How Quincy M.E. Changed Medical History

For decades, Americans suffering from ‘orphan diseases’ struggled to get their voice heard. Then Pete and Jack Klugman used TV to make the world listen.

A young man in front of Congress

It was a warm June day in Washington D.C. when Adam Seligman was called upon by the members of the Congressional subcommittee on Health and the Environment to speak. Adam was only 18 and he was nervous. The prospect of speaking at such a hearing would have been daunting to most teenagers, but Adam had an additional reason to be self-conscious — he suffered from Tourette’s syndrome.

That the committee was listening to his testimony at all was down to his mother, Muriel. In the autumn of 1979 she had found herself at wits’ end. At the time, Tourette’s was a little-known disorder, afflicting just a tiny fraction of the US population. A drug called Pimozide, first discovered in 1963, could alleviate the worst of Adam’s symptoms but it wasn’t available in the US. For a while Muriel was able to bring it in from Canada, but then her shipments started getting seized by customs. In desperation she rang her Congressman, Henry Waxman, for help.

Waxman and his staff couldn’t liberate Muriel’s shipments, but the more they investigated the reasons for the seizure the more they were amazed. Pimozide wasn’t available in the US because it wasn’t FDA approved. Approval was a costly business and the brutal economic truth was that for a pharmaceutical company there were too few Tourette’s sufferers to make it worth the price. Tourette’s was an “orphan disease” — one of many — and Pimozide was an “orphan drug.” Waxman had managed to persuade the subcommittee to hold a hearing about the issue.

Adam’s testimony was stark and emotional. He talked about the spasms that jerked his neck back so violently that he couldn’t breathe. The years of hopelessness and the schizophrenia drug, Haldol, he’d had to take because it was the only approved drug that could vaguely help. He talked about the side-effects of that drug — the fatigue, depression and blurred vision that had forced him to repeat a whole year at school. In contrast Pimozide, when he’d been able to get it, had seemed like a miracle treatment. Whilst on it he’d been able to focus on his schoolwork and in just nine months, through hard work, he’d caught up on two years of school and graduated. Without it though the symptoms were coming back and he was afraid of having to go on Haldol again.

Adam’s testimony was incredibly moving. But Waxman knew that getting public attention for the issue — something vital if any proposal to remedy the situation was to gain political traction — would be almost impossible. In the days before social media, there were few ways to generate publicity for a niche issue.

Indeed so little notice had been paid by the press to the hearing, despite Waxman’s best efforts, that the only paper which had bothered to send a reporter to cover it was the Los Angeles Times — and then only because Adam was a local boy. The result was a few, small column inches on the subject. Few people read it.

The same year that Adam gave his testimony, a 65 year old insurance salesman named Pete was diagnosed with cancer. Struggling to balance work with his fight against the disease, Pete turned to his brother for advice. His brother told him to move to Los Angeles.

“But what’ll I do there?” Pete had asked. His brother told him not to worry. He’d find him something to do — and pay him out of his own pocket until he did.

It was Pete who saw the article about about Adam and the hearing, and having done so he finally saw something that he could do. He scrawled down some quick notes and went to see his brother again — Jack Klugman, aka Dr. Quincy, M.E.

“Listen,” Pete told Jack, “I’ve got an idea for a Quincy show.”

“Pete,” replied Jack kindly, “take the $600 a week. Enjoy it with your wife. C’mon… You don’t know anything about television.”

“No!” Pete said “I want to participate!”

“Pete,” Jack said again, trying to let his brother down gently, “you don’t know anything about…”

“Look at this idea!” Pete insisted, and showed him his notes. Klugman looked at Pete’s notes on a potential episode about Tourette’s and, as delicately as possible, pointed out the various problems with it.

“Fine!” Pete said, grabbing his notes away. “I’ll go and do the research on it!”

Two weeks later he was back. He’d corrected all the problems and done all the research. Jack Klugman looked at it again and this time realised that it would work.

