{"error":false,"id":["165355"],"data":{"IVOD_ID":165355,"IVOD_URL":"https://ivod.ly.gov.tw/Play/Clip/1M/165355","日期":"2025-11-13","會議資料":{"會議代碼":"委員會-11-4-26-10","會議代碼:str":"第11屆第4會期社會福利及衛生環境委員會第10次全體委員會議","屆":11,"會期":4,"會次":10,"臨時會會次":null,"種類":"委員會","委員會代碼":[26],"委員會代碼:str":["社會福利及衛生環境委員會"],"標題":"第11屆第4會期社會福利及衛生環境委員會第10次全體委員會議"},"影片種類":"Clip","開始時間":"2025-11-13T09:53:26+08:00","結束時間":"2025-11-13T10:02:09+08:00","影片長度":"00:08:43","支援功能":["ai-transcript"],"video_url":"https://ivod-lyvod.cdn.hinet.net/vod_1/_definst_/mp4:1MClips/fffa2c65c610facec64606ae503f4f6f8ff38efa2589ba08999b3dda738276807bd1442b9f89c7a65ea18f28b6918d91.mp4/playlist.m3u8","委員名稱":"林月琴","委員發言時間":"09:53:26 - 10:02:09","會議時間":"2025-11-13T09:00:00+08:00","會議名稱":"立法院第11屆第4會期社會福利及衛生環境委員會第10次全體委員會議（事由：邀請衛生福利部部長及行政院主計總處就「癌症新藥暫時性支付及罕見疾病藥物專款預算運用成效及政策檢討」進行專題報告，並備質詢。\n\n(討論事項)\n審查\n一、委員羅廷瑋等16人擬具「癌症防治法第十三條及第十六條條文修正草案」案。\n二、委員陳菁徽等16人擬具「癌症防治法第十六條條文修正草案」案。\n三、委員邱鎮軍等19人擬具「癌症防治法第五條及第十六條條文修正草案」案。\n四、委員劉建國等17人擬具「癌症防治法第十六條條文修正草案」案。\n五、委員王正旭等17人擬具「癌症防治法第十六條條文修正草案」案。\n六、委員顏寬恒等21人擬具「癌症防治法第十三條條文修正草案」案。\n七、委員林淑芬等20人擬具「癌症防治法第十六條條文修正草案」案。\n八、委員盧縣一等17人擬具「癌症防治法第八條及第十六條條文修正草案」案。\n九、委員顏寬恒等24人擬具「癌症防治法第十六條條文修正草案」案。\n十、委員蘇巧慧等30人擬具「癌症防治法修正草案」案。\n十一、委員林月琴等16人擬具「癌症防治法第十六條條文修正草案」案。\n十二、委員邱議瑩等16人擬具「癌症防治法第十六條條文修正草案」案。\n十三、委員羅智強等18人擬具「癌症防治法第十六條條文修正草案」案。\n十四、台灣民眾黨黨團擬具「癌症防治法第一條、第十三條及第十六條條文修正草案」案。\n十五、委員陳亭妃等17人擬具「癌症防治法第十六條條文修正草案」案。\n十六、委員黃秀芳等21人擬具「癌症防治法第十六條條文修正草案」案。\n十七、委員馬文君等16人擬具「癌症防治法第十六條條文修正草案」案。\n【專題報告及討論事項綜合詢答；討論事項僅詢答】）","transcript":{"pyannote":[{"speaker":"SPEAKER_00","start":0.03096875,"end":1.12784375},{"speaker":"SPEAKER_00","start":4.11471875,"end":12.231593750000002},{"speaker":"SPEAKER_01","start":4.72221875,"end":5.29596875},{"speaker":"SPEAKER_01","start":7.82721875,"end":8.92409375},{"speaker":"SPEAKER_01","start":9.71721875,"end":10.020968750000002},{"speaker":"SPEAKER_00","start":12.61971875,"end":43.28159375},{"speaker":"SPEAKER_01","start":44.85096875,"end":46.70721875},{"speaker":"SPEAKER_00","start":46.48784375,"end":47.02784375},{"speaker":"SPEAKER_01","start":47.02784375,"end":47.078468750000006},{"speaker":"SPEAKER_00","start":47.078468750000006,"end":47.095343750000005},{"speaker":"SPEAKER_01","start":47.36534375,"end":56.61284375},{"speaker":"SPEAKER_00","start":47.48346875,"end":47.77034375},{"speaker":"SPEAKER_00","start":47.820968750000006,"end":47.837843750000005},{"speaker":"SPEAKER_00","start":47.87159375,"end":47.939093750000005},{"speaker":"SPEAKER_00","start":48.02346875,"end":48.31034375},{"speaker":"SPEAKER_01","start":57.102218750000006,"end":74.90534375},{"speaker":"SPEAKER_00","start":68.03721875000001,"end":68.23971875000001},{"speaker":