{"error":false,"id":["165450"],"data":{"IVOD_ID":165450,"IVOD_URL":"https://ivod.ly.gov.tw/Play/Clip/1M/165450","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":"2025-11-13T13:55:28+08:00","結束時間":"2025-11-13T14:07:01+08:00","影片長度":"00:11:33","支援功能":["ai-transcript"],"video_url":"https://ivod-lyvod.cdn.hinet.net/vod_1/_definst_/mp4:1MClips/fffa2c65c610facecc1513401e4aafa08ff38efa2589ba08940de7757ad205758c3f6bbd0a8feaf75ea18f28b6918d91.mp4/playlist.m3u8","委員名稱":"陳瑩","委員發言時間":"13:55:28 - 14:07:01","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_01","start":6.4772187500000005,"end":9.34596875},{"speaker":"SPEAKER_02","start":9.396593750000001,"end":10.223468750000002},{"speaker":"SPEAKER_02","start":14.189093750000001,"end":14.864093750000002},{"speaker":"SPEAKER_01","start":14.982218750000001,"end":16.28159375},{"speaker":"SPEAKER_01","start":16.78784375,"end":24.16221875},{"speaker":"SPEAKER_02","start":25.613468750000003,"end":27.80721875},{"speaker":"SPEAKER_01","start":27.65534375,"end":30.08534375},{"speaker":"SPEAKER_01","start":30.91221875,"end":33.15659375},{"speaker":"SPEAKER_02","start":34.40534375,"end":48.29346875},{"speaker":"SPEAKER_01","start":48.59721875,"end":55.954718750000005},{"speaker":"SPEAKER_01","start":56.02221875,"end":56.039093750000006},{"speaker":"SPEAKER_01","start":56.08971875,"end":60.02159375},{"speaker":"SPEAKER_02","start":60.83159375,"end":62.164718750000006},{"speaker":"SPEAKER_01","start":62.384093750000005,"end":62.721593750000004},{"speaker":"SPEAKER_02","start":62.721593750000004,"end":74.02784375},{"speaker":"SPEAKER_01","start":68.30721875,"end":68.83034375},{"speaker":"SPEAKER_02","start":74.11221875000001,"end":78.49971875},{"speaker":"SPEAKER_00","start":75.66471875,"end":76.93034375},{"speaker":"SPEAKER_00","start":78.19596875,"end":78.36471875000001},{"speaker":"SPEAKER_00","start":78.49971875,"end":78.88784375},{"speaker":"SPEAKER_02","start":80.22096875000001,"end":80.32221875},{"speaker":"SPEAKER_00","start":80.32221875,"end":80.33909375},{"speaker":"SPEAKER_02","start":80.33909375,"end":80.37284375},{"speaker":"SPEAKER_00","start":80.37284375,"end":80.52471875},{"speaker":"SPEAKER_00","start":80.79471875,"end":88.81034375},{"speaker":"SPEAKER_00","start":88.89471875000001,"end":103.52534375},{"speaker":"SPEAKER_01","start":104.80784375,"end":108.57096875},{"speaker":"SPEAKER_01","start":109.70159375,"end":110.03909375},{"speaker":"SPEAKER_00","start":110.03909375,"end":110.29221875},{"speaker":"SPEAKER_01","start":110.29221875,"end":110.44409375000001},{"speaker":"SPEAKER_00","start":110.44409375000001,"end":110.79846875000001},{"speaker":"SPEAKER_01","start":110.79846875000001,"end":110.88284375},{"speaker":"SPEAKER_01","start":111.00096875000001,"end":111.01784375000001},{"speaker":"SPEAKER_00","start":111.01784375000001,"end":124.19721875},{"speaker":"SPEAKER_01","start":123.89346875000001,"end":