不只是醫病 臺灣愛滋感染者的醫療現況 (2007) 出版社團法人中華民國愛滋感染者權益促進會地址 (100) 台北市桃源街 1 號 8 樓 803 室電話 (886-2) 傳真 (886-2) 電子郵件 網址

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1 HIV 不只是醫病 社團法人中華民國愛滋感染者權益促進會 Persons with HIV/AIDS Rights Advocacy Association (PRAA) 地址 : 100 台北市桃源街 1 號 8 樓之 3 電話 : 傳真 : Not Just Treatments / 臺灣愛滋感染者的醫療現況 / Add : Room 803, 8F., No. 1, Tao-Yuan St., Taipei, Taiwan, R.O.C. 100 Phone : ( ) , , Fax : [email protected] Web : 社團法人中華民國愛滋感染者權益促進會 Persons with HIV/AIDS Rights Advocacy Association (PRAA) Presents 2007

2 不只是醫病 臺灣愛滋感染者的醫療現況 (2007) 出版社團法人中華民國愛滋感染者權益促進會地址 (100) 台北市桃源街 1 號 8 樓 803 室電話 (886-2) 傳真 (886-2) 電子郵件 [email protected] 網址 贊助 Levi Strauss Foundation / 社團法人中華社會福利聯合勸募協會 作者呂昶賢 林宜慧顧問丁文 王蘋 李長春 巫緒樑 林瑞勝 林宜慧 吳嘉苓 張維 楊惠中 葉珈語 鄧宗業 蔡春美( 依姓氏筆畫順序 ) 英譯巫靜文中文編校林宜慧英文校對李長春排版孫珮慈美編孫珮瑀印刷 您可以自由分享本著作, 惟需遵照下列條件 : 姓名標示 非商業性 禁 止改作

3 目錄 Contents Chapter 1 求醫大不易 : 愛滋醫療照護 現行法令對愛滋醫病關係的規範 /2 不公平的醫療待遇 /2 醫護人員不願照護愛滋感染者的原因 /15 結論與建議 /18 Chapter 2 隱私全都露 : 愛滋醫療隱私 愛滋篩檢 /25 公衛追蹤 /30 健保 IC 卡 /32 與醫事人員的互動 /34 疾病作為一種個人隱私 /35 Chapter 3 政策面面觀 : 愛滋醫療政策 愛滋醫療經費給付政策的演變 /40 免費的藥, 有代價的醫療 /41 回歸公務預算對醫病關係的影響 /43 愛滋病指定醫院的數量不足 /44 指定醫院缺乏監督標準 /45

4 Chapter 1 求醫大不易 : 愛滋醫療照護 自 1997 年起, 臺灣的愛滋病治療進入雞尾酒時代 - 透過合併服用數種抗愛滋病毒藥物, 更有效地抑制血液中病毒的數量, 愛滋感染者與愛滋病患 ( 以下以 愛滋感染者 統稱 ) 的免疫功能也就得以恢復 愛滋病漸漸成為 慢性病 的一種, 愛滋感染者就如同高血壓 糖尿病患一般, 只要按時服藥 定期追蹤身體狀況, 多半能在社會中健康生活, 與常人無異 愛滋的發病與死亡率下降, 並不代表愛滋病的臨床醫療不再是愛滋感染者生活中最需關注的議題, 相反的, 正是因為愛滋感染者的人數越來越多 身體越來越健康, 反而曝露更多的醫療問題 本章所謂的 愛滋醫療照護, 旨在探究愛滋感染者於臺灣所遭遇到的醫療問題 - 愛滋感染者所能獲得的醫療照護品質, 是凝縮了臨床醫療 政策法規 權益 污名等議題複合而成的

5 求醫大不易:愛滋醫療照護2 [ 現行法令對愛滋醫病關係的規範 ] 後天免疫缺乏症候群防治條例 以下簡稱 防治條例 ) 是臺灣用來規範愛滋感染者相關權利與義務的特別法 本條例的第六條之一, 宣告了愛滋感染者的醫療權利 : 感染人類免疫缺乏病毒者之人格與合法權益應受尊重及保障, 不得予以歧視, 拒絕其就學 就醫 就業或予其他不公平之待遇 同法第九條, 規定愛滋感染者就醫時需告知自己感染愛滋的事實 : 感染人類免疫缺乏病毒者, 有提供其感染源或接觸者之義務 ; 就醫時, 應向醫事人員告知其已感染人類免疫缺乏病毒 防治條例 規定了愛滋感染者與醫護人員相互對待的方式 : 感染者就醫需要告知醫護人員自己感染愛滋, 醫護人員則不得 因歧視對愛滋感染者拒診, 或給予其它不公平的待遇 [ 不公平的醫療待遇 ] 對於在臺灣的愛滋感染者而言, 雖然已有法令明文規定不得歧 視 不得拒絕其就醫, 但實際上, 愛滋感染者要得到公平的醫 療待遇, 卻仍是困難重重 倘若告知是愛滋感染者就醫應盡的 義務, 我們發現隨之而來應得的醫療 權利, 卻常常付之闕如 : 許多醫護人員一知道就醫病人是愛滋感染者, 不是視之為洪水猛獸不願碰觸, 就是拖延更改醫療處置, 使就醫的愛滋感染者只能得到次等的醫

6 Chapter 1 療照護品質 即便在專門看愛滋的感染科診間 愛滋感染者已 沒有是否要告知的掙扎 也較少被拒診 但仍會經驗到醫護人 員的 另眼相待 以各式各樣的歧視態度進行醫療行為 以下將藉由實際發生的個案故事 更細緻地討論愛滋感染 者就醫可能遭遇到的被侵權對待 為了保護當事人的隱私 所 有的故事均非單一個案 而是累積許多人的真實經驗改寫而 成 並除了曾被媒體報導過的訊息外 任何可能被辨識的個人 資料都已經過修改 不公平的醫療待遇 就醫被拒 2005年1月10日淩晨 臺灣發生了一件後來震驚社會的 邱 小妹人球案 腦部重創 陷入昏迷的邱姓女童 在送進臺 北某醫院急診室後 卻因沒有病床而被轉出 在醫療資源最 豐富的臺北找不到病床 只能輾轉至臺中開刀 延誤了五個 多小時 最後急救十數天 宣告腦死 這種輾轉於醫院間被互踢皮球的故事 對愛滋感染者來說絕 不陌生 愛滋感染者在臺灣也宛如 醫療人球 常常陷入 病床不足 醫師不醫或是無藥可用的窘境 為了尋找醫療資 源 總是要從北到南四處奔波苦求 求醫大不易 愛滋醫療照護 Story.1 一名血友病患小瑜 化名 由於時常需要輸血 不自覺地因 此感染了愛滋 直到2004年院內的產前驗血檢查 小瑜才被 醫院告知此事 同時該北部某大醫院以設備不足為由 強迫 正在待產的小瑜立即出院 小瑜遍尋不獲願意收她的婦產

7 求醫大不易:愛滋醫療照護科 所幸最後彰化基督教醫院表示願意幫忙, 讓她以剖腹產 的方式產下一健康的寶寶 小瑜憤慨地說 : 產檢根本不是 要保護媽媽, 是要把有愛滋的孕婦趕出醫院 Story 年小美 ( 化名 ) 車禍, 救護車將她送往臺北某大醫院, 醫師表示骨折情況嚴重, 馬上替她安排開刀 然而, 就在小美表明自己為愛滋感染者後, 醫師馬上改口說 : 不用開刀了, 妳只要在家裡休養就好 並在小美病床四周圍起黃色警戒線, 昭告急診室的醫護人員 此處危險 請勿靠近 在急診室躺了兩個禮拜, 沒有醫護人員施以積極性治療, 最後她只好自行辦理出院回家 雖然有民間愛滋團體的工作者協助尋找, 但過了三個月, 還是沒有肯為她開刀的醫師 唯一表示願意的醫師, 遠在中南部, 小美的身體狀況很難承受這樣一趟路程 小美不解 : 為什麼要找個醫生替我開刀會這麼困難? 在醫療資源集中的現代社會, 病人別無選擇必須進入醫院, 仰賴醫護人員的診斷治療, 倘若醫師惡意拒診, 病人通常也只能摸摸鼻子放棄 況且病人若是如小瑜 ( 案例一 ) 即將臨盆 或是小美 ( 案例二 ) 車禍骨折般, 有急迫的身體病痛需要被醫治, 當務之急絕對是尋找願意收治的醫療資源, 而非在第一時間對拒診的醫師做出反應

8 Chapter 1 不公平的醫療待遇 延誤醫療 即便並未被明顯直接拒診 愛滋感染者仍常經驗到醫師使用 消極的治療方式延誤治療時機 Story.3 小黃 化名 與朋友到臺灣南部旅遊 因旅途勞累而感冒發 燒 在友人陪伴下掛急診 甫一告訴醫師自己是愛滋感染 者 醫師便請他稍等 並且不再有下文 眼看時間不斷流 逝 卻無人敢靠近小黃診治 一旁友人相當憤憤不平 對小 黃說 我們不要在這家醫院了 辦理出院後 他們直奔 另一家醫院 但這次小黃學乖了 不再跟醫師坦白 順利得 到醫療 拿到藥 小黃說 沒想到坦白換來的卻是不聞不 問 這樣誰敢跟醫師說自己有愛滋 求醫大不易 愛滋醫療照護 Story.4 小四 化名 原先在中部某地方醫院治療結核病 經親友介 紹轉至北部某區域教學醫院 希望藉此得到更佳的醫療 同 時評估是否需要開刀 然而主治的Ａ醫師在檢驗出小四感染 愛滋後 就不再施予積極的藥物治療 而是態度惡劣地告訴 小四的家人說 他沒藥救了 你們快點準備後事 這種病 死了要馬上火化 同時還警告小四的配偶感染愛滋的機率 相當高 全家人心惶惶 住院數十天後小四家人決定轉院 又遭Ａ醫師以研究病歷為名 拖延轉院時機 由於轉院得太 晚 小四病程已走到末期 雖然新接手的醫師表示願意繼續 努力 不放棄最後的希望 但搶救治療近兩個月後 小四還

9 求醫大不易:愛滋醫療照護是過世了 事後, 本會依照小四家人的意見, 透過院長信箱投書表達對 A 醫師的不滿, 但所得到的回覆卻是 在治療與溝通過程中, 本院皆已盡全力給予處理 本會評估, 即便我們申請到了病歷, 也可能有遭竄改之虞, 整件事在家屬不願繼續追究的情況下, 就此不了了之 我們從小黃 ( 案例三 ) 和小四 ( 案例四 ) 的故事不難發現, 延誤醫療使得愛滋感染者 知難 而退, 即是變相的拒診, 無法繼續等待下去的愛滋感染者, 仍需要另外尋找友善醫療資源 不公平的醫療待遇 : 次級待遇 愛滋感染者就醫時, 醫師會因其感染者身份而變更醫療處置, 使得愛滋感染者無法得到最理想的醫療照護 如小美 ( 案例二 ) 所經驗的開刀取消 改為在家休養便是一例, 這種醫療處置的變更, 明顯是因為得知小美感染愛滋之故, 但小美也無法反駁醫師的專業, 僅能默默接受這個結果 另一種次等醫療待遇, 發生在與其它科別會診時, 愛滋感染 者常經驗到被拒收 或是只能享有打折的醫療照護 Story.5 小慧 ( 化名 ) 已是固定就醫的愛滋感染者 2005 年, 確定懷孕並決定要生下小孩後, 她的感染科醫師開始四處拜託院內的婦產科醫師替小慧接生 好不容易某位婦產科醫師勉為其難的答應了, 想不到小慧在產房生完小孩後, 馬上就被推回

10 醫大不易關疾病, 對於真正嚴重需要跨科會診的疾患, 依然無計可求:愛滋醫療照護Chapter 1 感染科病房, 而不是在婦產科恢復, 得不到婦產科對產後孕 婦的醫療照顧 Story.6 小杰 ( 化名 ) 是某全國知名大醫院的資深愛滋義工, 在院內 熱心服務多年, 提供許多新感染者情感支持, 幫助其調適身 心 2004 年, 小杰發現身體越來越虛弱, 在多次檢查後醫 師宣告肝癌末期, 治療也不易見效 醫院社工與小杰已成 舊識, 擬安排小杰住進院內安寧病房, 在人生最終的這段 時間, 能得到人性化的照顧, 有尊嚴的度過生命最後一段時 間 但安寧病房以小杰是愛滋感染者為由拒絕其進住, 對於 為醫院貢獻良多的小杰而言, 安寧病房的拒絕使他一陣錯 愕 至終, 小杰都無法得到安寧療護的醫療資源, 在感染科 病房靜靜離開了人世 在臺灣的醫療體系中, 感染科本來就是較為弱勢的科別 當感染科醫師評估愛滋感染者需要其它科別介入治療時, 會診結果常遭他科醫師否決, 認定為不需要 即便有醫師肯協助治療, 醫療團隊中的其他醫護人員也可能表示反對 由於有太多負面的就醫經驗, 有些愛滋感染者學會直接找感染科醫師看感冒等小病 雖然感染科醫師所能提供的醫療診斷, 可能不比其他內科來的精確專業, 但對愛滋感染者而言, 卻是在現今普遍不友善的醫療環境中, 相對安全的替代方案 此外, 即便有些善意的感染科醫師願意診治非愛滋相

11 求醫大不易:愛滋醫療照護施 不公平的醫療待遇 : 歧視態度 有時候, 愛滋感染者並未被拒診, 實質上的醫療處置也未曾 被延誤或打折扣, 但在上述明顯可見的侵權行為之外, 愛滋 感染者仍常經驗到醫護人員有意無意的歧視態度 本會以為, 對愛滋感染者而言, 所謂公平的醫療待遇, 不僅是生病有醫師可看有藥可吃, 而是醫護人員面對愛滋感染者時, 仍應秉持尊重 負責的一貫態度, 展現醫療倫理以促進良好的醫病關係 然而我們看到上述小四 ( 案例四 ) 遇到的 A 醫師其所作所為, 就瞭解有些醫護人員的態度不但是缺乏同理, 更是粗暴而充滿歧視 Story 年一次送醫急診, 阿賢 ( 化名 ) 在院內抽血檢查驗出感 染愛滋後, 轉至感染科就醫, 卻遇到醫師的粗暴問診 醫師 問 : 你是同性戀嗎? 阿賢回答 : 不是! 醫師又詢 問 : 那你是異性戀去嫖妓嗎? 阿賢回答 : 沒有! 醫 師隨即表示 : 不可能! 除非你承認你是其中一種, 否則我 不會開藥給你 護士也在一旁幫腔 : 你知道嗎? 你們活 得越久, 政府賠的越多! 阿賢藥也不拿的憤而離去 事後 本會協助阿賢轉院, 換了另一位態度和善的感染科醫師, 才 能順利拿到藥 然而, 阿賢之後就只能千里迢迢的北上, 才 能定期回診

12 醫大不易你, 這樣吧 我就幫你開這個刀! 手術順利結束, 阿毛很快求:愛滋醫療照護Chapter 1 本會認為, 不論是同性戀 異性戀嫖妓或是注射毒品 ; 還是 手術輸血受感染 母子垂直感染或是不知情地被伴侶感染, 生病的人得到醫療照顧, 不該因生病原因而有差別待遇 不同科別的差異 : 高拒診率的侵入性治療 所謂侵入性治療, 臺灣官方引用美國疾病管制局的定義為 : 外科的進入組織 體腔或器官或是修復重大外傷者, 皆稱之為侵入性治療 從上述案例我們不難發現, 由於侵入性治療容易碰觸到病患的血液, 相關科別就更不願意收治愛滋感染者 以下我們將更細緻地討論與侵入性治療相關的醫療行為 : 外科開刀 婦產科分娩以及最普遍的牙醫處理口腔組織 1. 外科開刀與婦產科分娩 Story.8 阿毛 ( 化名 ) 感染愛滋數年, 已穩定在某大醫院就醫看愛滋 在 2005 年發現身上長有硬塊, 感染科醫師自知無法說服本院外科開刀, 便要阿毛自行尋找願意為他動刀的醫師 然而, 阿毛訪遍所有院內的外科醫師, 無一人首肯 後來阿毛換了一家醫院, 在不告知自己感染愛滋的情況下, 順利排定開刀日期, 但他一直在掙扎是否要告知醫師 直到手術的前一天, 他鼓起勇氣請醫師 B 支開旁邊的醫護人員, 向他說 : 我要跟你說一件事 我是愛滋感染者, 希望你幫我開刀的時候能小心一點 醫師 B 聽罷, 說 : 你很誠實我很欣賞

13 求醫大不易:愛滋醫療照護10 的復原了 愛滋感染者在外科要求開刀被拒是相當常見的 以外科在臺灣醫界歷史中的龍頭地位, 使得內外科會診時, 外科醫師更有權力認定 檢查後不需開刀 開刀也不見得會好 只要吃藥就會好 阿毛就不可能在原來看愛滋的醫院內找到外科資源 阿毛雖然幸運地在另一家醫院告知後未被排斥, 仍然按照預定日期於隔天開刀, 但倘若阿毛如同小美 ( 案例二 ) 一般, 在掛號預約開刀前, 就先坦承自己是愛滋感染者, 那麼是否能如此順利找到肯動刀的醫師, 亦未可知 目前在臺灣, 部分醫療院所就已有內部規定, 對於住院病人或需要開刀者, 不論是否取得同意, 皆對當事人抽血, 檢查是否感染愛滋 通常若發現等待手術的病人感染愛滋, 不少醫師會更改最初診斷並取消手術 越來越多的醫院與科別以種種方式, 意圖篩選出愛滋感染者, 使得感染者就醫的處境越發艱難 從上述案例一和案例五的故事, 我們明顯可以發現, 婦產科的醫護人員也並未準備好要面對愛滋孕婦, 甚至離譜地強迫臨盆孕婦出院 倘若沒有醫院肯收, 孕婦即將臨盆又該何去何從? 因此, 許多愛滋孕婦害怕被拒絕, 只好隱瞞自己感染愛滋病毒的事實 Story 年, 阿月 ( 化名 ) 的丈夫被發現感染愛滋, 防疫人員追 蹤到阿月時發現她已大腹便便, 在某開業醫院進行產檢 到

