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Trisha Torrey

RIP Jack Klugman - a Crusader for Patients With Rare Diseases

By December 27, 2012

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If you remember Jack Klugman, it's likely you remember him either as half of TV's The Odd Couple (alongside Jack Lemmon), or as Quincy, the TV doctor. But even if you don't remember him, you'll appreciate this story, shared with us via Joshua Green of the Washington Post after Klugman died just a few days ago.

It's a story I could never have appreciated in 1982, when it took place. But as a Guide to Patient Empowerment, I can certainly appreciate it now.

The very short version (spoiler alert!) is shared here. The much more detailed synopsis can be found on the Washington Post website. Either version will help you better understand this fine actor and human being far more than you did before you knew the story.

It seems Jack Klugman's brother, Maurice, who wrote some episodes of Quincy, had been diagnosed with a rare form of cancer. Soon after, he noticed a brief article in the newspaper about a bill being discussed in Washington that would encourage pharmaceutical companies to develop drugs for rare diseases, called Orphan Diseases (and therefore, Orphan Drugs) Act. The problem, of course, was that no drug companies were manufacturing drugs for rare diseases because they couldn't make enough money from them. There just weren't enough patients who needed them to make the manufacture of them worthwhile.

Now, this will come as no surprise to empowered patients who understand that the first rule of American healthcare is to follow the money. But it disturbed Maurice enough that it compelled him to write an episode of Quincy that raised this point, at just about the same time hearings were taking place in Congress to try to pass the Orphan Diseases Act. The Orphan Diseases Act provided a number of incentives to pharmaceutical companies to encourage their production of drugs for these orphan diseases, including tax credits that would offset the bigger profits a company would make from developing drugs that would bring higher profits.

And then something else happened that won't surprise any of us. Senator Orin Hatch, who had originally co-sponsored the bill, removed the tax credits to protect the turf of some of his cronies, in effect pulling the plug, leading the Senate to vote against the bill.

Undaunted (and angry!), Jack and Maurice wrote and produced a second episode of Quincy which raised the problem again. It featured an angry Quincy chewing out the backside of a (heartless, fictional) US senator, including a scene in which 500 people picketed the senator to get the bill passed. An interesting sidenote - those 500 people really did suffer from rare, orphan diseases.

Eventually, due to the publicity, Hatch relented. The bill passed in 1983. Since then, more than 300 drugs have been developed to treat rare diseases, helping millions of patients by improving their quality, and length, of life.

Jack Klugman made a difference. Those millions of people can thank both Jack and his brother, Maurice, for taking on the cause of orphan diseases and drugs, for seeing through political ploys, for doing what they could do to right a wrong. Even if you don't suffer from an orphan disease, it's possible you know someone who does - a loved one, a friend, a co-worker. So you, too, have benefited from the Brothers Klugman's work.

A further note on the subject - let's look at Jack's accomplishment as a positive way in which media can benefit society. The media has taken a massive hit in the past weeks for its reporting on violence. I challenge the media to look for more stories like this one about Jack and Maurice Klugman, and to showcase them for their positive outcomes.

Those stories are out there - and we don't even have to look very far.

RIP Mr. Klugman - and thank you for your positive contribution to American patients.

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