Rare and Incurable Patients Appeal to Big 5 Hospital Directors: "Leaving Threatens Our Lives... Please Stay"

"Missing Treatment Leads to Irreversible Disability"

Following the collective resignation of residents, medical school professors have decided to reduce their working hours, prompting patients with rare and intractable diseases to appeal to the directors of the so-called 'Big 5' hospitals (Seoul National University, Severance, Samsung Seoul, Seoul Asan, Seoul St. Mary's Hospital) to "retain the attending professors."

The Korea Rare and Intractable Disease Alliance released a press statement on the 5th, revealing a letter addressed to the directors of the major treatment institutions, the Big 5 hospitals, urging them to guarantee the right to receive treatment. The letter was written by Chairman Kim Jae-hak, who is battling a rare disease called Charcot-Marie-Tooth disease. This disease damages motor and sensory nerves due to genetic mutations.

Kim Jae-hak, president of the Rare and Intractable Diseases Association, is discussing the difficulties faced by patients at a meeting held on the afternoon of the 28th of last month at the Korea Rare and Intractable Diseases Association in Seodaemun-gu, Seoul.
[Photo by Yonhap News]

In the letter, Chairman Kim stated, "I sincerely want to convey the difficult situation of 800,000 rare and intractable disease patients and 2 million family members through handwritten words, but due to decades of illness, my hands are impaired, so I apologize for having to appeal in this way." He added, "Because the number of patients with the same disease is small due to the nature of the illness, primary and secondary medical institutions cannot even provide treatment or care for mild symptoms, so most patients inevitably flock to the 'Big 5' hospitals, which have extensive experience in treating rare diseases."

Chairman Kim also expressed great concern among rare and intractable disease patients regarding the news that medical school professors will work 52 hours per week. He said, "I read articles that professors are adjusting outpatient and surgery schedules," and appealed, "I ask the hospital directors to hold on to and persuade the doctors at each hospital."

He emphasized, "For us rare disease patients, missing the treatment window can result in irreversible disabilities or even loss of life. Amid the countless unsettling news every day, only the professors' official promise to stay by the patients' side is the sole way to alleviate the anxiety of patients and their families."

Chairman Kim's appeal was delivered to the directors of the 'Big 5' hospitals through the Office for Government Policy Coordination on the 31st of last month.

This content was produced with the assistance of AI translation services.