14 Chapter 1 了年中, 阿月羊水已破, 該醫師將阿月轉至臺大醫院生產, 阿月與產檢醫師雖然都知道阿月感染愛滋一事, 卻皆未告知臺大醫護人員 直到產後例行性的抽血檢查中, 臺大的醫護人員才知道阿月是愛滋感染者 此舉引發負責接生的臺大醫護人員強烈不滿與驚恐 雖然開誠布公的告知, 臺大醫院未必不願幫忙, 但在孩子臨盆之際, 阿月又怎敢甘冒被拒收的風險? 目前國內女性愛滋感染者的人數越來越多, 特別是 2005 年實施 孕婦免費全面篩檢愛滋計畫 後, 孕婦例行性的產檢中已加入愛滋檢驗, 因此, 許多孕婦不知情地被驗了愛滋 婦產科的醫護人員勢必要面對越來越多的愛滋孕婦, 倘若國內婦產科醫療環境仍對愛滋如此不友善, 類似阿月這種你抓我躲的故事, 就仍會繼續上演 2. 牙科處理口腔組織 討論愛滋感染者的醫療權, 就不能不談到牙科 因為不是每個人都會需要動手術 生小孩, 但鮮少有人從不看牙 對愛滋感染者而言, 更普遍的夢魘是牙痛時發現沒有牙醫肯治療 醫大不易為解決此一問題開辦感染者牙醫特別門診, 北部縣市的愛求:愛滋醫療照護11 本會一直接觸許多有相同困擾的感染者朋友, 因此曾在 1998 年發函, 請牙醫師公會提供 愛滋友善牙醫 的名單, 然而並無下文 直到 2001 年, 臺北市立性病防治所 ( 以下簡稱 性防所, 現改名為 臺北市立聯合醫院昆明院區 ),

15 求醫大不易:愛滋醫療照護12 滋感染者才終於有 一處 院所可以安心看牙 本會肯定牙 醫特別門診對愛滋感染者確實是一大福音, 但非北部的感染 者, 若不能坐車北上, 要看牙仍然無處可去 根據丁志音與涂醒哲在 1995 年及 1996 年, 對全臺所有執業西醫與牙醫所做的郵寄問卷調查, 扣除曾有照護愛滋感染者經驗的人, 共回收 1482 份西醫和 1685 份牙醫的有效問卷 兩群醫師族群對於愛滋的態度有有相當大的差異 : 表示不願意照護任何愛滋感染者的西醫約佔一成 (143 位 ), 牙醫卻超過五成 (893 位 ); 在詢問是否認為有權拒絕照護愛滋感染者時, 表達認為有權拒絕的西醫接近四成 (590 位 ), 牙醫卻超過六成 (1066 位 ) 可以發現, 牙醫師族群確實對醫治愛滋感染者的排斥態度遠高於一般醫師 然而有趣的是, 在原始的回函中, 自陳曾有照護愛滋感染者經驗的西醫有 220 位, 約佔西醫回函總數的 12.9%; 卻僅有 94 位牙醫表示曾照護過愛滋感染者, 約佔 5.3%, 比例上不到西醫的一半 台灣路竹會在 2002 年對全臺醫護人員所做的問卷調查結果也與此相似 : 平均而言, 有 39.8% 的醫護人員在問卷上填答曾遇過愛滋感染者看診, 但在牙醫師族群中, 卻僅有 18.4% 遇過愛滋感染者 並非愛滋感染者不看牙, 而是牙醫無法比照外科或婦產科, 主動以驗血方式找出愛滋感染者 另外, 感染者也會預期牙醫門診對愛滋的不友善與恐懼, 導致愛滋感染者多半會選擇以隱瞞的方式得到牙科醫療資源 依據 性防所 牙醫特別門診的調查顯示, 來治療牙疾的愛滋感染者中, 有九成之前

16 Chapter 1 是在私人診所治療, 而其中又有 84% 的極高比率, 在就醫時 並未告知醫師自己為愛滋感染者 顯然, 愛滋感染者與牙醫 族群之間, 存在惡性循環的醫病關係 加入性病防治所特別牙醫門診的黎傳鏜醫師說 : 臺北市是個大都會, 但愛滋病患者卻難以找到可安心治療牙疾的場所 與其醫病雙方互相隱匿, 不如做好防護裝備, 幫愛滋病患者治療牙疾 做好基本防護措施, 以互信尊重取代互相隱匿, 這是本會所樂見的愛滋醫病關係 結論 : 愛滋感染者的醫療權仍未得到平等保障 1. 愛滋感染者的 醫療權 被侵犯是普遍的現象 本會相信, 上述九個故事代表的並非少數特例 根據本會 註一 1999 年與另外四家民間愛滋機構合作所做的 愛滋醫療品 質調查 結果, 在回收的 138 份問卷中, 有超過七成五以上 (106 位 ) 不曾在就醫前告知醫師自己是愛滋感染者, 主要 是因為 擔心曝光 和 怕醫師拒診 求醫大不易:愛滋醫療照護13 這樣的害怕並非空穴來風, 因為另外兩成多 (32 位 ) 曾經告知醫師的問卷填答者中, 有接近五分之一 (6 位 ) 當場遭到拒診, 還有近十分之一 (3 位 ) 的人表示, 雖然醫師願意看診, 卻在過程中經驗被輕率的對待, 及拖延或敷衍的醫療方式 再以本會 2003 年至 2005 年三年間的電話諮商統計數為例,

17 求醫大不易:愛滋醫療照護14 共有 145 通次諮商電話是與 醫療照護 相關, 佔所有權益 問題中的百分之十 這也反映了 : 醫療照護一直是愛滋感染 者社群的主要困擾與需求 本會相信, 醫療權被侵犯的實際個案數量絕不僅於此 一方面是因為許多民間愛滋機構, 一直以來都有提供協尋醫療資源的服務, 也幫忙愛滋感染者與醫師溝通協商 另一方面, 由於醫病位階上的不對等, 病人在醫療體系中被侵權, 通常只能自認倒楣不敢聲張 ; 相形之下更加弱勢的愛滋感染者自然更是無力抗衡, 侵權個案量也因此被低估 2. 愛滋感染者的醫療權被侵犯是跨科別的現象 衛生署疾病管制局的首席防疫醫師楊靖慧, 曾在 2006 年一月至三月, 於全臺感染科診間發放問卷, 針對愛滋感染者的醫療品質進行調查 在回收的 611 份有效樣本中, 曾反應被拒診的科別統計如下 : 牙科 25 人 內科相關 27 人 外科相關 15 人 急診 6 人 這份調查結果顯示愛滋感染者就醫被拒的比例相當低 我們猜測或許是因為固定就醫且配合填答問卷的愛滋感染者, 是一群較為信任醫師 較少遭遇被拒診經驗的母群體, 而與本會在實務工作上接觸的被侵權愛滋感染者有所區隔 不論數據或母群體的異同, 這是第一份詳細統計愛滋感染者 曾被哪些科別拒診重要的調查報告, 值得注意的是, 除了牙 科拒診的比例確實偏高之外, 可以看到愛滋感染者就醫被拒

18 Chapter 1 是跨科別的現象, 不只是外科 婦產科 牙科, 連家醫科 泌尿科 骨科, 甚至感染科等, 都有愛滋感染者曾經就醫被 拒 此跨科別的侵權現象, 部分反映了醫護人員拒絕照護愛滋感 染者的原因, 不一定與醫療行為中被感染的風險程度相關 [ 醫護人員不願照護愛滋感染者的原因 ] 本節試圖討論醫護人員不願照護愛滋感染者的原因, 藉此理解為何愛滋感染者的醫療權被侵犯, 會成為一跨科別間的普遍現象 路竹會在 2002 年六月至九月, 針對全省 42 家醫院的醫護人員調查其對愛滋感染者的接受程度, 發出 1600 份問卷, 有效回收 1292 份, 本節將以此調查報告結果為基礎進行分析 在這份報告中, 有 42.9% 的醫護人員表示不願意照顧愛滋感染者 對於不願意照顧的原因, 高達 82.0% 的人表示 擔心受感染,27.1% 表示 擔心因接觸愛滋病患而朋友疏遠或不被家人接納,21.1% 表示 不喜歡愛滋病患或 HIV 帶原者 以下以這三類理由為架構, 討論辨析 擔心受感染 社會壓力 與 價值偏好 等三層壓力的來源 醫大不易所有相關研究一致指出 : 醫護人員不願照護愛滋感染者的求:愛滋醫療照護15 不願照護愛滋感染者的原因 : 擔心受感染

19 求醫大不易:愛滋醫療照護16 主要原因即是, 擔心受感染 或許你會想知道, 究竟為了避免感染愛滋, 醫護人員需要什麼樣高規格的防護措施? 早在 1990 年, 台灣愛滋病之父 莊哲彥教授就在疾病管制局出版的 愛滋病全貌 一書中指出 : 只要能避免 B 型肝炎傳染的保護措施, 就能隔絕愛滋病毒傳染的可能 事實上, 愛滋的傳染途徑和 B 型肝炎完全一模一樣, 甚至 B 型肝炎病毒的傳染力遠高於愛滋病毒 以臺灣 B 型肝炎的盛行率, 及醫界對 B 型肝炎的熟悉程度, 自可準用 B 肝經驗與相關保護措施 因此, 要避免愛滋病毒的院內感染, 並不需要另立一套特殊規格的醫療防護, 只要確實遵守臺灣已有且基本的防護措施, 即便是最高風險的侵入性治療手術, 都可以藉此隔絕愛滋病毒的傳染, 其他科別自然更沒有理由害怕拒診 事實上, 到目前為止, 台灣並沒有任何證實因醫療行為而感染愛滋的醫護人員 對愛滋病毒可能傳染的擔心, 該建立在確實的科學基礎上, 才可能恰如其份的評估醫療行為的風險高低 不願照護愛滋感染者的原因 : 社會壓力 本會曾擬頒發感謝狀, 對願意替愛滋感染者開刀的醫師表達謝意, 但許多醫師卻不願意接受公開表揚, 其理由在為善不欲人知之外, 或許還有公開之後隨之而來的社會壓力的擔心 擔心朋友疏遠或不被家人接納是一壓力來源, 而特別是自己

20 Chapter 1 開業的醫師更會擔心消息一旦走漏, 會造成其它看病民眾的恐慌, 導致無人敢再上門 從這些擔心與壓力, 我們再度看見臺灣社會對愛滋污名的嚴重程度 : 當一位醫師遵守醫療倫理 採取人道關懷的立場, 表示願意醫治愛滋感染者, 反而可能因此導致該醫師的私領域與收入來源有受影響之虞 此外, 醫界文化的位階高低也造成了壓力 許多年輕一輩的醫師, 對愛滋議題的接受程度較高, 也有較正確的認識, 但囿於院內資深年長醫師的不支持, 也不敢答應醫治 以案例八的醫師 B 為例, 其它不願為阿毛開刀的醫師, 有些是他醫界的前輩先進 有些是他的學長, 因此醫師 B 更是不敢讓那些拒診醫師發現他替阿毛開刀, 以免引人側目 如同愛滋感染者般, 在種種社會壓力下, 對愛滋友善的醫師也不敢 曝光 - 公開願意醫治愛滋感染者的醫師, 同時就被放到與愛滋污名連結的位置上, 必須面對公私領域的驚懼與排斥 不願照護愛滋感染者的原因 : 價值偏好 在上述丁志音與涂醒哲的研究中, 指出醫護人員不喜歡愛滋 感染者的不舒服反應, 是對愛滋感染者的選擇性歧視 醫大不易例如受母子垂者或接受輸血而感染病毒的 無辜者 ; 只有求:愛滋醫療照護17 調查結果表示, 雖然各有 57.8% 的醫師和 35.1% 的牙醫師認 為, 醫護人員無權拒絕照護愛滋感染者, 但其實有 27.7% 的 醫師和 14.5% 牙醫師聲稱只願意照護 不知情 的感染者 -

21 醫大不易:愛滋醫療照護 % 的醫師以及 18.1% 的牙醫師願意照護 所有的 愛滋 感染者 進一步分析 752 名聲稱願意照護某些類別愛滋感染者的醫師與牙醫師, 研究結果顯示, 其中有 70.1% 不能接受靜脈注射毒癮者, 另外有 49.1% 不能接受嫖妓者, 最後則有 32.3% 排斥男同性戀 我們看到, 一樣是感染愛滋, 卻因為不同的社會身分而有不同的被對待醫療方式 按照常理推斷, 不同身分的愛滋感染者在臨床照護中感染醫護人員的風險差異並不大, 因此, 對不同族群選擇性地照護意願, 正揭示了醫護人員的價值偏好確實造成愛滋感染者的醫療權被侵犯 [ 結論與建議 ] 以臺灣目前愛滋感染者人數上升的現狀看來, 沒有任何一位醫 護人員能對此議題不再關心 本會建議 : 專科醫學會應有內部討論與規範 既然愛滋感染者求醫遭到不公平的醫療對待乃是一跨科別的普遍現象, 各專科醫學會 - 特別是侵入性治療相關科別 - 自求當應有內部討論, 評估各自科別的醫療處置後, 針對愛滋病 B 型肝炎此類疾病感染者訂定細部的處理流程 唯應參

22 Chapter 1 考各國同科別醫學會的相關處理方式, 務以科學實徵研究結 果為制定規範之基礎 醫學教育 醫院在職訓練中應加入愛滋專業知識與照護訓練 醫護人員應該要理解, 愛滋病毒已是一傳染途徑明確而有限 的病毒, 才能避免過度驚恐害怕被感染 在上述路竹會的調查中, 有 76.3% 的醫護人員承認自己缺乏照護愛滋感染者的專業知識與相關訓練, 而其他 23.7% 受過訓練的醫護人員之中, 有近八成 (77.4%) 認為這些專業訓練有助於減輕面對愛滋感染者的心理壓力 此外, 實際與愛滋感染者有過接觸的醫護人員, 表示願意照護的比例也高於不曾接觸者, 這有可能是在實際互動中, 對愛滋刻板污名的鬆動, 及對愛滋傳染性的再思考所致 因此, 在醫學教育 醫院在職訓練中加入愛滋專業照護訓練, 以及設計實際接觸愛滋感染者的實習課程, 都有助於改變醫護人員對照護愛滋感染者的態度, 避免愛滋感染者的醫療權受損 醫院應落實標準防護措施 醫大不易落實 除了實務工作上覺得麻煩之外, 有些醫院則是出自成求:愛滋醫療照護19 儘管醫護人員只要遵守一般標準的防護措施, 就不會有感染 愛滋的可能, 但實務上, 許多第一線的醫護人員卻並未徹底

23 求醫大不易:愛滋醫療照護20 本考量, 控管縮減醫護人員防護用具的使用量, 使得標準防 護措施實際上窒礙難行 許多醫院不願落實防護措施, 反而開始在驗血時把愛滋列入常規檢查 ; 篩選出愛滋感染者的目的並非要更謹慎小心的提供醫療, 而是要將其排除於醫院之外 啟動這些篩選機制, 在醫病關係不平等的現狀下, 最後愛滋感染者總是無處可躲, 只能冀望找到願意醫治的醫師 事實上, 將愛滋病人抓出來, 醫院就安全 的操作思維, 反而容易使醫護人員輕忽應有的標準防護措施, 造成嚴重的院內感染 醫院管理者應摒除精算經營與僥倖思維, 在制度上重申院內 各科應落實標準防護措施, 肯定其對醫護人員的保護作用, 藉此打造杜絕院內感染可能性的安心醫療空間 醫護人員需反思不對等的醫病關係 不對等的醫病關係, 使得愛滋感染者遭到不公平的醫療待遇當下無法申訴 事後也難以追究 在本會與愛滋感染者一同為醫療權努力的工作過程中, 僅是緊急協尋友善的醫療資源就已是不容易 雖然發生了具體明顯的侵權事實, 但要訴諸行政監督或法律正義更不容易, 臺灣目前沒有任何愛滋感染者為爭取自身醫療權而訴諸司法 病歷等關鍵證據掌握與取得權利的不對等, 使得我們申請的 病歷難保沒有竄改之虞 即便病歷正確無誤, 醫病專業知識 的不對等, 使得本會與被侵權的感染者朋友皆無法直指醫護

24 Chapter 1 人員 拒絕醫療 - 求醫者並非醫療專業人員, 遇到醫療處置的變更 或是它科醫療團隊的否決, 有時確實是難以斷定是否為純粹的 醫療考量, 或是惡意的 次級待遇 證據的取得與判定, 皆有賴醫療體系本身, 這類球員兼裁判的制度, 使現有結構難以動搖 除了醫界內部應對醫療倫理有更多反思之外, 醫護人員本身 更應意識到醫病關係的不對等, 以此自律, 避免在照護愛滋 感染者的工作中帶入道德偏見 醫院應創造雙贏的醫病關係 路竹會的調查結果我們發現, 醫護人員普遍認為愛滋感染者需要告知醫師 在 1292 位醫護人員中,97.6% 認為法律應強制規定病患必須告知醫護人員特殊病史 主因為 保護醫護人員安全 (97.0%) 與 以提供適當治療 (85.3%), 然而, 在本章案例中, 保護醫療人員安全的 適當 治療, 對愛滋感染者而言, 卻是不公平的醫療待遇 醫大不易造成就醫必須背負著隱瞞未告知的法律責任, 並可能因此接求:愛滋醫療照護21 理論上, 只要醫護人員遵守標準防護措施, 就不會有感染愛滋的可能, 愛滋感染者似乎也不需要特別做告知的動作, 以確保醫護人員的安全 但實際上, 愛滋感染者卻是希望可以明白告知醫師的, 藉此能讓醫護人員更了解自己的身體狀況, 避免在開藥 手術過程中, 做出與愛滋醫療相衝突的處置 然而, 在一次次就醫被拒的經驗中, 愛滋感染者學到了教訓, 知道必須對醫護人員隱瞞才能得到醫療資源 此舉卻

