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  • Seven-year-old Hong Kong boy with rare disease still waits for drug treatment as payment debated


    Hospital authority and manufacturer fail to strike deal on treatment that costs more than HK$2 million a year

    Elizabeth Cheung
    elizabeth.cheung@scmp.com

    After two years of waiting with little hope in sight, a seven-year-old Hong Kong boy will continue to suffer the unbearable conditions of a rare disease that gave him a bell-shaped chest and deformed wrists and legs, unless he gets subsidised access to an expensive drug on a long-term basis.

    A drug treatment that costs more than HK$2 million a year is Xiao Hiu-chun’s only hope to stop his condition from deteriorating due to the lack of a specific enzyme in his body.
    But his hope remains distantas the city’s public hospitals have failed to strike a deal with a manufacturer on how to split the drug’s large financial cost to make it more affordable.

    Born with a flared-out chest, Hiu-chun was diagnosed with Mucopolysaccharidosis type 4A at the age of three, and has only grown 2cm in the past five years.

    His condition has deteriorated, and his wrists and legs have become deformed, leading to difficulties in writing and walking for long periods. 閱讀更多

  • 黏多醣症四型藥物未列名冊 議員促成立蒲公英基金供藥


     

    黏多醣症屬罕有先天性新陳代謝異常的疾病,一般分一、二、三、四、六、七、九型。由於患者體內缺乏某種酵素,無法分解黏多醣,積聚過多令患者細胞功能受損。臨床病徵包括個子矮小、胸骨凸出、脊柱側彎及膝外翻等,也會破壞心臟,骨骼,關節,呼吸道系統等多重器官,一般預期壽命約30歲。

    香港黏多醣症暨罕有遺傳病互助小組現有26名黏多醣症患者會員,當中7人屬四型,按統計發病率為每20萬人有2至3人,目前蕭曉進是全港黏多醣症四型患者中年紀最小。小組副主席賴家衞表示,若患者一直缺乏藥物治療,雙腳不斷彎曲惡化,嚴重喪失走路能力,需坐輪椅;加上肌肉張力下降,損害肺功能,甚至要用呼吸機維持生命。
    目前治療一型、二型及六型的黏多醣症酵素替代療法藥物,已列為藥物名冊內的專用藥物,但曉進所需的四型藥物於2015年不獲審批。賴家衞表示,在台灣有跟曉進同齡的患者,早年已開始用藥,補充所缺酵素以分解體內的黏多醣,能舒緩和控制病情,避免成長路上骨骼、肌肉張力等不斷惡化。

    現時藥物名冊約有1,300種藥物,病人可於公共醫療服務獲處方使用。藥物分為通用、專用及自費三類,部份自費藥物獲安全網資助,包括撒瑪利亞基金和關愛基金等。藥物建議委員會定期評估新藥物,但常被批評審批冗長。

    去年審計署報告指出,2013至16年度名冊只增加51種藥物,但2015/16年度,公立醫院及診所便使用45種已註冊的非名冊藥物。立法會議員張超雄指出,醫管局平均一年藥費涉款60億元,佔總開支約10%,比例僅是本地生產總值0.25%,低於經合組織、南韓及日本等,「公共資源投放於藥費,相對其他地方係低,有條件可增加」。

    他建議港府撥款200億元成立「蒲公英基金」,參照台灣的做法,專為罕見病及癌症患者提供藥物,若有關藥物獲醫生認可及推薦,只需經基金委員會通過便可,委員會由政府、醫管局、醫生及病人組織等組成,「而家個問題係好慢,如果加快審批程序,可以讓患者盡早得到治療」。

    記者 王家文

    2017年9月4日 蘋果日報

     

