UPDATE 1: Please see the March 1, 2016 follow-up article in The Christian Science Monitor: “South Korea struggles to overcome cultural stigma of AIDS”: “ . . . more than two years later, the patients’ fates remain precarious.”
UPDATE 2: Please see the September 14, 2016 article in The Diplomat: “AIDS in South Korea: Out of Sight, Out of Mind” for in-depth background on Sudong Yonsei Hospital.
By Benjamin Wagner (Int’l Advocacy) and Kwon Mi-ran (Nanuri+)
It might seem unthinkable that AIDS patients in a developed country in 2014 would be denied adequate medical care, especially after having already been subjected to neglect and abuse by the very hospital entrusted to look after them.
Yet that is exactly the situation currently facing dozens of critically-ill AIDS patients in South Korea. As experts gather in Melbourne this week for the world’s largest conference dedicated to fighting HIV/AIDS and associated stigma and discrimination, the patients of Sudong Yonsei Hospital in Seoul are caught in a desperate limbo.
Following shocking abuse by hospital staff that culminated in the rape of one patient and death of another, the Korea Centers for Disease Control stripped the center of its license. But with the KCDC failing to provide a suitable alternative facility to what is the only long-term care center for AIDS sufferers in the country, more than 30 patients now have nowhere to go.
Meanwhile, ten other patients have been transferred to the National Police Hospital where they report yet more neglect and being denied necessary treatment and care.
The KCDC’s failure to rectify the situation marks its second betrayal of patients after it ignored allegations of mistreatment at Sudong first raised in 2011. Residents of Sudong have reported being denied human contact and not being asked about their condition by a medical professional even once. Some had their requests to be discharged ignored because the hospital insisted on obtaining permission of family members with whom patients had long lost contact.
In an environment supposed to facilitate healing and rest, patients describe being served leftover food and been surrounded by mice and bedbugs. One elderly resident in his 70s recounted the exhausting and degrading ordeal of suffering repeated cycles of infection and recovery because of the mishandling of his catheter.
Tragically, one patient took the most drastic step possible to escape these dire circumstances and tried to end their own life.
Despite such an appalling litany of neglect and abuse, it was only when a patient died from mistreatment in August last year that the official government agency was moved to close the center.
Shamefully, the plight of the patients at Sudong is not an isolated case of mistreatment of those living with HIV/AIDS in South Korea. In a modern country with world class medical facilities and easy access to antiretroviral therapy, there is no reason why people with HIV/AIDS should not be able to live long, comfortable and productive lives. In fact, a recent study found that some people living with HIV in the United States, particularly those diagnosed and treated before their CD4 counts fell below 350 cells/mm3, “now have life expectancies equal to or even higher than the US general population.”
But not in South Korea where, despite the country’s wealth and capacity for early diagnosis and effective treatment, governmental policies and prevailing societal prejudice conspire to destroy the dignity and quality of life of people living with HIV/AIDS and drag the nation back to the 1980s where an HIV positive diagnosis was a death sentence.
Today in Korea, the stigma and discrimination is still so extreme that public and private hospitals routinely refuse to treat people living with HIV/AIDS. And the very few that do often segregate them from other patients, forcing them to shower and dine in separate areas, pandering to stigma and the mistaken belief that people with HIV/AIDS can easily infect those around them even though Korean medical professionals know this isn’t true.
The stigma surrounding HIV/AIDS is so intense in South Korea that the National Human Rights Commission of Korea has estimated that Koreans living with HIV are 10 times more likely to commit suicide than the general population, which already has one of the highest suicide rates in the world.
Much of the stigma is encouraged at an official level, by government policies that misrepresent the nature of the disease. Korea continues to subject native English teachers to mandatory HIV testing, reserving the right to refuse or cancel their visa in the event of a positive test result. This is despite overwhelming evidence and a UN case decision finding that such policy approaches are ineffective at halting the spread of the disease and violate international law.
As Joesph Amon, director of the Health and Human Rights Division at Human Rights Watch, notes, “The international community has been clear: mandatory HIV testing and travel restrictions based upon HIV status violate human rights and cannot be justified for public health interests. Indeed, the high levels of stigma caused by linking HIV and mandatory testing to foreigners has made many ethnic Koreans choose to forgo testing due to fear of prejudice.”
The Korean government’s policies have heaped on the stigma already surrounding the disease, discouraging people from getting tested voluntarily or seeking treatment. These perverse policies can have fatal consequences as Koreans are diagnosed too late to effectively control the disease.
The KCDC reports, “The number of Koreans diagnosed with human immunodeficiency virus (HIV) infections is increasing annually” and further notes an “increasing late diagnosis of HIV infections in South Korea” with CD4 counts less than 200 cells/mm3. Koreans are not only being diagnosed with HIV later, they are also becoming infected with HIV earlier: A 2013 KCDC study reports that as “The rate of HIV infection is increasing in [Koreans] in their 20s…we can expect a sharp increase in the number of HIV-infected people who are in their 20s in the upcoming 5 years.”
Joseph Amon explains, “The government of South Korea needs to do more to ensure that people living with HIV have access to care and treatment without discrimination. At the opening of the International AIDS Conference UN Secretary General Ban Ki-moon paid tribute to those putting human rights at the forefront of the fight against HIV. By contrast, the government of South Korea is failing to protect the rights of people living with HIV and failing to confront the stigma and discrimination which fuels the epidemic and drives people away from HIV testing and treatment.”
Not only is South Korea behind international best practice on dealing with the issue, it has managed to mislead the international community about its treatment of people living with HIV/AIDS. Following a similar announcement in 2010, South Korea claimed at the 2012 International AIDS conference in Washington, D.C. that it had removed all travel restrictions for people with HIV/AIDS, a flagrant misrepresentation of reality when foreign residents’ visa eligibility continues to be tied to HIV-free status. This dishonest characterization has allowed the Republic of Korea to receive unearned praise from UNAIDS, the UN program on HIV/AIDS. In fact, despite the government’s broken promises concerning the removal of all of its HIV-related restrictions, UNAIDS continues to list the country as “green,” or restriction-free, on its map of countries with and without HIV/AIDS-related travel restrictions.
At a time when global attention is focused on the issue of HIV/AIDS, it is vital that the international community is made aware of the reality of the perilous situation facing those living with HIV/AIDS in South Korea, including the patients at Sudong.
We call on UN Secretary General Ban Ki-Moon, UNAIDS Executive Director Michel Sidibe and the participants of the 20th International AIDS Conference in Melbourne to give this issue the attention it deserves.
If Ban and Sidibe are serious about the statements they’ve made in the conference opening they will press the government of South Korea to address this urgent situation. Otherwise the rhetoric and good wishes, and the pomp and ceremony, of the conference will have little meaning to those pushed out onto the streets in Seoul.