Three weeks of medication costs 10 million won... 'I am afraid of dying and leaving behind my two-year-old child,' pleads a mother in her 30s

Even during the Chuseok holiday, when families should be spending time happily together, the suffering of patients with rare and intractable diseases continued. They appealed to the state to alleviate their treatment burden by applying health insurance to new drugs that can treat their conditions.

Kim, a 73-year-old patient with chronic obstructive pulmonary disease (COPD), sent a letter to Money Today describing his symptoms before diagnosis and his current condition. He stated, "I have not smoked for more than 30 years and was healthy, but one day I started feeling short of breath and even felt as if my anus were falling out," adding, "The following year, my breathing became labored, and severe coughing at night made it impossible to sleep." He later received a COPD diagnosis after transferring to a respiratory internal medicine department.

Although he began inhaler treatment, he continued to experience shortness of breath and coughing, leading to a recommendation from his workplace to take leave, which ultimately forced him to resign. His breathing became so obstructed that he was transported to the emergency room via 119, and because he could not even swallow water, his weight dropped from 73 kg to 59 kg.

The turning point was the dupilumab treatment. After receiving the second dose of the drug, breathing became easier, and his lost sense of smell gradually returned. Now, he can climb stairs well and is back at work.

However, high treatment costs have been squeezing Kim. "I spent tens of millions of won on treatment costs while going back and forth to the hospital for four years, and my saved severance pay disappeared," Kim said. "I am afraid of returning to that time when I could not breathe because I could not afford the medication. It would be good if the treatment were covered by insurance so I could breathe comfortably," he expressed his wish.

COPD is a chronic respiratory disease in which airways and alveoli are damaged by inflammatory responses, restricting airflow. It is characterized by chronic cough, worsening dyspnea, sputum, and chest tightness. It ranks as the third leading cause of death among the top 10 causes identified by the World Health Organization (WHO). Patients often do not realize their lung function has been impaired by more than 50% and only seek hospital care after their condition has significantly worsened. The monthly treatment cost for dupilumab, a new drug for COPD, is approximately 1.5 million won.

A woman in her 30s living in Busan was diagnosed with pulmonary arterial hypertension at 26 weeks of pregnancy with her second child. Pulmonary arterial hypertension is a disease with a poor prognosis, where blood vessels from the heart to the lungs gradually narrow, potentially leading to heart failure and sudden death. Without treatment, the average survival period is only three years. One-quarter of patients die of sudden death.

A significant proportion of patients are women in their 30s to 50s. Their battle with the disease leads to the collapse of the entire family. Patients live in anxiety and fear that they may not be able to be with their children due to the threat of sudden death from heart failure.

A new drug for pulmonary arterial hypertension with a novel mechanism, 'Winrevair,' has appeared after more than 20 years, but patients find it difficult to use because the cost reaches 10 million won for a three-week course of treatment. "My first child is only about two years old, and I worry that I might suddenly die," A said. "It would be good if the new drug were covered by health insurance so that patients do not give up and can have hope. Please, the government must help us," she pleaded.

Winrevair is a drug for which Korea MSD has applied for coverage under the government's 'Rare Disease Treatment Rapid Listing Pilot Project.' The Korean Society of Pulmonary Hypertension and patient groups also issued a statement requesting the rapid listing of Winrevair.

Shim Jang-nae-gwa (Prof.) at Yonsei University Severance Hospital stated, "In the treatment of pulmonary arterial hypertension, lung transplantation is ultimately the last resort," explaining, "Patients waiting for a transplant have no other treatments available to use, and donors are also scarce, so their disease worsens during the waiting period or they eventually die." He further emphasized, "If innovative new drugs for pulmonary arterial hypertension can be used in a timely manner, it may delay the time until lung transplantation is reached or make lung transplantation unnecessary."