From Quince to Quincy

In June 1980 Quincy, M.E. was a show at the height of its popularity. A forensic crime drama — indeed, arguably the forensic drama on which all future ones would in some way be based — the series focused on the work of its titular character, L.A. Medical Examiner Dr Quincy, whose nose for wrongdoing and skill as a coroner helped solve the most mysterious of deaths.

The idea of a medical-meets-police show had originally sprung from the mind of screenwriter Lou Shaw. He mentioned it to TV producer-extraordinaire Glen Larson whilst working on the detective show McCloud. Larson knew that NBC were looking for a fourth show to run alongside McCloud, Columbo and McMillan in their Sunday Mystery Movie series and suggested they make a deal — Shaw would flesh out the concept and in return Larson would get it past both Universal and NBC.

Shaw agreed and soon returned with a programme he called Quince. Quince, he explained, was a young, wise-talking playboy doctor who worked as a Medical Examiner at the L.A. Coroner’s Office — a man who solved mysteries with both his brain and his fists. Larson loved the concept and suggested a few tweaks he knew would make it more appealing to both Universal and NBC. Critically, he also suggested changing the lead character’s (and thus the series’) name to Quincy. Shaw agreed and soon Larson came back from Universal with permission to make a pilot.

Racism and the lead role

Larson and Shaw wanted Robert Wagner to play the role but, desperate to escape Universal and nearing the end of his contract, Wagner turned them down. They next took the script to James Earl Jones. Jones liked it but suggested that Quincy be the kind of man who got worked up about injustice, so Shaw rewrote the pilot slightly with that in mind. With James Earl Jones now onboard they returned to Universal, but once again the casting was to fall through. The studio vetoed James Earl Jones as Quincy.

Later accounts often suggested that the main reason Universal didn’t want Jones was because they didn’t think he’d sign on for a full series if the pilot was a hit. This may have been part of the reasoning, but Shaw has always insisted that the real reason was far more depressing — it was racism.

“Let me ask you something, Lou,” Shaw would later insist he was told by a studio exec tasked with explaining the veto, “this beautiful blonde is dead, and James Earl Jones puts on the gloves and goes in alone to do an autopsy on the blonde body. I don’t think that would work, do you?”

“[T]his beautiful blonde is dead, and James Earl Jones puts on the gloves and goes in alone to do an autopsy on the blonde body. I don’t think that would work, do you?”

Whatever the reason, Jones would get his lead role a few years later in Paris, while Larson and Shaw had to reach out once more for a star. More in hope than expectation, Larson told Shaw to rewrite Quincy to be a slightly older, more sedate man who was less of a playboy type. He then told him to send that script to Jack Klugman’s agent. At the time Klugman was hugely in demand, his seminal role as Oscar Madison in The Odd Couple only recently off people’s screens. Larson and Shaw were thus somewhat surprised when they got word that he was interested and wanted to meet.

Klugman would later insist that it was the idea of being able to do something scientific and forensic that attracted him to the role — the fact that it wasn’t just a half-hour sitcom like everything else he was being sent — but Shaw would always claim there was a more amusing reason for Klugman’s decision as well. When Larson and Shaw met Klugman for the first time, Shaw claimed, the actor told them that he thought the character was fabulous, but he did wonder “if those girls would go for a balding, fat, middle-aged Jew like me?”

“[Will] those girls would go for a balding, fat, middle-aged Jew like me?

It was then that Shaw realised they’d sent him the young playboy script by mistake. Catching his eye, Larson shrugged and gestured that they should just run with it. Somehow they’d managed to get a firm commitment from Klugman and Larson’s instincts told him that meant an instant pick up. He was right — when the news reached NBC they told Universal to skip the pilot and go straight to series.

The Jack Klugman show

By the time Pete Klugman pitched his Tourette’s episode to Jack in 1981 the show had been a mainstay of NBC’s evening lineup for five seasons. It had never been smooth sailing, however, for those working on the show. This was because Jack Klugman had a very strong vision about what the show should be and anyone who he felt stood in the way of that — be it the network, producer, writer, actor or journalist, received the full force of his personality.

