寒森歲月

在人類的歷史上，從來沒有一種疾病像麻風病一樣，代表那麼深重的罪，人們提到麻風避之唯恐不及，由於對這種疾病的特有憎惡，害怕傳染，加上認為這是來自上帝的詛咒，因此麻風病人除了疾病纏身，也必須承擔來自社會的歧視及道德的審判，可以說是社會縫隙中的邊緣人。

麻風病即所謂的癩病(Leprosy)，有可能緣自印度，它有一個正式的學名叫漢森症(Hansen's Disease)，西元一八七四年，挪威醫師漢森(Armauer Hansen)第一次發現麻風的傳染媒介─麻風桿菌，因而取名紀念之，這種桿菌極類似結核桿菌，麻風桿菌主要侵襲人類的皮膚和外圍末梢神經，但對初期患者，首先受害的卻是皮膚部份，很明顯出現紅色或白色斑紋，以及大小結節，如果不能及時就醫，瞎眼、麻痺和組織壞死將是麻風病人不可避免之悲慘結局。

麻風病在宗教上有其特別的含意，基於麻風病是「罪」的終極象徵，1179年天主教會最高會議的決議重申麻風病人必須被徹底隔離，不能上教堂，同時有儀式象徵他們在人間的「死亡」；在中世紀時，負責檢視麻風病人的人士是神父而不是醫師，一旦被宣佈為麻風，病人將永生不得進入公共場所，不能在狹隘的路上行走，甚至在法國，病人必須穿上銹有大紅字「L」的袍子，掛上鈴鐺，警告任何走近他的人，他唯一被允許的東西是一個配有長桿的木頭，方便乞食用。

西方對於麻風隔離的做法始於十二世紀末。十三世紀麻風大流行時，全歐洲收容所高達一萬九千座以上，直到十六世紀初，麻風病在西方漸消失，許多隔離院荒廢，麻風所造成的社會恐懼逐漸被社會淡忘。到十九世紀初，西方列強主義在亞、非等地積極建立殖民政權，看到這些落後地區對麻風病的漠視，似乎勾起他們對歐洲中古黑暗時期的恐怖記憶，於是透由傳教士、醫師等，將隔離麻風病患的做法引進世界各地。

西元一八六五年之前，太平洋地區的夏威夷曾發生麻風病大流行，甚至波及到王宮貴族，一般人因為不了解麻風病，產生大恐慌，為對抗這個傳染途徑不明的疾病，夏威夷迅速頒布防止麻風擴散法案，強制拘提麻風病「嫌犯」，把他們流放到莫洛卡島上(Molokai)上的卡羅巴巴(Kalaupapa)集中隔離區終其一生。一百年後這項法案取消時，已有八千多人被送往該島。

莫洛卡島之所以舉世聞名，除了是令人聞風喪膽的麻風島外，另外就是在島上獻身服務的天主教神父德米安(Father Joseph Damien)，因朝夕與病人相處，不幸感染麻風，大動國際視聽。

漢森醫師的發現和德米安神父的際遇，再加上「熱帶病」這門新學問隨著殖民主義的擴張，顛覆了當時歐洲主流社會認為麻風乃遺傳疾病的說法，證實了麻風的傳染性。尤其西元一八八九年，德米安神父在夏威夷過世後，國際對麻風傳染力的恐懼急遽升高，一八九七年，第一屆國際麻風大會(First International Congress of Leprosy)在柏林舉行，大會正式宣布：「麻風是無可救治的傳染病」，同時強力建議全世界以隔離的方式進行麻風防疫的工作。

在中國，麻風素有「天刑病」之稱，對於麻風疫情也自有其地域的防疫傳統，像自明朝中期十六世紀開始，福建各地政府已紛紛建立收容麻風的機構，像「癩子營」或「養濟院」等，並已限制病人的行動；入清之後，麻風院極受政府的重視，並更有系統，除了政府及民間的經費資助外，同時對麻風病患的隔離也更加嚴格。

