Peng Jun: Continuously speaking for rare disease patients

(chinadaily.com.cn)| Updated : 2024-03-05

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Feb 29 marked the 17th International Rare Disease Day. Peng Jun, a member of the National Committee of the Chinese People's Political Consultative Conference and deputy dean of Qilu Hospital of Shandong University, expressed pleasure that 15 rare disease drugs were included in the new medical insurance catalog on Jan 1, with 10 rare diseases within the catalog now treatable which previously were not.

Drawing on years of clinical experience, Peng submitted a proposal during the national two sessions last year, suggesting the establishment of a multi-level medical, pharmaceutical and social security mechanism for rare diseases and advocating for joint efforts to improve the level of support for treating rare diseases.

"Rare diseases are one of the greatest medical challenges facing humanity, as they are often difficult to diagnosis and treat," Peng said, adding that for the diagnosis and treatment of rare diseases, early detection and intervention are the best approaches, but research shows that it takes an average of 3.95 years for a rare disease patient to be diagnosed.

So far, only about 1 percent of rare diseases have effective treatment drugs, and due to reasons such as limited medication experience and insufficient treatment methods, diagnosis and treatment in most areas are still at a relatively low level, he said.

During this year's national two sessions, Peng spoke up for rare disease patients, with a focus on improving the diagnosis and treatment of rare diseases.

He suggests strengthening the management of the national rare disease diagnosis and treatment collaboration network, establishing a multi-disciplinary consultation collaboration model for rare diseases, conducting remote MDT for rare diseases and live broadcasting consultations to member hospitals of the network.

Peng also promotes the construction of regional medical centers to improve the diagnosis and treatment of rare diseases and reduce patients' need for out-of-town medical treatment. "Talent training and education should be strengthened to enhance the diagnosis and treatment capabilities of various levels of medical institutions," he added.