A rare disease is a disease that has fewer than 20,000 people or is difficult to diagnose and for which no specific treatment has been developed. Even if there are treatments, most of them are not covered, so the cost of treatment ranges from tens of thousands to billions of won. The economic problem of not being able to receive treatment even if a new drug is developed is acting as a major stumbling block.
An amendment to the Rare Disease Control Act was submitted to the National Assembly last month to resolve these problems. Currently, it is stipulated that the state and local governments should support medical expenses in consideration of the economic burden of rare disease patients. However, the cost of treatment is huge, and there is an urgent need for medical support.
Accordingly, for those under the age of 18 with rare diseases, the state and local governments will promote a plan to support the full cost of diagnosis and treatment. The purpose is to alleviate the financial burden on the family and introduce effective treatment through early diagnosis.
In particular, rare diseases are often caused by heredity and can be treated more efficiently if diagnosed early, but it is judged that most of them are diagnosed and treated after they become adults.
In a survey of patients with rare diseases, more than half of the respondents cited the financial burden as the most difficult problem. It was found that there were not a few cases where treatment was not received on time or treatment was stopped even when there was medication due to the burden of treatment costs. It costs more than 2 billion won to administer a single treatment, or the cost of a drug a year exceeds billions of won.
There are more than 1,000 rare diseases in Korea. According to the Korea Centers for Disease Control and Prevention, as of 2020, there were 1,014 rare diseases, and the total number of cases was 52,069. There were 25,245 men (48.5%) and 26,824 women (51.5%).
Representative rare diseases include Turner’s syndrome, Parkinson’s disease, multiple sclerosis, Down’s syndrome, and acquired agranulocytosis. The rare diseases that cost the most injections were hereditary day 8 deficiency, hereditary factor IX deficiency, hemophilia A, Crohn’s disease in both small and large intestine, and persistent epilepsy status of unspecified order.
As for rare disease treatments, Novartis’ Kymria, Zolgensma, Pfizer’s Vindamax, and Biogen’s Spinraza are considered expensive drugs. The cost of a single dose of Kymria has been lowered to about 6 million won by receiving health insurance coverage from 300 million won in Korea, and Zolgensma is discussing whether to apply health insurance after its introduction in Korea, where the cost of a single dose exceeds 2 billion won in the United States.
Vindamax costs well over 200 million won a year, and Spinraza costs 100 million won for a single injection. It’s like a new drug.
The revised bill will be implemented from January next year, with the government subsidizing all costs of diagnosis and treatment for patients with rare diseases under the age of 18. The total number of patients with rare diseases under the age of 18 is expected to be 31,179, and if implemented, 5,153 people will be supported.
The detailed support items include self-pay, auxiliary equipment purchase cost, ventilator rental fee, uninsured medical expenses, and diagnosis cost.
Reporter Jang Bom-i [email protected]
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