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Recognizing a Rare Disease Awareness Pioneer

Posted by | 3:00pm on Wednesday, January 2, 2013
Jack Klugman, actor and rare disease advocate

Jack Klugman touched the lives of millions of Americans through his support for what ultimately became the Orphan Drug Act 

It’s not often that we posthumously learn something new and meaningful about a Hollywood star, but such was the case for me this week with the passing of actor Jack Klugman at the age of 90. Best known for his portrayal of Oscar Madison, the messy, unpretentious, cigar smoking, sportswriter roommate to Felix Ungar in the venerable 1970s sitcom The Odd Couple, Klugman was far less known for his contribution to rare disease awareness and advocacy.

Klugman’s foray into this important advocacy began in the 1980s when, using his Quincy, M.E. TV show as a bully pulpit, he and his brother Maurice Klugman, a Hollywood writer and producer, wrote a 1981 episode about the plight of a young man with Tourette syndrome. This show brought much needed attention to orphan drugs (medications that treat rare diseases) and rare conditions. Historically, drug companies ignored development of such drugs because they were unprofitable. Many diseases did not affect enough people to entice pharmaceutical companies to develop treatments.

Klugman was later invited to The U.S. House of Representatives Subcommittee on Health and Environment to testify on the issue. This appearance and his continued support to right a perceived injustice paved the way for the introduction of the Orphan Drug Act of 1983. The Act made it financially worthwhile for drug companies to pursue treatments for diseases like muscular dystrophy, rare cancers and little known genetic diseases.

When the Act stalled in Congress because of the removal of a tax credit, one of the largest incentives to drug makers, Klugman used his celebrity to address the legislative issue head on in yet another episode of Quincy, M.E. Thanks to Klugman, the Waxman-Hatch Orphan Drug Act became law in 1983.

The National Organization for Rare Disorders (NORD) issued this statement:

    Jack Klugman touched the lives of millions of Americans through his support for what ultimately became the Orphan Drug Act. By portraying on his Quincy, M.E. television show the plight of people with rare diseases with no treatment, Mr. Klugman focused a spotlight on the need for incentives to encourage the development of 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 1993, Mr. Klugman told a Chicago Tribune interviewer that his interest in the Quincy TV show stemmed partly from the fact that it allowed him to do important shows on important topics – not just to entertain. By airing two episodes on the need for treatments for people with rare diseases, he addressed a very important public health challenge.

    Mr. Klugman’s death comes just one week before the start of the 30th anniversary year of the Orphan Drug Act of 1983 and the establishment of NORD to represent rare disease patients and patient organizations. NORD will always remember him as one of the best friends the rare disease community has ever had.”

Image courtesy of Phil Konstantin on Flickr (CC BY).

About Stephanie McDonald

As Assistant to the President, Stephanie interfaces with all the departments at Siren. She has been with Siren for over five years and has a background in marketing, logistics and business development. Stephanie has an MBA from the University of Illinois.

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