Borrison/hk-legicost huggingface dataset:
對於不少有穩定收入的中產家庭和年輕專業人士，每月按揭供款略為提高，他們可能還可應付，但如果沒有"父幹"、沒有"爺幹"，就未必可以付出高成數的首期，他們可能要向財務公司借錢，或買一手樓，因為可以向發展商借部分首期，但這樣會衍生其他問題，政府是否可以幫忙？
Even if monthly mortgage payment is slightly increased many middle - class families and young professionals who have stable income may still be able to manage . However without their fathers and grandfathers deeds they may not be able to afford the high rate of down payment . They may have to take out loans from finance company or buy first - hand property because part of the down payment can be borrowed from developer
主席，政府可能認為現時推出樓市"減辣"措施言之尚早，還不是時候"一刀切"放寬按揭成數限制。
However this may give rise to other problems . Can the Government offer some help? . President the Government may consider it too early to relax the curb measures on the property market and relax the restriction on the loan - to - value ratios for mortgage loans across the board
我最近與"財爺"見面時提到是否可以資助首次置業人士的按揭保費，讓他們可以減少首期的支出。
During a recent meeting with the Financial Secretary I have brought up the suggestion of subsidizing the mortgage insurance premium of first - time home buyers so as to reduce their expenses on down payment
主席，我謹此陳辭。希望各位議員支持我提出的議案。
President with these remarks I hope that Honourable Members will support the motion I have proposed
我會依次請要動議修正案的胡志偉議員、盧偉國議員、莫乃光議員、郭家麒議員、陸頌雄議員、謝偉俊議員及蔣麗芸議員發言，但他們在現階段不可動議修正案。
I will call upon Members who will move the amendments to speak in the following order Mr WU Chi - wai Ir Dr LO Wai - kwok Mr Charles Peter MOK Dr KWOK Ka - ki Mr LUK Chung - hung Mr Paul TSE and Dr CHIANG Lai - wan but they may not move their amendments at this stage
胡志偉議員和莫乃光議員的修正案主要針對香港創新科技和資訊科技業的發展，各項建議措施我是支持的。
The amendments of Mr WU Chi - wai and Mr Charles Peter MOK mainly target at the development of Hong Kongs innovative technology and information technology industries . I support the various measures they have proposed
胡志偉議員刪除了我就把握大灣區機遇提出的部分內容，加入吸引中小企和青年人以香港為基地等字眼，我不會反對，因為我的建議沒有限制本港所有中小企和青年人都要返回內地發展。
Mr WU Chi - wai has deleted my suggestion to seize the opportunities presented by the Guangdong - Hong Kong - Macao Greater Bay Area and added such wordings as attracting SMEs and young people to base in Hong Kong . I have no objection because my proposal is not meant to confine all Hong Kong SMEs and young people to return to the Mainland for development
對於胡議員提出要維持香港在大灣區的龍頭地位，其實香港現時是否仍是大灣區的龍頭？
With regard to Mr WUs suggestion to maintain Hong Kongs leading position in the Greater Bay Area is Hong Kong actually still the leader of the Greater Bay Area?
抑或深圳或廣州已經超越香港？
Has Shenzhen or Guangzhou already surpassed Hong Kong?
又或是否仍要有龍頭，還是應該優勢互補？
Alternatively is a leader still necessary or should we complement one another?
