药价减法，生命加法——2023“讲好中国故事”创意传播国际大赛温州分站赛作品展播

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作品简介：2001年，包珍妮出生在浙江省温州市，患有脊髓性肌萎缩症（SMA），曾被医生“宣判”活不过四岁。她在人生绝境中顽强不屈，用仅能移动的手指书写励志人生，自学多国语言、出版诗集、创作歌词，追求生命的光亮。

在采访的过程中，包珍妮的父亲讲述了最初他们四处求医的艰难与辛酸。2021年12月，国家医保局与药商八轮谈判，让治疗SMA罕见病的特效药从70万元一针，降价到3.3万元并纳入医保。2023年，包珍妮已成功注射八针，疗效显著，医保点亮了包珍妮继续活下去的希望。本片通过对包珍妮及其父亲的采访，展现了一个SMA患者踏上新生之路的转变，呼吁更多人关注到罕见症群体。 

 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：骆艳芳、张多福、徐畅艺、吕婕敏、王靖然、张雅婷 

 报送单位：温州理工学院