  • 什麼人訪問什麼人﹕寬待學生硬碰校方 張超雄理大退休:估唔到我會有「善終」

    什麼人訪問什麼人﹕寬待學生硬碰校方 張超雄理大退休:估唔到我會有「善終」

    【明報專訊】張超雄講書風格出名「悶」,學生形容,他的聲線沒抑揚頓挫,長時間維持着monotone,他不會擺「老師款」,課室秩序往往有點失控:同學知道他不點名,會走堂;知道他不罵人,所以上堂吃叉雞飯、睡覺、打開電腦看視頻;小休時間特別長,有學生趁機上前「挑機」,無大無細在班房裏直斥這位「保守老泛民」不夠激進。他不動怒,小鬍子安靜地掛在臉上,其實在他心中,最怕學生不跟他坦白。

    沒人知道,教書已二十年,學生口中的阿Fer仍然為上課緊張。他辦公室有個相架鑲了一句「金句」:「Have I Eaten My Lunch Today?」原來是美國舊同事知道他常因工作忘記吃飯,送給他的幽默紀念品。其實,阿Fer上課前常不吃飯,生怕吃錯東西肚痛。筆者也是教書的,聽後難以置信,做了幾屆立法會議員,在議事堂高談闊論,在班房對着幾十個黃毛小子,壓力如此大?性格認真的阿Fer好老派,他說,教書責任大,驚教不好下一代。他和怪獸家長對着幹,別人加功課,他減功課。只要學生投訴功課多,他就心軟,在交功課日期上讓步。我問他的學生,阿Fer是「很好欺負的老師」?這位調皮的畢業生笑言:「都幾好蝦㗎,老老實實。」

    不過,這位「悶蛋nice guy」也深得學生愛戴,學生形容:「佢係一個好悶嘅好老師。」一位心思細密的女學生說,去年農曆年初二,旺角凌晨發生警民衝突,之後上課期間,張超雄撇開原訂教材,跟同學用一堂時間談論事件,她記得:「其他老師跟我們談時事,只是循例一聽,當時阿Fer特意拿一張椅子坐在我們中間,有些老師是不會離開『講壇』那個位置,但阿Fer不同,他願意花時間去聽。很多人說現在世代衝突厲害,但他態度不同,他不介意我們的立場,只想知我們後生仔到底在想什麼。」這位阿sir剛剛六十大壽,「登陸」要退休,畢業生們都嘆師弟妹將失去一位「貼地」、「實戰型」、「walk the talk」的好老師。 閱讀更多

  • 專訪:張超雄談香港殘疾人權利

    張超雄談香港殘疾人權利

    專訪:張超雄談香港殘疾人權利—國際特赦組織香港分會《人權》雜誌第20期冬季號2016

    網上閱讀:請按此
    簡易圖文版:請按此

    問:國際特赦組織香港分會
    答:張超雄博士(立法會議員、香港理工大學應用社會科學系講師)
    攝影師:戴毅龍

    問:為何你會致力爭取殘疾人權利?

    答:因為我有個嚴重智障的女兒,亦是社工,更應利用自身位置,彰顯殘疾人權利。

    問:就「康橋之家」智障人士疑遭性侵犯事件,你對香港保障殘疾人法律身分(legal capacity)的情況有何評論?

    答:就殘疾人法律身分而言,香港保障相對落後,因為仍然採用醫療角度,視殘疾為疾病,需要治療。當某人的殘疾達至不能自理的程度,無法為自己打算,可屬「精神上無行為能力」人士。

    精神上無行為能力人士的法律權利,亟需檢討

    在康橋事件,「精神上無行為能力」人士的身分既是保障,亦屬剝削。當局基於公平審訊及法律面前人人平等的原則,用同一把尺,要求智障受害人接受辯方盤問,但這樣對她相對不利。性侵犯受害人可能會難以啟齒,智障人士更難以應付盤問。到底是否有制度,既可揭露性侵真相,同時減輕對智障受害人可能造成的傷害?我正在研究外國做法。至於本地保障,一九九三年,有一宗聾啞智障女生疑遭性侵犯案,當事人於庭上情緒崩潰,法官出於保護她而終止聆訊,被告無罪釋放。律政司遂於翌年制訂十七項協助「精神上無行為能力」人士的出庭措施,但至今已二十二年,需要檢討。