134.03534375},{"speaker":"SPEAKER_01","start":134.40659375,"end":144.19409375},{"speaker":"SPEAKER_01","start":144.56534375,"end":145.32471875000002},{"speaker":"SPEAKER_01","start":145.42596875,"end":153.34034375000002},{"speaker":"SPEAKER_01","start":153.49221875,"end":155.70284375},{"speaker":"SPEAKER_02","start":156.25971875000002,"end":157.98096875000002},{"speaker":"SPEAKER_02","start":159.04409375,"end":192.06846875000002},{"speaker":"SPEAKER_02","start":192.32159375,"end":192.35534375},{"speaker":"SPEAKER_01","start":192.35534375,"end":192.37221875},{"speaker":"SPEAKER_02","start":192.37221875,"end":209.73659375000003},{"speaker":"SPEAKER_01","start":192.45659375000002,"end":192.54096875000002},{"speaker":"SPEAKER_01","start":208.35284375,"end":209.09534375},{"speaker":"SPEAKER_01","start":209.98971875,"end":215.69346875000002},{"speaker":"SPEAKER_01","start":216.13221875000002,"end":220.84034375000002},{"speaker":"SPEAKER_01","start":221.41409375,"end":225.80159375000002},{"speaker":"SPEAKER_02","start":227.92784375000002,"end":229.85159375},{"speaker":"SPEAKER_01","start":230.03721875000002,"end":236.23034375},{"speaker":"SPEAKER_02","start":234.00284375,"end":234.23909375000002},{"speaker":"SPEAKER_00","start":234.23909375000002,"end":234.27284375000002},{"speaker":"SPEAKER_01","start":236.51721875,"end":236.75346875000002},{"speaker":"SPEAKER_01","start":237.05721875,"end":244.21221875},{"speaker":"SPEAKER_02","start":244.65096875,"end":244.98846875},{"speaker":"SPEAKER_01","start":244.98846875,"end":245.39346875},{"speaker":"SPEAKER_02","start":246.22034375,"end":248.70096875000002},{"speaker":"SPEAKER_02","start":248.85284375,"end":254.62409375000001},{"speaker":"SPEAKER_01","start":254.60721875000002,"end":256.75034375},{"speaker":"SPEAKER_01","start":257.52659375,"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麻煩請石部長部長好部長好這個罕見疾病的發生是不是大部分都跟遺傳或者基因缺損有關係可以這麼說那如果是的話這些病可以被預防嗎"},{"start":35.557,"end":58.866,"text":"我們現在在這個罕病的認定上分為原發性跟次發性所以次發性的那個多數還有其他因素但是原發性的大概都是沒有辦法先預測的好 那你們每年補助預防及研究的這個經費大概是多少那你覺得目前成效如何有沒有一個KPI的指標"},{"start":60.902,"end":78.642,"text":"罕病的研究罕病的研究我们好像没有特别我们对癌症的研究有有一个专门在国会院里面有一个癌症所专门会做这方面罕病好像有要补充我是不是请署长补充好请说"},{"start":80.848,"end":108.193,"text":"我們在那個菸品福利捐裡面其實有部分是分配給罕見疾病相關的醫療費用那剩下來的話就是會投注在預防篩檢研究宣導還有其他健保沒有辦法致應的一些相對性支持療法或者是維持生命所需的特殊營養品所以確實研究的部分會在這個部分的一些小的部分好就是那你覺得成效"},{"start":109.761,"end":133.637,"text":"怎麼樣因為罕見疾病的發生率就是很低所以相對應的研究來說的話他確實沒有辦法立刻的作為一個成效但是他可以作為我們相對應後續的政策的一個基礎跟科學的根據好所以也沒有去特別去訂這個KPI的指標是這比較困難好沒關係我想這個部分確實是很困難因為一般"},{"start":134.797,"end":157.039,"text":"這個要發現這個罹患罕見疾病除非透過是這個學有專精的專家然後透過非常繁複的檢測才能夠確認那後續的這個診治才真的是這個挑戰的開始那目前對於這個患者的家庭衛福部有就是說有提供什麼樣的協助呢跟委員說明確實"},{"start":159.573,"end":175.245,"text":"這個罕病不好診斷除了幾個醫學中心也不是全部的醫學中心幾個醫學中心有專門的醫師多數是兒科的醫師有辦法做這些診斷其他的確實是困難"},{"start":175.845,"end":190.514,"text":"所以呢我們在這個優化兒童醫療照護計畫裡面去建立一個叫兒童困難診斷平台就是希望說透過這個現在是委託台大在做那麼因為這些疾病的診斷要經驗的累積"},{"start":192.495,"end":209.486,"text":"因为它本来就很少所以我们需要跨院之间的合