十九世紀，傳教士在中國各地積極興建麻風隔離院，同時也出現一批中國精英極力鼓吹麻風隔離，他們對麻風的恐懼雖然跟西方人一樣，然而其中最大的差別是，他們深感麻風病象徵著民族的恥辱、國家的落後，特別在南京政府建立後，這些所謂的中國積極分子，把建設麻風療養院當成民族主義訴求的重點，並已超越西方人的剽悍作風來辦理隔離。為此，近代中國的麻風療養院，以外籍宣教士為主的，普遍存在教會濃厚的色彩，用宗教感化患者，治療往往只是一種手段；但政府主辦的療養機構則是運用各種嚴厲手段強制隔離病人來達消滅麻風的目標。曾出現暴力行為，像集體屠殺或活埋麻風病人等駭人情事也時有聽聞。

台灣在將近三百年前已發現麻風病，同時也設有官方養濟院展開救濟行動。傳教士進入台灣的時間約在一八六○年左右，藉由醫學治病宣教，很快在北中南建立淡水馬偕醫院、彰化基督教醫院和台南新樓醫院。當傳教士極力在中國興建麻風療養院的同時，台灣卻面臨另一種命運─西元一八九五年，日本佔領台灣，隨即廢棄各地救濟院，台灣的麻風病人因此被趕出院，流竄全省，四處乞討，光景十分淒涼。

由於癩病在台灣，並不像鼠疫或瘧疾等重大傳染病一樣深獲日本政府重視，在這種情況下，麻風防治的重任只好落在傳教士和教會醫院的身上，因為他們來自神的國度，既不屬於台灣，也不屬於日本殖民帝國，身分的曖昧，使他們得以在日人的庇護與監控下從事醫療，彌補日人不願處理高度污名化的癩病防治這個棘手問題。

也拜西方傳教醫師的努力與催生，日本政府終於在一九三○年建立第一所官方癩病療養院─樂生院；第一所教會療養院─樂山園也在一九三西年成立，至此，台灣終於加入全球麻風防治行列，一起為對抗麻風病而努力。

麻風病到底有沒有藥醫？在殺瘋劑Dapsone被發現可以治療癩病之前，大風子油被認為治療最有效。大風子油為何會被用來治療癩病，據說是因為有一位印度王子因患癩病退隱山林與世隔絕，以野草果實維生，最後因常食大風子樹的果實而病癒。一九○○年大風子油療法傳入西方，一九三八年第四屆國際麻風醫學會在開羅舉行時，還宣稱大風子油是治療癩病的特效藥。值得注意的是大風子油不僅在西方普遍使用，中國早在元朝時就已普遍使用大風子油治療麻風病人。

對麻風病人而言，直接食用大風子油會令人作嘔噁心，但是改以肌肉注射，又會引起相當大的痛苦，因此病人治療意願不高。有一說，大風子油療法的意義不在於治療，而是促使早期患者願意主動治療與觀察，幫助人們更了解這個疾病。

現行治療癩病的藥物以滴滴實(Dapsone)、立復黴素(Rifampicin)、癩必寧(Clofazimine)三種為主，採用MDT(Multiple drug Therapy)三種混合使用稱為聯合藥物治療的方式，避免病桿菌產生抗藥性。這三種藥物以Dapsone發現最早，Rifampiein不僅能完全抑制癩病桿菌的生長，甚至能殺死麻風桿菌，Clofazimine則具有消炎的效果。

Dapsone發現於一九○八年，本來是用來治療肺結核，但因療效不佳而停用，這種硫化藥物對人類來說是一種致命的毒藥。Dapsone是英國商品名，它的德國商品名叫Diammino Diphenyl Sulphone簡稱DDS（滴滴實）。

DDS搖身一變為麻風病特效藥的過程其實蠻意外的，原來美國有一家公司以Dapsone為母體發明了一種新藥叫普洛明(Promin)，這種新藥可以直接用於人體，一九四一年美國醫師費格特(Dr. Fager)在全美癩病治療中心的卡維爾麻風病院試治癩病，觀察兩年後，公開發表測試結果，證明普洛明的確能有效抑制麻風桿菌的生長。

