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Orphan Drugs Have Become Big Business

Posting Date: 11/28/2005

Orphan:

Noun: 1a. A child whose parents are dead. b. A child who has been deprived of parental care and has not been adopted...4. An orphan technology or product.

Adjective: 1. Deprived of parents?5. Affecting so few people that the development of treatment is neglected or abandoned for being unprofitable: an orphan disease.

This definition is from the American Heritage Dictionary of the English Language. For a more vivid description of an orphan?s experience, all you have to do is open Charles Dickens? book, Oliver Twist. The children in the story are abused and neglected and survive by scrounging.

Like orphan children, orphan diseases are often neglected. People who suffer from rare conditions are frequently left to their own devices. Without treatment, they could expect their lives to be nasty, brutish and short.

All that was supposed to change in 1983. That?s when Congress passed the ?Orphan Drug Act.? It offered incentives to drug companies so they would develop treatments for uncommon diseases.

Because pharmaceutical research and development is so costly, Congress recognized that most companies wouldn?t bother unless they didn?t lose too much money in the process. There was no expectation that orphan drugs would ever turn a significant profit. The whole enterprise was supposed to be altruistic.

That?s why drug companies were given a 50 percent tax credit on research and development for these drugs, grants to help them test drugs in patients and extended patent-like protection.

Twenty years later, though, the charitable impulse has been subverted. Orphan drugs are now among the most expensive in the pharmacy.

Rituxan, a medication used to treat non-Hodgkin?s lymphoma, saves lives from this cancer, but costs around $12,500 annually. The life-saving leukemia drug Gleevec averages $37,000 a year.




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