藥價減法，生命加法——2023“講好中國故事”創意傳播國際大賽溫州分站賽作品展播

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作品簡介：2001年，包珍妮出生在浙江省溫州市，患有脊髓性肌萎縮症（SMA），曾被醫生“宣判”活不過四歲。她在人生絕境中頑強不屈，用僅能移動的手指書寫勵志人生，自學多國語言、出版詩集、創作歌詞，追求生命的光亮。

在採訪的過程中，包珍妮的父親講述了最初他們四處求醫的艱難與辛酸。2021年12月，國家醫保局與藥商八輪談判，讓治療SMA罕見病的特效藥從70萬元一針，降價到3.3萬元並納入醫保。2023年，包珍妮已成功注射八針，療效顯著，醫保點亮了包珍妮繼續活下去的希望。本片通過對包珍妮及其父親的採訪，展現了一個SMA患者踏上新生之路的轉變，呼籲更多人關注到罕見症群體。 

 Born in Wenzhou, Zhejiang province, in 2001, Zhenni Bao has spinal muscular atrophy (SMA) and was pronounced by doctors not to live past the age of four. She is indomitable in the desperate situation of life, writing inspirational life with only moving fingers, self-learning multiple languages, publishing poetry collections, creating lyrics, and pursuing the light of life. 

In the course of the interview, Bao's father described the initial difficulties and hardships of seeking medical treatment. In December 2021, the National Medical Insurance Bureau negotiated eight rounds of negotiations with drug manufacturers to reduce the price of the special drug for the treatment of SMA rare diseases from 700,000 yuan a shot to 33,000 yuan and included in medical insurance. In 2023, Zhenni  Bao has successfully injected eight needles, the effect is significant, and the medical insurance has lit up the hope of Zhenni Bao to continue living. Through interviews with Zhenni Bao and her father, this film shows the transformation of an SMA patient on the road to new life and calls for more attention to the rare disease community. 

作者：駱艷芳、張多福、徐暢藝、呂婕敏、王靖然、張雅婷 

 報送單位：溫州理工學院