|Keywords||Caregivers, Children, Chronic Illness/Chronic Disease, Disability, Family Relationships, Father-Daughter Relationship, Genetic Engineering, Hospitalization, Humor and Illness/Disability, Illness and the Family, Medical Ethics, Medical Research, Ordinary Life, Parenthood, Professionalism, Science, Suffering|
|Summary|| Extraordinary Measures, based on events in the life of John Crowley and his family, dramatizes the father's quest to find a cure for Pompe disease, a relatively rare genetic condition that afflicts two of his three children. The quest brings into play three powerful, often competing human motives: a father's love for his children, a scientist's pursuit of knowledge and recognition, and a corporation's mandate for profits. Crowley (Brendan Fraser), an energetic marketing executive, and his wife Aileen (Keri Russell) are told that their children Megan (Meredith Droeger), age eight, and Patrick (Diego Velazquez), age six, have reached the upper limits of their life expectancies.|
When Megan, an affectionate, playful, and clear-sighted child, is rushed to the hospital with symptomatic heart and respiratory failure, a young physician empathically encourages the parents to think of their only daughter's immanent death as a "blessing" that will end her suffering. However, Megan survives. "So I guess you could say we dodged that blessing," Crowley echoes back to the doctor. Seeing Megan's will to live reinforces John's wish to make her well, and he abruptly abandons his promising career to find a medical researcher who can reverse Pompe's effects.
Immersing himself in medical journals and websites, John discovers the intriguing research of Robert Stonehill (Harrison Ford). A cranky, renegade scientist who thinks to the beat of rock music blasting from a boom box, Stonehill has developed a cutting-edge theory about correcting the enzyme deficiency in the cells of people with Pompe, which gradually weakens skeletal, respiratory, and heart muscles. However, to produce a treatment derived from his theory, he needs more funding. John immediately creates a fund to support Pompe research, and he and Stonehill form a mutually exasperating partnership. They lock horns with each other, venture capitalists, and finally a large genomic research corporation, Zymagen.
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 it has not cured the Crowley children, and almost certainly it won't. The treatments do, however, show more success when taken at the onset of symptoms.
|Commentary|| The film as a whole invites us to appreciate the Crowleys without sentimentalizing the family or crossing a fine line into melodrama with unambiguous heroes, villains, or victories. (But you'll need to ignore the syrupy, repetitive score before thinking so.) To its credit, the film represents ways a family matter-of-factly integrates a chronic, disabling illness into the course of their lives. We witness Megan's joyful birthday party, family outings to a bowling alley and a park, domestic scenes of good-humored teasing and bedtime reading.|
The challenges and tensions the Crowleys experience also appear in snap shots that hint at the larger picture of their lives. Aileen forgets the names of the ever-present, ever-changing nurses that the agency "shuffles" through the house. She and John are startled by a nurse who, showing up early, walks in on an amorous moment. The children nag John about his absences. When John leaves his job, an exasperated Aileen asks how they'll pay the children's $40,000 monthly medical expenses without insurance. We'd need another kind of film--or Henry James--to help us imagine the inner lives of parents living always on the edge of the ordinary and the extraordinary, of comfort and fear.
Extraordinary Measures also reveals to those unfamiliar with how science gets done a view of the strict protocols, the financial exigencies, the competing interests, and the play of circumstances and personalities entailed in medical research. But the film thins out the project's many trials and errors, and it stereotypes Stonehill as an isolated, single-minded, theoretician. The fuller story of a how the Pompe treatment was brought to market appears in Geeta Anand's book, The Cure.
Although the film resists forcing ethical moments to their crisis, viewers attentive to the clinical, ethical, familial, or policy matters that the film suggests can bring its discussible questions to the surface. What is the meaning of futility? To doctors? To families? To a society? How should or can those meanings be negotiated? How should research agendas be determined and funded? What should be the role of individual stories and public awareness of particular medical conditions in setting these agendas? What support is needed or should be justly provided to families caring for those with chronic or disabling conditions? A searing parental question that Aileen gently asks underwrites the whole film: "Do we just accept our fate, do what we're told by all the well-meaning doctors, and wait for the worst to happen? Or do we fight?" Seeking what we need to know about why some parents answer-or can answer-one way and others another and what the consequences are of how parents answer that question will generate still more questions.
|Leading Actors||Harrison Ford, Brendan Fraser, Keri Russell|
|Running Time||106 minutes|
|Based On||The Cure: How a Father Raised $100 Million--and Bucked the Medical Establishment--in a Quest to Save His Children|
|Video Source||CBS Films|
|Miscellaneous|| For information about Pompe disease, see: http://www.ninds.nih.gov/disorders/pompe/pompe.htm |
|Annotated by||Schilling, Carol|
|Date of Entry||07/05/10|