"SPEAKER_00","start":71.39534375000001,"end":72.07034375},{"speaker":"SPEAKER_00","start":72.77909375,"end":73.15034375},{"speaker":"SPEAKER_00","start":74.73659375000001,"end":105.21284375},{"speaker":"SPEAKER_00","start":105.71909375000001,"end":107.60909375},{"speaker":"SPEAKER_00","start":108.13221875,"end":122.50971875},{"speaker":"SPEAKER_00","start":122.89784375,"end":145.96596875},{"speaker":"SPEAKER_00","start":146.03346875,"end":146.13471875000002},{"speaker":"SPEAKER_01","start":146.13471875000002,"end":197.36721875},{"speaker":"SPEAKER_00","start":164.89971875,"end":165.62534375},{"speaker":"SPEAKER_00","start":166.13159375,"end":167.97096875},{"speaker":"SPEAKER_00","start":181.11659375000002,"end":181.13346875000002},{"speaker":"SPEAKER_00","start":181.21784375000001,"end":181.25159375},{"speaker":"SPEAKER_00","start":194.19471875000002,"end":195.67971875},{"speaker":"SPEAKER_00","start":195.93284375000002,"end":200.37096875},{"speaker":"SPEAKER_01","start":199.93221875,"end":200.77596875},{"speaker":"SPEAKER_00","start":200.77596875,"end":201.60284375},{"speaker":"SPEAKER_01","start":201.60284375,"end":203.23971875},{"speaker":"SPEAKER_00","start":201.61971875,"end":203.69534375},{"speaker":"SPEAKER_00","start":203.91471875000002,"end":210.68159375000002},{"speaker":"SPEAKER_01","start":203.96534375000002,"end":204.40409375000002},{"speaker":"SPEAKER_01","start":208.60596875000002,"end":208.89284375000003},{"speaker":"SPEAKER_01","start":209.80409375000002,"end":218.89971875},{"speaker":"SPEAKER_00","start":216.97596875000002,"end":229.34534375},{"speaker":"SPEAKER_00","start":229.54784375000003,"end":233.10846875000001},{"speaker":"SPEAKER_00","start":233.46284375000002,"end":234.99846875000003},{"speaker":"SPEAKER_00","start":235.03221875000003,"end":237.36096875},{"speaker":"SPEAKER_00","start":237.98534375000003,"end":248.68409375000002},{"speaker":"SPEAKER_01","start":249.57846875,"end":256.42971875},{"speaker":"SPEAKER_00","start":254.99534375000002,"end":295.14096875},{"speaker":"SPEAKER_01","start":256.98659375,"end":258.37034375},{"speaker":"SPEAKER_01","start":261.05346875000004,"end":261.44159375000004},{"speaker":"SPEAKER_01","start":262.69034375,"end":262.80846875000003},{"speaker":"SPEAKER_01","start":263.07846875,"end":263.17971875},{"speaker":"SPEAKER_00","start":295.69784375,"end":296.87909375000004},{"speaker":"SPEAKER_00","start":297.14909375,"end":298.97159375},{"speaker":"SPEAKER_01","start":297.30096875000004,"end":297.43596875000003},{"speaker":"SPEAKER_01","start":298.97159375,"end":308.45534375},{"speaker":"SPEAKER_00","start":306.09284375000004,"end":311.98221875},