有了鼓勵，一九四四年，有人率先用DDS治療癩病，發現此藥療效極好，兩年後，南印度基督醫療學院院長柯克郎(Cochrane)等人陸續在印度及奈及利亞試用每日口服一百毫克DDS，結果大獲成功，加上價格十分便宜，DDS遂成為全世界用來治療麻風病患首選藥物，更重要的是，DDS的成功也大大改寫了全世界麻風病人的命運。

DDS固然成為麻風病人的救命仙丹，但因本身毒性較強，因此用量必須依照個人體質、健康情形、營養情況、性別、年齡與體重而予以斟酌，但使用者仍常發生藥物過敏或無法忍受的情況，加上一九六四年，首位具有抗藥性的病人出現，遂使尋求新藥物變得迫切。立復黴素與癩必寧便是相繼出現的癩病治療劑，兩者都是抗生素，不僅能抑制麻風桿菌的成長，更能殺死麻風桿菌，最大的缺點是太貴了，病人無法長期使用。

DDS的出現，為病人帶來黑暗中的曙光。一九五九年，在日內瓦召開的世界衛生組織醫學會宣稱，應該廢除全世界所有的麻風療養院和麻風隔離村，促使全世界一千五百萬癩病患者居家治療，無須被社會終身隔離，而立復黴素、癩必寧的出現，更帶給麻風病人真正的希望。一九八○年，世界衛生組織麻風控制規劃醫療組，制定一個聯合化療方式(M.D.T)，推薦給各國使用，台灣地區也從一九八一年起，在全台推廣，這是全世界目前最好的癩病治療方法。

儘管醫療科技的進步，證明麻風病是所有慢性傳染病中最不容易傳染的疾病，而且只有極小比例的人容易被感染，只要早期發現即可治癒，但由於傳染途徑尚未完全解密，因此儘管近二十年來，麻風病已有聯合化療如此有效的控制，一般人提起麻風病人卻仍抱持極深的恐懼與排斥。

總之，麻風的污名使得患者歷盡滄桑，他們被合法孤立，被剝奪人權，被迫與家人生離死別，幾千年來，沒有人可以想像麻風病人在另一個世界(Outside the World)如何與病魔共處。可以確定的是，在他們悠悠的寒森歲月裡，將終其一生背負著疾病的烙印。誠如一位麻風病人寫下內心最深沉的痛苦，他說：「我被稱為人類，我勉強算得上有雙腳，有雙手，但我被視為齷齪可恥的垃圾，在不光明磊落的情況下，被偷偷洗掉生命之牌。」

A Brief History of Hansen's Disease (Leprosy)

Never in human history has an illness come to represent such a curse as leprosy. People shrink at the mention of the word. Given the typical antipathy, fear of being contaminated, and the notion that it is a curse from God ( Old Testament ), leprosy victims not only have to contend with the pain of the disease, but also the prejudice and moral judgment of society. As such they can be considered as a marginalized group of the society.

Leprosy, whose formal scientific name is "Hansen's disease," is believed to have possibly originated in India. The name Hansen's disease comes from Norwegian doctor Armauer Hansen, in 1874 , he is the first to discover the rod-like mycobacterium leprae, the agent that causes the disease. This microorganism is similar to the tuberculosis pathogen.

Leprosy essentially attacks human skin and external nerve endings, but the first to suffer in leprosy patients is the skin, which develops noticeable red or white blotches and large or small nodes. If not diagnosed and treated on time, blindness, paralysis, and tissue death are the inevitably tragic results.

Leprosy has a unique religious significance. As the ultimate symbol of "sin," the Third Lateran Council decreed in 1179 that a leprosy patient should be identified and separated. A mass was held for the leprosy patients, who was segregated and became 'dead among the living.' In the Middle Ages, priests, not physicians, were charged with looking after leprosy patient. Any individual deemed to have leprosy was banned for life from public places, could not walk on narrow streets, and in France leprosy patients were made to wear a robe embroidered with a large red letter "L" and a bell to warn anyone in their vicinity. The only special dispensation allowed for leprosy patient was a wooden pole for use in begging.