The trouble was that Klugman had no time for simplistic or badly researched plots or scripts. He also quickly tired of the basic forensics-and-fists concept that Shaw and Larson had created. Instead, by the middle of series two, he had decided that Quincy as both a series and a character should be about more than that — it should be about people and the issues they faced in life. “From early on,” Klugman told the Los Angeles Times in 1977, “my big concern was to keep Quincy, M.E. from becoming another cop show. I wanted to do scripts that were relevant and meaningful, that people could watch and learn from. To me that was more entertaining than girls, guns and car chases.”

“I wanted to do scripts that were relevant and meaningful, that people could watch and learn from. To me that was more entertaining than girls, guns and car chases.”

“A lot of freelancers would come and and try and sell us a crime and forensics show.” Story Editor Michael Braverman explained later to author James Rosin. “That’s not what Quincy, M.E. was about. It was a show about humanity disguised as a crime and forensics show.”

It wasn’t long before the intrinsic conflict between Klugman’s vision and that of the show’s creators, Shaw and Larson, erupted into full scale war. The final battle came in series two when Klugman and Larson argued over an episode the actor felt was far too gimmicky. Larson refused to modify the script so Klugman simply refused to show up. Larson retaliated by writing in a different doctor as a guest star and filming it as Has Anybody Here Seen Quincy? but the writing was on the wall. Universal were forced to step in and elected to back the series’ star. By the end of that series both Shaw and Larson were gone and Klugman was showrunner in all but name, something a string of future producers, including Donald P. Bellisario, would later discover to their regret.

Tackling Tourette’s

Whatever Quincy’s creators (and indeed NBC) thought about the direction Klugman had taken, both audiences and critics certainly approved. A string of heavy-hitting episodes had already aired by 1981 and so the more Pete Klugman told him about the orphan disease problem, the more Jack realised that this issue was worth covering. He contacted Congressman Waxman; the idea of celebrity advocacy was still relatively rare, but Waxman quickly realised that the public attention Klugman could bring to the issue could be enormously beneficial. The Congressman was thus more than happy to bring the actor up to speed with both the hearing and the difficulties those suffering from orphan diseases faced. He also introduced Klugman to Adam Seligman.

Things moved quickly now. Jack brought Pete on board and informed producer David Moessinger that he wanted to do an episode that revolved entirely around Tourette’s and orphan diseases. Moessinger was perhaps the most successful (and certainly the longest lasting) of Quincy’s producers largely because he was happy to let Klugman set the show’s direction, so Moessinger agreed.

The next challenge was to turn Pete’s story idea into an actual script. For that they turned to Sam Egan. One of the first writers to really understand what Klugman was trying to do with Quincy, M.E., Egan already had a number of heavy-hitting, award-winning episodes under his belt and Klugman was a big fan of his research-heavy approach. Never a Child had addressed the issue of child pornography, Nowhere to Run incest and Honor Thy Elders had highlighted the issue of elderly abuse so well that it had been screened in the California State Senate.

Jack briefed Egan and introduced him to Adam Seligman, and the writer got to work. “A lot of the initial groundwork I did for the show was through conversations I had with Adam telling me how he was affected, observing how he was affected, the medications received, and the overriding issue of orphan drugs.” Egan later explained.

The result was Seldom Silent, Never Heard, a powerful episode ostensibly about the death of a Tourette’s sufferer. The mystery, however, is effectively solved before the first advert break, and the rest of the episode follows the travails of the dead child’s friend, a young Tourette’s sufferer called Tony Ciotti who was heavily based on Seligman himself. The episode climaxes in a congressional hearing on the subject. The ‘fake’ hearing simply lifted whole swathes of testimony and dialogue straight from the real one.

“When I handed in the script [Jack] called me down to his trailer to say that I basically hit it out of the park; that it had everything he wanted.” Egan later remembered. “That was a gratifying moment for me.”

