时差N小时:孤儿药法案 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.

这个孤儿药法案与失去父母的孩子无关。孤儿药品这个术语是指非主要制药公司生产的药品。因为那些主要的制药公司只为小众——即患有罕见疾病的人群提供服务。

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.

孤儿药法将罕见疾病定义为在世界范围内患病人数小于20万的疾病，某些罕见疾病的患病人数只有100人。在这条法案形成之前，大型的制药公司缺少为这样的病人群体研发新药品的动力。那些患病的人们只能认倒霉了。

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，来自加利福利亚的议会代表亨利·韦克斯曼开始在国会开庭审理案件，调查这些罕见疾病患者的情况。但他的工作并没有引起多少人的兴趣，直到男演员杰克·克卢格曼听说此事。他觉得“孤儿药法”可以作为自己主持的电视节目“昆西”的主题，肯定能引发广泛的关注。

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.

他的节目一经上映便引起上百万热心美国人的关注，他们在促使国会通过这条法案上起了重要作用。孤儿药法案于1983年1月4日生效，该法案为采纳“孤儿药法案”的制药公司提供税收抵免和营销保护等优惠政策。自此，这条法律挽救了上百万美国人的生活，使他们的命运不再因为罕见疾病的折磨而继续惨淡下去。