Seriously ill patients feel sidelined as Korea debates insurance coverage for hair loss drugs

Patients with rare and life-threatening illnesses are speaking out against the government's recent push to extend national health insurance coverage to hereditary hair loss treatments, saying limited funds should go toward diseases that kill, not cosmetic conditions.

"There are many cases where life-saving treatment hits a 'fiscal limit' wall," Kim Sung-ju, head of the Korea Severe Disease Association, told the JoongAng Ilbo on Saturday. "In that context, news that the government is prioritizing insurance coverage for hair loss drugs is sowing anxiety and frustration among patients."

The association issued a statement on June 16 urging the government to prioritize "medical necessity and the reimbursement hierarchy" — the founding principles of the national health insurance system — and calling coverage of nonlife-threatening conditions "a case of misplaced priorities."

Kim said coverage of ultraexpensive treatments is the most pressing issue. "There are many cases where families sell their homes to pay for the latest cancer drugs or rare disease treatments, and end up falling apart," he said. "Limited insurance funds must go toward saving lives first."

Rare disease treatments that remain uncovered by national health insurance include Welireg, used to treat Von Hippel-Lindau disease; Gattex, for short bowel syndrome; and Ofev, for idiopathic pulmonary fibrosis.

The National Assembly Budget Office projects that the health insurance deficit will reach around 5 trillion won ($3.2 billion) this year and balloon to roughly 39 trillion won by 2035. Extending coverage to hereditary hair loss drugs would require at least an additional 179.7 billion won annually, according to estimates by the Health Insurance Review and Assessment Service. The supply value of prescription hair loss drugs in 2025 reached approximately 256.8 billion won; applying a 30 percent patient copayment rate yields a projected insurance burden of around 179.7 billion won.

Kim said extending coverage to hereditary hair loss — on top of the alopecia areata coverage already confirmed — "borders on populism." He added, "With a demographic cliff on the horizon, what citizen would agree to pay more?"

The Ministry of Health and Welfare is set to expand insurance coverage for severe alopecia areata, an autoimmune disease that results in patchy hair loss, in adults — specifically an oral drug containing the compound baricitinib — from July 1. It also plans to hold a public forum at Yonsei University on July 4, jointly with the Ministry of the Interior and Safety, to discuss whether hereditary hair loss treatments should also be covered. The Health Ministry is reportedly considering prioritizing younger patients for coverage.

"I understand the stress and hardship that comes with hair loss," Kim said, "but I hope the government looks after patients who are standing at the crossroads of life and death first." He also called on the Health Ministry to reduce the monthslong waits that seriously ill patients face when trying to access treatments available abroad, including by establishing a dedicated agency to handle such cases.

Kim also urged attention to subordinate legislation being developed under a revision to the Medical Dispute Mediation Act — due to take effect in May 2027 — which would exempt doctors from criminal prosecution in high-risk fields such as pediatrics and obstetrics when there is no gross negligence. Kim attended the first meeting of a related consultative body on June 11.

“From patients’ perspective, the most frightening scenario is one in which all doctors leave hospitals,” he said. “I hope that future discussions on issues such as the specific criteria for what constitutes gross negligence, as well as the design and coverage scope of liability insurance, will be guided in a direction that benefits patients.”

BY KIM JEONG-JAE [[email protected]]