{"speaker":"SPEAKER_01","start":309.26534375,"end":309.68721875},{"speaker":"SPEAKER_01","start":311.13846875,"end":330.89909375},{"speaker":"SPEAKER_00","start":328.99221875,"end":334.13909375000003},{"speaker":"SPEAKER_00","start":334.51034375,"end":354.35534375000003},{"speaker":"SPEAKER_01","start":355.36784375,"end":370.87596875},{"speaker":"SPEAKER_00","start":365.79659375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可是他如果他不知道資源呢所以這個資源我們要做得更多讓大家知道他也可以利用喘息服務那第二個呢是對照顧者本身的支持因為這些路經常很漫長所以長期以來會產生壓力的累積啦所以我們就這幾年特別著重在"},{"start":187.766,"end":203.034,"text":"家庭照顾者的支持据点包含他的心理的协谈 咨询还有照顾技巧的指导还有支持方案有些人可能不知道所以部长可不可以我们再多广宣目前大概已经"},{"start":205.215,"end":232.973,"text":"是不是可以定期调查主动关怀的作业请卫福部在两周内我们现在把它纳入在我们服务员就是我们去做这个长照服务员也同时去筛检出它有没有高风险我接着要问这个是昨天我也对家庭照顾价制度去问劳动部长他明确的说需要卫福部来协助做处理评估不同的照顾者不同的家庭合理的照顾时间跟需求到底是什么所以想问部长"},{"start":234.014,"end":247.915,"text":"針對各類長照跟家庭照顧長照跟照顧家庭的一個需求去做評估衛福部有沒有做有沒有定期的是給勞動部甚至有沒有跟勞動部之間有橫向的一個聯繫"},{"start":250.057,"end":266.605,"text":"這個部分我們再來做這個詳細的評估要麻煩部長因為他昨天因為要完整的照顧體系的價這個價我覺得關鍵在於是兩部會的一個合作那因為"},{"start":268.085,"end":290.539,"text":"從我們看到這個從慌亂到穩定就長照家庭他去找資源然後長輩住院找資源然後返家使用長照要聘僱移工這些這大概都要20到30天那不同的照顧者可能會有不同的需求在所以我們希望說衛福部在這邊可能要把這一塊能夠清楚的讓我們的"},{"start":291.504,"end":312.471,"text":"勞動部知道那以方便我們未來再推長照假的時候那才有辦法去訂出來跟委員說明當然目前這個在公務機關是有這個家庭照顧假它是併入在市價裡面去計算可是那7天當中還不夠我們剛看到是20到30天那到底這個"},{"start":313.631,"end":335.872,"text":"怎麼去設計它我們來研究不過我們現在積極在加強的就是無縫轉弦把它無縫銜接不論是出院的準備縮短長照資源可以進來的時間我知道你們很努力部長昨天我接到一通罕病兒的家長的求助電話"},{"start":336.613,"end":354.053,"text":"孩子罹患球形式肌肉萎縮症家長知道美國的基因藥太貴了現在只能用副作用比較低的類固醇治療他跟我說在中國治療比台灣更便宜50萬台幣問我該怎麼辦部長你建議我怎麼回答"},{"start":355.77,"end":378.08,"text":"這個當然是這樣就是說以現在這個這個球星是這個肌肉萎縮症而言我們查了一下是目前當然還沒有這個藥證目前台灣是沒有藥證那我們來這個search看看所以我就想這個看其他的國家就是我們要找比較具有這個HTA就是醫藥科技評估的"},{"start":380.422,"end":400.682,"text":"這個國際組織的報告比如說像英國的NICE啦或者是加拿大澳洲等等這些國家的報告我們來看看這個科技評估的報告如何他的效果因為這高價的藥我剛提過也是要經過嚴謹的這個醫療科技評估的那你們預估啦只要是有明確的效果像"},{"start":402.303,"end":425.831,"text":"之前这个陈昭寺委员也秀出了一个AADC那个基因治疗那个也是个罕病那么那个那个药呢这个药价也是在后来我们也是会纳入是主要也是要完整的评估它的效果115年预估115年还能够纳入多少新药还有里边有没有针对神经退化性疾病的药"},{"start":428.169,"end":455.725,"text":"我們115年 今年是大概181億那明年的話呢 健保這邊是192億在外加這個公務預算還有20億大概也是200多億所以又比今年又會再成長差不多30億左右那我們過去大概5年的成長率大概是10%所以以這樣的規模我們是覺得應該是足以來納入更多的這個罕病的新藥"},{"start":456.365,"end":475.666,"text":"因為如果不會真的需要補這個20億的公務預算我相信跨黨派都會支持最後就是想問一個兒童篩檢的問題這幾天看到一個新聞讓人家非常難過一個父親同時要面對妻子罹癌 孩子罹病那個孩子到一歲多才因為基因篩檢才知道他罹患罹患罹病"},{"start":476.667,"end":501.449,"text":"所以我想問衛福部有沒有規劃要納入公費新生兒的篩檢項目因為科技都進步了我們是不是要與時俱進的能不能把健保先把健保給這些寒病的孩子來做新生兒篩檢新生兒篩檢我們目前21項公費裡面18項都是屬於寒病那至於還要不要再擴大那也都是要經過醫療科技譬如像這個剛剛提的SMA這個"},{"start":504.211,"end":516.318,"text":"脊髓神經萎縮肌肉萎縮症的這個已經評估完了所以明年會納入在這個我覺得應該要考慮增加對那其他我們都是一步一步會去檢討部長謝謝謝謝好謝謝委員好謝謝部長謝謝林委員接下來請林淑雯"}]}},"supported_relations":[],"relations":[]}