he plans to file an emergency complaint about the neglect of Sudong's former patients to the United Nations Human Rights Committee. He says their treatment amounts to a serious human rights violation.

"The loss of life and continued suffering since 2014 is evidence of that," Mr. Wagner says.

Since leaving Sudong, Lee has recovered from his paralysis. He receives treatment at another hospital and lives alone in Seoul. He found work at non-profit organization that helps the poor. Apart from his younger sister, he hasn鈥檛 told anyone in his family about his diagnosis.听

鈥淢y mother is more than 80 years old,鈥 he says. 鈥淚f she heard about this, I鈥檓 worried she wouldn鈥檛 know what to do.鈥