作所以我们现在就有进行这个困难诊断平台的计划那补助台大在做这个事情初步的成效我们再把它整理一下提供给委员参考听起来还不错"},{"start":210.046,"end":225.411,"text":"那除了你們剛剛所提的這些未證的資源之外有沒有其他社福的資源一起來無縫銜接還是說主要也是靠這個罕見疾病基金會去統籌處理民間的資源"},{"start":230.797,"end":243.862,"text":"就是沒有我現在只衛福部裡面啦就除了你們的衛政資源之外有沒有其他社福的資源但你若要提民間的也OK啦但你們衛福部裡面"},{"start":246.349,"end":270.241,"text":"我們現在主要就是有那個那個罕病基金另外一個就是健保主要大宗還是在健保裡面我會這樣講是因為周偉今天排定這個題目我相信對於歷任的這個衛福部部長都是非常困難來回答的那因為這個資源一定是有限的而且幾乎都是"},{"start":271.301,"end":286.71,"text":"其實它也不容易治療除非說我們能夠控制它的發生那我們就要面臨就是說要延長壽命還有要兼顧生活品質的困難這些挑戰"},{"start":287.751,"end":311.877,"text":"那同時還有面對就是說家庭沉重的經濟的負擔有時候是除了經濟的負擔還有心理上的負擔所以我希望在社會關懷方面社家屬也能夠扮演重要的角色畢竟就是說在這個周遭的患者周遭的照顧者常常要剛剛講面臨的經濟壓力之外"},{"start":314.798,"end":329.284,"text":"他其實是身心俱疲的那有些可能照顧到後來自己也要去吃油啊看醫生那甚至有些會有親身的念頭這些都是我們要去注意的所以我今天才特別提出來"},{"start":330.644,"end":355.854,"text":"說這些社會關懷的部分那例如說像我們這個偏遠的這個台東地區啦那比較弱勢的一些家庭啦那在這個法令上可以補助或協助的地方能夠有你們的這個關懷還有跟這個感受到你們支持的力量我想這個是很重要的所以這個部分我在這裡特別提醒部長"},{"start":357.634,"end":375.359,"text":"謝謝委員長期以來一直為偏鄉跟弱勢發聲那確實我們明年的這個長照3.0會去擴大這個長照的對象那過去像這樣的這個罕病如果是拿到身心障礙證明就會納入到我們的長照的服務裡頭"},{"start":376.459,"end":399.608,"text":"因為這個照顧確實辛苦我們會逐步的去擴大不再是以年齡來限制是不是利用長照第二個是增加對家庭照顧者的支持所以我們會持續去擴大家照據點的設立偏鄉的部分我們一定會優先去關注讓在偏鄉優先有這樣的資源"},{"start":401.77,"end":418.085,"text":"謝謝部長那我在這裡也特別對這個負責罕見疾病的醫護人員以及社福團體致上最深的敬意那另外就是說根據這個罕見疾病防治及這個藥物法的第33條的規定"},{"start":419.907,"end":434.465,"text":"卫福部必须编列公务预算那补助罕见疾病的预防筛检跟研究的相关经费以及健保为己父的诊断治疗药物特殊营养食品等的费用同时呢也可以利用严捐的收入来支应"},{"start":435.166,"end":452.869,"text":"那最近呢衛福部終於開放了這個加熱菸合法販售預期會增加罕見疾病的補助那將來想請教就是說在公務預算的補助專款會不會因此而大幅減少然後增加到這個健保跟這個菸捐支應的比例呢"},{"start":453.049,"end":469.811,"text":"不会像我们明年还是持续有公务预算在挹注那个罕药的使用就不会往下调吗不会我们还是会该由公务预算来支持的因为我个人当然是比较倾向就原有的预算规模"},{"start":470.612,"end":492.602,"text":"是不宜去刪減那也應該讓罕見疾病的這個家庭享有這個加熱菸菸捐的資應也就是說衛福部應該思考就是說讓這個新增的資源有更好的運用所以在未來接下來本席也會持續在關注的這個重點就是如何使用罕見疾病的這個專款上面"},{"start":493.522,"end":517.296,"text":"那另外 就是依照這個 罕見疾病防治藥物法第三條的規定罕見疾病是指這個疾病盛行率在中央主管機關公告的基準之下或者因為情況特殊 經審議會認定及衛福部指定公告者所以呢 目前盛行率的這個公告基準是多少"},{"start":518.539,"end":526.931,"text":"現在是萬分之一那台灣罕見疾病的種類大概有多少種200多少227"},{"start":533.747,"end":548.776,"text":"247 247 247種好那本席有一個問題我想就提出來討論因為你們才是專家就是說用盛行率的基準來定義可能累積足夠的病人"},{"start":549.376,"end":567.496,"text":"那原本罕見就會變成不罕見了那除非說這部法呢完全沒有發揮作用那通通不篩檢不防治所以沒有發現新的個案或者我們不治療那每年死亡的個案數就會大於這個發現數"},{"start":569.518,"end":596.097,"text":"那這樣子的累積個案就不會超過0.01%否則呢 一旦就是說大家控制的很好那累積的這個病人數終究它會超過這個基準盛行率更何況目前台灣的這個死亡率是大於出生率的所以 我想我不知道部長有沒有同意本席這樣的一個推論"},{"start":597.872,"end":624.805,"text":"那个钦佩委员您的推论完全正确因为我们要看的应该是发生率就是这个疾病的发生率很低这个才是正解不过过去是这样子写的可能在当时候药物的治疗的没有这么发达不像现在这个药物陆陆续续出来这么多所以我们来思考看看怎么来做一些调整"},{"start":625.345,"end":639.922,"text":"我们来讨论看看因为有的发生率很难精准因为发生率是严谨的一种统计那盛行率比较容易所以这两个会有落差没错"},{"start":640.702,"end":655.614,"text":"但是像委員說的確實如果治療的好他可能那個活下來了累積累積累積對 當然這也是我們期待的發生率應該是不會改變只是發生率的統計跟調查難度比較高"},{"start":656.314,"end":677.821,"text":"好因為本來我要問這個也不是很有把握但是我想就是這樣今天這個討論我想也提醒大家有個新發現那未來可以去思考看看這個名詞的定義要是不是要換或者是去調整盛行率好這個就是大家未來要討論的課題好謝謝好謝謝委員好謝謝"},{"start":690.97,"end":692.541,"text":"本次會議宣導全部結束"}]}},"supported_relations":[],"relations":[]}