Jack Klugman as Quincy
The Washington Post noted the passing of veteran character actor Jack Klugman, with a testament to his leading role in the passage of The Orphan Drug Act of 1982.
Deemed "orphan" diseases as they didn't afflict enough people to interest pharmaceutical involvement, they included Tourette's, muscular dystrophy, cystic fibrosis, spina bifida, and ALS, among others.
Mr. Klugman at the time was the star of "Quincy, M.E.," a popular 1980's medical drama, and had a personal connection to "orphan" disease: His brother Maurice, who was also a producer and writer on "Quincy M.E.", suffered from a rare cancer. Inspired by an article in the LA Times, Maurice penned an episode of "Quincy M.E." about the barriers to treating orphan diseases.
To capitalize on the publicity and build momentum for a bill, Rep. Henry Waxman (D) of California, the subcommittee chairman, invited Jack Klugman to testify before Congress. Nowadays on Capitol Hill, you’re as likely to run into Bono or Ben Affleck as your own representative. But at the time, a bona fide celebrity speaking to Congress was a huge deal. The New York Times ran a front-page story on Klugman and orphan diseases. That led to a bill with three big incentives for drug makers: a lighter regulatory burden for developing new orphan drugs, a seven-year monopoly, and a 90-percent tax credit for the cost of clinical trials. It also established an Office of Rare Diseases at the National Institutes of Health.
The Orphan Drug Act of 1982 sailed through the House. But it ran into trouble in the Senate...In a fit of pique, Jack Klugman hit upon a novel idea. He and his brother wrote a second “Quincy” episode, this one revolving around an orphan drug bill that was being held up by a heartless (fictitious) senator.
The Klugman brother's legacy lives on today. The recently passed Creating HOPE Act for pediatric cancer research relies on the same model as the Orphan Drug Act. And Jack Klugman remains a model to leverage celebrity to advance social good.