Expanding National Support for Rare Diseases... Increased to a Total of 1,165 Cases

Disease Control and Prevention Agency building exterior (Photo by Disease Control and Prevention Agency)

[Asia Economy Reporter Chunhee Lee] The Korea Disease Control and Prevention Agency (KDCA) announced on the 22nd that it will newly designate 42 diseases as nationally managed rare diseases to systematically manage rare diseases and strengthen diagnosis and treatment support for rare disease patients.

According to the Rare Disease Management Act, the KDCA designates nationally managed rare diseases annually through review by the Rare Disease Expert Committee and the Management Committee, based on applications from patients, families, and academic societies. The criteria for rare diseases are those with a prevalence of 20,000 or fewer patients or diseases for which the prevalence is unknown due to diagnostic difficulties.

Starting next year, 42 diseases will be newly designated, expanding the list of rare diseases from the existing 1,123 to 1,165. Newly designated rare diseases include congenital glaucoma, autosomal dominant polycystic kidney disease, Bloom syndrome, Mayer syndrome, and Pearson syndrome.

The newly designated rare diseases will be subject to reduced out-of-pocket expenses for medical benefits under the National Health Insurance’s ‘Rare Disease Copayment Special Case’ and will be eligible for out-of-pocket expense support for low-income groups under the ‘Rare Disease Patient Medical Expense Support Project.’ When designated under the health insurance rare disease special case, the patient’s copayment rate for inpatient and outpatient care is significantly reduced to 10%, and if the patient’s income is below 120% of the median income, medical expenses are supported under the Rare Disease Patient Medical Expense Support Project. Starting next year, the copayment support criteria will be expanded to include children and adolescents with incomes below 130% of the median income.

The application of the special copayment case for newly designated rare diseases will be implemented from January next year after reporting to the Health Insurance Policy Deliberation Committee of the Ministry of Health and Welfare. The number of diseases eligible for the rare disease patient medical expense support project will also expand to 1,189 from January next year, including 24 severe intractable diseases. Additionally, these diseases will be included in the ‘Rare Disease Diagnosis Support Project,’ which supports genetic testing costs to enable rapid diagnosis and timely treatment for patients facing diagnostic difficulties.

Along with this, the KDCA recently established the ‘Rare Disease Designation Project Guide,’ a guideline to facilitate a faster designation process for nationally managed rare diseases and to provide easy-to-understand information about the designation project.

Previously, if a rare disease was not designated, a re-examination was conducted after 24 months from the announcement, resulting in a waiting period of over three years and difficulties in reapplication. To improve this, the KDCA shortened the re-examination waiting period for undesignated diseases to one year and made reapplication easier. The guideline clearly defines the designation review system and has been posted on the KDCA Rare Disease Helpline website to provide detailed guidance.

Jiyoungmi, Commissioner of the KDCA, stated, “Through the expansion and refinement of nationally managed rare diseases, the KDCA will strengthen support for rare disease patients and their families who face difficulties in diagnosis and treatment,” adding, “We expect that clear and prompt reviews will further advance the national rare disease management system.”

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