    精神上無行為能力與殘疾人權利

    就殘疾人的法律身分,還有其他值得探討的議題。譬如若某人屬「精神上無行為能力」人士,法律已假設他/她不能同意性交,亦不能投票,但他/她是否真的沒有能力?此外,現時若要成為成年「精神上無行為能力」人士的監護人,必須按《精神健康條例》向監護委員會申請,但通常是家屬之間有爭拗才可成功申請。現時有關「精神上無行為能力」的制度,只分「有」或「無」,但無中間,亦無國際倡議的「支援決策模式」(supported decision),即提供支援,解釋情況,以便殘疾人自決。

    閱讀更多

  • 那美好的仗已經打過 張超雄


    「同行」兩字,最近如潮語,先有特首參選人曾俊華,說只要港人與他「同行」,便無懼前路挑戰;林鄭月娥也把「同行」掛在口邊,稱自己與市民「同行」。真正「同行」,其實行得低調,就如工黨立法會議員張超雄。他參選時承諾與大家在「公義路上同行」;這些年來,弱勢社群中總有他的足印。不過,他從政身份之先,其實是學者,在理工大學應用社會科學系當講師;但這條教學路,本週後將畫上句號。「做議員幫到人感覺很好,但這種感覺在香港很難出現,如果要真的發揮到力量,始終都是要教育,要啟發年輕人,才能令整個社會文明提升。」當年由美國回港後,「悟」人子弟二十年的他如是說。張超雄的教學,是身教的示範。昔日林鄭月娥任社署署長時強推一筆過撥款,他在報章發動「筆戰」,結果被列入「黑名單」,往後競投政府合約總是落空。後悔嗎?「你如果是告訴學生一個公義的價值,不是只得個講字,是要實踐;社工行業是建基於這些價值上,如果這些價值守不住,我們就只會變成工具,再沒有能力在社會去把持公義。」

    在立法會內要幫手「拉布」,同時又要趕在本月廿三日六十歲生日前,搬離理大辦公室,張超雄近日頻撲於金鐘與紅磡之間。「坦白說,兼顧兩邊工作是很艱難,立法會本身不是一份工,是一個崗位,一個平台,責任很多,同時兼顧教學,其實相當難,過去不斷有掙扎,一方面覺得議員工作崗位非常重要,我需要盡責,另一方面,我教學那邊亦不可以鬆懈,不希望學生感到我只顧着議會工作,就忽略了教學。」放下教鞭,在未來三年多的會期,他會全心投入議會工作。
    閱讀更多

  • 中史修訂惹政治揣測 吳克儉:毋須過分解讀 議會專業主導 旨在提高學趣


    教育局日前在匯報中史科課程修訂文件上,引述意見指「青年日趨激進的政治行為、不理解『一國兩制』,與他們不熟悉中國歷史有關」,多名議員昨在立法會教育事務委員會批評,質疑當局說法政治化。教育局局長吳克儉回應指,外界毋須過分解讀,否認是利用中史科進行「洗腦教育」。本報記者
    教育局在匯報初中中史修訂進度的討論文件,歸納不同持份者意見,引述有意見指青年激進行為與他們不熟悉中史有關,而需要推行初中中史獨立成科,引起多名泛民議員在教委會會議批評,人民力量陳志全質疑當局把坊間意見當成推行政策的原因,「兩者沒有因果關係,很多參與社會運動的人是因為熟悉中史,知道過去的問題,才會行出來。」

