In the early morning, in the corridor of the Hematology Research Room of Qilu Hospital, Shandong University, Peng Jun, a member of the National Committee of the Chinese People's Political Consultative Conference and vice president of Qilu Hospital, held a stack of letters and hurriedly walked. These letters come from 16 provinces including Anhui, Guangdong, and Guizhou, but they share the same theme: rare diseases in children. Since serving as a member of the National Committee of the Chinese People's Political Consultative Conference in 2023, Peng Jun's performance has always been closely linked to rare diseases. In 2023, he submitted a proposal to improve the multi-level protection system for rare diseases, which received feedback from the National Health Commission and other departments. To his delight, in January 2024, 15 rare disease medications were newly included in the national medical insurance catalog. Last year's National People's Congress and Chinese People's Political Consultative Conference, Peng Jun's proposal on building rare disease diagnosis and treatment capabilities attracted social attention. After the closing of the two sessions, his office received dozens of letters of assistance. The letters are mostly from impoverished rural families, and the patients are mostly children, "Peng Jun said with a heavy tone." The price of special drugs for rare disease treatment is high, and before entering medical insurance, the average annual treatment cost may reach millions of yuan. "After research, Peng Jun became even more convinced that the defense line for rare diseases must be built in childhood. There are over 20 million rare disease patients in China, and about 70% of rare diseases occur in childhood, mostly due to genetic defects. Peng Jun explained that if these diseases are misdiagnosed or delayed, they may lead to lifelong disability or even death. But many grassroots hospitals lack diagnostic capabilities, and it takes years for children to be diagnosed after traveling to multiple places, missing the golden treatment period. Peng Jun has decided to focus his 2025 proposal on the children's population and provide suggestions for strengthening early screening, diagnosis, and treatment of rare diseases in children. To understand the crux of the problem, it is necessary to go deep into the clinical front line. Last year, Peng Jun led the establishment of the Rare Disease Multidisciplinary Comprehensive Outpatient Department at Qilu Hospital. The professional materials in the bookshelf were stacked half a height high, and the notebook was densely filled with discussions with experts... A stack of letters was also an important part of Peng Jun's proposal to improve it. As the National People's Congress and Chinese People's Political Consultative Conference are approaching, he repeatedly reviewed letters from the families of sick children, convened clinical experts to analyze the demands one by one, and included proposals such as "increasing the reimbursement ratio of children's medical insurance" and "strengthening screening and training for grassroots medical and health institutions". Livelihood is no small matter, and children's illnesses touch everyone's hearts Peng Jun's fingers brushed against the folds on the letter. He told reporters that he is planning to conduct in-depth research in areas with high incidence of rare diseases: "With every small step forward in policy, there is hope to lift more families and let them see the light of life
Edit:Chen Jie Responsible editor:Li Ling
Source:People's Daily
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