Targeting the Cure: A Feature Film

For Harvard Business School graduate John F. Crowley, the importance of biotechnology innovation was personal.

In 1998, Crowley began fighting for his children’s lives after learning that his young son and daughter suffered from Pompe disease, a rare and progressive neuromuscular disorder that is usually fatal. He quit his job and started his own biotechnology company in search of a cure. Eventually,  Cambridge-based biotechnology giant Genzyme acquired Crowley’s company and, in collaboration with Duke University and the Erasmus Medical Center in the Netherlands, ultimately developed Myozyme—a treatment that saved the lives of Crowley’s children.

That story inspired the film “Extraordinary Measures,” a drama released in January starring Harrison Ford and Brendan Fraser.

The movie captures much of the emotional excitement of the search for a cure, Crowley and a Genzyme representative agree.

But the film also deviates from the true story of how Myozyme was developed, portraying the fictionalized biotech company Zymagen as not being “patient-focused,” according to Genzyme’s associate director of communications, Lori M. Gorski.

Furthermore, the film moves Zymagen to Seattle—far from Cambridge’s dense biotechnology sector—which, according to those who study the industry, is key to promoting innovations that cure disease.

THE SPIRIT OF A FAMILY

The Crowley family’s story first appeared in a series of Wall Street Journal articles in 2003, and later in a 2006 book called “The Cure,” by Geeta Anand. In the fall of 2003, after the publication of the newspaper articles, Crowley and his wife began receiving calls from film producers seeking to make a movie about his experiences. It took the couple the better part of a year to get comfortable enough to sell their life-rights and become accustomed to the idea of their family’s struggle being portrayed on film.

The Crowleys say their decision was ultimately influenced by their trust in Ford, the executive producer of the film who also plays a scientist collaborating with Crowley. The family worked closely with the producers at Doubletree Feature Films throughout the drafting of the screenplay to make sure that the science and family life displayed were accurate.

Crowley says that the film “captures 100 percent of the spirit and dynamic of our family” and describes the experience of being on set and seeing details from their own lives—the clothes they wore, the van they had—come alive on screen as “very surreal.”

Crowley also had a cameo in the movie, playing a venture capitalist in a scene with Ford and Fraser.

“I got to yell at Harrison Ford for two days while we were filming the scene,” Crowley says. “But that’s okay, he yelled back really well.”

LOST IN TRANSLATION

Genzyme’s Gorski echoes Crowley’s praise for the accurate depiction of the family’s struggle. She also credits the film with accurately portraying “The Mother of All Experiments,” the analysis of four experimental drug treatments for Pompe disease, of which Myozyme was determined the most promising product. She says that the film does an especially good job of conveying the sense of urgency cultivated by the experiment, as scientists toiled to find a treatment that would save rapidly declining young patients.

But like many adaptations of true stories, the movie did not stick exactly to the facts, Gorski says.

Gorski describes one scene—inspired by real life events—in which the Crowley family and another family were invited to speak at the company to employees.

“It was a little disappointing in that [the film] made it seem that this fictitious company was not patient-focused and it took this moment [for employees at the company] to realize that lives were at stake,” Gorski says. “That’s something that’s on our mind every day through every trial that’s done here.”

But she acknowledges that artistic considerations sometimes overrule the truth in Hollywood.

“Of course, you need some sort of villain in every movie,” she adds.

Crowley says that the company portrayed in the film is a fictional adaptation and attributes any potential negative connotations to cinematic license.

“In the film, just like in real life, there are no bad people and there are no bad companies. There’s just a very bad disease,” Crowley says.

Additionally, when a 90-minute movie portrays a decade of life, some details are lost in translation, Gorski points out. The limited timeframe led to the compression of some details.

For instance, Ford’s character Robert Stonehill is inspired primarily by scientist William Canfield but is actually a composite of many scientists. Gorski says she is disappointed that no tribute was paid to many of the other scientists, families, and academic institutions that contributed to the development of a treatment.

“In any scientific breakthrough, it’s not the result of one individual or one moment,” Gorski says.

DRIVING INNOVATION

Although the liberty of cinematic license may have shifted the development of Myozyme to Seattle, Genzyme’s real-life location in Cambridge is a crucial resource to the company and indicative of the city’s central role in the biotechnology industry.

Between 430 and 450 biotechnology companies are headquartered in Massachusetts, according to Peter J. Abair, Director of Economic Development at the Massachusetts Biotechnology Council.

Abair calls Cambridge the “core” of the Massachusetts biotechnology industry, explaining that Massachusetts is one of three biotechnology hotspots in the country, along with the San Francisco and San Diego areas.

Crowley, now the chairman and CEO of Amicus Therapeutics, Inc. a biopharmaceutical company in New Jersey, says that with even medium and larger companies cutting back on research and development and many smaller companies having gone out of business, he expects “[to] see five to seven years from now a huge gap in medical investments...a drought.”

Crowley says that there is a need to foster biotechnology not just at the state level, as seen in Massachusetts, but also on a national platform.

“I think [it’s] the one thing that’s absent from the health care debate. You hear about greater distribution to more people, cutting costs, etc...But I don’t know how you can reform the new healthcare system in America and not talk about innovation, driving new technologies,” Crowley says.

—Staff writer Michelle B. Timmerman can be reached at mtimmerman@college.harvard.edu.