[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"achievement-pfbid02JerjqTNW84ffoUj2duWkCrs33CYTq5CFgJhKDcpfHj9dhowcaL4tM5wEcbHHnVPyl":3,"tags-陳宥丞-20":17},{"id":4,"postUrl":5,"politician":6,"description":7,"title":8,"type":9,"tags":10,"creationTimestamp":15,"creationDate":16},"pfbid02JerjqTNW84ffoUj2duWkCrs33CYTq5CFgJhKDcpfHj9dhowcaL4tM5wEcbHHnVPyl","https:\u002F\u002Fwww.facebook.com\u002FNtuyoyo\u002Fposts\u002Fpfbid02JerjqTNW84ffoUj2duWkCrs33CYTq5CFgJhKDcpfHj9dhowcaL4tM5wEcbHHnVPyl","陳宥丞","今天受邀參加紀錄片《這一刻，得來不易》的發佈記者會，回想你我都經歷過疫情三級警戒的恐慌跟無助，面對病毒攻擊時生命有多麼脆弱，更無法忘記渴求口罩、快篩和搶疫苗時的和等待醫療資源的絕望，許多人是看著親人突然惡化的天人永隔撕心裂肺！\n\n現在疫情過去了，我們自由了！但仍然還有無數SMA家庭和患者，正與死神搶時間，他們仍在等一個用藥的機會！看著 李怡潔 Li Yi Jie 理事長和病友們一路一來的倡議爭取，#在今年4月才終於取得健保拓寬給付的機會，健保署也在今年6月同意有條件給付SMA基因治療，但仍有許多家庭無法獲得用藥補助；更需要新生兒篩檢預防措施！\n\n他們就像沒有口罩、沒有疫苗也等不到用藥治療的確診者，肌肉逐步僵硬和器官萎縮衰竭，最終，有意識的動彈不得！\n\n「#免於恐懼的自由」源自於美國總統富蘭克林•德拉諾•羅斯福於1941年國情咨文演說中提出，被明確納入在《世界人權宣言》的序言內，而台灣是醫療體系進步的文明國家，不該讓任何生命活在出生即死亡的恐懼之中，還有人在與死神拔河，就代表我們做的還不夠多。\n\n無論是透過展覽、紀錄片，除了可以讓更多人認識罕病的樣態，也希望社會大眾可以多花一點時間了解、認識、接納，從不同角度出發，一起為SMA的生命權發聲，也讓我們早日完成沒有一個被遺忘，解散協會的目標\n！\n\nSMA 治療藥物爭取協會（台灣生命之窗慈善協會）\n77老大\n黃瀞瑩\n\n#請一起呼籲政府從應全面落實新生兒篩檢補助及患者用藥給付\n#讓每一位寶貴生命都不被漏接！","","facebook",[11,12,13,14],"公共衛生","政府監督","公民權利","政治文化",1694688008000,"2023-09-14T10:40:08.000Z",{"tags":18,"all":75},[19,21,23,25,27,30,33,36,39,42,45,48,51,54,57,60,63,66,69,72],{"name":12,"count":20},1063,{"name":14,"count":22},921,{"name":13,"count":24},788,{"name":11,"count":26},444,{"name":28,"count":29},"都市計畫",435,{"name":31,"count":32},"交通安全",304,{"name":34,"count":35},"司法改革",284,{"name":37,"count":38},"地方經濟",276,{"name":40,"count":41},"重大公共工程",258,{"name":43,"count":44},"體育運動發展",202,{"name":46,"count":47},"防災應變",191,{"name":49,"count":50},"環境保護",187,{"name":52,"count":53},"青年發展",181,{"name":55,"count":56},"教育與托育",147,{"name":58,"count":59},"勞工權益",139,{"name":61,"count":62},"居住正義",133,{"name":64,"count":65},"產業發展",112,{"name":67,"count":68},"長照政策",80,{"name":70,"count":71},"能源政策",64,{"name":73,"count":74},"動物保護",54,[19,21,23,25,27,30,33,36,39,42,45,48,51,54,57,60,63,66,69,72,76,79,82,85,87,89,91,93,95,97,99],{"name":77,"count":78},"性別平等",39,{"name":80,"count":81},"737市政陳情",2,{"name":83,"count":84},"意志力",1,{"name":86,"count":84},"刑事警察",{"name":88,"count":84},"詐欺罪",{"name":90,"count":84},"強制罪",{"name":92,"count":84},"恐嚇取財",{"name":94,"count":84},"警察局",{"name":96,"count":84},"刑事犯罪",{"name":98,"count":84},"消費權益",{"name":100,"count":84},"拒絕勒索"]