25 求醫大不易:愛滋醫療照護22 受了傷害身體的醫療服務 本會認為, 雙贏的醫病關係應是 : 愛滋感染者能大方告訴醫護人員其感染事實, 醫護人員在不需要猜忌捉捕的狀況下, 能夠安心 專心地提供良好的醫療照護品質 然而, 唯有越來越多醫師肯主動表示願意醫治愛滋感染者, 才可能打破這種 你抓我躲 的惡性循環, 建立對愛滋感染者友善而安全的醫療環境 註釋 註一 : 四家愛滋民間機構分別為天主教露德之家 浮木濟世會 希 望工作坊 台灣愛之希望協會

26 Chapter2 隱私全都露 : 愛滋醫療隱私 在 1987 年開始討論 防治條例 的擬定時, 立法者多著 重在對疾病的防堵追蹤, 尚缺乏對愛滋感染者就業 就 學權益的保障, 唯一明文宣示維護的就僅有隱私權 防治條例 第六條制定了愛滋感染者在醫療體系中的隱私權應被保障 : 各級衛生主管機關 醫療機構 醫事人員及因業務知悉感染人類免疫缺乏病毒者之姓名及病歷有關資料者, 對於該項資料, 不得無故洩漏 經過了 20 年, 隱私權依舊是愛滋感染者最在意 也最需要落實保障的權益 事實上, 愛滋感染者的隱私曝光, 通常會連帶影響其它的權益受損, 以及周遭家人朋友同事的歧視, 頓時面臨失業 無法入學或是必須搬遷等等困境 因此, 在愛滋依舊被高度污名化的臺灣社會, 要保障愛滋感染者的權益, 避免其隱私權受損是最為重要的 愛滋感染者 / 非感染者作為一種被醫學知識所建構的主體, 在被辨識標定 ( 篩檢 ) 被控管( 追蹤 註記 ) 以及取得醫療資源 ( 就醫 例行檢查 ) 等各個環節裡, 都必然會碰觸到醫療體系對 愛滋 此標籤的處理邏輯, 和經驗到各級醫療單位第一線醫事人員如何對待愛滋感染者 ( 或疑似感染者 ) 正是愛滋感染者與醫療體系的關係密切, 在醫療行為中如何確保個人隱私不被侵犯曝

27 光, 就成為愛滋人權的基礎 本章要討論的愛滋醫療隱私, 並不僅止於愛滋感染者就醫的隱私權 從權促會接獲申訴以及與隱私權受損的愛滋感染者一起爭取權益的經驗中, 本會認為, 愛滋醫療隱私受損主要可從愛滋篩檢 公衛追蹤 健保 IC 卡註記 以及與醫事人員的互動這四個議題來探討 本章將分別論述, 愛滋 ( 身體的疾病 ) 作為一種個人隱私, 在這四項愛滋相關的醫療行為和公衛政策中, 並沒有得到應有的重視和保障

28 Chapter 2 [愛滋篩檢] Story 阿文 化名 不知道自己已感染愛滋而捐血 寫上辦 公室電話作為聯絡方式 兩週後 衛生局的工作人員打電話 到阿文的公司 並透露其感染事實給經理知道 隔天他馬上 被約談並強迫休假 雖然衛生局事後繼續致電經理 解釋愛 滋病毒不易傳染 但仍無法彌補個案被迫離職的事實 愛滋的潛伏期長短因人而異 愛滋感染者也無法從外觀上辨 認 唯一能確定感染愛滋的方式就是醫學上的篩檢 許多愛滋 感染者都如同阿元一般 在未經告知的情況下被驗了愛滋 又 遭到不當洩漏 導致其它權益一同受損 篩檢原先是讓個人瞭 解自己健康狀況的醫療技術 卻潛藏著隱私被暴露的危險 目前在公衛政策上 愛滋篩檢又可分為主動監測與被動監測 主動監測 隱私全都露 愛滋醫療隱私 防治條例 第八條提供了強制篩檢的法源 各級衛生主 管機關應通知左列之人 於期限內至指定之醫療機構 免費 接受人類免疫缺乏病毒有關檢查 逾期未接受檢查者 應強 制為之 一 接獲報告或發現感染或疑似感染人類免疫缺乏 病毒者 二 與感染人類免疫缺乏病毒者 共同生活或有性 接觸者 三 其他經中央衛生主管機關認為有檢查必要者 前項第三款有檢查必要之範圍 由中央主管機關公告之 25

29 隱私全都露:愛滋醫療隱私26 愛滋在臺灣 20 多年, 有 檢查之必要 的族群範圍逐年增加 越來越廣 至今公告列入主動監測的族群計有 :1) 從事色情行業者 嫖妓者 ;2) 毒品施打 吸食或販賣者 ;3) 矯正機關收容人 ;4) 性病患者 ;5) 外勞 ;6) 役男 ;7) 新兵 ;8) 捐血 ;9) 孕婦 ;10) 其他高危險行為族群 根據現行作法, 役男在入伍前 入伍後和退伍前都必須統一接受愛滋篩檢 ; 矯正機關收容人除了新進監所者需要接受愛滋篩檢外, 每年還有一次包括所有受刑人的全面篩檢 ; 外勞入境時除了要有所在國醫院的愛滋檢驗合格證明, 在 3 日內還要由雇主帶到外勞健檢指定醫院檢查, 之後 個月還要各檢查一次 ( 相較之下, 白領階級或前來觀光的外國人就不會被如此對待 ) 役男 收容人 外勞三類族群都不止一次地被迫要接受愛滋強制篩檢, 在制度的設計下, 也沒有拒絕的可能 目前 (2006 年 ) 孕婦的愛滋篩檢雖然並非強制性, 有些醫院卻是採選擇退出 (optional out) 的方式 也就是說, 倘若孕婦產檢前不主動表明 不做愛滋篩檢, 醫院便會自動地將愛滋納入產檢, 因此, 許多孕婦在不清楚產檢項目的情況下, 就被加驗了愛滋而不自知 此外, 隨著母子垂直感染議題的被關注, 疾病管制局也正研擬要在產檢中全面 強制 加驗愛滋 註一姑且不論性工作者 藥癮者和性病患者是否真為愛滋易感 族群, 我們更要質疑的是 : 上述主動監測的族群, 究竟是檢 查之必要族群 易感族群? 或是檢查之 方便 族群? 在就

30 Chapter 2 職 服役 入監 生產等既有身體檢查中, 強制加入愛滋篩 檢, 不但是篩檢政策的便宜行事, 被篩檢人常常處於無法拒 絕的位置, 更反映了此政策是以篩檢之名 行歧視之實 Story 年, 阿山 ( 化名 ) 自行到某市立醫院做例行性的員工健康檢查, 體檢項目包括梅毒與 A 型肝炎, 然而拿到報告後, 他楞住了 雖然公司並未要求愛滋篩檢, 檢驗結果卻自動多出愛滋一項 阿山發現在他事前不知情的狀況下, 醫院竟然替他做了愛滋檢查 阿山對此感到不解, 醫院竟回答 : 你們公司一定會要求檢查的啦! 市立衛生局局長則對此發函回覆說 : 基於公共衛生傳染病防治立場, 凡梅毒檢驗加驗愛滋抗體檢查, 且不收費, 是為社會中隱藏之可能感染加強把關, 以確保你與家人的健康, 阿山被迫加驗了愛滋, 卻以公共衛生為由合理化 事實上, 有些衛生局為了 績效, 在社區舉辦免費健檢時, 也會把抽血的檢體拿去驗愛滋, 在衛生主管機關的鼓勵下, 許多醫院也在各式體檢中或明或暗地加入愛滋檢驗, 越來越多公司也深受影響, 在就職體檢中主動要求加入愛滋篩檢 強迫或偷渡的主動監測機制, 正暴露了現今衛生政策的思 維, 是 篩出感染者 優先於 尊重個人隱私 私全 被動監測隱都露:愛滋醫療隱私27

31 隱私全都露:愛滋醫療隱私28 被動監測又分為 具名 與 匿名 篩檢兩種, 對愛滋有認 識者多選擇匿名篩檢 由於愛滋有太多的道德汙名, 為了鼓勵懷疑自己感染 卻不 願意曝光的人能面對自己的身體狀況, 匿名篩檢的設計應運 而生 事實上, 當一個人使用真實身分被驗出感染愛滋, 醫 院會馬上向衛生署通報, 當事人將快速地被公衛護士追蹤 註二管控, 此外, 感染愛滋也連帶影響保險 兵役 就醫 工 作等平日生活 既然確定感染愛滋對當事人的影響如此之大, 本會以為, 匿名篩檢除了能提高潛在可能感染者主動篩檢的意願, 更重要的功能是, 匿名篩檢能讓當事人有緩衝的機會, 等到心理 生活等層面都準備好了之後, 再使用具名的方式進入醫療公衛體系, 面對自己的感染者身分 然而, 在衛生主管機關極欲找出並控管愛滋感染者的思維之 下, 匿名篩檢的實際操作就失去了原先設計的美意 Story.3 按照一般匿名篩檢的標準程序, 當檢驗結果為異常時, 還需要再做一次篩檢, 倘若結果仍是異常, 才要具名, 並以西方墨點法做最終確認, 確認感染無誤後, 醫院會馬上通報當地衛生局, 將篩檢者列管追蹤 阿雯 ( 化名 ) 的遭遇卻並非如此 她去醫院做愛滋匿名篩檢, 一週後, 醫院通知她結果異常, 為了要做進一步的確認, 請她帶健保 IC 卡來醫院做檢驗 阿雯到了醫院, 才知道醫院已經先用同一管血幫他偷做

32 Chapter 2 了西方墨點法, 也就是說, 醫院早已確認阿雯的確實感染愛 滋, 竟以篩檢為由, 要她提供健保卡好得到阿雯的真實姓名 資料, 以便通報 Story.4 阿賢 ( 化名 ) 到醫院做愛滋匿名篩檢, 護士不但並未說明流程, 反而嗤之以鼻的說 : 真搞不懂你們為什麼要做匿名篩檢? 這樣檢查出來如果有愛滋, 你是拿不到藥 沒辦法看醫生的 阿賢在惶恐擔心之下, 只得選擇以真名篩檢 護士隱瞞了確定感染後, 只要再做具名的西方墨點法就得以就醫, 卻以恐嚇的方式要求篩檢者具名 事實上, 在臺灣社會, 醫護人員的話很少會被質疑, 這使得醫療處置前的告知同意有時形同虛設 或是根本未被執行 醫院以隱瞞 便宜行事或欺騙的方式取得疾病資訊, 實已嚴重侵犯了個人的隱私權, 更令許多人在還未準備好的情況下, 被迫進入通報流程 本會認為, 疾病資訊作為一種隱私, 人民有權利選擇是否接受各種檢驗, 以及檢驗的項目必須如實 此外, 篩檢出愛滋感染者並不等於防治良好, 倘若確定感染 愛滋, 就等於基本人權的嚴重受損, 當然沒有人願意主動篩 檢, 你抓我躲的雙輸局面正是由此而來 隱私全都露:愛滋醫療隱私29

33 隱私全都露:愛滋醫療隱私30 [ 公衛追蹤 ] 在臺灣的愛滋感染者, 只要一確定感染, 就會馬上被通報列管, 定時接到公衛護士的追蹤調查, 雖然有部分的公衛護士出於關心愛滋感染者, 會藉此詢問其就醫 用藥的狀況, 但實際上公衛護士追蹤制度的設計, 是將愛滋感染者視為罪犯來進行管控 Story.5 小凱 ( 化名 ) 感染愛滋多年, 經歷數任公衛護士的追蹤, 每換一位追蹤者, 就打電話要他從頭到尾詳述一次感染經過 : 是不是同性戀? 是不是去嫖妓? 還是吸毒? 令小凱不勝其擾 此外, 每個月護士也會打電話詢問小凱 : 最近有沒有做愛? 有沒有戴套? 不管他是否有進行安全性行為, 都要小凱把他的性對象帶去醫院做愛滋篩檢 使得小凱與護士之間的關係越來越緊張 護士最後要求小凱, 必須每個月主動向她報告控管所需的資訊 Story 年, 某老護士追蹤小玉 ( 化名 ) 未果, 決定換上便服親自登門了解 老護士遇到小玉的父親, 詢問 : 請問小玉在嗎? 他有在吃藥嗎? 我是他的朋友 玉父起疑反問 : 他是有什麼病嗎? 老護士慌張掩飾 : 沒有啦, 按照規定我不能說, 我是衛生局的, 可不可以請他打來跟我聯絡? 最後小玉的父親終於猜到他兒子感染愛滋, 當夜高血壓發作送醫, 全家指責小玉不孝 本會社工與護士連絡後, 護士表示她並未直接洩漏小玉感染愛滋者一事, 在追蹤的業績壓力下, 她努力找到小玉家, 好不容易有了線索, 自然會想要多了解 多問一些資料, 不然她無法交差

34 Chapter 2 防治條例 的第九條規範了愛滋感染者坦承接觸者的義務, 並明定主管機關得以主動調查 : 感染人類免疫缺乏病毒者, 有提供其感染源或接觸者之義務 ; 就醫時, 應向醫事人員告知其已感染人類免疫缺乏病毒 各級衛生主管機關得對感染人類免疫缺乏病毒者, 及其感染源或接觸者, 實施調查 在實務上, 許多人感染愛滋的隱私被侵犯, 就是肇因於公衛護士的追蹤 追蹤人員的資格為何? 權職為何? 從許多愛滋感染者的經驗裡, 本會認為, 追蹤技巧的不足以及對愛滋的歧視, 都是現今不少公衛護士的工作現況, 追蹤工作仍有亟需改善的空間 追根究底, 當前 追蹤等於控管 的思維, 以及公衛護士大量的工作業績要求, 更使得追蹤工作只能粗暴快速的被執行 目前愛滋公衛追蹤的作法是, 只要電話失聯 當月三次追蹤未果後, 公衛護士就會比對戶政資料, 從戶籍地址尋訪失聯感染者 倘若愛滋感染者已離開戶籍地, 公衛護士就會比對愛滋指定醫院和健保局的就醫 投保資料, 也就是說, 除非愛滋感染者不看病, 否則總是會被找出目前的所在地, 追蹤程序堪稱嚴密 私利於愛滋防治工作的 隱全都露:愛滋醫療隱私31 然而, 如此追蹤對於愛滋是否真有防制之效? 以口頭詢問的方式要求愛滋感染者提供性接觸者名單, 是否真能杜絕愛滋散播? 事實證明, 公衛追蹤制度不但常直接間接地曝露了愛滋感染者的隱私, 也造成感染者與護士之間的緊張關係, 反而是不

35 [健保IC卡] 健保IC卡這個看似便民 節省醫療資源的政策 事實上卻是愛 滋感染者醫療隱私的一大漏洞 自2002年起 健保IC卡就引發愛滋感染者社群集體的討論與擔 心 雖然在實施的第一階段並不會登入重大傷病 但依照健保 IC卡的政策規劃 愛滋感染者認為 在第二階段IC卡整合重大傷 病卡後 所有的醫師都可以自讀卡機得知病人是否感染愛滋 從此愛滋感染者看病就更加困難 而且感染者的隱私就徹底在 全國醫師面前透明 經歷許多專家 學界與民間團體討論與反應後 中央健保局在 公文中承諾本會 2005年的健保IC卡第二階段登載內容 與愛 滋相關的疾病資訊皆不登載 儘管如此 因健保IC卡的緣故產 生的就醫隱私問題 仍然遍佈全臺 32 隱私全都露 愛滋醫療隱私 Story 年 阿民 化名 在某愛滋指定醫院固定回診看愛滋 一日在家裡附近診所看感冒時 診所醫師就問他 你是去 大醫院做什麼血清檢查 阿民忐忑不安 在下次例行愛滋 檢查時 詢問主治醫師 醫師插卡後特別檢查處方簽的部 份 發現 HIV病毒負荷量檢查 等字樣 才發現事情不對 後來經過愛滋民間團體的提醒 所有去過這家醫院看病的愛 滋感染者開始自我檢查 有六位發現自己的IC卡上同樣有被 加註 很可能他們的資訊已被複製到日常看病的診所 造成 其隱私曝光 醫師表示 這是電腦程式的設計問題 只要一 作病毒量檢查 醫院系統就會自動寫入 並非他所能左右

36 Chapter 2 本會陸續接到不同地區的感染者因健保 IC 卡而隱私被侵害, 顯然 IC 卡註記愛滋並非只是單一醫院的特例 : 至少有六家愛滋指定醫院的院內系統, 並未事先按照健保局的指示, 針對愛滋的疾病代碼有完善的設計 當醫師按照院內系統指示鍵入資料後, 健保 IC 卡會自動被寫入愛滋相關就醫資訊 : 有些醫院系統會寫入處方籤的檢查或用藥 有些醫院則是在主診斷的部份寫入 人類免疫缺乏病毒感染 倘若不照院內系統的指定方式鍵入, 電腦就無法結束看診, 即使醫師用別的疾病代碼想保護病患隱私, 也因為疾病名稱的不同, 無法被認定為重大傷病, 電腦就無法計價 最後, 為了拿藥, 感染者只能在櫃檯將診斷改回愛滋, 再以謊稱遺失 補辦新卡的方式解決被登入註記的問題 在本會與各醫院溝通時, 除了部分醫院以醫師安全為由, 不願更改系統之外, 大部分的醫院都配合中央健保局的決定, 修改院內系統 然而, 縱使數間醫院的系統已做修改, 醫師也看不到 IC 卡上有任何異樣註記, 從 IC 卡實施第二階段至今, 仍不斷有感染者在新系統中遭到登入, 向本會申訴 至今愛滋感染者依然無法安心就醫 本會在健保 IC 卡政策上的努力與經驗, 正揭露了 IC 卡政策由上而 下的落實困難, 以及醫療資訊系統的龐大複雜, 已非單一醫師 或醫院資訊室工程師可以處理 衛生主管機關事前向全民做出 的隱私權保障承諾, 竟是如此脆弱不堪 隱私全都露:愛滋醫療隱私33

