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Rare diseases group celebrates Quincy ME star’s role in Orphan Drug Act

By Gareth Macdonald , 03-Jan-2013
Last updated on 03-Jan-2013 at 12:41 GMT

An advocacy group says actor Jack Klugman's support was key for US law that encouraged pharmaceutical firms to make drugs for rare diseases over the past 30 years.

Klugman who died last week  will be best remembered as doctor-cum-sleuth Quincy ME whose pre-CSI adventures in ‘the world of forensic medicine’ entertained viewers worldwide for more than a decade in the TV drama of the same name.

But Klugman’s portrayal of “R” Quincy – his first name was never mentioned – went beyond entertainment and in the early 1980s actually had an impact on Government policy toward the development of medicines according to the National Organisation for Rare Disorders (NORD).

Jack Klugman touched the lives of millions of Americans through his support for what ultimately became the Orphan Drug Act of 1983. Klugman focused a spotlight on the need for incentives to encourage the development of medical therapies for small patient populations. 

He did this in partnership with patients and patient advocates who had been unable to gain national attention until he lent his support.”

In a 1981 episode of Quincy ME entitled “Seldom silent, never heard” the show’s eponymous hero criticized drugmakers’ lack of interest in developing medicines for rare diseases, suggesting that taking R&D decisions based on the size of future profits is unethical.

Offstage Klugman was more measured yet equally forthright about the need for rare disease treatments when he appeared before the US House of Representative’s Subcommittee on Health and Environment a few months later in March, 1981.

According to a report in the New York Times Klugman told the Subcommittee that: “In this whole scenario, there are no villains, no bad guys, but there are no heroes either. What's the dividing line? How many cries before they get heard? We are not talking about orphan drugs, we're talking about orphan people.''

Klugman’s contribution is widely regarded as being key to convincing Senate Finance Committee chairman Orrin Hatch to drop his opposition to proposed tax credits designed to encourage the development of orphan drugs.

The Orphan Drug Act was signed into law in 1983. 

Nord said: “Mr. Klugman's death comes just one week before the start of the 30th anniversary year of the Orphan Drug Act and we will always remember him as one of the best friends the rare disease patient community has ever had.”

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