President Lee Jae-myung, who met with patients with rare diseases and their families, said the government would prepare support measures covering treatment, diagnosis, and welfare assistance.
On the 24th at Yonsei Cancer Center, Severance Hospital in Sinchon, Seoul, the president met with patients with rare diseases and their families and said, "Patients with rare diseases must not be excluded just because they are few in number," adding, "The issue of guaranteeing treatment for people with rare diseases is, for each of you, truly a matter that is very hard to endure."
At the event titled "Making triumph a reality, making hope part of everyday life," about 30 patients with rare diseases and their families attended. From the government, including the president, Health and Welfare Minister Jung Eun-kyeong, Korea Disease Control and Prevention Agency Commissioner Im Seung-kwan, and Ministery of Food and Drug Safety chief Oh Yu-Kyoung were present.
The president said, "Because the numbers are extremely small, there is also a counterargument that having the government take full responsibility may be excessive support," adding, "Interest is also very low, so compared with the expenditure, the economic necessity and such aspects are in fact very limited."
He went on, "Human life is precious, and people must not be excluded, disadvantaged, or marginalized because they are few in number."
The president said, "The new administration is preparing many improvement measures for treatment support, diagnosis support, and welfare support for our rare disease patients," adding, "We will listen to what you have to say, and if additional measures are needed, we will carry them out."
Patients with rare diseases and their families who attended the roundtable asked that their out-of-pocket share of treatment costs be reduced. The father of a 7-year-old child with glycogen storage disease said, "Among parents of patients with rare diseases, one often gives up a job to care for the child. The expense burden keeps rising while revenue is cut in half," adding, "Most families end up living their entire lives in economic hardship." Glycogen storage disease is a condition in which the body cannot properly break down glycogen, causing problems with blood sugar control.
The mother of a 9-year-old child with "Emanuel syndrome" said, "In Korea, there are fewer than 10 patients with this syndrome, and only about 30 or so worldwide," adding, "Currently, caregiving support is limited to roughly 100 specific disease codes. Rare disease children like mine, who are not even on that list, are effectively excluded from support."
Presidential office Spokesperson Kim Nam-joon said at a briefing, "The president also asked questions to set policy direction, such as how many patients with the condition are in the country," adding, "The president called each patient by name, made eye contact, and offered encouragement with high-fives."