當然，如果香港政府和香港人不再積極把握大灣區的機遇，香港隨時變為龍尾。
Of course if the Hong Kong Government and Hong Kong people no longer proactively seize the opportunities presented by the Greater Bay Area Hong Kong will bring up the rear anytime
另外，我認同胡議員說大灣區有危有機，所以我們更要想辦法將危轉機。
In addition I concur with Mr WU that the Greater Bay Area presents both risks and opportunities and therefore it is more necessary for us to come up with methods to turn risks into opportunities
盧偉國議員提出要爭取修訂CEPA框架條款，以擴大兩地的專業資格和資歷互認，放寬港資建築及工程企業參與內地工程建設的限制，這些都是我早前跟盧議員一起去信國家住房和城鄉建設部提出的訴求，並已獲得內地正面的回應，希望港府可以加緊跟進和落實。
Ir Dr LO Wai - kwok has proposed to seek an amendment to the provisions of the Mainland and Hong Kong Closer Economic Partnership Arrangement CEPA framework so as to expand the coverage of mutual recognition of professional qualifications and credentials between Hong Kong and the Mainland and relax the restriction on Hong Kong construction and engineering enterprises participating in Mainlands engineering and construction . These are the demands jointly put forward by me and Ir Dr LO in a recent letter to the Ministry of Housing and Urban - Rural Development of the Peoples Republic of China . We have received positive response from the Mainland authorities and we hope that the Hong Kong Government will expeditiously follow up and implement the proposals
郭家麒議員的修正案提到不少香港人想移民，其實我亦聽過有部分專業人士這樣說，但他們不是因為香港沒有雙普選而想移民，而是厭倦了無止境的政治爭拗，製造不必要的事端，不斷阻慢香港發展，因而產生厭倦。
Dr KWOK Ka - ki has mentioned in his amendment that quite a number of Hong Kong people intended to emigrate . In fact I have also heard some professionals said that they wanted to emigrate . However the reason for having this idea is not due to the lack of dual universal suffrage in Hong Kong but due to the fact that they are tired of the endless political wrangling and unnecessary troubles created which have slowed down Hong Kongs development
另一個原因當然是香港樓價和租金太貴，但偏偏有部分人反對填海造地，反對發展新界東北。
Another reason is certainly the high property prices and rents in Hong Kong . However some people still oppose reclamation and development of North East New Territories
郭議員又把我有關把握大灣區機遇的所有內容刪除，改為開拓海外市場，其實我的議案並沒有排除開拓海外市場，只是大灣區鄰近本港，語言和文化最為接近，我們沒理由捨易取難，只要求政府開拓海外市場，而不把握內地市場。
In addition Dr KWOK has deleted all the content relating to the seizure of the opportunities presented by the Greater Bay Area in my motion and replaced it with exploring overseas markets . In fact my motion has not excluded the exploration of overseas markets . However given that the Greater Bay Area is close to Hong Kong and we share highly similar languages and cultures we have no reason to adopt a difficult approach rather than an easy one by requesting the Government to explore overseas markets instead of capitalizing on the Mainland market
陸頌雄議員提議向有意到內地發展的青年人提供就業配對服務和工作津貼，這建議我以前也提過。
Mr LUK Chung - hung has proposed to provide job matching service and job allowance to young people who wish to seek development on the Mainland . I have previously made the same suggestion
政府近日宣布向60歲至64歲中高齡綜援人士提供就業支援津貼，以及加強就業配對服務，我認為對青年亦不能忽略。
The Government has recently announced the provision of employment support allowance to middle - aged and elderly Comprehensive Social Security Assistance recipients aged between 60 and 64 in addition to strengthening job placement service . In my view young people should not be neglected as well
至於為合資格的首次置業青年人提供一次性印花稅和按揭保費寬免，後者我已向"財爺"建議，雖然涉及寬免印花稅的款額可能稍多，但仍可以研究，例如把寬減限於某個數額。
Regarding his proposal to grant one - off stamp duty relief and premium waiver of the Mortgage Insurance Programme for young people who meet the qualifying requirement of starter homes I have already put forward his latter proposal to the Financial Secretary . Despite the relatively large amount of stamp duty to be exempted this proposal can still be studied such as putting a cap on the amount of concession
謝偉俊議員建議容許市民利用強積金滾存作首次置業，避免被高收費、低回報的強積金鎖死置業資金。
Mr Paul TSE has proposed to allow the use of accumulated MPF benefits for first home purchase so as to avoid the capital for acquiring properties being locked up by high fees and low returns of MPF
我本人和業界不少人都對強積金制度有很多不滿，而購置物業在某程度上都可以視為一種退休保障。
I myself and many members of the sector are greatly dissatisfied with the MPF system; and the acquisition of property can to a certain extent be regarded as a kind of retirement protection
不過，如果讓市民可以動用強積金買樓，又是否容許他們在退休前賣樓套現呢？
However if members of the public are allowed to use MPF to buy property should they be permitted to sell and encash their property before retirement?
