Word: orphan
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Dates: during 1980-1989
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...that inspired them to go on living. For a new biography of Kolbe, A Man for Others (Harper & Row; $12.95), California Journalist Patricia Treece interviewed Sigmund Gorson, a TV personality in Wilmington, Del., and the only Jewish survivor of Auschwitz who knew Kolbe. Gorson, then a 13-year-old orphan, recalls: "He used to wipe away my tears. Because of the death of my parents, I had been asking, 'Where is God?' and had lost faith. Kolbe gave me that faith back. He was like an angel." -By Richard N. Ostling. Reported by Barry Kalb/Rome
...rare there is no profit in making drugs to treat them. A pharmaceutical company's investment, up to $80 million for a new drug, cannot be recouped if only 100,000 people or fewer need the product. Such diseases and their drug treatments therefore are said to be "orphaned." Orphan diseases include cystic fibrosis, a deadly hereditary disorder that affects 40,000 Americans; Tourette's syndrome, a neurological abnormality characterized by tics and involuntary outbursts of swearing (100,000 Americans); Prader-Willi syndrome, a children's ailment that causes huge weight gains and often kills its victims...
...recent years, the plight of orphan-disease victims has begun to capture national attention and stir concern. Beginning in 1980, several dramatic hearings of the House Subcommittee on Health and the Environment raised awareness of the issue with testimony from Marjorie Guthrie, the singer's widow, Actor Jack Klugman, whose TV show Quincy devoted an episode to Tourette's syndrome, and researchers like Van Woert. A study by the committee identified 134 drugs to treat orphan diseases, but found that only 58 were on the market or even under investigation by drug manufacturers. Furthermore, more than two-thirds...
...last year proposed legislation that would provide financial incentives to companies undertaking or phan-drug research. Last week such bills were overwhelmingly approved by the House and the Senate. Under the provisions of the House bill, drug companies were to receive a 90% tax credit for expenses incurred in orphan-drug development, but the Senate struck this credit and substituted an appropriation of $9 million. The House measure also called for a seven-year period of exclusive marketing rights for unpatentable orphan products. It provided that in the absence of any alternative treatment, orphan drugs would be made available...
...everyone is pleased with the legislation. In fact, the Administration issued a position paper last week opposing the measure. The statutory creation of an interagency orphan-products board, the Administration said, was superfluous be cause an equivalent panel existed within HHS. Waxman had already altered the bill to accommodate earlier Administration objections. Both the FDA and the Pharmaceutical Manufacturers Association had opposed a provision in the original bill that would have permitted approval of orphan drugs after one successful human clinical trial. With that provision dropped and other changes made, the P.M.A. now supports the bill, though it continues...