37 [與醫事人員的互動] 近年來 醫療 作為一種個人隱私的概念慢慢的在臺灣被重 視 如同臺大醫院的 小蜜蜂 小密封 運動 的理念 醫界 慢慢認同疾病在未經病人同意下 是不應該被公開的 即便是 公共衛生所需 公開的範圍也應該約束在最少限度 隨著愛滋感染者人數的增加 越來越多的醫事人員也懂得保護 愛滋感染者的隱私 然而 在與醫護人員互動過程中 仍然有 隱私相關的侵權事件發生 Story.8 阿黃 化名 因肺結核住院 院方懷疑阿黃感染愛滋而逕自 抽血檢驗 在檢驗結果確定感染後 又轉告阿黃的姐姐 自 此之後 親友就不再前來探病 對自己的身體病況 阿黃竟 然是最後一個知道的 醫院護士向本會解釋 告知病情是由 臨床醫師負責 經驗上擔心個案無法接受 會先告訴家屬 再由家屬決定是否告知病患 如此看似符合醫療倫理的經驗 法則 實已侵犯阿黃的隱私權 反而造成家屬的排斥 34 隱私全都露 愛滋醫療隱私 Story.9 小玉 化名 在某愛滋指定醫院就醫 在一次回診中 看到 護士們互相推託 不願替他抽血 才知道自己病歷上有一個 代表感染愛滋的記號 不論是在該醫院的任何一科看診 醫 護人員都可以馬上從病歷上的記號 辨識小玉為愛滋感染 者 另一次住院經驗 則是曾任職護士的朋友 在小玉的病 床旁看到感染性廢棄物袋 開始猜測小玉是否感染愛滋 造 成許多困擾 這些不愉快的經驗使得小玉對醫院失望 不願

38 Chapter 2 再定期回診 醫院內部有許多符號標定 分類與處理病人, 然而是否所有的醫護人員都需要知道病人為愛滋感染者, 卻是可被質疑的 本會認為, 醫護人員只要遵守傳染病防護標準程序, 就不會有感染愛滋之虞, 無須對待愛滋感染者以雙重標準 現今愛滋感染者的院內會診, 就同時被迫對其他科別的醫護人 員曝光, 不只導致其隱私權的被侵犯, 通常也連帶影響其醫療 權的完整 還有一種醫療隱私被迫曝光的狀況, 是發生在愛滋感染者過世 之後 雖然愛滋並不是透過空氣和飲食傳染的疾病, 但目前對 註三愛滋感染者的遺體處置, 仍然必須 依規定 採取 24 小時內 火化的處理, 與傳統喪葬習俗不符, 使得喪家與親友發現, 往 生者原來是死於愛滋相關症候群, 家屬因此所受的衝擊之大, 更甚於因其他疾病 本會認為, 現行的處理方式只是沿襲傳統 對急性傳染病死者的處理, 並沒有實證科學知識相佐 對死者 而言, 保守一輩子的秘密卻在死後被迫揭露了 [ 疾病作為一種個人隱私 ] 私全都露是受到道德譴責與侵權對待的被烙印身分 隱:愛滋醫療隱私35 愛滋不只是醫學定義的 症候群, 更是道德 法律所標籤懲 罰的 社會病 ; 愛滋感染者是一種身體狀態的描述, 也同時

39 隱私全都露:愛滋醫療隱私36 愛滋醫療隱私所衝撞出的相關議題, 一方面反映了愛滋在臺灣社會仍是備受污名歧視, 使得感染愛滋成為一種不可說 不可洩漏的隱私 ; 另一方面, 從衛生主管機關的相關政策, 可以看到疾病作為一種個人隱私, 確實是不被重視, 常以公共衛生為由而犧牲 從本章的討論, 本會相信 : 是否感染愛滋乃屬於個人隱私, 每個人有權利決定保守或告知的對象 並且從事實可證, 以公共衛生 保護醫事人員為由, 犧牲病人隱私的強制介入方法, 都適得其反地造成負面結果 : 1. 強制篩檢而不顧人權, 原先想找出更多愛滋感染者, 卻造 成各級醫院與大小公司的跟進, 不但無助於愛滋去污名化, 反而讓隱性的可能愛滋感染者更加驚恐與躲藏 2. 嚴密的公衛追蹤, 原先設計是為了監控管理愛滋感染者, 實際操作卻無益於感染者的行為改變, 反而讓愛滋感染者更 無法信任醫療體系 3. 這幾年健保 IC 卡的政策擬定與落實, 雖然有主管機關承諾保障特殊疾病的相關隱私, 但實際發生的侵權事件, 卻反映了政策制定的輕忽 醫院技術操作上的困難 要在病歷電子化的時代保障個人醫療隱私, 已更加困難 4. 雖然近年來, 疾病做為一種個人隱私的觀念慢慢被倡導, 但是從感染者與醫護人員互動的經驗中, 我們仍看到醫護人

40 Chapter 2 員隱私教育的不足, 以及醫院舊體制仍具有可能侵害個人隱 私的漏洞 愛滋醫療隱私的討論並不只與愛滋感染者有關 透過本章的討論, 我們可以看見, 現今的醫療體系與政策, 是以越來越細緻的方式窺探獲取民眾的身體資訊, 並藉此分類 管理 作為現代社會的個體, 不論是否為愛滋感染者, 都必須在各式體檢 問卷 保單和就醫過程中, 更加有意識的防止自己的醫療隱私受損, 唯有更多人的醫療隱私權意識覺醒, 才可能促使目前現狀的改進 註釋註一 : 此處的易感族群是指 容易受到感染的族群, 意思是這些族群常發生的行為容易感染愛滋, 政府因而依照其 族群身份 做強制的愛滋監控, 而非以 危險行為 為標準 註二 : 此處所指的保險是醫療相關保險 除此之外, 其餘的商業保險多不會受到影響 註三 : 此為一般對法規的誤解, 後天免疫缺乏症候群防治條例第五條上述, 應於 24 小時之內向當地衛生主管機關通報, 以適當處理屍體, 但適當的處理方式被誤解為一定要 火葬 或 深埋七尺, 使家屬不解 進而發現死者感染愛滋的事 實 隱私全都露:愛滋醫療隱私37

41 隱私全都露:愛滋醫療隱私38

42 Chapter 3 政策面面觀 : 愛滋醫療政策 對已經固定拿藥 身體狀況控制良好的愛滋感染者而言, 就醫不過就是定期回診, 並未造成太大困擾 真正影響其醫療權益的, 不是血液中的愛滋病毒, 而是政府規劃的愛滋醫療相關制度 以下, 我們將就五個面向, 分別探討台灣愛滋醫療政策 的沿革與意義

43 政策面面觀:愛滋醫療政策40 [ 愛滋醫療經費給付政策的演變 ] 1990 年, 後天免疫缺乏症候群防治條例 在立法院三讀通過正式施行, 其中, 為達到 監督 與 監測 目的, 立委要求將愛滋醫療給付由國家編列預算支付, 以鼓勵民眾 主動 出來進行愛滋篩檢與看病, 這是愛滋醫療費用由國家全額負擔的緣由 雖然原本立意之一是要監控, 但也使得臺灣的愛滋感染者有免費的藥物可服用, 仍可算是國際少有的人道愛滋醫療政策 1994 年, 立法院通過 全民健康保險法 當時立委討論認為, 公務預算是用做防治之用, 愛滋醫療給付是治療經費, 應由中央健康保險局 ( 以下簡稱 健保局 ) 支付較為合理 因而朝此方向在 1997 年修訂 後天免疫缺乏症候群防治條例, 接著在 1998 年公告重大傷病範圍, 愛滋自此被列進健保的重大傷病範圍 納入健保後, 隨著感染人數越來越多, 健保局又對愛滋 另眼相看, 不時強調愛滋感染者的昂貴藥物造成健保財政危機, 即將拖垮健保營運 2005 年, 後天免疫缺乏症候群防治條例 再度修法, 將原本第 7 條第 1 項所列 ; 其費用由中央健康保險局依重大傷病給付 修改為 ; 其費用由中央衛生主管機關編列預算, 並得委任中央健康保險局給付之 在諸多健保給付的疾病中, 愛滋被移出, 改回由政府每年編列公務預算支付 愛滋的支付由健保局或是公務預算支付, 各有各的利弊, 本會 並無意指出愛滋醫療經費該如何支付較佳, 而該要質疑的是 : 全民健保是健康風險均攤的概念, 為生病的他人分攤藥錢是健

44 Chapter 3 保的意義, 健保局因為經濟算計的結果而排除愛滋, 是否有推諉應付之嫌? 以及, 在健保給付的重大傷病中, 花費比愛滋高的疾病比比皆是 ( 如洗腎即是 ), 若依精算邏輯, 何以愛滋是被排除健保給付的選項? 愛滋感染者一旦服藥之後, 若任意停藥, 恐有造成病毒抗藥性或耐藥性之虞, 使得感染者即便日後恢復服藥, 同樣的藥物失去原本應有之效力或根本無效 因此, 醫藥經費支付政策的朝令夕改, 加上不時傳出的 拖垮財政, 政府無力負擔 說法, 使得在臺灣的愛滋感染者戰戰兢兢, 害怕終有一天會面臨無藥可吃的境況, 或是需要自行負擔高額的藥物費用 [ 免費的藥, 有代價的醫療 ] 策面面觀影響愛滋醫療政策, 同時也影響每一位愛滋感染者接受醫療 政:愛滋醫療政策41 早在 1987 到 1990 年, 討論制定 後天免疫缺乏症候群防治條例 時, 儘管立委認為要給予愛滋感染者免費醫療, 衛生署防疫處卻數次強調 : 血友病或醫護人員不慎感染愛滋病者, 應給予免費治療, 但不正當的性行為或共用針頭的毒癮者, 若用全體納稅人的錢給予免費治療, 則相當不公平 然而, 事實上要區分 無辜 或 自作孽 而感染有實際操作的困難, 因此台灣目前仍對所有的愛滋感染者一視同仁的給予免費醫療, 但每隔幾年, 隨著 人數眾多 拖跨財政 的論調出現, 就會引發對 自作孽 感染愛滋的譴責 然而, 愛滋醫療費用何以特別被檢視 看成是健保負擔, 正是反映愛滋的社會汙名如何

45 政策面面觀:愛滋醫療政策42 愛滋感染者在臺灣就醫層層受阻, 與此疾病的污名息息相關 我們都知道, 疾病變得不只是肉體生病, 還承載了許多社會的倫理與價值觀, 某些病似乎比另外一些病更容易令人羞愧 或是遭來譴責 例如罹患感冒可以大方就醫, 得了性病好像就必須要遮遮掩掩 雖然愛滋和 B 型肝炎的傳染途徑一模一樣, 但 B 型肝炎由於在臺灣感染人數眾多而被視為 國病, 愛滋卻強烈的與 不正當的性 性行為 連結, 性的污名 ( 現在更加上共用針頭的犯罪烙印 ) 深深烙印在愛滋感染者身上 前衛生署長張博雅多次強調 : 得愛滋病會活得沒尊嚴, 死得很難看, 更以 魔術強森得愛滋是自己行為不檢 ( 嫖妓 ) 為由, 禁止美國職籃明星魔術強森入境宣導愛滋 事實上, 臺灣的愛滋防治政策, 一直有 無辜 與 自作孽 的分類, 並譴責 行為不檢 而感染愛滋是個人的 自作孽, 這種分類所帶來的歧視, 也造成愛滋感染者的醫療權受損 如案例三的阿賢, 正式遇到醫師認定他行為不檢 護士直言他讓政府賠錢 本會認為, 每個人都會生病, 生病的人就該被照顧, 不該因為他是因何故生病而有所差異 若要依罪責邏輯, 大多人生病都是 自作孽, 許多慢性病也是肇因於個人生活習慣不良, 在臺灣也得以享有免費醫療, 何以對愛滋另眼相看? 將疾病的醫療責任推給個人, 是模糊了政府應當照顧病人的責任

46 Chapter 年, 愛滋檢驗與治療費用回歸公務預算後, 開始有些愛滋 感染者朋友發現, 原本可以免部分負擔領取的慢性病治療藥品 ( 按 : 部分愛滋感染者除愛滋之外, 也患有其他慢性病 ), 現在變成要回歸健保部分負擔的計價方式, 看病的花費忽然負擔沈重了許多 這樣的改變, 初時引起許多愛滋感染者的反彈, 部分原因是因為 : 某些感染者患有其他慢性病, 疑是因服用抗愛滋病毒藥物所導致, 或者是因愛滋病毒破壞人體免疫功能而引起其他慢性病的染患, 例如 : 部分感染者之所以必需固定服用降血脂藥物, 即與長期服用抗愛滋病毒藥物有高度相關 衛生署在規劃公務預算給付相關辦法時, 也曾考量此類狀況, 但因人們染患某種疾病是否確實由於某個原因, 科學上不一定能夠有百分之百的因果關係呈現, 因此, 要訂出一個強制性的給付辦法並不容易 最後, 衛生署將此權利劃歸給感染科 愛滋醫師, 由醫師來下診斷, 只要醫師診斷認為感染者的醫療需求與愛滋有關, 則可申請公務預算給付, 若診斷與愛滋無關, 則回歸健保體系的個人部分負擔制 策面面觀:愛滋醫療政策43 [ 回歸公務預算對醫病關係的影響 ] 政然而, 這樣的處理方式, 還是有許多問題發生, 最普遍的是, 過往愛滋感染者因為遭拒診經驗眾多, 多對至其他科別求診心懷畏懼, 造成感染者高度依賴感染科 愛滋醫師的現象, 一般的小病小痛, 感染者多向感染科 愛滋醫師求助, 而非到一般診所或一般內科掛診 ; 公務預算給付辦法要求下, 過往這類感染科醫師的善意協助, 可能會造成醫師本身的困擾

47 政策面面觀:愛滋醫療政策44 此外, 雖則公務預算給付辦法中, 授權感染科 愛滋醫師判斷 醫療所需是否與愛滋有關, 但醫師判斷仍將受到稽查, 若稽查 結果與醫師判斷不符, 衛生署設計委由愛滋病學會審議 [ 愛滋病指定醫院的數量不足 ] 愛滋感染者同一般人一樣納稅 繳健保費, 卻只有打折扣的醫療品質 在臺灣, 政府設立了愛滋病指定醫院, 作為醫治愛滋感染者的專職醫療機構 要拿抗愛滋雞尾酒療法的藥物 或是回診檢驗身體狀況 ( 免疫功能指數與病毒負荷量 ), 就只能到指定醫院就醫 所有的愛滋指定醫院, 都是區域級以上的大醫院, 不但造成愛滋感染者就醫需要花費更多的金錢, 也顯示感染者愛滋相關的就醫點不夠普及 愛滋是需要定期回診 拿藥的疾病, 對某些居住在偏遠地區的愛滋感染者而言, 需要不時請假專程就醫, 並不方便 至目前為止 (2006 年 5 月 ), 愛滋感染者人數已經上萬, 全臺灣有一萬七千多個醫療點, 卻僅有 34 家醫院收治愛滋感染者, 甚至苗栗 嘉義等許多縣市仍未有指定醫院的設立 而部分指定醫院能看愛滋的醫師也只有一至二名, 醫療資源質量均顯不足 指定醫院原先的立意是要集中愛滋醫療資源, 以及囿於事實上願意照護愛滋感染者的醫護人員並不多, 方才設計指定醫院的醫療制度, 然時至今日, 指定醫院反而區隔了愛滋這個疾病在社會上的能見度, 使得非指定醫院更能 名正言順 的拒收愛

48 Chapter 3 滋感染者 針對此一現象, 衛生署疾病管制局在 2006 年的愛滋防治座談 會中, 有過相關決議 : 愛滋病指定醫院多以醫學中心或區域醫 _ 院為主, 為因應愛滋病已為慢性傳染病趨勢, 增進個案就醫之 _ 可近性, 將請愛滋病指定醫院研議成立社區型診所型態之可行 _ 性, 並提至愛滋病防治推動小組討論 _ 隨著社區型診所的出現, 本會期待在不危害愛滋感染者隱私權 的情況下, 感染者的就醫行為能更加方便 更加生活化 [ 指定醫院缺乏監督標準 ] 策緩採購藥品, 技術性阻擋愛滋感染者就醫 政面面觀:愛滋醫療政策45 Story.10 小吳原先至南部義大醫院就醫, 在 2006 年春節過後, 他發現往往醫師開的藥, 醫院藥庫卻推說已無庫存 在義大就醫的其他感染者也遇到類似的狀況, 只能紛紛轉往其他南部醫院就醫拿藥 目前愛滋藥物的給付是由政府每年編列預算維持, 義大醫院此舉造成了其他指定醫院的愛滋預算超額使用 小吳說 : 照這樣下去, 九月後其他醫院的藥錢也會用光, 難道我們只能北上看醫生嗎? 某位義大不願具名的醫護人員表示, 義大醫院的管理階層, 在開會時曾說過 : 義大是高級的醫院, 不該看這麼骯髒可恥的疾病 並指示暫

49 政策面面觀:愛滋醫療政策46 指定醫院除了數量不足之外, 也缺乏監督的標準與機制 以備藥不全 儀器不足 態度惡劣等方式排擠愛滋感染者就醫的指定醫院, 並非只有義大醫院一家 我們清楚看到, 指定醫院的設計已成為醫院提升評鑑結果的方便法門 - 成為愛滋指定醫院, 評鑑時點數就會增加, 但是待評鑑一旦過關, 醫院就可能毫無顧忌的變相排擠病患, 愛滋感染者應有的醫療權仍舊受損 真正願意友善願意看待愛滋感染者的指定醫院與感染科醫師, 比官方的統計數據要少得多, 愛滋感染者的選擇極其有限, 醫 病權力關係自然更加不平等

50

51 "HIV --- Not Just Treatments" Current Status on Medication for People with HIV/AIDS in Taiwan Persons with HIV/AIDS Rights Advocacy Association (PRAA) Presents 2007

52 All Our Contributors Acquisition and Development Editor: Dale Lu Editorial / Production Supervision: Gino Lin Ping Wang Edward Lee Ivory Lin Chia-Ling Wu Hansen Wu Huei- Chung Yang Janet Yeh Chung-Yeh Deng Ding-Weng Chun-Mei Tsai Ashley Wu Page Composition: Dale Lu Ivory Lin English-language Translator: Ching-Wen Wu English Comtiler: Edward Lee Cover / Interior Design: Pei-Yu Sun, Pei-tsu Sun Copyright 2007 by Persons with HIV/AIDS Rights Advocacy Association (PRAA), Taipei, Taiwan, R.O.C. Part of rights reserved. Part of the report may be reproduced, in the form or by means of CC, with written permission from the publisher in advance. Acknowledgements PRAA would like to utmost thank supports from Levi Strauss Foundation and The United Way Taiwan for making the production and distribution of this publication possible.

