Reducing Hospital Cost Burden for Rare Diseases... 42 New Diseases Designated

▲National Health Insurance Service

[Asia Economy Reporter Chunhee Lee] The National Health Insurance Service (NHIS) announced on the 10th that, starting this month, it has expanded the scope of the health insurance special calculation exception applied to rare diseases and chronic renal failure patients undergoing artificial kidney dialysis to alleviate the burden on medically vulnerable groups.

Through collaboration with the Korea Disease Control and Prevention Agency, the NHIS has been applying special calculation exceptions for nationally managed rare diseases designated annually by the Disease Control Agency, based on applications from patients, families, and academic societies under the 'Rare Disease Management Act,' after review by the Rare Disease Expert Committee and Management Committee. The criteria for rare diseases include those with a patient population of 20,000 or fewer or diseases with unknown patient numbers due to diagnostic difficulties. As a result, 42 diseases have been newly designated this year, expanding the list of rare diseases from 1,123 to 1,165. Newly designated rare diseases include congenital glaucoma, autosomal dominant polycystic kidney disease, Bloom syndrome, Mayer syndrome, and Pearson syndrome, among others, with medical cost reduction benefits expected to reach approximately 4,000 people.

Patients with newly designated rare diseases will be able to receive reduced out-of-pocket expenses for medical benefits under the special calculation exception and support for low-income patients’ out-of-pocket expenses through the ‘Rare Disease Patient Medical Expense Support Project.’ For treatment of these diseases and medically related complications, the patient’s co-payment rate for inpatient and outpatient care is significantly reduced to 10%.

For example, the ultra-high-cost drug 'Zolgensma,' priced at 1.96 billion KRW domestically, is subject to the special calculation exception for the rare disease spinal muscular atrophy (SMA), reducing the patient’s co-payment to 196 million KRW. Furthermore, when the out-of-pocket maximum payment system is applied, the cost the patient must bear for Zolgensma treatment was reduced to a maximum of 5.98 million KRW as of last year.

If the patient’s income is below 120% of the median income, the remaining 10% of the medical expenses can be supported under the Disease Control Agency’s Rare Disease Patient Medical Expense Support Project. Starting this year, the eligibility for children and adolescents has been expanded to those below 130% of the median income.

Novartis's Spinal Muscular Atrophy (SMA) Treatment 'Zolgensma'

The scope of the special calculation exception is also being expanded for dialysis treatment necessary for chronic renal failure patients. Previously, the exception applied only to outpatient care on the day of dialysis and related inpatient care. In cases where patients could not receive dialysis on the day due to unavoidable reasons such as bleeding after vascular procedures or surgery for hemodialysis, the exception was not applied. This led to concerns that patients were forced to undergo dialysis unnecessarily or faced undue financial burdens.

Accordingly, the NHIS has improved the system based on expert consultation and medical evidence so that chronic renal failure patients undergoing artificial kidney dialysis can receive the special calculation exception for vascular procedures and surgeries related to dialysis regardless of whether dialysis is performed on the day.

Sang-il Lee, Executive Director of Benefits at NHIS, stated, “We will continue to strengthen essential medical coverage for medically vulnerable groups by collaborating with related agencies to continuously identify rare and severe intractable diseases that require long-term treatment and high medical expenses and expand the application of special calculation exceptions.”

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