ALS (Lou Gehrig’s Disease) Care & Nursing Cost Calculator

This English page explains Korea care and nursing costs for amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease), a rare, progressive motor-neuron disease where the real burden is dominated by long-term caregiving, not medical bills. Key points for 2026: (1) ALS (sporadic ALS ICD G12.21, motor-neuron disease G12.2/G12.20) is a registered rare-disease special case (special mark V123), so covered medical self-pay is 10% — not the 5% used for cancer — for 5 years from registration (apply within 30 days of diagnosis to backdate), and the annual out-of-pocket ceiling refunds covered self-pay above the income-tier cap (about KRW 900,000–8,430,000). (2) Because ALS is NOT on the long-term-care-insurance list of “geriatric diseases” (National Long-Term Care Insurance Enforcement Decree, Annex 1: dementia, Parkinson’s, cerebrovascular disease, etc.), patients under 65 use the Personal Assistance Service for the disabled (PAS), not long-term care: the 2026 hourly rate is KRW 17,270, monthly grants run from about KRW 1.04 million (about 60 hours) to KRW 6.22 million (about 360 hours, most-severe 24-hour care), and the user co-payment is capped at KRW 216,200/month (exempt for basic-livelihood recipients). Patients 65+ can instead use long-term care insurance home care (grade limits KRW 1.21–2.51 million/month at a 15% home co-pay). (3) Private paid caregiving (24-hour one-to-one, about KRW 120,000–180,000/day, i.e. over KRW 4 million/month) is non-covered — outside the special case, the ceiling, and the medical-expense tax credit — so replacing it with PAS or long-term-care hours is the biggest lever; an integrated nursing-care ward in a hospital costs only about KRW 20,000–30,000/day. (4) Home ventilator, cough-assist, and oxygen are covered by NHIS yoyangbi at 90% (10% self-pay), reduced to 0% for registered rare-disease patients; cough-assist rental is about KRW 160,000/month. (5) The severe disability pension pays up to KRW 439,700/month in 2026 (basic KRW 349,700 + supplement). Registered serious-illness patients have no KRW 7,000,000 cap on the medical-expense tax credit (Income Tax Act Article 59-4), but caregiving fees and PAS co-payments are not tax-deductible. A planned second-half-2026 reform would cut the rare-disease special-case copay from 10% to 5%, but the current notice (No. 2026-101) still specifies 10%. Amounts are 2026 planning estimates that vary by region, severity, and contract; this is not medical, legal, or benefit advice.