Lee Gaeho to Host Forum on "Strengthening Health Rights of Rare Disease Patients" at National Assembly on the 16th

Ultra-Rare Diseases Left in the Gap Despite Rare Disease Designation System
Medical Community, Field Experts, and Government Gather to Seek Systemic Improvements
"Hopeful Support Measures Needed for Patients and Families"

Lee Gaeho, a lawmaker from the Democratic Party of Korea representing Damyang, Hampyeong, Yeonggwang, and Jangseong in South Jeolla Province, announced on September 12 that he will host a policy forum titled "Policy Discussion on Improving the Health Insurance System to Strengthen the Health Rights of Rare Disease Patients" at a special conference room in the main building of the National Assembly on September 16.

This forum, hosted by Assemblyman Lee and organized by the Korea Alliance for Rare Diseases and other groups, aims to explore ways to expand support for rare disease patients who are struggling due to institutional barriers.

Under the current system, support such as reduced hospital bills is provided through the designation of rare diseases. However, the criteria for designation are limited to diseases with a patient population of fewer than 20,000. Diseases that are non-infectious, have low severity, incur low socioeconomic costs, or lack clear diagnostic criteria are excluded, making the designation standards highly restrictive. As a result, there are many cases where ultra-rare diseases, which have extremely small patient populations and complex diagnostic processes, are in urgent need of support but are not designated as rare diseases.

In particular, one of the cases to be presented at this forum is cold agglutinin disease, a rare condition in which exposure to cold air, such as from an air conditioner, can sharply lower immunity and require emergency blood transfusions. However, with only about 180 patients, it is excluded from treatment support due to "unmet medical demand." Even for ultra-rare diseases, there is an urgent need to improve the rare disease designation system and expand support, such as including these diseases in drug reimbursement, to safeguard public health rights.

At the forum, Jang Junho, a professor in the Department of Hematology and Oncology at Samsung Medical Center, will give a presentation on "The Current State of the Treatment Environment and Health Rights Protection for Rare Disease Patients in Korea." In the discussion section, chaired by Choi Younghyun, director of the Future Health Network, panelists including Professor Jang Junho, Jung Jinhyang, Secretary General of the Korea Alliance for Rare Diseases, Lee Jungkyu, Director of the Health Insurance Policy Bureau at the Ministry of Health and Welfare, Kim Gukhee, Director of Drug Management at the Health Insurance Review and Assessment Service, and Shin Daehyun, a health and lifestyle reporter at Kukinews, will discuss ways to expand support for rare disease patients.

Assemblyman Lee Gaeho, who is hosting the forum, stated, "There are many rare diseases around us, but patients and their families are suffering in policy and institutional blind spots. I hope this forum will serve as a productive platform for discussions that can lead to support measures offering hope to rare disease patients and their families."