In a quest for realism Klugman initially insisted that the role of Tony Ciotti be played by a genuine sufferer, perhaps even Adam himself, but this was the only thing on which Moessinger and episode director Jeffrey Hayden put their foot down.

“This character carried the show. It was a tour-de-force role and we really needed an actor for the part.” Jeffrey Hayden later told Rosin. “I had six days to film the script. I couldn’t do it with a college kid who had never acted before.”

Hayden and casting director Joe Reich hunted around and found a young actor who could pull it off in Paul Clemons. They managed to persuade Klugman to at least let him read for the part, and having seen his performance, the actor agreed to his casting.

The episode finally broadcast on 4th March 1981. In the lead up, Jack Klugman was not silent. He embarked on a huge publicity campaign, giving interviews to papers across the U.S. on the subject. “[Tourette’s] is a terrible disease,” Klugman told the Associated Press in February when describing how the episode came to be made. “I asked why drug companies couldn’t find a cure. They told me there are only 100,000 victims of the disease so it wouldn’t be profitable to invest $7million — $50million in research. I blew my stack. What are they doing, waiting for a popular disease? Something in the top 40?”

“What are they doing, waiting for a popular disease? Something in the top 40?”

Congressman Waxman and his staff hadn’t been idle either. Coordinating their efforts with Klugman, they had scheduled another hearing on orphan diseases, and started work on a bill that would provide financial incentives for the development of drugs to treat them, for the week after broadcast. Adam Seligman would testify again, but this time so would Jack Klugman.

Seldom Silent, Never Heard had the effect on TV audiences that all those involved had hoped it would have. The episode also ended with a message mentioning the upcoming hearing and calling for letters of support. These flooded in and the spotlight turned to the congressional hearing.

“Hollywood celebrities are so prevalent on Capitol Hill these days that they rarely cause much of a stir.” Waxman wrote later. “But in 1981 the appearance of a bona fide television star like Jack Klugman at a congressional hearing was a major event.”

The second hearing

Waxman remembers Klugman’s own testimony as being powerful and mesmerising, to the point where one congressman forgot that he was an actor and began asking questions as if he were a real medical examiner. Once again Seligman gave his testimony, but this time he wasn’t alone. The last meeting had been nearly empty, without an audience and with scant witnesses as Waxman and his staff had struggled to make contact with those suffering from orphan diseases who were prepared to talk. Since the last hearing though, and thanks also to Quincy, news had spread. This time it was different. Hundreds of orphan diseases were represented: Cystic fibrosis, spina bifida, Huntingdon’s chorea, ALS, even obscure ailments like cystinosis, a genetic kidney disorder which affected only 100 children every year.

“One by one, victims of these diseases and their family members described lives of helpless isolation,” Waxman remembered, “driven by the unending and often futile search for answers about their condition and medical care to treat it. Most had nowhere to turn. The sights, sounds, and personal stories brought many of us to the point of tears. It was as if someone had pulled back a curtain to reveal an entire segment of society that no one knew was there; gathered together in a congressional hearing room before the national media were human beings with diseases so disabling or disfiguring that they never came out in public. In my thirty-five years as a congressman, I have never witnessed a more powerful scene.” The next day, the hearing, and Klugman’s attendance, made the front page of The New York Times. The process of passing an Orphan Drugs bill in Congress began in earnest.

“The sights, sounds, and personal stories brought many of us to the point of tears. It was as if someone had pulled back a curtain to reveal an entire segment of society that no one knew was there”

The Senate intervenes

Politics, however, is rarely simple. The bill’s supporters worked hard to try and get it into law, but it was a tough process, requiring passage through both Congress and Senate before finally getting the President’s signature. It passed Congress as The Orphan Drugs Act in September 1982 but in the Senate it hit trouble. That trouble came in the form of Senator Orrin Hatch, chairman of the Senate Labor and Human Resources Committee which had jurisdiction over drug legislation. Hatch didn’t have any objections to the bill in principle, but he decided to use it as a vehicle for some amendments of his own. Primarily, he attached to it the creation of a cancer research and screening programme in his home state of Utah for approximately 200,000 people potentially affected by radiation during nuclear weapons testing in the 1950s.