53 Contents Chapter 1 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS The regulations to doctor-patient relation from current laws /53 Unfair medical treatments /54 The reasons why medical personnel are unwilling to take care of patients with HIV/AIDS /75 Conclusion and Suggestion /81 Chapter 2 Exposure: Issues of Privacy Concerning AIDS-Related Medical Care HIV testing /93 Tracing of public health authorities /101 National health insurance IC card /105 Interaction with medical personnel /109 Diseases as a personal privacy /112 Chapter 3 An Overview of the Policies: Medical Policies Related AIDS The change of funding in AIDS medical policies /118 Free medicine but costly medication /120 The impact of central official budget on doctor-patient relation /123 The lack of assigned hospitals for people with HIV/AIDS /125 The lack of supervision in the assigned Hospitals /128

54 Chapter 1 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS Since 1997, the medical treatment of AIDS in Taiwan has come to the age of using Cocktail Therapy, which can suppress the number of the virus in the blood more effectively through combining several different kinds of anti-virus medicine and the immunity of people who are inflected with HIV/AIDS would recover. While AIDS becomes a chronicle disease, people with HIV/AIDS are more like people with high blood pressure or diabetes because most of the time they can live healthily in society, without any differences from other people, as long as they take their medicines regularly and check their health conditions from time to time. The fact that the morbidity and the mortality of AIDS patients have dropped acutely does not mean that clinical medication should not be the most attention-needed topic in the life of AIDS patients. In fact, just because there more and more people infected with HIV/AIDS and because they can

55 have better and better health conditions after infection, more and more problems concerning the medication provided for them are exposed. In this chapter, we want to discuss the problem that people with HIV/AIDS have been through in Taiwan. In fact, the quality of medical care of People with HIV/AIDS is a complicated issue combined with the clinical medication, the laws and policies, human rights and the stigma.

56 Chapter 1 The regulations to doctor-patient relation from current laws AIDS Prevention and Control Act (In the following context it is called the Prevention Act) is the special law in Taiwan that is designed to regulate the concerning rights and obligations of people with HIV/AIDS. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 53 The medical rights of people with HIV/AIDS are declared by the article 6-1 in the Prevention Act, The personality and legal rights of persons infected by HIV shall be respected and protected; there shall be no discrimination, no refusal of their schooling, medical care, employment, or any other unfair treatment In the same act, the article 9 then defines that people with HIV/ AIDS must inform the medical personnel the fact of infection, Individuals infected with HIV have the obligation to provide information on sources of infection or their contacts. When under medical care, they shall inform medical personnel that they have been infected with HIV The Prevention Act has stated how people with HIV/AIDS and medical personnel should treat each other: the infected people must inform the medical personnel the fact of infection of HIV/ AIDS while the medical personnel shall not refuse to provide medical assistance for AIDS patients or treat them unfairly out of discrimination.

57 Unfair medical treatments To people with HIV/AIDS, although there are laws prohibiting the discriminations and the refusal to provide medical treatments, it is still very difficult for them to acquire fair medical treatments. While informing is the obligation of people with HIV/AIDS, their rights of proper medical treatments are unobtainable as we notice. Many medical personnel either refuse the contact with people with HIV/AIDS or put off their treatment by using another way to treat them as soon as they know the status of infection of their patients, which leads to the secondary quality of medical care that people with HIV/AIDS receive. Even during the treatment of Infectious Diseases Departments, where people with HIV/AIDS don t have the problem of informing and are less likely to be rejected to be treated, it is still possible for them to experience the different, discriminating attitude of the medical personnel. In the following context, we are going to discuss how the rights of people with HIV/AIDS could be invaded in a more delicate way by demonstrating the real stories in daily life of the infected people. In order to protect the clients, all the stories are adapted from the experiences of many people rather than a single case; also, besides the information that has been reported by the media, all the personal information that is recognizable is modified. 54 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

58 Chapter 1 Being rejected by medical institutions In the early morning on the January 10th, 2005, the case of Qiu, a young girl who was severely damaged on the brain and was in a coma, surprised Taiwan society. She was first sent to the emergency room in one hospital in Taipei but later was transferred out because of the lack of beds. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 55 While finding no beds in the resourceful Taipei, she then was sent to Taichung to have her surgery after more than five hours. At last, Qiu had received treatments for 10 more days before she was announced as brain death. This kind of story about patients being kicked between hospitals is never new to people with HIV/AIDS. We think people with HIV/AIDS in Taiwan often experience being kicked from one hospital to another; the difficulties they face include the lack of beds, the refusal of the doctors, or the lack of medicines. They always have to travel from the north to the south to search for medical resources. Case 1 A female homophile Yui was infected with HIV unwittingly due to a regular blood transfusion. Not until the antenatal examination in 2004, had she been informed by the hospital the fact of her infection; in the mean time, a well-known hospital in North Taiwan forced Yui,

59 who was about to give birth to a baby, to leave the hospital with the reason of lack of equipments. Yui could not find any obstetrics and gynecology departments that agree to offer the medication until Changhua Christian Hospital was willing to help, which assisted her to give birth to a healthy baby through cesarean section. Yui said angrily: The purpose of antenatal examinations is not to protect the mothers, but to expel the motherto-be from the hospitals. Case 2 Mei had a car accident in 2002, and the ambulance immediately sent her to one well-known hospital in Taipei. The doctor said that Mei needed an operation because her fracture was very serious; however, after Mei told the doctor her status of HIV infection, the doctor said to her: You don t need a operation; you just need to rest at home. Also, the hospital set up a warning area around Mei s bed, telling every personnel in the emergency room not to get close to the area because it s dangerous. After two weeks in the emergency room without any constructive therapies, finally she decided to leave the hospital and go home. After searching for three months, there were still no doctors willing to do the operation for Mei even with the assistance of a social worker in a non-profit organization working with AIDS. 56 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

60 Chapter 1 The only doctor that was willing to help was in south Taiwan while the health condition of Mei could not support her to travel that long. Mei was wondering: Why is it so difficult for me to find a doctor to do an operation for me? In contemporary society, the medical resources are highly centralized; thus, people have no other options but to go to the hospital and depend on the diagnosis and treatments by medical personnel. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 57 If the doctors refuse to provide treatments, patients would have to give up, especially for patients like Yui, who is parturient, or like Mei, who needs immediate medical assistance after a car accident. Their first priority is definitely looking for possible medical resources rather than reacting to the doctors who refused them. Delay of treatment Even if people with HIV/AIDS are not rejected directly by medical personnel, they often have the experiences that the doctors treat them in a passive way and delay the timing for treatment. Case 3 Huang took a trip with friends to the south Taiwan and had a fever because of tiredness from the trip. His friend then took him to the

61 emergency room. As soon as Huang told the doctor that he was infected with HIV, the doctor asked him to wait. As time went by, no one dared to come close to Huang and offer any treatment. His friend was very angry and decided to take Huang to another hospital. When they arrived another hospital, Huang decided not to reveal the fact of infection because of the previous experience. This time, he was offered all the treatments and medicines he needed. Huang said: I can t believe that the result of being honest is being ignored by the hospital; if that s the case, who dares to tell the truth? Case 4 Si had been receiving treatments for tuberculosis in one hospital in central Taiwan originally and was transferred to another big-scale hospital in the north later on, in order to get better medication and to be evaluated if he needs an operation. However, Doctor A, who was in charge of Si s case, no longer offered any positive medication after finding out the result of the HIV test of Si as positive. He even said to Si s family: No medication can help him; you had better start preparing for the funeral and you should do the cremation as soon as possible because of his disease. At the same time, the doctor also warn the partner of Si that there s a very high possibility for him to be infected too, which made the family of Si very worried. Si s family decided to transfer him to another hospital after his staying 58 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

62 Chapter 1 for a dozen of days; however, the plan was delayed by Doctor A with the reason that he needed to do some research about the case history. Because of the delay of transferring, the course of Si s disease had come to the end. Although his new doctor was willing to keep trying to provide treatments, Si still passed away after being treated for almost two months. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 59 Based on the request from the family of Si, PRAA tried to express our dissatisfaction with Doctor A by sending an to the head of the hospital; however, the response we got from the hospital was: The hospital had done our best to provide assistance in the process of treatments and communication. PRAA evaluated that even if we got the case history of Si, the file could be falsified by the hospital; thus, PRAA finally set the matter by leaving it unsettled as the family of Si wanted. It is not difficult to find out from Case 3 and Case 4 that, it is actually another form of refusal when the medical institutions make people with HIV/AIDS leave the hospitals by creating a difficult situation such as delaying the treatments. Eventually, people with HIV/AIDS are forced to keep waiting or searching for friendly medical resources. Second-rate treatments

63 When people with HIV/AIDS seek for medical assistance, sometimes doctors may change the content of the treatments because of the fact of infection, and in which case, people with HIV/AIDS will not be able to get the most ideal medical care. In Case 2, the cancellation of the operation, and the moving out of the hospital that Mei had experienced are the examples. This change of medical treatment is obviously due to the understanding of the fact about Mei s infection, but Mei can not controvert the profession of the doctor; she can only accept the decision of the doctor. Another kind of second-rate treatment happens when doctors have consultations with other disciplines; the patients often experience being rejected or receiving less qualified medical care. Case 5 Hui was an AIDS patient who went to the doctor regularly. In 2005, when she was certain about being pregnant and decided to give birth to a baby, her doctor started helping her to find a doctor in the obstetrics and gynecology department to deliver the child for Hui. Finally, one of the doctors agreed to help, but Hui was sent to the ward of infectious diseases without the medical care from the maternity during her postpartum rest. 60 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

64 Chapter 1 Case 6 Jay was an experienced volunteer working with people with HIV/ AIDS in a well-known hospital. He had been doing the service in the hospital for several years, providing many newly infected people with emotional support and helping them with mental and physical adjustments. In 2004, Jay found that he was getting weaker and weaker, and was announced by the doctor as in the last phase of liver cancer, when medication didn t help a lot. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 61 The social worker in the hospital had known Jay for many years and was planning to put Jay into the hospice so that he could spend the rest of his life there peacefully and with dignity while being provided with some humanistic care. However, the hospice rejected Jay to move in because he was an AIDS patient. To Jay, who had contributed a lot to the hospital, the refusal from the hospice was a real shock. Eventually, Jay didn t get any medical resources from the hospice and passed away in the ward of infectious diseases. In the medical system in Taiwan, Infectious Diseases has always been a weaker discipline. When a doctor of an Infectious Diseases Department thinks it is necessary for people with HIV/AIDS to receive the intervention of other disciplines, the proposal during the consultations are often denied by other doctors who think the intervention is not necessary.

65 Even if there are doctors willing to assist, other medical personnel in the medical team may oppose to the decision as well. It turns out that AIDS patients tend to consult with their doctors in Infectious Diseases Departments about all problems they have such as having a cold, due to these negative experiences. Doctors of Infectious Diseases Departments become a safer alternative that AIDS patients can choose in the generally unfriendly environment now, even though they may not be so precise or professional compared to the doctors in other disciplines when providing treatments for a common cold and other diseases. Moreover, while some friendly doctors of Infectious Diseases Departments are willing to provide treatment for some AIDS-unrelated diseases, they can not do anything when facing some heavy diseases that require cooperation of different disciplines. Discriminating attitude Sometimes, people with HIV/AIDS are not refused by the doctors, and their treatments are not delayed or impaired either; however, even without these obvious invasions of rights, what people with HIV/AIDS often experience is the 62 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

66 Chapter 1 subtle discriminating attitude of medical personnel. In PRAA s opinion, to people with HIV/AIDS, the socalled Fair Medical Treatments do not only refer to being able to receive treatments and medicines, but also require a respectful, responsible and consistent attitude of medical personnel toward them by showing the medical ethnics to improve a better doctor-patient relation. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 63 Unfortunately, from the behavior of the doctor in Case 4, we can see that sometimes some medical personnel not only lack empathy, but are rude and discriminating. Case 7 In 2000, when sent to the emergency room, Hsien was found to be infected with HIV and was transferred to a doctor of Infectious Diseases Department. However, during the interrogation enquiry, he was treated very roughly. The doctor asked: Are you a homosexual? Hsien: No! The doctor then asked: Are you a heterosexual and did you have sex with a prostitute? Hsien: No! Later, the doctor said: That s impossible! I won t give you medicines unless you admit you belong to one of the situations above. At the same time, the nurse next to them also said: Do you know that the longer people like you live, the more our government has to pay?

67 Then Hsien left angrily without getting any medicines. Afterwards, PRAA helped transfer Hsien to another hospital with a friendly doctor, where he finally got the medicines he needed. But Hsien needed to travel to northern Taiwan to get his medicines from time to time. PRAA thinks that sick people should be taken care of no matter if they are homosexual, heterosexual or drug users, and no matter if they are infected because of blood transfusions, mother-child transmissions or transmissions from partners. People should not be treated differently based on the reasons why they are infected. Invasive treatments with a high rejection rate According to Centers for Disease Control and Prevention in the States, the definition of invasive treatments is: Any treatments in surgery that invade into tissues, the body cavities, organs, or the recoveries of serious surgical traumas are all called invasive treatments. From the cases above we can see that because it is very possible for doctors to have contact with the blood of people with HIV/AIDS when providing invasive treatments, these doctors of the related disciplines are not willing to accept AIDS patients. In the following context, we are 64 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

68 Chapter 1 going to discuss more about the medical treatments that are related to invasive treatments: surgical operations, confinements, and the dentistry. A. Operations and confinements Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 65 Case 8 Mao had been infected with HIV and received related treatments in a hospital for four years. In 2005, he was found to have a tumor in his body. Mao s doctor in the Infectious Diseases Department knew that he would not be able to persuade a surgeon to do the operation for Mao, so he asked Mao to find a doctor by himself. However, none of the doctors that Mao visited agreed to do the operation. Afterwards, Mao changed to another hospital and the date of his operation was set up under the circumstance that he didn t tell the doctor about his identity as an infected HIV patient. Nevertheless, Mao had been struggling all the time whether to tell the doctor the fact of his infection. On the day before the operation, he requested to speak to the doctor alone and told him: I need to tell you one thing. I am infected with HIV, so I hope you can be more careful about this when you do the operation for me. After hearing this, the doctor then replied: I really appreciate your honesty, and I will still do the operation for you. The operation was very successful and Mao recovered very quickly.

69 It is very common that the requests of operations of people with HIV/AIDS will be rejected. The important position of Surgical Departments in Taiwan gives the doctors the power to decide whether the patients need operations or not during the consultations between Surgical Departments and Internal Medicine Departments. In this case, Mao would not have been able to find any resources to help him in the hospital, if the Surgical Department had said no. Although Mao luckily had his operation done finally in the second hospital after telling the doctor his status of infection, it had been unknown whether he could find a doctor doing the operation for him if he had confessed his status of HIV before the date of the operation was set, like what Mei did in our case 2. Now in Taiwan, many medical institutions have the regulations saying that they would draw the blood from all the inpatients and patients who need operations, no matter if the patients agree or not, to see if the patients are infected with HIV. Usually as long as the patients are found to be infected, many doctors will change their original diagnosis and cancel the operations. More and more hospitals and disciplines try to sift out the HIV-infected patients in all kinds of methods, and this puts people with HIV/AIDS in a more difficult position. From 66 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

70 Chapter 1 cases 1 and 5, we can see that the medical personnel in Obstetrics and Gynecology Departments are not ready yet to face expectant mothers with HIV/AIDS; they even forced these expectant mothers to leave the hospitals. Where could these expectant mothers go if no hospital was willing to provide medical treatments for them? Therefore, many of them could only hide the fact of being infected because of the fear of being rejected by hospitals. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 67 Case 9 In 2000, Yue s husband was found to be infected with HIV, and when Yue was followed by the epidemic prevention personnel, she was already pregnant, having her antenatal examinations in a hospital. When Yue was about to give birth to the baby in the middle of the year, her doctor referred her to National Taiwan University Hospital. However, neither Yue nor her doctor told NTUH the fact that Yue was infected with HIV even though they were both aware of that. The medical personnel had no idea about her being infected until Yue was having her routine examinations after giving birth. This caused the strong resentment and panic of the medical personnel who were responsible for the delivery of the child in NTUH. Although Yue might not have been rejected if she had informed the hospital before, how could Yue dare to take the risk of being rejected

71 right before her giving birth to the child? Right now there are more and more females infected with HIV/AIDS. After 2005, the test of HIV was added into the routine examinations for expectant mothers because of the enforcement of the Free Test of HIV Program for Expectant Mothers, and therefore many expectant mothers are tested for their status of HIV without knowing it. The personnel in Obstetrics and Gynecology Departments will have to face more and more expectant mothers with HIV/AIDS, and if our medical environment is still so unfriendly to people with HIV/AIDS, the story like Yue s will be seen over and over again. B. Dental treatments We can not skip dentistry when it comes to the medical rights of people with HIV/AIDS, because there are few people who don t need dentists while not everyone needs operations or to give birth to a baby. Thus, to people with HIV/AIDS, the biggest nightmare is that no dentist is going to provide treatments when they are suffering from their toothache. PRAA has always had contact with many infected friends 68 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

72 Chapter 1 who have this problem; therefore, we once asked the Dental Association to provide a list of dentists who are friendly to people with HIV/AIDS in 1998, but we didn t receive any response. Not until 2001 when Taipei City Sexual Disease Prevention Center (Now as Taipei City Hospital Branch for Disease Control and Prevention) started a special dental outpatient service, did people with HIV/AIDS in Taipei finally had a hospital which provided dental treatments. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 69 We think the special outpatient service is indeed a piece of great news for people with HIV/AIDS; however, patients who don t live in northern Taiwan still have nowhere to go unless they travel to Taipei. According to the result of the questionnaire to all practical doctors and dentists by Chih-Yin Lew-Ting and Hsing- Zhe Tu in 1995 and 1996, which include 1482 copies of effective answered questionnaire from the doctors and the other 1685 from the dentists without including those who had experiences providing medical care to people with HIV/AIDS, there s a huge difference between the two groups on the attitude toward people with HIV/AIDS. There re about 10% (143 people) of doctors who says that they don t want to provide medical care for people

73 with AIDS while there s more than 50% (893 people) of dentists saying so. When they are asked about if they think they have rights to reject people with HIV/AIDS, there s 40% (590 pl.) of doctors and more than 60% of dentists agreeing. Thus, we can see that the dentist community does tend to exclude people with HIV/AIDS more often than other doctors. The interesting part is, in all the answered questionnaires, there are about 220 doctors who had experiences taking care of people with HIV/AIDS (about 12.9%) while only 94 dentists (about 5.3%) who had the same experience, which is less than the half percentages of the doctors. Taiwan Root Medical Peace Corps had got the similar results from the questionnaire they did to all medical personnel in Taiwan in Averagely, 39.8% medical personnel expressed that they had experiences providing medical assistance for people with HIV/AIDS, but only 18.4% of dentists had the experience of taking care of people with HIV/AIDS. It is not because that people with HIV/AIDS don t need to go to dentists, but because dentists can not find out who is infected through the blood tests done by the doctors in 70 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

74 Chapter 1 Surgical or Obstetrics and Gynecology Departments. Also, the people with HIV/AIDS also expect the unfriendliness and fear from the dentists, so that they usually choose to hide the fact of being infected in order to get the dental treatments. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 71 Based on the investigation by Taipei City Hospital Branch for Disease Control and Prevention during their special dental outpatient services, 90% of the patients with HIV/ AIDS had received treatments in private clinics before with 84% of them not telling their dentists their status of infection. Apparently, there s a vicious circle in the relationship of people with HIV/AIDS and the dentist community. Doctor Chuan-Tang Li who works for the special dental outpatient services said: Taipei is a big city, but people with HIV/AIDS can t even find a place to treat their dental diseases contentedly. Rather than hidinge information from each other, we should put our effort on protective equipments and provide dental treatments for people with HIV/AIDS. A relationship with better protective measures, more respect, and more trust, will be a doctor-patient relationship that PRAA loves to see.