這項條例亦同時將罕見疾病界定為影響少於20萬人；歐洲聯盟則將罕見疾病定義為每2,000人中少於1人患病；至於香港方面，現時對罕見疾病並沒有明確的定義，但是馬逢國議員剛才提及香港大學最新的研究發現，本地罕見疾病患者佔整體人口1.5%，即每67人便有1位患者，但由於是次研究只是以歐洲罕見疾病分類系統當中的467種疾病來統計，就此而言，患者人數應該不止此數。
In Hong Kong there is no specific definition of rare diseases . But Mr MA Fung - kwok just mentioned the latest discovery from the study of the University of Hong Kong that rare disease patients account for 1.5 % of our population or there is one patient in every 67 people . However since this study is only based on 467 kinds of diseases under the European classification system of rare diseases the actual number of patients should exceed that figure
換言之，在我們居住的社區中，很可能已有罕見疾病患者正急待支援。
In other words in the community that we are living there are already rare disease patients urgently waiting for assistance
不少罕見疾病也是由基因突變和遺傳基因缺陷導致，患者在年幼甚至嬰孩時期發病，絕大部分的罕見疾病均嚴重影響患者的健康，甚或致命。
Not a few rare diseases are attributed to genetic mutations or genetic defects and the onset can be in the early childhood or even infancy of patients . A large majority of rare diseases will seriously affect the health and even cost the lives of patients
去年施政報告提到，將會採納基因組醫學督導委員會的建議，在全港進行大型的基因組測序計劃，根據國際經驗，如果使用全基因組測序診斷這些不常見疾病，其實確診率可從現時10%提升至30%至40%。
The Policy Address last year mentioned that the Government would accept the Steering Committee on Genomic Medicines recommendation to conduct a large - scale genome sequencing project in Hong Kong . Based on international experience if whole genome sequencing is used in the diagnosis of these rare diseases the rate of diagnostic accuracy can actually be increased from the present 10 % to between 30 % and 40 %
個別罕見疾病患者在求診過程中，主要問題往往是未能確認病情，需要時常奔走於各大醫院之間，令病人及其家人疲於奔命。
When individual rare disease patients are seeking medical treatment the major difficulty they usually encounter is that the diagnosis cannot be confirmed . They thus need to visit various major hospitals and both patients and their family members will be driven to exhaustion
這項基因組測序計劃應可幫助紓緩他們的心理壓力，亦能了解到遺傳的風險，幫助他們考慮將來的生育計劃。
While this genome sequencing project should be able to help them alleviate their psychological pressure a deeper understanding of genetic risks is also conducive to a better family planning for the future
罕見疾病患者在確診後也需要面對另一個更重大的問題：高昂的醫療費用。
After the diagnosis of rare disease patients is confirmed they need to face another more significant problem exorbitant medical costs
罕見疾病藥物費用的昂貴程度，大家已多次以"天價"一詞來形容，我相信即使中產或略為富裕的家庭也未必負擔得來。
The high level of costs for rare disease drugs has been described many times as astronomical by Members and I believe these drugs are not even affordable by middle - class or slightly well - off families
就像大家經常提及的脊髓肌肉萎縮症為例，服用新藥的首年費用為600萬港元，其後每年300萬港元，我想這是遠超大部分市民可以負擔的水平。
We shall take Spinal Muscular Atrophy SMA often mentioned by Members as an example . The cost of new SMA drugs for the first year is HK6 million and then HK3 million per year for subsequent years . I think this level far exceeds the affordability of most members of the public
我作為關注組的成員，也曾接觸過一些個案，儘管那些藥物只是某種特定的癌病藥物，往往每月也要花費2萬至3萬港元，即每年動輒花費20萬至40萬港元。
As a member of the Concern Group I have come across some cases and learnt that the expenditure on certain specific cancer drugs could be 20,000 to 30,000 each month or 200,000 to 400,000 each year . Being left with no choice all rare disease patients have to bear the high cost of drugs
很無奈地，所有罕見疾病病人也要承擔高昂的藥物費用，雖然現在有將若干藥物列入資助範圍的機制，但我們曾研究有關機制，發覺申請程序複雜、費時，而藥廠往往有其本身不同的考量，導致有些藥物根本沒有引入香港；如果沒有政府的積極介入，相信目前僵化的情況不會有任何改變。
