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Patient Advocacy on the Silver Screen by Jill Siegel

Last Updated on Monday, October 10, 2011

I have always been a fan of the movies; I enjoy escaping into a dark theater to watch a story unfold before me on the big screen. In fact, I am sitting down to write this after enjoying a trip to the movies with my family to see Dolphin Tale, a terrific story that had my six-year-old daughter both enthralled and teary-eyed when she saw the hurt dolphin who we would come to know as Winter. I hope some of the passion and determination exhibited by Sawyer Nelson (played by Nathan Gamble) sunk in with her and she will someday find her own calling (other than Barbies!) that inspires her in a similarly compassionate and blindly hopeful way.

True stories can be more mind-blowing to an audience and more captivating to Hollywood filmmakers than fiction. These films - and their stories - in turn, can motivate others to act in inspired ways. In particular, big screen messages of medical empowerment can have an impact on audiences. The real life inspiration for the film Lorenzo's Oil, Augusto Odone was reported in CNN correspondent (and preeclampsia survivor) Elizabeth Cohen's blog to have said, "I've received thousands and thousands of letters from people who were inspired by the movie They each had their own diseases, but the common idea was the movie inspired them to be active, to be proactive, to find out more about their own diseases."

During patient-centered care month - and always - I appreciate the Preeclampsia Foundation's motto: "know the symptoms, trust yourself." As patients, we have the power to influence our medical care and, in some cases, our outcomes. And, we have to do it. We have to actively engage and use our brains, common sense, and even the Internet to help understand conditions that are affecting our pregnancies and our lives. The big screen has shown us remarkable accounts of patient advocacy that illustrate the catalytic role that average citizens can have on advancing research for complex medical conditions. These compelling stories should be more than enough inspiration for us to take on the role ourselves.

Lorenzo's Oil (1992) tells the story of Lorenzo Odone who at the age of 7 began suffering blackouts, memory lapses, and other strange mental incidents. He was eventually diagnosed as suffering from adrenoleukodystrophy (ALD), a rare nerve disease that strikes only little boys and was always fatal.


Frustrated at the failings of doctors and medicine, Lorenzo's parents, Augusto and Michaela Odone (played by Nick Nolte and Susan Sarandon), begin to educate themselves in the hope of discovering something which can halt the progress of the disease. Knocking on doors, haunting research libraries, reading everything, talking to the parents of other sick children, using intuition, and even convening a workshop with scientists from various medical disciplines they actually discovered a treatment of the disease, employing simple olive oil.

More recently, Extraordinary Measures (2010) was inspired by the true story of John Crowley (played by Brendan Fraser), a man who defied conventional wisdom and great odds to pursue a cure for his children's life-threatening condition called Pompe disease. Pompe is a genetic anomaly that kills its victims before their tenth birthday. In 1998, this often fatal neuromuscular disorder was so rare that no company had yet developed a medicine to combat it. John Crowley raised more than $100 million dollars to launch biotechnology companies to develop the cure. Crowley contacted Robert Stonehill (Harrison Ford), a researcher in Nebraska who had done innovative research for an enzyme treatment. He had little money to fund his laboratory, and a thorny personality that drove away colleagues and funders. John and his wife Aileen raised money to help Stonehill's research and the required clinical trials. Crowley took on the task full time, working with venture capitalists and then rival teams of researchers. Eventually, clinical trials began and to avoid a conflict of interest associated with his children participating in his own company's trials, Crowley quits his job. His children are now 13- and 14-years-old.

Taglines for each of these films focus on miracles ("Some people make their own miracles" associated with Lorenzo's Oil and "Don't hope for a miracle, make one." with Extraordinary Measures) and show us the courage and imagination that people can summon when they must. When doctors urge dying patients to have patience while research continues into a cure for their disease what they are really saying is, "please be patient enough to wait until after you death while we work on this." That kind of thinking was just not enough consolation for the Odones and the Crowleys when their children were struck sick.

These families decided to take on Herculean efforts when confronted with the medical conclusion "there is nothing more we can do." These stories are certainly amazing examples of patients inspiring research. But, equally important, they are about how to give people hope - or how they give themselves hope when no one else will.

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