75 Conclusion: No guaranteed justice for medical rights of people with HIV/AIDS yet A. It is common that medical rights of people with HIV/ AIDS are invaded. PRAA believes that the nine cases above are not special cases. In the research we did in 1999 with other four non-profit organizations 1 of The Quality of Medical Treatments for People with HIV/AIDS, it showed that more than 75% of people (106 people) among 138 questionnaires had never informed doctors of their status of infection before receiving treatments, mainly because they are afraid that the information may go public or they will be rejected by the doctors. This kind of fear does not come from nowhere because almost 25% (6 people) of interviewees among the 32 people who had informed their doctors of the fact of their infection had been rejected by the doctors right away; about 10% (3 people) then stated that although the doctors were willing to provide treatments, they did experience a careless attitude or delay of treatments. Another example is the result of the telephone counseling that PRAA provided during There were 145 of telephone calls about medical care related problems, 72 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

76 Chapter 1 which counted for 10% of the total number of phone calls. The result reflects the fact that medical care has always been a main concern and need for people with HIV/AIDS. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 73 PRAA believes that there are definitely more cases about the invasion of medical rights. On the one hand, many private organizations have always tried to help look for medical resources for people with HIV/AIDS as well as helped them communicate or negotiate with doctors; one the other hand, because of the inequality between the social statuses of doctors and patients, the patients whose rights have been invaded usually choose to conceal their experiences. Compared with others, people with HIV/AIDS, who belong to a weaker community, certainly have less power to fight against the invasion, and thus the number of the cases has always been underestimated. B. The invasion of medical rights of people with HIV/AIDS is a phenomenon that covers different disciplines. The chief epidemic prevention doctor Chin-Hui Yang in Centers for Disease Control, Department of Health in Taiwan carried out a questionnaire investigation from January to March in 2006, inquiring into the quality of medical care that people with HIV/AIDS had received.

77 Among 611 copies of effective samples it included 25 people in Dental Departments, 27 people in Internal Medicine Departments, 15 people in Surgical Departments and 6 people in emergency rooms who have been rejected by doctors. Maybe because people with HIV/AIDS who go to doctor regularly and were willing to answer the questionnaires belong to the population who trusts doctors more and has less experiences of being rejected, they are quite different from the group that PRAA has had contact with. Therefore, the result of this official investigation shows a low percentage of being rejected of people with HIV/AIDS. Regardless of the figures and the differences of all the samples, this important report is the first one which gathered statistics about the disciplines in which people with HIV/AIDS had been rejected. It is worth noting that, besides the high percentage of rejection in Dental Departments, we can see that it is a phenomenon over different disciplines where people with HIV/AIDS are rejected by doctors. Not only in Surgical Departments, Obstetrics and Gynecology Departments or Dental Departments but also in Family Medicine Departments, Urological Departments, 74 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

78 Chapter 1 Orthopedic Department and even Infectious Diseases Departments, there all were patients with HIV/AIDS being rejected. This cross-disciplines phenomenon partly reflects that the reasons why medical personnel to reject patients with HIV/AIDS are just not related to the risk of being infected during treatments. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 75 The reasons why medical personnel are unwilling to take care of patients with HIV/AIDS In this part, we are going to discuss the reasons why medical personnel are not willing to provide medical assistance for people with HIV/AIDS, in order to understand why it has become a common and cross-disciplines phenomenon that the medical right of people with HIV/AIDS are invaded. From June to September in 2002, Taiwan Root Medical Peace Corps sent out 1600 copies of questionnaire to the medical personnel in 42 hospitals all over Taiwan and received 1292 copies of effective ones, inquiring into their degree of acceptance of people with HIV/AIDS. Following is the analysis of the phenomenon based on the results of the investigation report.

79 In the report, 42.9% of medical personnel state that they are not willing to provide medical care for people with HIV/AIDS. When they are asked about the reasons, a high percentage of 80.2 says it s because of the fear of being infected, and 27.1% of people are worried that their family members may not accept them or their friends will keep them from a distance if they have contact with people with HIV/AIDS. Also, another 21.1% of people say they don t like people with HIV/AIDS. In the following context, we will use these three reasons as our basic structure to discuss and analyze the origins of these three different pressures of worries about being infected, social pressure, and values and preferences. Fear of being infected All the related researches show that the main reason why medical personnel don t want to provide medical assistance for patients with HIV/AIDS is because they are afraid of being infected. Maybe you would be interested in what kind of high standard protective measures a medical personnel would need. Early in 1990, Professor Zhe-Yan Chuang, the so-called Taiwan Father of AIDS, already mentioned in the book published by CDC A Full View of AIDS that, All the 76 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

80 Chapter 1 protective that can prevent Hepatitis B from transmission can stop all the possibilities for AIDS to transmit. In fact, the routes of infections of HIV and Hepatitis B are exactly the same; Hepatitis B is even much more contagious than HIV. Taiwan has always had a high prevalence of Hepatitis B and the medical field has been quite familiar with Hepatitis B, so the protective measures of Hepatitis B can be applied for preventing HIV. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 77 Accordingly, to prevent the inner-hospital infection of HIV, we actually don t need to set other special procedures and measures; as long as we follow the current basic measures we already have in Taiwan, we can prevent the infection of HIV virus even during highly invasive operations which have the highest risk of infection. Therefore, there are no special reasons for other medical disciplines to be afraid of being infected and then reject the patients. As a matter of fact, there is no medical personnel in Taiwan who has been proved to be infected because of medical behaviors. We should build our worries about the contagion of HIV virus upon the specific scientific base, so that we can evaluate the risk of all medical behaviors properly and

81 correctly. Social pressure PRAA once considered sending testimonials to those doctors who were willing to do operations for people with HIV/AIDS, in order to express our gratitude; however, many doctors didn t want to be commended in public. Their reasons are probably not only because it is unnecessary to publicize their good deeds, but also because they are worried about the coming social pressure once the news goes public. Worrying that their family members may not accept them or their friends might keep them from a distance is one source of the pressure. Moreover, those doctors who run their own clinic usually worry that it will make other patients panic once the news goes public, which may lead to the result that no one dares to go to their clinics. From these worries and pressures, again we can see how strong the stigma Taiwanese people have associated with AIDS is: when a doctor follows his professional ethic and provides medical treatments for people with HIV/AIDS based on a humanistic attitude, his private life and income can be affected greatly. 78 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

82 Chapter 1 Also, the hierarchical culture in medical profession causes the pressure. Many young doctors have higher acceptance of issues related to HIV/AIDS, and have more correct knowledge, but they still don t dare to accept the patients due to the objection from other senior doctors. We can take doctor B in Case 8 as an example. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 79 Other doctors who refused to do the operation for Mao were either his predecessors in the field or his seniors in school, and therefore doctor B were afraid that the fact he did the operation for Mao would be known by others and would make other doctors raise their eyebrows. Just like people with HIV/AIDS, these friendly doctors are also scared by going into public because of all kinds of social pressures; those who are willing to provide treatments for people with HIV/AIDS openly cannot avoid being put on the position that is connected with the stigma of AIDS. They will have to face the fear, astonishment and exclusion from both their public and private fields. Values and preferences In the above-mentioned research by Chih-Yin Lew-Ting and Hsing-Zhe Tu, they pointed out that the uncomfortable reactions of the medical personnel who don t like people with HIV/AIDS are actually an optional discrimination to

83 people with HIV/AIDS. According to the result of the investigation, 57.8 % of doctors and 35.1 % of dentists think that medical personnel have no rights to refuse people with HIV/AIDS; however, there are actually 27.7% of doctors and 14.5% of dentists stating that they are only willing to take care of those unwittingly infected people, such as the innocent people who are infected through mother-child transmissions or blood transfusions. Only 25.2% of doctors and 18.1% of dentists are willing to provide medical care for all of the people with HIV/ AIDS. To further analyze these doctors and dentists who state they are willing to provide medical care for some kinds of people with HIV/AIDS, the research points out that 70.1% of them can not accept people who inject drugs, and 49.1% of them can t accept people who have sex with prostitutes. Finally, 32.3% of them reject male homosexuality. We can find out that the different social identities of people with HIV/AIDS will bring them different treatments though they are all infected with the same disease. Different patients with HIV/AIDS with different identities actually don t make a huge difference on the risk for medical 80 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

84 Chapter 1 personnel to be infected when they provide medical care. Therefore, the different attitudes toward different groups of people with HIV/AIDS just reveal that the values and preferences of the medical personnel do contribute to the invasion of medical rights of the AIDS community. Conclusion and Suggestion Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 81 Concerning about the present situation of the increasing number of people infected with HIV, no medical personnel should neglect this issue anymore. PRAA suggests: Discussion and regulation inside the academies of different medical disciplines Since it is a cross-discipline phenomenon for people with HIV/AIDS to receive unfair treatments, all the academies of different disciplines especially those related to invasive treatments-- should have discussions, evaluating respectively the proper medical treatments, and then set up a detailed procedures and measures addressing the infected patients of HIV, Hepatitis B, and other similar diseases. Moreover, they should refer to the regulations of other

85 countries and be sure to use the results of scientific researches as the base for establishing the rules. Professional knowledge and medical care training about AIDS should be added into the medical education and the on-the-job training in hospital. All medical personnel should understand that HIV virus has certain and limited routes of transmission so that they can avoid overreacting fear and panic. In the research of Taiwan Root Medical Peace Corps, 73% of medical personnel acknowledge that they don t have enough professional knowledge and related training when it comes to providing medical care for people with HIV/AIDS. On the other hand, among the 23.7% of those who have received such training, about 80% of them think the training helps them decrease the stress as facing people with HIV/AIDS. In addition, the medical personnel who have actually had contact with people with HIV/AIDS are more willing to provide medical assistance for them than those personnel who don t have the same experiences. This may be resulted from the collapse of stigma of AIDS and the reconsideration about the possibility of infection 82 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

86 Chapter 1 during their actual interaction with people with HIV/AIDS. Consequently, adding the trainings about AIDS-related medical care in medical education and on-the-job training in hospitals as well as designing a practicum class which provides medical personnel opportunities to have contact with people with HIV/AIDS can improve the attitudes of medical personnel have toward people with HIV/AIDS, and avoid the damages to the rights of people with HIV/AIDS. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 83 A standard protective measure should be carried out in hospitals Although medical personnel can prevent themselves from the infection of HIV by following the general protective measures, many of them don t put the measures into effect. The reasons include that they think it s too troublesome during practical work, and that some hospitals control or even decrease the quantities of the protective appliances due to the consideration of cost; these reasons result in the difficulties to carry out the standard protective measures. Many hospitals are not willing to implement the protective measures but put HIV test into the routine examinations; obviously sifting out the people with HIV/AIDS is not for providing treatments more cautiously but for excluding

87 them from the hospitals. Under the circumstance of unequal relationship between doctors and patients, as long as hospitals start sifting, people with HIV/AIDS always have nowhere to hide, and they can only hope they will find some doctors who are willing to provide treatments. In fact, the idea that the hospital is safe once we pick out the patients with HIV/ AIDS turns out to cause serious inner-hospital infections because medical personnel neglect the necessary measures. Managers of hospitals should abandon the idea of lowering cost as much as possible and of depending on the piece of luck while they approve the effect of protective measures as well as acting out these measures, in order to build a safe space for medical treatments without any infections. It is necessary for medical personnel to ponder the unequal relationship between doctors and patients The unequal relationship makes it difficult for people with HIV/AIDS to complain or make protest when they experience unfair treatments. As PRAA works with people with HIV/AIDS to fight for their medical rights, it is not easy to find out the friendly doctors at the first place. 84 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

88 Chapter 1 It is more difficult to complain through an official document or even through a lawsuit when an obvious invasion of medical rights takes places. So far, there are not any people with HIV/AIDS who have appealed to judicature for their medical rights. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 85 Because of the uneven information of medical histories between hospitals and patients, we can not be sure that the medical histories we apply for have not been modified; even if the histories are correct, it is hard for PRAA and our clients to point out that the medical personnel have rejected to provide assistances because of the uneven knowledge about medical profession. Since patients are not medical professionals, when it comes to the change of treatments or the denials from other disciplines, it is hard for the patients to judge if these decisions are simply the considerations based on medical professions or they are usually despiteful second-rate treatments. The acquisition and judgment of the proofs all take place inside the medical system, which strengthens the present structure in which medical professionals are players and referees at the same time. In addition to more reflection inside medical profession

89 about medical ethic, medical personnel should be more aware of the inequality between them and patients so that they will regulate themselves and avoid bringing their own moral judgments into their work as providing medical care for people with HIV/AIDS. Hospitals should build a win-win relation between doctors and patients From the research of Taiwan Root Medical Peace Corps we find that medical personnel generally think people with HIV/AIDS should tell doctors their status of infection. Among 1292 medical personnel, 97.6% think the law should regulate the obligation of people with HIV/AIDS to inform doctors of their special medical histories, mainly for protecting the safety of medical personnel (97.0%) and for providing proper treatments (85.3%). However, from the cases in this chapter we can see that the so called proper medical treatments are actually unfair treatments to people with HIV/AIDS. Theoretically, as long as medical personnel follow the standard protective measures, they won t be infected with HIV virus; therefore, people with HIV/AIDS seem to have no obligation to inform doctors the fact of infection to protect the safety of the doctors. 86 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

90 Chapter 1 However, people with HIV/AIDS actually are willing to tell their doctors their medical histories, and by doing this they can provide the medical personnel more information about their body conditions, and help the doctors avoid the treatments that may conflict with AIDS- related treatments during operations and deciding medication. Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS 87 Unfortunately, from the previous experiences of being rejected, people with HIV/AIDS learn their lessons, and realize that they can only acquire medical resources when they hide their status of infection from medical personnel. When people with HIV/AIDS decide to hide, the possible consequences for them will be juridical responsibilities of concealing the facts, and the medical treatments that may do harm to their bodies. PRAA considers a win-win relation between doctors and people with HIV/AIDS should be like this: people with HIV/AIDS can tell their doctors the fact of infection without concerns, and the medical personnel will be able to provide high quality medical treatments without worries and suspicions. The bottom line is, only when more and more doctors are willing to provide treatments for people with HIV/AIDS actively, we can break the vicious circle we are having right now and build an AIDS-friendly medical environment.

91 Note 1 Four non-profit organizations are Lourdes House, Story Will Be Given to China, Hope, and Love Hope. 88 Difficulties in Pursuing Medical Assistance: An Overview of Medical Care for People with HIV/AIDS

92 Chapter 2 Exposure: Issues of Privacy Concerning AIDS-Related Medical Care Early in 1987 when Prevention Act was being d i s c u s s e d a b o u t i t s f o r m u l a t i o n, m o s t legislators only focused on the prevention and following up of the disease rather than the protections for the rights of people with HIV/ AIDS in terms of education and employment. The only right that was declared in the act was privacy. The 6th article in Prevention Act regulates that the privacy of people with HIV/AIDS should be protected during receiving medical treatments, Competent health authorities at various levels, medical care institutions, medical personnel, and persons in possession of the names of individuals infected with HIV and relevant information on medical records through their business, shall not reveal such information without reasons However, after twenty years of enforcement, privacy is still the right that people with HIV/ AIDS care most and also the right that needs to be mostly protected. As a matter of fact, when

93 the personal information of people with HIV/AIDS is exposed, usually their other rights will be affected harmed as well. Furthermore, they will have to suffer from the discrimination from families, friends and colleagues, which leads to the result of unemployment, rejections from schools and the necessity of moving. Accordingly, in Taiwan, where AIDS is still highly stigmatized, it is the most important task to prevent privacy from being damaged if we want to protect the rights of people with HIV/AIDS. People with HIV/AIDS (as a subject different from others without) is actually constructed by medical knowledge base, so it is a common experience for them to learn about the logic that medical system deal with the label of AIDS during all the phases: recognition and labeling( HIV test), controlling(tracing and marking), and obtaining of medical resources. They also learn about how the front-line medical

94 Chapter 2 Exposure: Issues of Privacy Concerning AIDS-Related Medical Care personnel in health authorities at various levels treat them or those who are suspected as infected. It is the close relation between people with HIV/AIDS and the medical system that makes the protection of privacy during medical treatments the foundation stone of human rights of people with HIV/AIDS. In this chapter, the medical privacy of people with HIV/AIDS we will go through does not only cover the privacy concerning receiving treatments. From our experiences in PRAA, as we receive telephone calls of complaints and when we work with people with HIV/AIDS to fight for their rights, we think when it comes to the damage of medical rights of people with HIV/AIDS, it includes four main issues: HIV testing, tracing of public health authorities, marking on National Health Insurance IC Card, and the interaction with medical personnel. We are going to argue separately that AIDS (a

95 physical disease) as a personal privacy doesn t acquire the necessary emphasis and protection in above-mentioned four AIDS-related medical behaviors and public health policies.