Although there is already a mechanism to include certain drugs under the scope of subsidy as we found in our study on the mechanism the application procedures are complicated and time - consuming . Besides the drug manufacturers usually have their own different considerations and as a result some drugs basically cannot be introduced into Hong Kong . Without positive intervention by the Government I think the present rigidities will not undergo any changes
簡言之，若然沒有適切的資助，患者便會坐以待斃。
In brief without appropriate subsidies the patients will resign themself to death
香港現時的藥物資助計劃涵蓋不多於10項不常見的疾病，我很期望政府盡快制訂一個全面的藥物支援計劃，讓病人及其家人得到穩定的醫療服務。
Since the existing medical assistance programme in Hong Kong covers no more than 10 rare diseases I hope that the Government can formulate a comprehensive medical support programme so that the patients and their family members can obtain steady medical services
代理主席，我參與了關注組的工作後，當中有一位於銀行界經常與我一起工作的同事主動與我聯絡，他的小孩正是罕見疾病患者，他希望得到更多資訊及支援，我便立即將他的小孩轉介至相關的病人組織。
Deputy President after joining the work of the Concern Group one of my colleagues who used to work with me in the banking sector contacted me . Since his child is a rare disease patient he wants to obtain more information and support and I immediately refer the case of his child to the relevant patient group
但這件事令我理解到，目前在政府毫不關注的情況下，有很多家庭仍然很孤單，以及默默承受着所有的壓力。
I learn from this case that owing to the indifference of the Government many families are still very lonely and have to tacitly bear all the pressure
由於現時對罕見疾病的支援近乎空白，所以議員今天提出的要求，包括就着罕見疾病設立定義，建立罕見疾病資料系統，加強醫護培訓，以及引入基因測試的建議等，我也完全同意。
Since at present there is almost no support to rare diseases I fully support the requests from Members today including laying down a definition introducing a rare disease information system stepping up health care training and introducing genetic tests
所以，我支持張超雄議員的原議案，以及李國麟議員和葛珮帆議員的修正案。
Therefore I support the original motion of Dr Fernando CHEUNG and the amendments from Prof Joseph LEE and Dr Elizabeth QUAT
主席，多謝謝偉銓議員今天動議"創造機遇扶助中小型企業及促進青年人向上流動"的議案，讓我們有機會在這裏討論。
President I would like to thank Mr Tony TSE for moving todays motion on Creating opportunities to assist small and medium enterprises and promoting upward mobility of young people so that we have an opportunity to hold a discussion
我亦留意到李慧琼議員會在下星期提出"落實多元教育紓緩學生及家長壓力"的議案，兩項議案有相似的地方，所以我今天會集中就高中及大專階段的教育發言。
I also notice that Ms Starry LEE is going to propose the motion on Implementing diversified education to alleviate the pressure on students and parents next week . Since the two motions have some similarities I will focus my speech on senior secondary and tertiary education today
至於如何促進青年人向上流動，我很希望社會能夠讓青年人發揮潛能，讓他們每個人都可以因應自己的性格和興趣好好發展。
As for how to promote upward mobility of young people I eagerly hope that society can enable young people to give play to their potentials so that they can properly develop according to their characters and interests
"向上流動"一詞所隱含的意思是，社會上的基層市民能夠通過讀書，或是在以往的社會通過生活智慧，甚至最低限度通過勤勤懇懇的工作，為自己的生活創造更好的未來，包括進身高尚階層。
The term upward mobility implies that grass - roots people in society can through education or through wisdom of living in the past society or at least through hard work create a better future for their lives which include moving upward to a higher class
即使不是進身高尚階層，我認為只要所有人皆能夠好好生活，能夠滿足自己，照顧家人及身邊的人，亦已相當不錯。
Even if one fails to move upward to a higher class I consider it good enough so long as everyone leads a good life feels satisfied and is able to look after their families and people around them
