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Extraordinary Measures

A Portland couple have two younger children that are afflicted with Pompe’s disease, a rare neuromuscular ailment that is usually fatal within the first eight years of life. Megan is the partner’s 8-year-old middle child and Patrick is the 6-year-old youngest, so time is running out of them. The husband, an advertising executive, leaves his job and contacts Dr. Robert Stonehill, a cranky, renegade scientist in Nebraska who has done an unprecedented research for enzyme treatment and is one of the leading researcher in the field of Pompe’s who’s idiosyncratic for thinking to the beat of rock music blasting from a boom box. The two men meet and clash after driving to the University of Nebraska where Stonehill is employed. He has little money to fund his laboratory, and a thorny personality that drives away colleagues and funders. John and his wife Aileen raise money to help Stonehill's research and the required clinical trials. John takes on the task full time, working with venture capitalists and then rival teams of researchers. They lock horns with each other, venture capitalists, and finally a large genomic research corporation, Zymagen. Stonehill's angry outburst hinder the company's faith in him, and the profit motive may upend John's hopes. The researchers race against time for the children who have the disease. The film is maudlin to say the least but earnestly true. The very first thing I’ve learned in the movie is that you can do anything if you try hard enough. Our hero, John Crowley, finds the scientist who is on to a cure, quits his job, forms a start up, sells the start up to corporate America to keep the project going, and then defies the corporation in order to give the miraculous cure to his 2 kids. And, of course, the cure works! Wow, what a innocuous message! Notwithstanding the enormous number of stories that glorify the heroic individual that defies the odds and “makes it happen”, this is in fact a pernicious distortion of real life. In all but a statistically minute number of cases, terminal ill children die. Also, most start ups fail, and executive who heroically and emotionally stand up to their bosses get fired.

Despite the scientist's abrasive ways, Zymagen gives Stonehill a lab and creates employment for Crowley. However, the two confront the company's culture of rigorous competition among its scientists and its focus on profit margins that ignore the fates of individual children. When the Zymagen scientists develop a promising therapy, they decide to offer the treatment only to infants, who are most likely to experience benefits. Disqualifying Crowley's children from the promising trials, this decision, combined with Crowley's obvious conflict of interest, creates the film's final obstacle. Stonehill and the executives uncharacteristically collaborate to overcome it. This ending might seem implausibly neat, but it's consistent with the film's mostly evenhanded approach to the dilemmas of pursuing treatments for orphan diseases. Toward the end, we witness even Crowley, albeit uncomfortably, reaching beyond his fatherly motives for the Pompe project and turning his argument for bringing the treatment to market from children to profits. The longer the patients live, John assures the executives, the more treatments Zymagen will sell. The film leaves space for viewers to ask to what extent Crowley's argument creates a fair compromise or opens an ethical quandary. In a closing narration, the film moves beyond the fictionalized characters and plot to the real Crowley children and a tempered victory. Yes, the Pompe treatment stopped the progression of the disease and improved Megan's and Patrick's hearts. But in real world, it has not cured the Crowley’s children, and almost certainly it won't. The treatments do, however, show more success when taken at the onset of symptoms.

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