96 Chapter 2 HIV testing Case 1 In 2004, Wayne had no idea that he had been infected with HIV while donating his blood, and he left the phone number of his office as his contact number. Two weeks later, a staff from the Department of Health called his company and revealed Wayne s status of infection to his manager. Wayne was forced to stop working for a while after a talk the next day. Although the Department of Health later called the manager again to explain that it was not easy for HIV virus to transmit, they still couldn t change the fact that Wayne had already been forced to quit his job. Exposure: Issues of Privacy Concerning AIDS-Related Medical Care 93 The latency period of HIV virus varies in different people, so it is impossible to distinguish people who are infected by their appearances. The only way to decide whether someone is infected through a medical test. Many people are like Yuan, being tested without being informed, and then their status of infection is revealed to others improperly, which leads to the damage to their other rights. Testing as a medical technique that helps individuals understand their health condition now carries the risk of violation of privacy. Right now based on our public health policies, there are active monitoring and passive monitoring when it comes to HIV testing.

97 Active monitoring The 8th article in Prevention Act provides a source for compulsive testing, Competent health authorities at various levels shall notify the following individuals to appear within deadline at the designated medical care institutions for relevant testing of HIV at no cost. Individuals not accepting testing within deadline shall be forced to do so: a.) Individuals being reported, detected infection, or suspected of infection of HIV; b.) Individuals living together or having sexual contact with HIV patients; c.) Other individuals deemed necessary for testing by the central competent health authority During past twenty years, the groups that require a HIV test have been increased by years, and the range has been broadened as well. Till now, the groups that have been put into the active monitoring lists include: a.) Prostitutes and people who have sex with prostitutes; b.) People who inject, take in or sell drugs; c. ) People who are kept in a rectification authority; d.) People who have sexual diseases; e.) Foreign laborers; f.) Males who are serving military obligations; g. ) New coming soldiers; h. ) People who donate their blood; i) Expectant mothers; j. ) Other 94 Exposure: Issues of Privacy Concerning AIDS-Related Medical Care

98 Chapter 2 high risk groups. According to contemporary policies, males who are serving their military obligations are required to have HIV tests before their service, during their service, and before they leave the armies. People who stay in rectification authorities have a test every year besides the test they have before moving into the authorities. Foreign laborers need to present their result of HIV testing in their home countries when they enter our country, and they are asked to be brought to the assigned hospitals by their employers to receive another test in three days after arriving. In addition, they have to have a test respectively in the 6th, 18th and 30th month during their stay in Taiwan. Exposure: Issues of Privacy Concerning AIDS-Related Medical Care 95 On the contrary, white collar class or foreign tourists don t have to go through these. Males during military service, inmates, and foreign laborers are forced to receive HIV tests more than once, and they can not refuse under the system. Although the HIV test for expectant mothers is not mandatory now (2006), some hospitals adopt the method of optional out, which means as long as the pregnant females don t actively state No HIV tests for their

99 antenatal examinations, a HIV test will be added into the items of examinations automatically by hospitals. As a result, many expectant mothers receive HIV tests without knowing it because they have no idea about the items included in the examinations. In addition, because of the increasing attention to the issue of mother-child transmissions, CDC is considering HIV tests as a mandatory item in antenatal examinations. It is tentatively worth arguing if prostitutes, people who are addicted to drugs and people who have sexual diseases are really groups with high possibility of HIV infection 1 ; nevertheless, what we should question is: do these actively monitored groups really have high possibility of HIV infection or are they necessary for being tested? Or are they just groups that can be tested more conveniently? Adding a mandatory HIV test into different current physical examinations while people are pregnant, employed, serving in the army and staying in prison is actually a cheap policy of HIV testing, which usually makes individuals unable to refuse. Moreover, it reflects the fact that HIV testing is indeed a discrimination under the cover of the name of testing. 96 Exposure: Issues of Privacy Concerning AIDS-Related Medical Care

100 Chapter 2 Case 2 In 2003, Shan had the routine health examination of his company in a city hospital, which included Hepatitis A and Syphilis. However, after receiving the report, Shan was surprised to find out that an HIV test was automatically added into his examination even though his company didn t ask for that. The hospital did an HIV test for Shan without informing him. Shan was very confused about this, and the reply of the hospital was, It is for sure that your company will ask for a HIV test. Exposure: Issues of Privacy Concerning AIDS-Related Medical Care 97 The Chief Director of the Department of Health in the city then replied in an official document saying, Concerning public health and the prevention of contagious diseases, HIV testing is added when undertaking a Syphilis test for free. It is for a better control of the hidden possible infection and to make sure the health of you and your family. Shan was forced to be tested for HIV, and it is legitimized with the concern of public health. In fact, in order to pursue a better achievement, the Departments of Health in many cities do HIV tests to the samples they get when they offer free health examinations in communities. Because of the encouragement of public health authorities, more and more hospitals put HIV tests into their different kinds of physical examinations with or without notification.

101 Besides, more and more companies are influenced and ask for HIV testing in their required health examinations for employees. This mechanism of active monitoring resulted from compulsion or concealment exactly reveals that the logic of contemporary public health policies is to sift out infected ones without respecting personal privacy. Passive monitoring Passive monitoring can be divided into two parts: to provide one s name while receiving tests and to receive tests anonymously. People with basic knowledge of HIV/ AIDS tend to choose anonymous HIV tests. Due to the great stigma of AIDS, anonymous HIV testing is designed to encourage people who consider themselves as possibly infected but are afraid of being exposed to face their body conditions. Actually when a person is found to be infected with using his/her real identity, the hospital will soon report to the Department of Health, and the individual will immediately be followed and controlled by public health authorities. Besides, it will also have impact on his/her insurance 2, military service, medication, job and other issues related to 98 Exposure: Issues of Privacy Concerning AIDS-Related Medical Care

102 Chapter 2 daily life. Since the fact of HIV infection has such a great impact on individuals, in PRAA s opinion, anonymous HIV testing can not only encourage possible infected ones to receive tests, but more importantly, it can also provide individuals chances to absorb the shock. As soon as they are ready on their mental and living aspects, they can enter public health system with their real identities, facing the fact of their HIV infection. Yet under the logic of public health authorities who tries hard to sift out and control people with HIV/AIDS, the implementation of anonymous testing loses its original good intention. Exposure: Issues of Privacy Concerning AIDS-Related Medical Care 99 Case 3 In accordance with the general procedure of HIV testing, when an individual is found to be infected, he/she needs to do the test one more time; if the result still shows as infected, then the individual will have to leave his/her name and receive a Western Blotting test in order to confirm his/her status of infection. After the fact of infection is confirmed, the individual will be reported by the hospital to the local Department of Health, and will be traced and controlled. Wen had a different experience. She had an anonymous HIV test in

103 a hospital and was informed by the hospital after one week that she was suspected as infected, and that she needed to go to the hospital to have the second test with her health insurance card for further confirmation. Not until when Wen arrived the hospital, did she realized that the hospital had already did a Western Blotting test with the previous sample of blood. In other words, the hospital had already confirmed the fact that Wen was infected, but they used the second test as an excuse to ask Wen to provide her real name and contact information, so that they could report to a public health authority. Case 4 Hsien went to a hospital to do an anonymous HIV test. While not explaining the procedure, the nurse sniffed: I can t understand why you choose to do it anonymously. In this case, if you are found to be infected, you won t be able to receive medication and see a doctor. Consequently, Hsien chose to leave his real name out of worries and fear. The nurse concealed the fact that as long as Hsien receives a Western Blotting test after being found as infected, he will be able to receive medication even without leaving a real name. However, she asked Hsien to leave his real name by threatening. In fact, what medical personnels say are seldom questioned in Taiwan society, which accounts for the result that patients seldom or never get enough information before medical treatments. 100 Exposure: Issues of Privacy Concerning AIDS-Related Medical Care

104 Chapter 2 Hospitals indeed infringe personal privacy seriously as they acquire personal health/disease information by means of concealments, actions at people s discretion and beguilements. Moreover, they force many people to enter the reporting system when they are not ready yet. In our opinion, because health/disease information is related to personal privacy, people should have rights to decide if they receive any tests and the items of the examinations should be done honestly. Exposure: Issues of Privacy Concerning AIDS-Related Medical Care 101 In addition, sifting out people with HIV/AIDS does not equal to the epidemic prevention. If a confirmed status of HIV infection means the serious damages to basic human rights of individuals, nobody will be willing to receive tests, and that s exactly where the lose-lose situation of catching and hiding comes from. Tracing of public health authorities People with HIV/AIDS in Taiwan will soon be reported to public health authorities as soon as they are confirmed as infected, and then they will receive the investigation and tracking from the nurses in the authorities. It is a fact that some of the nurses ask people with HIV/AIDS about their medication and doctors out

105 of caring; however, the real purpose of the tracing system is to control people with HIV/AIDS as criminals. Case 5 Kay had been infected with HIV for years, and had contacted with several different nurses. Whenever a new nurse came, she called and asked Kay to repeat how he was infected from the beginning. Are you homosexual? Or did you have sex with prostitutes? Or did you use drugs? All these questions bothered Kay over and over again, which he could barely stand. In addition, the nurses called every month, asking Kay if he had sexual activities recently and if he used condoms. No matter he had safe sex or not, they asked him to bring his partners to hospitals and have HIV tests. This made the relationship of Kay and the nurses more and more intense. Finally, the nurses just asked Kay to report to them actively every month the information they need to know for the tracing. Case 6 In 2003, a senior nurse tried to trace Yui by phone but in vain, so she decided to visit him in person. When the nurse met Yui s father, she asked: Is Yui home? Do you know if he does take his medicines? I am his friend. Yui s father was suspicious so he asked the nurse: What disease does he have? The nurse then tried to cover her nervousness and answered: No, I can not tell you according to our regulations; I am from the Department of 102 Exposure: Issues of Privacy Concerning AIDS-Related Medical Care

106 Chapter 2 Health. Would you please ask him to contact me? Finally, Yui s father got to know that his son was infected with HIV, and had hypertension that night. Yui s dad was sent to the hospital and Yui was blamed as unfilial by the whole family. When the social worker of PRAA contacted with the nurse, she stated that she didn t reveal the fact of Yui s infection directly. Besides, because of the pressure of effective tracing, she wanted to get more information after trying hard to find out Yui s address, or she would not be able to report on her mission. Exposure: Issues of Privacy Concerning AIDS-Related Medical Care 103 In Prevention Act, the ninth article declares the obligation of people with HIV/AIDS to inform their status of infection, and states that authorities can conduct investigations actively, Individuals infected with HIV have the obligation to provide information on sources of infection or their contacts. When under medical care, they shall inform medical personnel that they have been infected with HIV. Competent health authorities at various levels may conduct investigation on patients of HIV infection, their sources of infection or contacts In practical experiences, the privacy of many people with HIV/ AIDS is invaded just because of the tracing of nurses in public health authorities. What is the qualification of these personnel who are in charge of tracing, and what are their authorities? PRAA believes that many nurses in public health authorities

107 seem to lack skills and have the discrimination against people with HIV/AIDS, which suggests a great space for our tracing system to be improved. Moreover, it all comes down to the logic that tracing equals to controlling, and the requirements of effective performance that force the work of tracing and following up to be done in a fast, rude way. Now what is done for tracing of people of HIV/AIDS in public health authorities is, if the nurses can not reach individuals by phone for more than three times in a month, the nurses then will search the information in local Household Registration Offices, and tried to visit individuals through their addresses registered in the offices. Furthermore, if individuals already move out from the addresses, the nurse will look into the personal records of medication in the assigned hospitals for AIDS medical care and in Bureau of National Health Insurance, which means that people with HIV/AIDS will be found out sooner or later unless they do not receive any medical care. The procedure of tracing is rigid; however, does it really help preventing the disease? Does it really stop HIV virus from transmitting by demanding people with HIV/AIDS to provide the list of with whom they have sexual behaviors? It has proved that, the tracing system of public health authorities 104 Exposure: Issues of Privacy Concerning AIDS-Related Medical Care

108 Chapter 2 not only exposes personal privacy of infected people frequently in direct or indirect ways but also builds an intense relationship between the nurses and people with HIV/AIDS; the system instead is harmful to the prevention of HIV. National health insurance IC card National Health Insurance IC Card (NHI IC Card) seems to be a convenient policy that saves medical resources, but it is actually a huge loophole in terms of the medical privacy of people with HIV/AIDS. NHI IC Card has aroused a great deal of worries and discussions among HIV/AIDS community since Exposure: Issues of Privacy Concerning AIDS-Related Medical Care 105 Although in the first phase of enforcement the information about major illnesses and injuries was not recorded in the IC Card, people with HIV/AIDS believed that all doctors would be able to know if the patients were infected with HIV or not by reading their IC Cards based on the policy of NHI IC Card, which planned to combine NHI IC Card with the original Major Illness and Injury Card. Hence, people with HIV/AIDS would face more difficulties regarding receiving medication, and their privacy would be

109 隱私全都露:愛滋醫療隱私106 thoroughly transparent in front of all doctors in the country. Learning from the discussions and suggestions from many experts, academic authorities and private organizations, Bureau of National Health Insurance promised PRAA in an official document that in the second phase of enforcement of IC Card, all information about AIDS-related diseases would not be recorded in the card. Nevertheless, there still have been problems concerning medical privacy of people with HIV/AIDS all over the country. Case 7 In 2005, Ming received treatments for AIDS in a governmental assigned hospital regularly. Someday when he went to a nearby private clinic for his cold, the doctor asked him: What kind of Serology Test did you have in the hospital? Ming felt really uneasy and asked his doctor in charge during his next routine examination in the hospital. After reading the IC Card, his doctor then found out that there was a record of Examination HIV Viral Load Examination written under Ming s prescription in the IC Card. Not until now did they realize there was something wrong. After being reminded by private organizations, all the people with HIV/AIDS who had received medical treatments in that hospital started checking their own IC Cards. Six people found that their IC Cards were also written in HIV related information, which had

110 Chapter 2 probably already been copied into the computers of other clinics and exposed their privacy. The doctors explained that, it is the problem of the computer program: as long as patients receive HIV Viral Load Examinations, the information will be written into patients IC Cards by the computer automatically, and it is not what they can change. PRAA continually heard from people with HIV/AIDS from different regions whose privacy was damaged because of the IC Cards. It was obvious that the marking on IC Cards was not just a single case in a certain hospital. Exposure: Issues of Privacy Concerning AIDS-Related Medical Care 107 There were at least six assigned hospitals for people with HIV/ AIDS which didn t follow the instruction of Bureau of National Health Insurance in their inner-hospital computer systems, when having no proper design for the code of HIV- related diseases. When doctors keyed in patients information as the instructions of the systems in hospitals, AIDS-related information of the patients would be written into the IC Cards automatically. Sometimes the information was written under prescriptions of examinations or medicines in some hospitals, while sometimes it was marked as Infected with Human Immunodeficiency Virus under main diagnoses in other hospitals. If doctors didn t key in the information as the computer

111 system asked, the computer would not have been able to finish the process of the treatments; even when doctors tried to use other codes to protect patients privacy, the computer couldn t calculate the price because of the different names of the disease, which were not recognized as serious illnesses or injuries as AIDS was. Finally, in order to take their medicines, people with HIV/AIDS had to be marked with AIDS-related information, and then apply for a new IC Card as pretending that they had lost their card in order to solve the problem of being marked. When PRAA tried to communicate and negotiate with different hospitals, most hospitals were willing to modify the inner-hospital computer systems to follow the decision of Bureau of National Health Insurance, while some hospitals refused to do so with the reason of protecting the safety of doctors. Although a few hospitals had modified their systems and the doctors were not able to read any peculiar mark/record on the IC Cards, however, PRAA has kept hearing from people with HIV/AIDS who have been marked with their information on their IC Cards since the second phase started. Till now, people with HIV/AIDS still can not receive medical treatments contentedly. The efforts and experiences of PRAA on the NHI IC Card policy reveal the difficulties to carry out this policy from the top to the 108 Exposure: Issues of Privacy Concerning AIDS-Related Medical Care

112 Chapter 2 bottom of the system, and explain that the hugeness and the complicacy of medical informative system are not able to be taken care of by a single doctor or a single computer engineer in the hospital. It turns out that the promise of privacy protection made by public health authorities to the public is so fragile. Interaction with medical personnel Exposure: Issues of Privacy Concerning AIDS-Related Medical Care 109 In recent years, medical information as a concept of privacy has received more and more attention in Taiwan. For example, the idea of the Secret Keeping Campaign in National Taiwan University Hospital, more and more doctors have agreed that the information about personal diseases should not go public without patients consent. Even if it is for the need of public health, the range of information should be limited. As there are more and more people with HIV/AIDS, medical personnel also have more and more knowledge about how to protect the privacy of the patients. However, people with HIV/AIDS are still violated in their privacy while interacting with medical personnel. Case 8 Huang was hospitalized due to tuberculosis, but the hospital did a HIV test for him without telling him while the hospital suspected that

113 Huang may be infected. After confirming his status of infection, the hospital then told Huang s sister. After that, none of Huang s family and friends came to the hospital to visit him, Huang turned out to be the last person to know about his body condition. The nurses in the hospital explained to PRAA that it s clinicians responsibility to inform patients of their conditions; based on their experiences, sometimes they worry that patients are not able to accept the fact, so they tend to tell their families first, and then the families can decide if they want to tell the patients or not. Such a rule of thumb seems to comply with the medical ethic, but actually does damage to the privacy of Huang, and leads to the exclusion of his family. Case 9 Yu received treatment for HIV/AIDS in one of the assigned hospitals for people with HIV/AIDS. One time, she noticed that all the nurses were making excuses to avoid drawing blood for her, and then she realized that it was because there was a mark representing HIVinfected on her medical history. Accordingly, no matter which discipline she went in the hospital, the medical personnel were able to identify her as infected with HIV through her medical history. Another time when Yu was hospitalized, a friend of Yu who had 110 Exposure: Issues of Privacy Concerning AIDS-Related Medical Care

