The Korean Medical Bio Journalists Association, together with Rep. Jeon Jin-sook of the Democratic Party of Korea and Rep. Lee Ju-young of the New Reform Party, who are members of the National Assembly Health and Welfare Committee, held a symposium titled “Expanding Treatment Opportunities for Neglected Severe and Rare Diseases” at 2:00 PM on the 11th in Seminar Room 3 of the National Assembly Members’ Hall.
Kim Gil-won, president of the Korean Medical and Bio Journalists Association, said in his opening remarks, “Although the government announced the 2nd Comprehensive National Health Insurance Plan in February and presented measures to improve accessibility to new drugs for severe and rare diseases, many diseases and treatments are still blocked by the wall of health insurance listing.” He added, “We organized this symposium to seek specific measures to improve patient treatment accessibility.”
Rep. Jeon Jin-sook of the Democratic Party of Korea, who co-hosted the symposium, said in her congratulatory remarks, “I deeply sympathize with the suffering of patients with severe and rare diseases due to low treatment accessibility, and I will work to create a patient-centered institutional environment, such as improving the use of medicines.” Rep. Lee Ju-young of the New Reform Party, another co-host, said, “Through this symposium, we will discuss the direction of the government’s policy to enhance treatment accessibility for severe and rare diseases and specific improvement measures, and I will continue to look into this issue and devote myself to legislative activities.”
Eun-jin Choi, a researcher at the Korea Institute for Health and Social Affairs, who was the first to present, shared the need to strengthen the coverage of rare diseases that are in a relative blind spot in terms of treatment under the topic of ‘Current status of access to treatment for severe and rare diseases in Korea.’ It was revealed that although the government’s medical expense support for rare diseases is gradually being strengthened, there are still policy needs that need to be improved in various aspects.
Researcher Choi said, “There is a high demand for rare disease treatments, but both medical professionals and patients tend to have poor access to the information they need early. Customized treatment plans and social support are needed.” He continued, “It is necessary to increase the supply and accessibility of rare drugs, but it is also necessary to establish a foundation for securing evidence to ensure effectiveness.”
Next, patients suffering from severe and rare diseases were given time to speak about their struggles and the urgency of new drug treatments through their own voices. The first to come up on stage was Lee Dong-wook (pseudonym), who suffers from progressive pulmonary fibrosis. Progressive pulmonary fibrosis, which causes the lungs to harden continuously, has a poor prognosis, and on days when symptoms are severe, patients must rely on oxygen to breathe. In Lee’s case, he lost 15 kg after his treatment. Earlier this year, when his lung function continued to decline, his doctor recommended a new drug treatment for progressive pulmonary fibrosis and he began taking it. Fortunately, it was effective and slowed down the decline in lung function. However, the new drug is not covered by insurance and costs 1.5 to 3 million won per month. Lee said, “I have been paying health insurance premiums my entire life, but I am devastated by the reality that it is not covered when I desperately need help. I hope you understand that patients with progressive pulmonary fibrosis have a short survival period, so there is no time left.” He appealed earnestly for coverage.
Next on stage was Kim Gap-bae, a patient with obstructive hypertrophic cardiomyopathy who had suffered from physical and psychological distress due to his disease. Due to the nature of the disease in which the heart muscle thickens, he suffered from frequent chest pain and dizziness, and since last year, his symptoms have become so severe that he could no longer endure them as his heart has thickened even more. Then, he started taking a new drug at the recommendation of his doctor, and in just a week, his condition improved to the point where he was able to return to his dreamed-of daily life. Kim said, “I can now live a peaceful daily life again thanks to the new drug, but in order to receive the new drug for obstructive hypertrophic cardiomyopathy, I have to pay over 2 million won per month as a non-covered expense. Furthermore, for the sake of young patients who are just starting their social lives, I hope that the new drug will be covered by health insurance as soon as possible so that many people can regain their health.”
The presenter, Professor Seung-rae Yoo of Dongduk Women’s University College of Pharmacy, shared an analysis of the current status of pharmaceutical spending by treatment group for new drugs through the ‘Results of the Health Insurance Finance Research’. Professor Yoo pointed out that, “Since the introduction of the pharmaceutical cost optimization plan, the expenditure ratio for new drugs listed over the past six years was 13.5% of the total pharmaceutical cost, which was the lowest among the 26 OECD countries surveyed.” He continued, “The proportion of domestic new drug spending for disease groups with a high disease burden was found to be very low, so there is a need to improve accessibility to new drugs, especially in these disease groups.”
In the second panel discussion, panelists including Lee Jung-kyu, Director of the Health Insurance Policy Bureau of the Ministry of Health and Welfare; Choi In-hwa, Executive Director of the Healthcare Innovation Department of the Korea Pharmaceutical Industry Association (KRPIA); Lee Eun-young, Director of the Korean Patient Organizations Association (KAPO); Kim Jin-seok, Professor of Hematology at Severance Hospital; and Kwon Seon-mi, Medical Academic Director of the Korean Medical Bio Journalists Association (JoongAng Ilbo Health Media Reporter) participated in a heated debate on ways to strengthen the coverage of patients with severe and rare diseases and improve health insurance finances.
KRPIA Executive Director Choi In-hwa stated, “We need to focus on strengthening coverage rather than regulations to increase accessibility to new drug treatment for patients with severe and rare diseases.” He added, “In particular, the reduction of the economic evaluation omission system, which was the only window for listing new drugs for severe and rare diseases, is a major concern in terms of patient treatment accessibility. Rather than drastic changes in the drug pricing system, we need to start the discussion by considering whether the cost of spending on new drugs within the health insurance finances is appropriate, as suggested by the previously introduced health insurance finance research results.”
Lee Jin-han, medical journalist and doctor [email protected]
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2024-09-12 13:40:32