About 40% of people living with HIV are in their 50s or older… people aging together through ‘mutual care’ - 경향신문

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Mr. A (58), a long-term survivor living with human immunodeficiency virus (HIV), is being interviewed by the Kyunghyang Shinmun at his home in Jungnang-gu, Seoul, on the 21st of last month. Reporter Kwon Do-hyun

On the morning of the 21st of last month, in a semi-basement in Jungnang-gu, Seoul. Perched on the edge of his bed, Mr. A (58) folded his fingers one by one, counting the phone numbers he remembered. “Mother, older brother, older sister, and….” The counting stopped as the fourth finger folded. The last time he spoke with his family was about 15 years ago.

Gazing at his folded hand, Mr. A shifted his eyes to a calendar stuck at July of this year. “I thought I had a fatal illness, so I changed my number and cut ties first. If I had known I would still be alive until now….” All over the yellowed wallpaper next to the calendar were names and phone numbers. Mr. A is a person living with human immunodeficiency virus (HIV).

With advances in treatment, more people infected with HIV are living long term. In tandem, the number of older adults living with HIV is rising. Yet systems focused solely on preventing acquired immunodeficiency syndrome (AIDS) and entrenched social stigma are cementing their isolation. Observers say a systematic approach to support treatment and care is needed so they can conduct their daily lives smoothly.

According to data that Democratic Party lawmaker Seo Mi-hwa, a member of the National Assembly Health and Welfare Committee, received from the Korea Disease Control and Prevention Agency on the 5th, the number of Korean nationals living with HIV rose from 7678 in 2012 to 17557 last year, more than doubling. This is the total cumulative number of people living with HIV, not the annual number of new infections. By contrast, the number of new infections, including both Koreans and foreigners, fell from 1223 in 2019 to 927 last year, showing a downward trend. This suggests that the survival time of people living with HIV is increasing.

The aging of people living with HIV is also striking. As of last year, 7632 people aged 50 and older accounted for 43.5% of the total. Those in their 60s grew from 616 in 2012 to 2603 last year, more than fourfold, and those in their 70s and older increased from 196 to 1228 over the same period, more than sixfold.

Mr. A has lived with HIV for 30 years. Working in construction, he learned of his infection at a hospital he visited before back surgery in 1996. Today HIV is classified as a chronic condition manageable with medication, like hypertension or diabetes, but at the time it was regarded as a fatal illness. Hearing the doctor say his survival would be “at most five years,” Mr. A saw himself as terminal. “My worries only deepened alone, and because I could tell no one, I drank every evening,” he recalled. In the end, at age 42, he left his workplace entirely, despite colleagues urging him “Do not quit.”

The stigma of infection led to isolation and poverty. Hiding his status for fear of harming others, he grew distant from acquaintances. Mr. A said, “I began to avoid people and could not make eye contact even at the market,” adding, “Though living in the middle of the city, I was no different from someone cut off from the world.” The threshold for care was high. Missing the window for early treatment, his immune system collapsed over the next decade. His weight, once 85㎏ on a large frame, fell to 41㎏.

Mr. A’s “life clock” began to tick again when he met a peer, activist Lee Se-hyeon (57). The two were connected in July through the mutual-care project of the incorporated association Hamkke Seobom. All care workers are middle-aged and older people living with HIV who have completed standardized training. They mainly care for people in the ‘care blind spots’ whose family ties are severed like Mr. A’s or who have difficulty getting around.

The reason people living with HIV care for one another is that it is rare for HIV-negative people to step in. It can also be uncomfortable for someone living with HIV to receive care from an HIV-negative person. Peer care varies, from visits to housing support, but the largest share is accompanying people to the hospital. Activist Lee Se-hyeon said, “When they go with an HIV-negative helper to an infectious diseases clinic, the department itself is unfamiliar, so their infection status is easily revealed. Once that is known, HIV-negative helpers may refuse to provide care, and above all, people living with HIV themselves fear rumors spreading in the community.”

As Mr. A traveled to and from the hospital with Activist Lee and took his medications, his health improved rapidly. Within a month of hospital visits, his weight increased from 41㎏ to 55㎏. Rolling up his pant legs and sleeves, Mr. A said, “I have filled out this much. I did not know back then that the medicines were this effective, that even with infection one could live long. Now I can even open bottle caps easily by myself.” Of Activist Lee, Mr. A explained, “He grasps what the doctor says faster than I do, and when I get stuck, he neatly organizes and asks questions for me like a teacher.”

Mr. A (58), a long-term survivor living with human immunodeficiency virus (HIV), is being interviewed by the Kyunghyang Shinmun at his home in Jungnang-gu, Seoul, on the 21st of last month. Reporter Kwon Do-hyun

As the population of long-term survivors grows older, there are calls to close care gaps and strengthen the safety net. But persistent social stigma and exclusion are still cited as major obstacles. Misperceptions that fail to distinguish HIV from acquired immunodeficiency syndrome (AIDS) and see it as a “fatal disease” remain.

According to the Korea Disease Control and Prevention Agency, consistent use of antiretroviral therapy suppresses the virus so that HIV does not progress to AIDS, allowing daily life to be maintained. It was established long ago that when the virus is undetectable in the blood, it is not transmitted to others even through sexual contact.

It is also a problem that discrimination is repeated even in medical settings that know these medical facts well. Some hospitals and care facilities refuse consultations, surgeries, and admissions for people living with HIV, citing other patients’ reactions or infection control. They say things like “Go to a larger hospital first.” This is why people living with HIV keep filing petitions with the National Human Rights Commission seeking redress for discrimination such as surgery refusals.

Jeong Min-seok, an activist with Hamkke Seobom, said, “Even now in 2026, it blatantly happens that even tertiary general hospitals refuse co-managed surgeries. Even if you file a complaint with the National Human Rights Commission, it takes a long time to reach a conclusion, and since you must continue receiving infectious disease treatment, it is hard to press the issue strongly, which is a dilemma.”

A bill is being pursued to institutionally strengthen care for people living with HIV, which had been carried out mainly by civic groups. Representative Seo Mi-hwa is preparing a bill to fully revise the current ‘AIDS Prevention Act’ into the ‘Act on the Prevention of Human Immunodeficiency Virus Infection and Support for People Living with HIV’ (tentative title).

The aim is to improve the current focus on AIDS prevention and control and to establish a legal basis for designing systems that provide long-term support for the health and daily lives of people living with HIV who do not progress to AIDS. The bill is being reviewed to specify a clear distinction between HIV infection and AIDS, the rights to health and treatment for people living with HIV, guarantees for surveys on their status, and participation in policymaking.

Representative Seo said, “The number of people living with HIV is increasing and they are aging, but laws and policies remain stuck in the perspective of AIDS prevention and management. We need to move away from laws that view people living with HIV as subjects to be managed and controlled and shift to a legal framework that, alongside prevention, supports treatment, daily life, care, and self-reliance.”

For people living with HIV who, like Mr. A, wish to regain the will to live, changes in the system and the accompanying shift in perceptions can be a great source of strength. Mr. A said, “At first I just wished to live two more years. After two years, once I passed my 60th birthday and the national pension started, I planned to hand over at least the deposit to the upstairs neighbor who had been bringing me porridge, and then leave,” adding, “Now I feel I can live five or even ten more years. I even think about putting on just 10kg more.”

Mr. A (58), a long-term survivor living with human immunodeficiency virus (HIV), is being interviewed by the Kyunghyang Shinmun at his home in Jungnang-gu, Seoul, on the 21st of last month. Reporter Kwon Do-hyun