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Homegrown leukemia treatment changes lives of five-year-old and his family

Published: 02 Dec. 2024, 17:17 Updated: 02 Dec. 2024, 18:01

LEE SOO-JUNG
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Lee Ji-han, a five-year-old boy diagnosed with acute lymphoblastic leukemia, poses for a photograph. [JOONGANG ILBO]

Lee Ji-han, a five-year-old boy with leukemia, dreams of becoming a KTX high-speed train driver when he grows up.

In May last year, however, Lee suffered from a stomachache and visited a small clinic in the city of Gumi, North Gyeongsang, where the doctor advised Lee to seek treatment at a tertiary hospital as soon as possible. About a month later, Lee was diagnosed with acute lymphoblastic leukemia at Seoul National University Hospital with a bleak outlook.

Results of whole genome sequencing showed Lee was a “high-risk patient” whose treatment would be challenging.

The boy's mother, Lim Mi-kyung, 45, said her "mind was blank for a while” when she was told that her son’s case would be "hard to treat." She said she had never imagined her child would have leukemia.

Against the daunting odds, Lee underwent multiple rounds of chemotherapy and blood transfusions. However, the efforts led to a spike in the child’s liver somatic index and a high fever.

The journey to receive constant treatment was also arduous. The mother and her child had to take the KTX every week from North Gyeongsang to Seoul, which took up several hours, with Lee’s father quitting his job to take care of the family’s second child.

Kang Hyoung-jin, a pediatric professor at Seoul National University Hospital, spoke about the treatment options for Lee. “The child has a high possibility of a relapse even after receiving a stem cell or bone marrow transplant, and if so, the survival rate would drop below 30 percent.”

In particular, having the transplant at a young age could trigger medical complications down the track, such as infertility and hair loss.

Pediatric professor Kang Hyoung-jin at Seoul National University Hospital, left, and Lee Ji-han, five-year-old patient [JOONGANG PHOTO]

Considering the potential side effects, Prof. Kang assessed that CAR-T therapy would be the best in Lee’s case.

During CAR-T therapy, doctors extract immune cells from a patient’s body, modify them to attack cancer cells and incubate them. Those incubated cells are later injected into the patient’s body.

Of the seven medications authorized for use worldwide, Kymriah from Swiss pharmaceutical corporation Novartis is the only one permitted for use in Korea. Domestic patients treated with Kymriah now pay around 6 million won ($4,270) per single dose under the country's national health insurance benefit if their cancer cells takes up over five percent of their bone marrow.

Lee, however, could not receive the health care benefit due to the limited scope of his health insurance coverage. It left Lee in a blind spot, a situation where his family had to pay 400 million won — without any state help.

However, a donation of 300 billion won from the family of late Samsung Chairman Lee Kun-hee (1942-2020) became a lifeline to Lee and his family. The fund enabled domestic medical professors at Seoul National University Hospital to develop a homegrown CAR-T treatment, which Lee received in April this year.

“There have been no side effects other than mild fever after CAR-T treatment,” Lim said.

Lee has been receiving screenings to try and detect the remaining cancer cells in his blood, and the indicator has remained at zero for seven consecutive months.

“Our family lived in tears every day last year and now are gradually returning to our normal routine and lives thanks to the CAR-T treatment,” Lim said.

“We have received a great benefit because we couldn't have dared to think of pursuing the CAR-T treatment and the post-treatment diagnosis due to the expensive cost,” Lim added, noting the family is “thankful to Chairman Lee.”

Pediatric professor Kang Hyoung-jin at Seoul National University Hospital [JOONGANG PHOTO]

The domestically developed CAR-T treatment is an embodiment of 17 years of dedication by Prof. Kang and the research team at Seoul National University Hospital.

Kang began his CAR-T research in 2007 along with his mentors and colleagues.

Kang’s research was authorized as clinical research for high-risk regenerative advanced therapy for the first time in the country in 2021, and it was funded by the government a year later.

If it were not for the donation from Samsung, Prof. Kang's research would have ended with only five patients being treated. The donation has become the backbone of sustaining the medical effort.

“The donated funds helped the research expand and develop,” Prof. Kang said.

BY RHEE ESTHER, LEE SOO-JUNG [[email protected]]