這正是我們今天要考慮的問題。
This is precisely what we are going to consider today
不過，青年人在這過程中也不是被動的，他們應該採取主動，包括利用自己的能力和努力，為向上流動而奮鬥。
However in the course of it young people are not passive at all in the process . They should take the initiative to among others give full play to their abilities and make efforts to strive for upward mobility . In the past the Government proposed to address young peoples concerns and their participation in politics and public policy
學校的學習變成了沉悶無比的事情，這對他們向上流動產生了壓抑的作用。
School learning has become so boring that even the desire for upward mobility has been suppressed
因此，我們必須檢視現時的新高中課程和學習模式是否合適。
Therefore we must examine the appropriateness of the existing NSS curriculum and mode of learning
第二個問題是，現時大部分學生都是在學術型的課程中學習，但學生是多樣化的，各有不同的志趣和能力。
The second problem is that while the majority of students are currently studying an academic curriculum they have different interests and abilities
社會的需求也多樣化，有各種不同的行業。
Society also has a myriad of demands and there are different sectors
為甚麼擁有不同性格、不同能力的青年人，卻要通過相同的學習軌道進入一個多元化的社會？
Why should young people with different characters and abilities enter a pluralistic society by going through the same learning track?
立法會曾有代表團到瑞士和德國考察當地的職業教育。
A delegation of the Legislative Council visited Switzerland and Germany to study their vocational education
當然，還要視乎學生有否機會進入高等教育，因為如果他們選擇職業教育的話，便有可能要提供類似西方的應用科技大學。
Of course it also depends on whether students have an opportunity to pursue higher education . If they choose vocational education it would be necessary to provide an applied science and technology university similar to that of the West
是否有必要作出這樣的犧牲？
Is it necessary to make such a sacrifice?
我們的學生是有條件的，但我們也要考慮如何在經濟上幫他們一把，以免他們背負一身學債。
While our students do have the endowments we must consider how to help them financially so that they will not become heavily indebted
我相信青年人是有希望的，只要社會願意幫助他們。
I believe young people are hopeful so long as the community is willing to help them
關於扶持中小企業及促進青年人向上流動的議題，民建聯在過去曾經提出不少意見。
Regarding the subject of assisting small and medium enterprises SMEs and promoting upward mobility of young people the Democratic Alliance for the Betterment and Progress of Hong Kong has previously made a myriad of suggestions
如果純粹說粵港澳大灣區的發展，我覺得其中一個最重點，是特區政府駐內地的辦事處可以提供較多支援。
If we simply talk about the development of the Guangdong - Hong Kong - Macao Greater Bay Area I think a major point is that the SAR Government should provide more support through its offices in the Mainland
所以，如果能夠在當地就業一段時間，累積經驗，然後才創業，相信這做法會比較可取。
Therefore it is better for entrepreneurs to first work as an employee in the Mainland for some time to gain experience before starting a business
主席，我們今天也提到鼓勵青年人創業的配套。
President today we have also talked about the support for youth entrepreneurship
特區政府用公帑支援創業，但因為沒有足夠提醒，令很多青年人最後焦頭爛額，還要負一身債務，這樣未必是好事。
In the absence of sufficient reminder it may not be a good idea for the SAR Government to spend public money on supporting entrepreneurship because many young entrepreneurs may end up failing in their business and become debt - ridden
所以，我在這裏要再三提醒，政府在推行任何措施時，應該提醒相關人士要清楚知悉創業的困難、風險及評估自己應否創業，我覺得需要跟青年人說清楚。
Therefore I must remind the Government again that before any supporting measures are introduced it should first warn aspiring entrepreneurs of the difficulty in and risks of starting a business so that they can make their own assessment . I think it is necessary to give young people a clear understanding
