時差N小時:孤兒藥法案 The Orphan Drug Act

The Orphan Drug Act is not about children withoutparents. The term “orphan drugs” refers to medicalproducts that would not be adopted by majorpharmaceutical companies because they serve only avery small portion of the population—people withrare diseases.

這個孤兒藥法案與失去父母的孩子無關。孤兒藥品這個術語是指非主要制藥公司生產的藥品。因為那些主要的制藥公司只為小眾——即患有罕見疾病的人群提供服務。

A rare disease is defined by the Orphan Drug Act as one that affects fewer than 200,000people —some only affect 100. Prior to the act, large drug companies had little incentive toresearch and develop new drugs for such patient groups. The people who suffered from thesedisorders were often just out-of-luck.

孤兒藥法將罕見疾病定義為在世界范圍內患病人數小于20萬的疾病，某些罕見疾病的患病人數只有100人。在這條法案形成之前，大型的制藥公司缺少為這樣的病人群體研發(fā)新藥品的動力。那些患病的人們只能認倒霉了。

In 1980, Representative Henry Waxman from California, began to hold hearings in Congress tolook into the problem of those suffering from rare diseases. But his efforts sparked littleinterest, until actor Jack Klugman heard about it, and thought “orphan drugs” would be a goodtopic to highlight on his TV show Quincy.

1980年，來自加利福利亞的議會代表亨利·韋克斯曼開始在國會開庭審理案件，調查這些罕見疾病患者的情況。但他的工作并沒有引起多少人的興趣，直到男演員杰克·克盧格曼聽說此事。他覺得“孤兒藥法”可以作為自己主持的電視節(jié)目“昆西”的主題，肯定能引發(fā)廣泛的關注。

His programs caught the attention of millions of Americans who wanted to help, and were amajor factor in helping to move the bill through Congress. on January 4, 1983, the OrphanDrug Act became law, providing tax credits and marketing protections to pharmaceuticalcompanies developing “orphan drugs”. Since then, this law has helped the lives of millions ofAmericans, whose fate looked bleak because of their affliction with a rare disease.

他的節(jié)目一經上映便引起上百萬熱心美國人的關注，他們在促使國會通過這條法案上起了重要作用。孤兒藥法案于1983年1月4日生效，該法案為采納“孤兒藥法案”的制藥公司提供稅收抵免和營銷保護等優(yōu)惠政策。自此，這條法律挽救了上百萬美國人的生活，使他們的命運不再因為罕見疾病的折磨而繼續(xù)慘淡下去。