That in itself was not particularly worrying to Waxman and the bill’s other supporters. What was disastrous, however, was the second amendment he proposed at the request of Senators Bob Dole and Russell Long of the Senate Finance Committee, presumably in return for their support for the cancer programme amendment. This replaced the 90% tax credit the bill included for clinical trials of orphan drugs with a dedicated $50m grant programme instead. On the surface, this didn’t seem harmful. But the truth was the exact opposite.

“A tax credit can simply be written into law and take effect immediately,” Waxman later explained, “whereas a grant requires not only an authorization but an appropriation as well.”

In essence the money for the grant would have to be separately approved by Dole’s committee and the bill’s supporters knew that would never happen. Their only hope was that Hatch would withdraw his amendments and agree to resubmit the bill without them, but that was practically unheard of.

Jack Klugman was not prepared to admit defeat. On 27th October 1982 NBC viewers tuned in for their weekly dose of Quincy. What they saw was the episode Give Me Your Weak, once again written by Sam Egan.

Give Me Your Weak

Give Me Your Weak was an extraordinary piece of television: a no-punches-pulled attack on a pharmaceutical industry that was providing no public support for the Orphan Drugs Act and of politicians who treated potentially life-saving legislation like this as an opportunity to serve their own ends. It focused, in particular, on a single fictional politician who was blocking the fictional version of the Orphan Drugs Act, who thought he was untouchable because no one would care if it failed.

The episode ended with Quincy confronting the errant politician in his Washington D.C. office. The politician tells Quincy that he’s not worried about his actions because no one who matters will notice. Quincy tells him to look out of his window. Outside is a march of protestors calling for the bill to pass: not just protestors, but victims of orphan diseases, their carers, their doctors, their relatives and the relatives of those lost to these diseases over the years.

Once again, Klugman had insisted that the scene needed real people. This time, Moessinger agreed. With the help of the bill’s supporters, all of those that marched down the Pasadena street on which this scene was filmed were exactly what they claimed to be — those affected by orphan diseases in some way. And once again thanks to a burst of newspaper interviews Klugman had carried out before filming, many of the TV news vans there were real as well.

Give Me Your Weak pushed the Orphan Drugs Act right back into the media spotlight at a point where Waxman and its supporters were desperate for any kind of leverage in their negotiations with Hatch. It worked. Within a month the argument was about the size of the tax credit the bill should contain not whether it should have one at all. By the end of November there was agreement and a genuine compromise had been reached. On December 14th the Waxman-Hatch Orphan Drugs Act was passed by Congress. On December 16th it passed the Senate.

It now had just one final hurdle to pass — President Reagan. There was talk of a veto, so the Act’s supporters were taking no chances. Whilst Orrin Hatch lobbied the White House behind the scenes Waxman, Jack Klugman and Adam Seligman stood up in a press conference together on Christmas Eve 1982 and publicly called on the President to ratify it. On January 4th, 1983 Reagan signed it into law.

The missing man

Afterward, all of those who had worked so hard to get the bill through gathered to celebrate its passing and ratification. The joy was palpable, but it was also tinged with regret. One man was missing — Pete Klugman.

For Pete Klugman’s cancer had turned out to be terminal and Maurice Peter “Pete” Klugman had died, aged 66, never having seen the Orphan Drugs Act pass.

Before 1983, only 10 orphan drugs were presented to, and received approval from, the FDA. Since 1983 over 300 have have been approved, with over 1000 more in development, helping hundreds and thousands of people the world over. Pimozide — the drug Muriel Seligman had been forced to try and source from Canada for Adam — was one of the first, receiving FDA approval on July 31, 1984. It is still used to treat Tourette’s today.

“There’s got to be some value on TV.” Jack Klugman once said. “You can’t just have screeching tires.”

This article is dedicated to the memory of Jack Klugman (1922–2012).