    第二次諮詢更詳細

    工黨張超雄反問教育局「是否讀中史會令年輕人變得不激進?」他認為若推動初中中史獨立成科是「為了控制年輕人的行為或思想」,說法有問題,質疑當局將中史變得政治化,要求刪去文件字句。教育局副秘書長陳嘉琪回應指,有關引述是從不同傳媒收集所得的意見,指諮詢對象包括教師外,亦收集傳媒報道、坊間提交建議書。教育局局長吳克儉亦指,當局只是分享諮詢期間收到的意見,希望外界毋須過分解讀,強調整體而言是需要初中中史獨立必修。

    對於有議員批評當局「騎劫中史」推行「洗腦教育」。吳克儉否認,強調修訂是經課程發展議會專業討論,針對提高學生興趣及課程與時並進,沒有其他目的。民建聯張國鈞指社會具透明度,相信前綫教師不會將中史當作是「洗腦國民教育」。

    教育局建議全港約一成採用中西史合併或綜合課程模式教授中史課程的中學,須制定以中史為主軸,教授「接近獨立中史科」的課程。陳嘉琪解釋,不論學校採用任何方式,均須以「古代史」、「近世史」、「近代史」及「現代史」為課程大綱教授,當局在今年第二次課程諮詢時,為學校提供更詳細的資料。張國鈞要求當局就「中史為主軸」訂明客觀標準,並為落實政策訂立時間表。

    資料來源:
    星島日報 2017-01-10 F01 | 星島教育 中史修訂惹政治揣測 吳克儉:毋須過分解讀 議會專業主導 旨在提高學趣

  • Letter to Hong Kong


    Dear Poi Lam,

    Happy New Year! I can’t believe it’s already 2017! I wish you a healthy, happy and productive 2017! It’s been a long time since I wrote to you. You should understand that there is never a dull moment in Hong Kong. Although my intent is to use this platform at the Legislative Council to improve the livelihood of the most needy, I have been invariably dragged into endless political struggles. The most recent crisis is the government’s legal action to disqualify four pro-democracy legislators. With oppressive measures of such a scale in play, it is very difficult to stay focused. I must try, I know. Because to seek social justice for the poor and vulnerable is my purpose of being in this position.

    For two consecutive days during the Christmas holidays, we went to visit a total of six residential homes for the elderly and the disabled. Our conclusion: that it is almost impossible to lead a life with dignity and autonomy when you loose your self care abilities. That’s a distressing thought because no one can escape from ageing and the possibility of becoming disabled.

    Is living in an institution the final destination for Hong Kong people? Do you want to die in an elderly home? These homes, unfortunately, are largely run by for-profit companies that offer low quality services in rather unpleasant facilities. Hong Kong has the highest institutionalisation rate among all developed places: seven institutional beds per 100 elderly people. Most other countries have less than five. And about 70% of these beds are provided in the market, a low-end market, that is.

    The moment you walk in to an elderly home, the urine and human body odour informs you that residents are not well cleaned. In the living room, typically, a group of residents would be sitting around a television set, seemingly watching a TV program. But if you look closer, most of them are actually starring in the air, without showing any interests or having any interactions with each other. Those sitting in the living room are the more active ones. There are many others who would choose to hide in their little cubicles or simply lie in beds, with quite a few on restraint. The cubicles are formed by low partitions, with usually two residents in each of them. It is not well lid or ventilated. Air conditioners are rarely used in order to save energy costs. Not much really goes on except for the daily routines: eating, sleeping, toileting, or taking medicine. Feeding and bathing would be done in a hurry because staffing is very thin. In fact, the law only requires a staff to resident ratio of 1:40 during the day and 1:60 during the night. Diapers are changed according to schedule, not to needs. There is no requirement for nurses, any therapists or social workers to be on site. And the space required for each resident is only 6.5 meters, including bathrooms, kitchens and all common areas.

    Why do we have such low standards? The government wants us to seek services from the market. And about 80% of the market is financed by CSSA, an income maintenance program that is designed to help the poor to sustain a basic living, not to pay for long term care. With about $8,000 per head, including room and board and everything else, and most importantly a profit margin, this is the kind of quality of care one can expect. If the standards are raised any higher, the operators of these private homes said they will go out of business. The government subsidised homes offer much better care but the queues are long. More than 30 thousands are waiting and about 6,000 of them died each year before they were offered a placement. The average wait is more than 3 years.