另外，我們提到為中小企或青年人創造更多機會，其實香港有一個很有利的角色。
In respect of creating more opportunities for SMEs or young people Hong Kong is actually in an advantageous position
我只是想借此例子指出，希望香港的企業日後有能力衝出世界，為全世界不同地方，包括"一帶一路"的地區和國家，提供專業服務，因為香港以專業服務見稱。
I give this example to say that I wish to see more Hong Kong enterprises going global in the future to provide renowned professional services in different parts of the world including the Belt and Road regions and countries
其實，我們有很多事情可以做，無論是建築或工程，香港也做得到。
In fact Hong Kong is capable of providing a wide range of services say construction or engineering services
全世界很大部分的船隻在香港註冊，掛上特區的旗幟，而掛上特區的旗幟的船隻便能使用我們衍生的服務，包括仲裁服務，甚至在香港購買海事保險等。
Most of the vessels in the world are registered in Hong Kong flying the SAR flag and can hence use our services including arbitration services or take out marine insurance in Hong Kong
但是，由於我們暫時仍未能提供這些服務，船隻便選擇在倫敦接受這些服務。香港其實絕對有能力可以做這些工作。
However as these services are not available in Hong Kong for the moment these vessels have turned to London for these services although Hong Kong is well capable of providing such services
政府現正準備推出一些措施，例如將會推出稅務優惠，我希望這些工作盡快落實，為香港創造更多國際機遇。
The Government is now preparing to introduce among others tax concessions . I hope these services can soon be provided in Hong Kong so as to create more opportunities for our enterprises to go global
代理主席，我發言支持張超雄議員動議的"立法保障罕見疾病的病人權益"議案。
Deputy President I rise to speak in support of the motion Enacting legislation to protect the rights and interests of rare disease patients which is moved by Dr Fernando CHEUNG
關於罕見疾病，我必須向張超雄議員、香港罕見疾病聯盟的成員及張超雄議員辦事處的同事致謝，其實是致敬才對。因為他們花了很多心力和心血預備這項議案，以及草擬了《罕見疾病條例草案》。
When it comes to the issue of rare diseases I must express my appreciation―or rather my respect―to Dr Fernando CHEUNG members of the Hong Kong Alliance for Rare Diseases and colleagues in Dr Fernando CHEUNGs office as they have put in a great deal of effort to prepare this motion and draft the Rare Diseases Bill
一班有心人的努力同時比照出香港政府多年來在罕見疾病政策上的態度是""和慢。
The hard work done by these conscientious people has contrasted markedly with the casual and sloppy attitude long adopted by the Hong Kong Government in respect of the policies on rare diseases
政府一直宣稱，沒有市民會因為經濟困難而得不到適切的醫療照顧，但現實正好相反，每天都發生有藥無錢醫的悲劇，不是不藥而癒，而是不藥而死。
The Government has always claimed that no one will be denied adequate medical treatment due to lack of means but the reality is just the exact opposite . The tragedy of patients having no money to buy the drugs they need just happens every day . They are not making recoveries without medication but dying from lack of medication
醫院管理局的藥物名冊制度原意為統一公立醫院和診所的藥物政策和用藥，確保病人可獲處方具成本效益，且經過驗證安全和有效的藥物。
The Drug Formulary of the Hospital Authority HA is meant to ensure equitable access by patients to cost - effective drugs of proven safety and efficacy through standardization of drug policy and drug utilization in all public hospitals and clinics
可惜，現實中，醫管局的藥物名冊設有種種行政限制這便是莫乃光議員所說的官僚令系統變成成本凌駕效益。
Unfortunately in reality there is a variety of administrative restrictions under the Drug Formulary of HA―that is bureaucracy as Mr Charles Peter MOK called it―thus making the consideration of costs outweigh that of benefits under the mechanism
香港引進新藥的速度，較英國及法國分別慢3倍和4倍，患有癌症和罕見疾病的病人，不但因為疾病失去生活質素和尊嚴，更有不少因為經濟困難或安全網的荒謬而有藥無錢醫，只能無奈等死。
