On the 21st, the power of the people and the government decided to support the Seungil Hope Foundation’s ‘Lou Gehrig Patient Nursing Hospital’ construction project, which is co-represented by Sean (real name Lotion Kim), a member of the hip-hop ‘Jinusen’ duo.
The ruling party and the government held a policy meeting to strengthen support for the treatment of serious and rare diseases in the morning of the National Assembly in the main building of the National Assembly, and they made the decision.
The meeting was attended by Seong Il-jong, chairman of the Policy Committee, Representative Cheol-gyu Lee, secretary of the Special Committee on Budget and Accounts of the National Assembly, Representative Jong-seong Lee of the Health and Welfare Committee, Second Vice- Minister of Health and Welfare Park Min-soo, and Hwang Sun-gwan, director of welfare and security budget negotiations at the Ministry of Strategy and Finance. Sean, co-representative of the Seungil Hope Foundation, Park Seong-ja, executive director, and Go Jae-choon, head of the office, were also present. The Seungil Hope Foundation is a non-profit organization that specializes in supporting Lou Gehrig’s disease patients.
Chairman Seong said, “40% of patients with cancer and serious rare diseases have experienced treatment termination due to excessive drug prices, and the most difficult factor in the treatment process is the economic factor.” Even if we have a medical system, we are still wondering if the political world has actually created a support plan for families being treated for rare incurable diseases.”
He continued, “People power is more useful for the socially disadvantaged and seriously ill patients, and we have been thinking about how to solve the blind spots.” We have announced a budget increase plan for the establishment of a new nursing hospital specializing in rare and incurable diseases such as rare diseases and Lou Gehrig’s disease and support for medical costs for new uninsured drugs.”
He said, “Regardless of how the political parties put their heads together, it is not easy to find the necessary plans for patients and their families.”” he emphasized.
After reaching a budget agreement, the government and the government support the construction of a nursing hospital as a ‘pilot project for the treatment of rare diseases and leading nursing hospitals’. Chairman Seong said, “The amount needed, including the current construction cost, is about 12 billion won.” It will be a pilot project that will start within that range and expand in the future.” was also revealed
Chairman Seong said, “For ‘Moon Jae-in Care,’ many items up to 18 trillion won are being reimbursed and implemented, but what we really need to support is” the people who suffer from genetic diseases in a blind spot.” consult with the government so we can take care of it, and we will reflect it in consultation with the National Assembly.”
Sean also said at the press conference that day, “The foundation for families who care for patients with serious rare diseases because there is no nursing facility to be in the hospital, so their families care for them 24 hours a day day or paying more than 3 million won a month in nursing costs “We have been raising money to build a nursing hospital for the elderly,” he said.
He continued, “Because of Corona 19, which has lasted for the last three years, and the long war and inflation, labor costs and atomic ash prices have risen suddenly, but donations have decreased rapidly, and we have faced difficulties while raising money to build a nursing hospital through fundraising.” “Patients with serious rare diseases and their families I urged the government to help me get out of this 24 hour care and live a normal life.”
Donga.com reporter Jo Yoo-kyung polaris27@donga.com