    Thus the choice is clear, if you call that a choice, that the final destination for those who cannot afford a foreign domestic worker is a poorly run private elderly home. It is truly ironic when we hear this government slogan of “ageing in place” when about 70 thousands of our elderly have to be institutionalised. What happens to community support services? Can day care and home care services help elderly and persons with disabilities to continue to live in the community? Of course they do. The only problem is insufficiency. The ratio of public resources devoted to community and residential services is 1:6. Government’s money doesn’t follow where its mouth is. Although it should be common sense that everyone wants independent living, our government does not seem to understand.

    With the Chief Executive election coming in March this year, we are hoping that the next government will be willing to look at the issues of long term care more seriously. The past governments have warned us many times about the rapid ageing of the population, only from an economic perspective. It is time for those in power to look at it from a social and human perspective.

    Fernando Cheung
    January 1, 2017

    http://podcasts.rthk.hk/podcast/item_epi.php?pid=162&rthk_cat=CurrentAffairs

  • 預算案諮詢 擁8,428億儲備 議員促陳家強勿學曾俊華


    【本報訊】財政司司長曾俊華辭職考慮參選特首踏入第24天,仍未獲中央批准。財經事務及庫務局局長陳家強昨以署理財政司司長身份出席立法會財經事務委員會,簡介香港經濟情況及就新一份財政預算案諮詢。政府透露目前財政儲備已逾8,000億,議員即發炮轟曾俊華年年「估錯數」、「孤寒」,促陳家強制訂預算案時勿重蹈覆轍。陳強調政府在有需要時絕不會「慳」,但作為處理公共財政的人,保守是應有的立場。
    記者:陳雪玲

    陳家強昨出席立會會議,簡介香港今年面對經濟挑戰,指美國新總統特朗普上任後,全球均關注其針對貿易的政策,而在美元強勢下,香港出口方面的壓力可能再增加,利率預期與資金流向隨時會突然轉變,政府會保持警惕。面對外圍經濟波動,陳指政府過去透過維持內部需求,穩定本港經濟,未來都會繼續考慮以相關措施,應對可能出現的經濟逆轉。

    陳:政府理財應保守

    而財經事務及庫務局常任秘書長謝曼怡在會上指,目前財政儲備約為8,428億元,到了2016至17年度完結時,預計財政儲備大約相等於21個月的政府開支,但尚未支付的基本工程承擔額有3,000億,未來10年無撥備的退休金負債4,500億等。

    工黨張超雄對政府說法不滿,他批評:「我覺得政府又係嗌狼來了。」將逾8,000多億財政儲備「講到好似已經使晒」,是一貫高估開支、低估收入的做法,他指曾俊華出名估錯數,叫陳家強不要重蹈覆轍,希望政府多投放資源用於改善民生;人民力量陳志全則將矛頭指向曾俊華,炮轟曾俊華一直被批守財奴、孤寒,問陳家強制訂新一份預算時,會否有新思維、新打算?

    陳指,今屆政府已在扶貧方面下了不少功夫,而政府資源在支持政策上「唔會慳」,但他同時強調,作為政府內處理財政的人,應該要採取保守立場理財。
    而自由黨易志明關注2018年香港的勞動力開始下降,問政府會否輸入外勞,陳指對於勞動市場,與易志明有相似的憂慮,「始終勞動人口壓力限制經濟增長,令成本上升」,同意社會要研究及探討此議題。另外多名議員問及會否開徵新稅,陳指政府每年都會進行研究,要考慮開徵新稅的成本及回報是否值得。

    資料來源:
    蘋果日報 2017-01-04 A11 | 港聞 預算案諮詢 擁8,428億儲備 議員促陳家強勿學曾俊華

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