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| Ruling Democratic Party of Korea presidential candidate Lee Jae-myung sweeps his hair up in a YouTube video posted Jan. 4, to collect public opinion about his pledge to include hair loss treatment in national health insurance coverage. Captured from YouTube |
By Kwon Mee-yoo
Ruling Democratic Party of Korea presidential candidate Lee Jae-myung's pledge to include hair loss treatment in national health insurance coverage is drawing protest from patients with rare, incurable diseases, many of which are excluded from the public health insurance.
The Korean Organization for Rare Diseases (KORD) released a statement, Thursday, lamenting Lee's hair loss treatment proposal.
"There are still many patients with rare life-threatening diseases, including babies born with rare disorders in this era of ultra-low fertility, and they are not guaranteed access to treatment due to the high cost of new, orphan drugs. It is not proper to discuss expanding the coverage of national health insurance to hair loss treatment in this situation," the organization said in the statement.
An "orphan drug" refers to pharmaceutical products for treating, preventing or diagnosing rare diseases or disorders. Since the number of patients are so few, orphan drugs are generally not profitable for pharmaceutical companies to produce without government assistance.
Expanding national health insurance benefits was one of the major policies of the Moon Jae-in administration. Still, many rare diseases and orphan drugs are left out of the public health insurance.
For instance, a petition posted on Cheong Wa Dae's website last year asked for including Zolgensma, a new medication for spinal muscular atrophy (SMA), in the public health insurance coverage. The new gene therapy treatment offers almost full recovery from the rare disease, but it costs about 2.5 billion won, making it virtually unaffordable for normal households.
The petition fell through with only 13,200 supporters, showing that rare diseases do not get enough attention due to the limited number of patients.
According to the Health Insurance Review and Assessment Service, there are about 800,000 patients with rare diseases in Korea. Korean law stipulates that rare disease refers to a disease or disorder that has less than 20,000 patients in the country.
"Korea's public health insurance coverage for orphan drugs is about 370 billion won ($311 million), which accounts for about 2.1 percent of total pharmaceutical spending. However in the global market, orphan drugs take up over 14 percent of the total," a KORD official said, suggesting that Korea's national health insurance should increase its spending on such drugs.
"Treatment for serious hair loss caused by medical reasons is already covered by national health insurance. Expanding the coverage disrupts the priority of healthcare, when there are more serious diseases that need to be covered by national health insurance. We hope it is not a populist pledge considering that there are more people suffering from hair loss than rare diseases."