Draconian measures

Segregation of leprosy patients began in the West in the twelfth and thirteenth centuries, when Europe reached a peak of over 19,000 shelters. Only when leprosy receded in the West in the early sixteenth century and many of the segregation facilities shut down did society's fear of the disease lessen somewhat. In the early nineteenth century, Western colonial powers witnessing the disregard for leprosy in the backward regions of Asia and Africa once again recalled the fear of the disease that swept medieval Europe. Consequently, they took leprosy segregation methods to areas around the world through their missionaries and physicians abroad.

A major leprosy breakout hit mid-nineteenth century in Hawaii, affecting even the royal family. Given the lack of general understanding and great fear towards this disease, and not knowing how to fight its spread, Hawaii quickly issued a leprosy containment law, which mandated the forced arrest and transport of leprosy "suspects" to Kalaupapa on Molokai Island, where they would spend the duration of their time on earth. By the time the law was taken off the books a century later, over eight thousand people had been sent to Molokai.

Apart from its reputation as a frightening "leper island," Molokai achieved worldwide fame for the efforts of Catholic priest Father Damien de Vesteur , who labored for the rest of his life on behalf of leprosy patients on the island. Spending all his time surrounded by leprosy patients, Fr. Damien himself contracted leprosy, stirring the attention of international community.

With the expansion of colonialism, the knowledge gleaned from Dr. Hansen's discovery, the plight of Father Damien, and the spread of "tropical diseases" overturned the notion in mainstream European society that leprosy was hereditary and alerted the world to its contagiousness. The death of Father Damien from leprosy in 1889 particularly raised fears around the world as to the contagious power of the disease. The First International Congress of Leprosy, held in Berlin in 1897, proclaimed: "Leprosy is an incurable contagious disease," and strongly advised that leprosy be handled around the world with strict segregation methods.

China, where leprosy was long known as "heaven's punishment," had led local traditions to approach the disease, such as the establishment of leprosy shelters by local government authorities in Fujian from the mid-Ming dynasty in the sixteenth century, as well as other "leper camps" and sanatoriums that restricted patients' movements. The subsequent Qing dynasty took an even more sober, systematic approach toward leprosy sanatoriums, administering public and private funding and adopting even stricter segregation measures.

Western missionaries in China in the nineteenth century actively established leprosy quarantine facilities. At the same time, a group of Chinese elites aggressively lobbied for the segregation of leprosy patients. Although they shared the same fears as Westerners toward the affliction, their greatest motivation was their belief that leprosy was a stain on the Chinese people and a reflection of the country's backwardness. Particularly following the establishment of the Nanking government, these Chinese activists made the establishment of leprosy sanatoriums a major focal point of their nationalistic campaign, taking the segregation of leprosy patients to even more severe lengths than the Westerners. Up to that time, leprosy sanatoriums in China had been largely established by foreign missionaries and bore the heavy influence of the Church, using medical care as a means to the ultimate end of healing patients. However, government-run sanatoriums used various severe segregation methods in the attempt to eradicate the disease, even resorting in some cases to such horrifying violent methods as mass slaughter or live burial.

Leprosy was discovered and official relief hospitals established in Taiwan nearly 300 years ago. Protestant Missionaries arrived in Taiwan from the West around 1860, quickly implementing missionary work through medical treatment and establishing such facilities as Tamsui's Mackay Hospital, Changhua's Presbyterian Hospital and Tainan's Hsinlou Hospital. As missionaries actively set up leprosy treatment facilities across the strait in China, Taiwan faced a different fate, when in 1895, the Japanese took over the administration. The Japanese government disbanded the existing leprosy treatment facilities, sending the patients out to fend for themselves on the streets to beg.

Leprosy in Taiwan did not receive the same attention from the Japanese government as bubonic plague or malaria. Henceforth, leprosy care was left to missionaries and church-affiliated hospitals. Their status as foreign workers of God, and not as subjects of the Japanese colonial empire, enabled them to dispense medical care under the protection and scrutiny of the Japanese, compensating for the unwillingness of the Japanese to touch the issue of much-maligned leprosy treatment.

Western Protestant missionaries also served as catalysts in the establishment of Taiwan's first government-run leprosy sanatorium in 1930, Lo-Sheng Sanatorium. The first Protestant church-run sanatorium, Happy Mountain Garden, was established in 1934, thus taking Taiwan into the worldwide ranks in the fight against leprosy.

