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Hollywood treatment

A true story that unfolded at Genzyme inspired film ‘Extraordinary Measures’

By Erin Ailworth
Globe Staff / January 16, 2010

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Harrison Ford is the brilliant scientist; Brendan Fraser, the father desperately trying to save his children from an incurable disease. And Zymagen is the biotechnology company that swoops in at the right moment.

The Hollywood movie “Extraordinary Measures’’ opens Friday, and it’s based loosely on a true story that took place more than a decade ago at Genzyme Corp. in Cambridge. But like many “inspired by’’ films, this tale has a back story not found on the silver screen.

Watch the trailer, and you’ll hear about John Crowley, a real-life Harvard grad who built up a company, Novazyme Pharmaceuticals, to create a treatment for Pompe disease after two of his children are diagnosed with the rare enzyme deficiency. Genzyme, which acquired Novazyme and its drug research in 2001, isn’t mentioned by name, though the film does include the fictional Zymagen, according to those who have seen it. Genzyme later successfully created Myozyme, a treatment for Pompe, using its own in-house research.

Producer Michael Shamberg said he and co-producers Carla Santos Shamberg and Stacey Sher were drawn to the film after reading Wall Street Journal reporter - and former Globe staffer - Geeta Anand’s articles and book on the Crowleys. Her book is called “The Cure.’’ The story also intrigued Ford, they said, and the actor helped push the movie’s production. Still, liberties were taken with the way actual events unfolded, and many names in the movie were changed as characters were combined and timelines condensed.

“You try to stick to the emotional truth of it,’’ Michael Shamberg explained, “and the characters are composites.’’

Anand, who covered biotechnology companies for the Journal out of New York, said the film keeps to the spirit of the book but much is fictionalized.

“I understand why they have to do this in Hollywood, but I feel like life is stranger and more interesting than fiction,’’ said Anand, who now works in Mumbai for the Journal, and yesterday was catching a flight to Los Angeles for the premiere.

Anand said at least one character’s name changed after the real-life counterpart objected to the screenplay. “It was interesting to see how if real life interfered, they would just fictionalize even further,’’ she said.

Crowley, who now heads the biotech Amicus Therapeutics in New Jersey, said he hopes moviegoers see “Extraordinary Measures’’ as “a tribute to all of the people who have come together to help our family.’’

His children, 13-year-old Megan and 11-year-old Patrick, have been taking Myozyme for several years, and he credits the drug with saving their lives. “Their hearts when they started therapy were two to three times the normal size and that’s what would have killed them,’’ said Crowley, who is portrayed by Fraser. “The medicine reversed that.’’

Genzyme chief executive Henri Termeer, meanwhile, hasn’t seen the movie yet, though company spokeswoman Lori Gorski attended a screening in San Diego. “I don’t know who is playing me,’’ admitted Termeer, who hails from the Netherlands.

“You’re there,’’ Gorski replied. “Big accent, well-dressed.’’

Termeer hopes to use the film as an opportunity to educate the world about the efforts of hundreds of researchers, scientists, and others who are still working to perfect drug therapies for Pompe. The disease is a neuromuscular disorder in which sugar builds up in muscles, causing damage throughout the body. It affects both children and adults and can show up at any age.

Genzyme first began working on a Pompe treatment in 1998. It was a stressful, frenetic time with life or death stakes for the 5,000 to 10,000 people worldwide thought to have the disease. Scientist Robert J. Mattaliano remembers the moment years ago when Termeer stopped him on the stairs with a message: “Hey, you guys gotta get moving,’’ Mattaliano recalled him saying. “How many more babies have to die?’’

It became a mantra at Genzyme. Babies are dying, workers would remind themselves almost daily.

At the time, Mattaliano and his colleagues were developing four potential Pompe treatments, including the Novazyme drug and Genzyme’s in-house option. They could take only one to clinical trial, however, so Genzyme held what employees refer to as “The Mother of All Experiments’’ - a blind test of all four drugs, which were color-coded magenta, yellow, green, and blue.

Researchers learned which one worked best on a snowy January day in 2002: green.

“OK, so now what’s green?’’ Mattaliano recalled thinking. Then a man walked in with an envelope, he said, “like the Oscars.’’

Green was the internally developed Genzyme drug. Work on all the other Pompe drug candidates - including the one from Crowley’s company - was stopped to focus on developing what would eventually be Myozyme. The Food and Drug Administration approved the drug for sale in 2006.

Today, more than 1,000 patients take Myozyme, including Tiffany House, a Texas law student who will turn 27 the day the movie opens. She was diagnosed with Pompe in 1995 after her parents noticed that she had trouble breathing at night. House participated in one of Myozyme’s first trials, and said she’s worried that the movie leaves the dedication of a lot of people on the cutting room floor in order to focus on one family’s story. Still, she praised the attention the movie is creating for rare diseases like Pompe.

At Genzyme, employees had a similar reaction. Tara O’Meara, who helped run the trials, said that no matter how the company is portrayed, she and her colleagues “know what we did.’’

Erin Ailworth can be reached at eailworth@globe.com.