As regards the introduction of new drugs Hong Kong is three and four times slower than the United Kingdom and France respectively . Patients afflicted with cancers and rare diseases lose their quality of life and dignity because of their diseases; and some of them are even denied medical treatment due to financial difficulties or the absurdity of the safety net . All they can do is to wait for death helplessly
一個真實的例子是池燕蘭女士。
One real - life example is Ms CHI Yin - lan
如果大家不善忘的話，在2017年4月11日，一名患有結節性硬化症的朋友到立法會2樓的會議廳發言，分享了患病的痛苦及無法負擔藥費的辛酸，因為據她所說，她每月要負擔2萬元藥費。
If Members are not forgetful they should remember that on 11 April 2017 a patient with tuberous sclerosis complex came to the conference room on the second floor of the Legislative Council Complex to give a speech sharing with Members the agony of the disease and the misery of being unable to afford the drugs . According to her the drug expenses she needed to bear amounted to 20,000 per month
我仍然記得池女士的控訴，她說："因為體內的腫瘤已爆過一次，我現在真的很擔心，不知體內的腫瘤何時再爆。
I can still recall the grievances she expressed . She said As the tumours in my body burst once before I am really worried about when the tumours will burst again
我現在才30多歲，便要被這個病折磨至死，我不甘心。
I am only 30 - odd years old but I am going to be tortured to death by this disease . I cannot accept it
求你們幫我一下。
Please give me some help
"言猶在耳。
This is what she said in the conference room on the second floor and the words are still fresh in my memory
目前，香港對不少不常見疾病的患者所提供的支援相當有限，這個情況存在於一個現代化的大城市，的確令人難以接受。
At present there is relatively limited support available to patients suffering from a number of uncommon diseases in Hong Kong . It is definitely unacceptable for such a situation to exist in a modernized city
香港富裕得可以動輒斥資百億元甚至千億元在大規模的基建上，卻眼睜睜看着罕見病患者因為沒有錢而得不到醫治，枉送生命。
Hong Kong is so affluent that it has no difficulty allocating tens to even hundreds of billion dollars to large - scale infrastructural works . However it just looks on unmoved as rare disease patients lose their lives because they have no money for medical treatment
這不是"無語問蒼天"又是甚麼呢？
Is this not an unspeakable agony?
如果設身處地一想，對罕有病患者而言，生命正處於倒數階段，香港政府又不是沒有能力負擔他們的藥費，但是，他們最終卻因為解決不了錢的問題而靜待死亡降臨，那香港再繁榮又如何？
If we put ourselves in their place we will see that rare disease patients are counting down their remaining days . While it is not beyond the Governments capacity to shoulder the drug expenses of these patients they have to wait for death ultimately because they cannot resolve the money issue . From this perspective does growing prosperity mean anything to Hong Kong at all?
去年，香港大學的研究發現，本港每67人便有1人是罕見病患者，佔整體人口的1.5%。
Last year a study conducted by the Hong Kong University found that one in every 67 people in Hong Kong suffers from a rare disease accounting for 1.5 % of the total population
罕見疾病的藥費高昂，每年可達數百萬元，不少病人因為無法負擔藥費而延誤治療。
Given their steep prices the drugs for rare diseases can cost patients as much as several million dollars a year . Many patients have delayed their medical treatments as they are unable to afford the drugs
但是，目前政府針對罕見病患者的支援政策很少，政府甚至未有為罕見疾病作出清晰的定義。
Notwithstanding the policies that the Government put in place to support rare disease patients are minimal and the Government has not even laid down a clear definition of rare diseases
政府應該為保障病人的基本醫療權利展示更大的決心今天多位議員都提到這個point因此，我絕對支持張超雄議員的建議：改善審批罕見疾病藥物的程序，並增設資助計劃及資料系統。
The Government ought to demonstrate greater determination to protect patients right to essential medical treatment―a point raised by many Members today―and for this reason I fully support Dr Fernando CHEUNGs proposal to improve the appraisal procedure for rare disease drugs and introduce a subsidy scheme as well as an information system