Medical breakthroughs

Can leprosy be treated with medicine? Prior to the discovery that the synthetic drug Dapsone could treat leprosy, chaulmoogra oil was considered most effective. It is said that chaulmoogra oil was used to treat leprosy because an Indian prince who contracted the disease retreated from society to live in the forest, where he lived off wild grass and fruits, ultimately curing his leprosy with the nut of the Chaulmoogra tree. After reaching the West in 1900, this treatment method was declared a potent medicine against leprosy at the 1938 International Congress of Leprosy in Cairo. It is notable that not only was Chaulmoogra oil common in the West , it had also been widely used to treat leprosy patients in China during the Yuan dynasty (1271-1368).

As direct ingestion of chaulmoogra nut oil causes a nauseas reaction, subdermal injection was used instead. However, injections of the oil are quite painful, reducing patient willingness to undergo treatment. There are also those who say that chaulmoogra oil was less significant as a treatment than as a way to prompt patients to seek treatment and enable observation in the disease's early stages, thus improving our understanding of leprosy.

Current leprosy treatment protocol employs multiple drug therapy (MDT) combining Dapsone, Rifampicin, and Clofazimine to prevent resistance to a single drug by the bacillus. Dapsone was the first among the drugs to be discovered, while Rifampicin not only slows but can kill Mycobacterium leprae, while Clofazimine helps reduce inflammation.

Dapsone, first synthesized in 1908, was originally designed for the treatment of tuberculosis, but discontinued as such due to poor efficacy. A potentially deadly sulphone, Dapsone is its British trademark name, the scientific name being Diammino Diphenyl Sulphone (commonly abbreviated as DDS).

DDS took on new life as a leprosy medicine by accident, when American researchers discovered promin, a derivative of Dapsone that could be used intravenously. In 1941, Guy Faget at the National Leprosarium in Carville, L.A. U.S.A., conducted clinical trials on patients, publishing his findings after two years proving that Promin was indeed effective in impeding the growth of the leprosy bacteria.

Encouraged, researchers tried treating leprosy with DDS, achieving excellent results . Two years later, Robert Cochrane's experiments with oral dosage of 100 mg. of DDS per day on patients in Bangladesh and Nigeria. The success of the program and the inexpensive cost of DDS made it the first choice treatment. More important, it helped change the fates of the world's leprosy victims.

No miracle drug, DDS dosage must be carefully administered in accordance to individual constitution, health, nutrition, sex, age, and weight due to its toxicity. Still, patients are often found to be allergic or unable to tolerate DDS. Moreover, the first patient resistant to DDS treatment was discovered in 1964, heightening the urgency of the search for a new medication. Rifampicin and Clofazimine, both antibiotics, not only suppress the growth of the bacillus, but can even kill it. The only drawback is the prohibitive cost of the drugs, which prevents long-term use.

The emergence of DDS sent a ray of hope into the darkness. The 1959 medical conference of the World Health Organization announced its recommendation that all leprosy hospitals and leper colonies around the world be abolished, freeing 1500 patients worldwide from undergoing home treatment in lifelong isolation from society. The subsequent appearance of Rifampicin and Clofazimine gave leprosy patients real hope, as the World Health Organization's Guide to Leprosy Control formulated and recommended the MDT treatment for use around the world. Adopted and practiced in Taiwan since 1981, this is currently the world's best treatment protocol for leprosy.

Advances in medical science have conclusively demonstrated that leprosy is the most difficult contagious chronic disease to contract, only a tiny proportion of the population is susceptible to infection, and that early detection can enable complete cure. However, as the pathogens of infection have not been completely unlocked, despite effective control of the disease over the past 20 years using MDT, most people still shrink with fear and revulsion at the mention of leprosy.

In general, Leprosy's vilification has caused victims to endure legal segregation, the stripping of their human rights, and lifelong isolation away from their families. For millennia, the torment of leprosy victims forced to live "outside the world" with this disease defies the imagination. Yet to that torment they must carry the indignant brand of the disease in society. As one leprosy patient lamented: "I'm called a human being, and forcefully, can count with my  hands and feet. But I'm treated like vile refuse, and my living identiy is removed surreptitiously away from light."