The out-of-pocket rate under the health insurance special calculation program for rare and severe intractable diseases that incur high medical costs is expected to be lowered from the current 10%. The government is reviewing measures to reduce the out-of-pocket rate to around 5% for medical expenses exceeding a certain amount and plans to implement them in the second half of this year.
The Ministry of Health and Welfare on Jan. 5 announced, together with related ministries and agencies including the Ministery of Food and Drug Safety and the Korea Disease Control and Prevention Agency, measures to strengthen support for rare and severe intractable diseases.
Currently, due to the special calculation program, the out-of-pocket rate for rare and severe intractable diseases, which had been 20% for inpatient care and 30%–60% for outpatient care, has been lowered to 0%–10%. However, some diseases inevitably require long-term treatment, and there are cases where annual medical costs range from several million won to more than 10 million won.
Considering the need for continuous treatment and management and the heavy burden of high medical costs, the ministry decided to further reduce out-of-pocket costs under the special calculation program. Specific reduction criteria will be prepared in the first half of this year, reviewed by the Health Insurance Policy Deliberation Committee, and applied from the second half.
As of last year, the average annual out-of-pocket benefit amount for special calculation diseases was 730,000 won for cancer (5% out-of-pocket rate), 1.19 million won for heart disease (5%), 1.16 million won for cerebrovascular disease (5%), 570,000 won for rare diseases (10%), and 860,000 won for severe intractable diseases (10%). By disease, the annual out-of-pocket amount was 10.44 million won for hemophilia patients, 5.73 million won for adrenal and genital disorders, 3.14 million won for hemodialysis, and 1.72 million won for peritoneal dialysis.
The scope of diseases eligible for the special calculation program will also be expanded. Starting in January this year, 70 rare diseases, including congenital functional short bowel syndrome, will be newly included, increasing the number of rare diseases covered by the special calculation program from 1,314 to 1,387. The number of severe intractable diseases will remain at 208.
The re-registration process for the special calculation program will also be streamlined. Currently, to maintain eligibility, re-registration is required every five years, and for 312 rare and severe intractable diseases, submission of additional test results has been required. Going forward, considering the characteristics of diseases that are difficult to cure, unnecessary tests will be eliminated at re-registration, and confirmation will be based on clinical diagnosis and, if needed, treatment history. Nine diseases, including Charcot-Marie-Tooth disease, copper metabolism disorders, and Behcet disease, will be applied first starting this month.
Financial support for low-income patients with rare diseases will also be expanded. In the Rare Disease Medical Expense Support Program, which supports health insurance copayments, caregiving costs, special diet purchases, and ventilator rentals, the income and asset criteria applied to households of obligors will be phased out starting in 2027.
Disease-specific customized special diet support will also be expanded. Currently, for 28 diseases including classical phenylketonuria, special formula is supported up to an annual limit of 3.6 million won, and for nine diseases including glycogen storage disease, corn starch and low-protein instant rice are supported up to an annual limit of 1.68 million won. The government plans to review expansion of supported items and development of new products after examining current usage of special diets and additional demand this year.
The process for listing rare disease treatments for reimbursement will also be shortened. By concurrently proceeding with approval, evaluation of reimbursement appropriateness, and price negotiations, the government reduced the drug listing period from the existing 330 days to 150 days, and from 2026 plans to institutionalize a measure to shorten procedures that had taken up to 240 days to within 100 days.
For treatments whose domestic supply has been halted due to insufficient demand, the government will expand emergency import and made-to-order manufacturing by purchasing them overseas directly and supplying them. Patient self-purchased medicines from overseas for self-treatment will be converted to emergency import items by at least 10 items each year, increasing to 41 items or more by 2030. Made-to-order items will also be expanded from the current seven to 17 by 2030.
The system for diagnosing and managing rare diseases will also be strengthened. Diagnostic support such as genetic testing will increase from 810 cases in 2025 to 1,150 in 2026, and additional regional specialized institutions will be designated, focusing on areas without rare disease specialty centers. The rare disease registration program will also be expanded to tertiary hospitals and general hospital-level medical institutions to systematically manage patient incidence and clinical information.
The ministry said it will push institutional improvements to reduce medical cost burdens and treatment gaps for patients with rare and severe intractable diseases.