114 Chapter 2 used to be a nurse saw next to her bed the trash bag for infectious waste, and then she started guessing if Yu was infected with HIV, which caused a lot of trouble. Those unpleasant experiences made Yu disappointed at the hospital, and refused to go back for further treatments. There are many symbols and labels inside hospitals that are used to identify, categorize and arrange patients; however, it is questionable if all medical personnel in hospitals need to know if patients are infected with HIV or not. In PRAA s opinion, medical personnel don t have to worry about being infected as long as they follow the standard protective measures; therefore, it is not necessary to treat people with HIV/AIDS with double standards. Exposure: Issues of Privacy Concerning AIDS-Related Medical Care 111 In addition, the system of multi-disciplines consultation for people with HIV/AIDS inside hospitals now actually forces patients to expose their privacy to medical personnel of other disciplines. This not only leads to the invasion of their privacy, but also affects the integrity of their medical rights. Another situation that might cause medical privacy of people with HIV/AIDS to be exposed is when they pass away. Although HIV virus does not transmit through food and air, it is still mandated 3 to cremate the remains in 24 hours or to bury them deeper than 7 Chhiohs (Note: 1 Chhioh = Meters)

115 according to the related regulations about how to deal with remains of people with HIV/AIDS. This is very different from traditional funeral and burial customs, which often makes families and friends realize that the departed dies of AIDS-related syndromes, and thus, the shock to the families is greater than the one because of other diseases. PRAA thinks that the current regulations just follow the tradition of how to deal with remains died of other acute infectious diseases without the support of scientific knowledge and proofs. To the departed, the secret that they have been kept for their whole lives is forced to be revealed. Diseases as a personal privacy AIDS is not only a syndrome defined by medical professions, but also a social disease that is labeled and punished by morale and laws; the term people with HIV/AIDS is a description of personal body condition as well as a stigmatized identity suffering from moral condemnations and invasions of human rights. The related issues aroused by the medical privacy of people with HIV/AIDS, on one hand, reflect that AIDS is still strongly 112 Exposure: Issues of Privacy Concerning AIDS-Related Medical Care

116 Chapter 2 stigmatized and discriminated, which makes the infection of HIV a privacy that should not be told and revealed; on the other hand, from the related policies and regulations of public health authorities, we can see that information of diseases as a privacy indeed is not valued, and is often sacrificed for the reasons of public health. PRAA believes that, from the discussion in this chapter, individuals infected with HIV should have their privacy and they should also have rights to decide whom to tell and whom to keep the information. Exposure: Issues of Privacy Concerning AIDS-Related Medical Care 113 In addition, it has been proved by the fact that, all the mandatory interventions which use public health and the protection of safety of medical personnel as excuses, while sacrificing personal privacy, only has the opposite effect, resulting in some negative consequences: 1. Mandatory HIV testing was meant to find out more people with HIV/AIDS, but as more and more hospitals and companies follow, it makes those hidden infected ones more and more terrified and tend to hide themselves, which can never benefit the work of destigmatizing. 2. The strict tracing of public health system was designed for a better monitoring and control of people with HIV/ AIDS, but the actual manipulation doesn t help change the

117 behaviors of individuals but makes people with HIV/AIDS more unable to trust the medical system. 3. Although the related public health authorities have promised to protect the privacy of people who have certain diseases during the formulation and implementation of the NHI IC Card policy, the actual incidents of damaged privacy reflect the hasty formulation of policies, and the technical difficulties of hospitals. It is more and more difficult to protect personal medical privacy in the era when our medical histories are computerized. 4. The concept of diseases information as a privacy has been advocated for years; however, from the experiences of interacting with medical personnel we find that the privacy of individuals can still be harmed because of the lack of education related to privacy offered to medical personnel, and because of the old scheme inside hospitals. The discussion about medical privacy of people with HIV/AIDS does not only affect people who are infected. Through the discussion in this chapter, we can discover that the medical system and medical policies today are collecting the health information of individuals in a more and more delicate way, in order to categorize and control individuals. As an individual in contemporary society, we should prevent 114 Exposure: Issues of Privacy Concerning AIDS-Related Medical Care

118 Chapter 2 our medical privacy from being invaded with more awareness while we receive medical treatments, physical examinations, fill in questionnaires and provide information for insurance companies whether we are infected with HIV or not. Only when more and more people are aware of their medical privacy, we will be able to improve current situations. Note 1 The groups with high possibility of HIV infection here refer to the groups whose frequent behaviors share a high risk of being infected with HIV, and therefore, the government uses the identities of groups as a basis for mandatory HIV testing, rather than the dangerous behaviors. Exposure: Issues of Privacy Concerning AIDS-Related Medical Care The insurance here refers to related medical insurances. Because a series of treatments usually follows the fact of being sick, and because insurance companies can not know well about the body condition of individuals, they tend to reject people with HIV/AIDS when they apply for insurances. Except for this, other insurances are not affected. 3 Here is the misunderstanding about the regulations. It is stated in the regulations that remains should be reported to local public health authorities in 24 hours in order to deal with the remains properly. However, the proper way of dealing with

119 the remains is misunderstood as being required to cremate the remains in 24 hours or to bury them deeper than 7 Chhiohs. Therefore, families are usually confused about the regulations and then find out the fact that the departed is infected with HIV. 116 Exposure: Issues of Privacy Concerning AIDS-Related Medical Care

120 Chapter 3 An Overview of the Policies: Medical Policies Related AIDS To those people with HIV/AIDS who have taken medicines regularly and have a good control and management of their body conditions, taking medical treatments just means to go back to hospitals regularly, which doesn t cause too much trouble. What really affects their medical rights is not the HIV virus in their blood, but the AIDS-related medical system formulated by the government. In the following context, we are going to discuss the development and the meaning of AIDS medical policies in Taiwan from 5 different aspects individually.

121 The change of funding in AIDS medical policies In 1990, AIDS Prevention and Control Act was passed in legislation and started its implementation, and in the act, in order to fulfill the purpose of supervision and monitoring, the legislators asked the government to pay for the expenses of medical treatments of people with HIV/AIDS by national budgeting. To encourage people to receive HIV tests and related medical care actively is the reason why the expenses of AIDSrelated medical treatments are all afforded by the government. Although one of the original purposes is to control people with HIV/AIDS, the policy does benefit people with HIV/AIDS with free medication, which can be considered a rare humanistic AIDS medical policy all over the world. In 1994, National Health Insurance Act was passed in legislation. At that time, legislators think that central official budget is for prevention while the payment of AIDS-related medical treatments belongs to expenses of cures and treatments, which should make more sense to be paid by Bureau of National Health Insurance (NHI Bureau). Therefore, AIDS Prevention and Control Act was revised in 1997 based on this conclusion, and then the scope of major illnesses and injuries was announced in 1998; then AIDS was listed as one of the major illnesses and injuries. 118 An Overview of the Policies: Medical Policies Related AIDS

122 Chapter 3 After AIDS was taken into the system of National Health Insurance, as more and more people are infected, NHI Bureau starts treating people with HIV/AIDS with a different attitude; it often emphasizes that the high expenses of AIDS medicines cause a financial crisis of National Health Insurance, and will break down the system. 2005, AIDS Prevention and Control Act was revised again when the article 7-1 was changed into, the expenses shall be paid from the budget of the central competent health authority, and may entrust the Bureau of National Health Insurance with the payment. from the original content, the expenses shall be paid by the Bureau of National Health Insurance. Among several different diseases that are paid by NHI Bureau, AIDS was moved out and changed back to be paid by central official budget. An Overview of the Policies: Medical Policies Related AIDS 119 There are different advantages and disadvantages whether the expenses of AIDS medical treatments are paid by Bureau of National Health Insurance or by central official budget; PRAA has no intention to suggest which one is better. However, what we should question is: Is it a buck-passing when NHI Bureau excludes AIDS because of the economical concerns since National Health Insurance is a concept that the risk of health is shared averagely by people who are sick?

123 In addition, there are many other diseases with higher expenses than HIV in the list of major illnesses and injuries (such as dialysis), why is AIDS the one that is excluded by NHI Bureau if the decision is based on the economical concern? Once after people with HIV/AIDS start taking medicines, stopping it randomly may result in the resistance to drug of HIV virus, and then the same medicine will lose its efficiency even if individuals restart taking the medicine after a while. Consequently, the frequent change of funding policies as well as the statement that it will cause the financial crisis and the burden to the government will browbeaten people with HIV/ AIDS, who are afraid that someday they won t be able to get any medicines or they will have to pay for the high expenses on their own. Free medicine but costly medication Early in 1987 to 1990, when the AIDS Prevention and Control Act was discussed and formulated, the legislators believed that AIDS-related medical care should be provided freely, while the Department of Health kept emphasizing: The payment of AIDS-related medical care should be free for those people who 120 An Overview of the Policies: Medical Policies Related AIDS

124 Chapter 3 were infected because of hemophilia or because of providing medical assistances as a medical personnel. However, it is quite unfair if we use the money from all the taxpayers to provide medical treatments for people with HIV/ AIDS who were infected through improper sexual behaviors or through sharing needles for drug injection. In fact, it is difficult in practical work to distinguish the innocent infected ones from the deserved ones, and that s why right now Taiwan government provides free medication for all the people with HIV/AIDS. On the other hand, when the statement that Too many people with HIV/AIDS cause our financial crisis is brought up every few years, the condemnations of those deserved infected ones are always aroused. An Overview of the Policies: Medical Policies Related AIDS 121 That explains why AIDS medical expense is particularly examined and regarded as a burden to National Health Insurance system, and reflects how the stigma of AIDS affects AIDS-related medical polices and how it affects every person with HIV/AIDS as they receive medication. The many difficulties people with HIV/AIDS face in Taiwan when they have medication are closely bound up with the stigma of AIDS. We all know that diseases not only refer to physical illness but also carry many social morale and values,

125 which make some diseases more shameful or condemnable. For instance, we go to doctor naturally when we have a cold but feel discredited when we consult doctors for sexual diseases. HIV/AIDS has the same routes of infection as Hepatitis B, but as Hepatitis B is considered as a national disease due to the huge amount of people who have it, AIDS is strongly connected to improper sexual behaviors. The stigma of sex (and now the label of crime of using drugs and sharing needles as well) is attached keenly to people with HIV/AIDS. The ex Chief Director of the Department of Health Bo-Ya Chang had emphasized several times: People with HIV/AIDS will live a life without dignity and die uglily. She even prohibited famous NBA player Magic Johnson from entering Taiwan with the reason that Magic Johnson was infected with HIV because of his improper behaviors (having sex with prostitutes). As a matter of fact, in the AIDS prevention policies in Taiwan, we always tend to separate people who are infected into two groups: innocent ones and deserved ones, condemning some infected people as deserving the disease because of their improper behaviors, and the discrimination brought by this categorizing also does harm to the medical rights of people with HIV/AIDS. 122 An Overview of the Policies: Medical Policies Related AIDS

126 Chapter 3 Hsien in case 3 is an example, whom was assumed by the doctor as having improper behaviors and was attacked by the nurse with the statement that he made the government lose money. In PRAA s opinion, every one could be sick, and people who are sick should be taken care of, without any differences depending on why they are sick. If we want to judge it with the logic of guilt and responsibility, then who does not deserve for his illness? Many people have chronicle diseases because of their unhealthy habits, and since they can have free medication, why do we treat people with HIV/AIDS differently? Putting the medical responsibilities on individuals is actually to make the governmental responsibility of taking care of sick people out of focus. An Overview of the Policies: Medical Policies Related AIDS 123 The impact of central official budget on doctor-patient relation After the funding of AIDS-related medical care was changed back to be afford by central official budget in 2005, some people with HIV/AIDS have started noticing that they now have to pay partly for some medicines of some chronicle diseases

127 which are used to be paid by the insurance (Note: Some people with HIV/AIDS have other chronicle diseases besides of AIDS.) Therefore, the expenses of medication have become much more suddenly. Many people with HIV/AIDS had negative feedback on the change at the beginning, partly because some people have some chronicle diseases possibly due to anti-hiv virus medicines, or the damages that HIV virus causes on human immune function. For example, there s a high correlation between taking medicines to lower blood fat level and taking anti-virus medicines for AIDS in some cases. The Department of Health has taken this kind of situation into consideration when planning for the enforcement rules about payments from central official budget. However, it is not easy to come up with a mandatory regulation because there s no absolute cause and effect relation showed in scientific methods to judge if some diseases are caused by some certain reasons. As a result, the Department of Health delegates the right of judging to the doctors in Infectious Diseases Departments, who are authorized to decide. If the doctors think the medical needs of patients are related to AIDS, then the expenses will be afforded by central official budget; to the contrary, patients will have to pay partly for the cost if the doctors think the diseases are not related to AIDS. 124 An Overview of the Policies: Medical Policies Related AIDS

128 Chapter 3 However, there are still many problems under this circumstance. The most common situation is, people with HIV/AIDS are usually afraid of going to other disciplines due to many previous experiences of being rejected, which makes them very dependent on doctors in Infectious Diseases Departments. They tend to consult with doctors in Infectious Diseases Departments rather than going to private clinics or general physicians even when they just have minor illnesses. After the enforcement rules of central official budget, the kind assistances from those doctors may cause their own problems. An Overview of the Policies: Medical Policies Related AIDS 125 Besides, although doctors in Infectious Diseases Departments are authorized to decide whether patients needs are related to AIDS based on the regulation, their decisions have to be inspected. If the results of inspections are different from the decisions of the doctors, the Department of Health will entrust the deliberation to Taiwan AIDS Society. The lack of assigned hospitals for people with HIV/AIDS People with HIV/AIDS pay for tax and health insurance like other people else, but they can only have secondary medical quality.

129 In Taiwan, the Department of Health has assigned certain hospitals as specialized medical institutions for people with HIV/ AIDS to receive medical assistance. If people with HIV/AIDS need to receive medicines for Cocktail Therapy or have their physical examinations (CD 4 T Cell and HIV Virus Load), they can only go to these assigned hospitals. All the assigned hospitals for AIDS are in a higher level than regional hospitals, which not only results in higher medical expenses for people with HIV/AIDS but also reflects the lack of medical institutions for people with HIV/AIDS. Individuals need to go back to hospitals and take the medicines regularly once they are infected with HIV. To those people who live in remote areas, it is inconvenient for them to ask for leaves in order to go to hospital. Till now (2006/05), there have been more than ten thousand people in Taiwan who are infected with HIV, but there are only thirty-four hospitals among more than seventeen thousand medical institutions that provide medical assistance for people with HIV/AIDS. Some counties such as Miaoli and Chiayi still don t have any assigned hospitals there; in some assigned hospitals, there are only one to two doctors who provide AIDS-related medical 126 An Overview of the Policies: Medical Policies Related AIDS

130 Chapter 3 treatments. The quantity and the quality of AIDS-related medical treatments are both deficient. The system of assigned hospitals was designed to centralize the resources for AIDS-related medical care because of the fact that not so many medical personnel are willing to provide medical assistance for people with HIV/AIDS. However, the system now turns out to differentiate the visibility of AIDS while other hospitals can be perfectly justifiable to reject people with HIV/AIDS. An Overview of the Policies: Medical Policies Related AIDS 127 Concerning this situation, Centers of Disease Control of the Department of Health reached a conclusion in AIDS Prevention Conference in 2006, The assigned hospitals for people with HIV/AIDS are mainly medical centers and regional hospitals, and in order to cope with the fact that AIDS has become a chronicle infectious disease, and to improve the accessibility for individuals to receive medication, we are going to ask the assigned hospitals to discuss the possibility to establish community clinics. We will also discuss it in the AIDS Prevention Promotion Team As community clinics appear, PRAA expects that the medical service for them can be more convenient and easy under the condition that the medical rights of people with HIV/AIDS are not invaded,.

131 The lack of supervision in the assigned Hospitals Case 10 Wu originally received his medical treatments in Kaohsiung E-Da Hospital, but after spring in 2006, he noticed that every time the pharmacy in the hospital told him the prescribed medicines are out of stock. Other people with HIV/AIDS who received medical treatments in E-Da hospital also had the same experience, so they could only go to other hospitals in southern Taiwan for medication. Right now the funding for AIDS-related medical care is maintained by the annual budget government plans, and what E-Da hospital did results in the overbalance in AIDS budget in other hospitals. Wu said: If the situation doesn t change, other hospitals will run out of funding as well. Are we all going to Northern Taiwan to see a doctor? According to one anonymous medical personnel in E-Da hospital, once in a managerial meeting, one of the managers said: E-Da is a high-class hospital, and we should not provide medical care for this dirty, shameful disease. The manager also indicates the hospital to delay the purchase of the related medicines, trying to stop people with HIV/AIDS from receiving medication. Besides of the lack of number of the assigned hospitals, there s also a lack of the standard and mechanism of supervision. 128 An Overview of the Policies: Medical Policies Related AIDS

132 Chapter 3 There is not only E-Da hospital who tries to exclude people with HIV/AIDS with the reason of the lack of medicines and equipments, and even in an execrable attitude. As what we can see clearly, the design of the assigned hospitals has becomes a convenient method for hospitals to obtain a better result of evaluation: once the hospitals become the assigned hospitals for people with HIV/AIDS, their score on evaluation will be raised. But after the evaluation, the hospitals may try to exclude patients in different ways, and the medical rights of people with HIV/AIDS are still damaged. There are much fewer doctors in Infectious Diseases Departments and assigned hospitals that are willing to accept people with HIV/AIDS friendly than the number of official statistics. While the options of people with HIV/AIDS are limited, the doctor-patient relation is more unequal. An Overview of the Policies: Medical Policies Related AIDS 129

133 130 An Overview of the Policies: Medical Policies Related AIDS