Hahn Seung-min, a professor at the pediatric department at Severance Hospital, speaks during an interview with the JoongAng Ilbo on Sept. 15.KANG JUNG-HYUN
A child with leukemia had few options left. Repeated chemotherapy had failed to clear the cancer, and a hematopoietic stem cell transplant was not possible. For a 9-year-old going by Ji-hoon, a collaboration across institutional lines between two hospitals and a huge donation from Samsung opened another door.
A routine checkup in January of last year led to an acute lymphoblastic leukemia diagnosis. The test showed a low platelet count and elevated white blood cell levels. Chemotherapy followed, but the cancer persisted. Tests for measurable residual disease continued to detect leukemia cells, which signaled the need for more aggressive treatment to reduce the risk of relapse.
“Ji-hoon wasn’t responding well to chemotherapy,” said Hahn Seung-min, the patient’s attending physician and a professor of pediatrics at Severance Hospital. “We needed to consider a more intensive treatment.”
A hematopoietic stem cell transplant would normally have been the next step. But Ji-hoon has Down syndrome, which was expected to increase the risk of serious treatment-related toxicity and complications.
“A transplant is an effective treatment, but it can lead to long-term complications such as chronic graft-versus-host disease and reduced fertility,” Dr. Hahn said. Graft-versus-host disease occurs when transplanted immune cells attack the patient’s body and can affect multiple organs.
The medical team identified that CAR-T therapy was the best alternative. The treatment removes a patient’s T cells, re-engineers them to recognize and attack cancer cells, and returns them to the body.
But Kymriah, the only commercially available CAR-T therapy in Korea, did not meet the criteria for national health insurance coverage in Ji-hoon’s case. Coverage is available to patients with relapsed or refractory disease when cancer cells account for at least 5 percent of bone marrow cells.
Ji-hoon still had residual leukemia cells, but the level fell short of that threshold.
“Without insurance coverage, the drug alone costs about 400 million to 500 million won [$295,000 to $368,800],” Hahn said.
A sculpture depicting the late Samsung Chairman Lee Kun-hee hangs in the first-floor lobby of Seoul National University Children's Hospital on July 26, 2024.JANG JIN-YOUNG
The breakthrough came through a multicenter clinical study involving two hospitals. At the suggestion of the Severance team, doctors there worked with researchers at Seoul National University Hospital to draw up a treatment plan.
Ji-hoon’s T cells were collected at Seoul National University Hospital on Sept. 3 last year and used to produce the therapy. About two weeks later, the treatment was administered at Severance Hospital, where Ji-hoon had been receiving care. The Severance team then took charge of managing side effects and follow-up care.
The treatment came at no cost through the Lee Kun-hee Child Cancer and Rare Disease Project, funded by a 300 billion won donation made in 2021 by the family of the late Samsung chairman. The initiative runs through 2030 and supports diagnosis, treatment and research for children with cancer and rare diseases nationwide. Seoul National University Hospital leads a network of medical institutions that seeks new treatment options for children who have reached the limits of conventional care.
The treatment’s effect became clear in a bone marrow test about a month after the infusion. “The leukemia cells had gradually declined during chemotherapy but never disappeared,” Hahn said. “After CAR-T therapy, they were no longer detectable. Ji-hoon’s family was overjoyed when they heard the results.”
Hahn Seung-min, a professor at the pediatric department at Severance Hospital, speaks during an interview with the JoongAng Ilbo on Sept. 15.KANG JUNG-HYUN
A year has passed without major complications, and Ji-hoon has been able to return to everyday life. School and other activities outside the home are now cautiously within reach again. But it will take about five years of monitoring before doctors can determine whether the cancer is cured. Until then, bone marrow tests are planned every three months.
“A multicenter network that allows hospital-produced CAR-T therapy to reach children who need it — no matter where they live or which hospital treats them — can greatly improve access to care,” said Kang Hyoung-jin, a professor of pediatrics at Seoul National University Hospital and the leading researcher of the clinical study.
Hahn expressed gratitude for the availability of a clinical trial.
“Some children could benefit from the treatment but fall outside the insurance criteria,” Hahn said. “Having a clinical trial as another option is something we’re grateful for, both for our patients and as doctors.”
This article was originally written in Korean and translated by a bilingual reporter with the help of generative AI tools. It was then edited by a native English-speaking editor. All AI-assisted translations are reviewed and refined by our newsroom.
