Written by Alex on January 22, 2010 – 9:58 am
This weekend I am gong to go out to the cineplex and see what has been described as a not-so-great movie called Extraordinary Measures. The story about a businessman (played by Brendan Fraser) who teams with an irascible scientist (apparently overplayed by Harrison Ford) to develop a drug to cure a disease that fatally affects a small number of children is, according to what I have read so far, notable for insights it provides into the world of clinical trials. The Toronto Daily Star dissed the film but did concede it was a “…movie that actually works better as an instructional video on the perils of the American medical system than it does as straight melodrama. Few films on this topic so clearly illustrate the competing agendas and cut-throat capitalism of America’s for-profit health care.” (For full review click here.)
The film is notable because of how the worlds of commerce and business are so closely coupled with medical research. There is a creeping acknowledgement that research is not pristine, nor purely about the discovery of medical breakthroughs; that it has a commercial side that can be viewed as less than savory. This is similar to how medicine overall has been increasingly portrayed as a corporate enterprise more than as a life-saving endeavor. Whether the movie’s views about research and money are wholly accurate is beside the point. It does signal that the clinical trials system is facing an image issue – one that CROs as an industry and university researchers as a group might want to be aware of as the business of research continues to grow at an impressive rate while other sectors of the economy tank.
For more reviews of Extraordinary Measures go to Rotten Tomatoes, which links to several reviews and provides a good oversight of the film – which has been compared to a glorified made for TV movie. But hey, those of us interested in trials will certainly get something out of the experience, if only a little more insight into how the general public views our endeavors.
I find the reviews somewhat curious in that they depict it as a father who is going to extraordinary measures to find a “CURE” (in the words of the reviewers) for his childrens’ rare disease, in this case, Pompe disease. Instead, what was actually accomplished was not, in fact, a cure, but a transformation of the disease from a once-fatal condition to a permanently chronic ailment which will require ongoing treatment for as long as the child lives. That’s a very similar situation to what occurred with patients with type 1 diabetes shortly after the discovery of insulin in 1921. But the disease transformation, in the words of author Chris Feudtner (“Bittersweet: Diabetes, Insulin, and the Transformation of Illness”, 2003) the term “Bittersweet” describes medicine not so much as a history of consistent and steady progress as it is often viewed, but rather, a compromise between the lesser of two lousy choices. In many cases, treatment falls short of the ultimate goal of actually making people better and restoring them to permanent health. This is true for not only diabetes, but for many other conditions, ranging from asthma to AIDS. In the process of disease transformation, I hope that Mr. Crowley learns a few things about chronic ailments in the process; namely that treatments are not the same thing as cures, and often come with adverse events of their own. His children are not cured; rather they will continue to need this drug (currently made only by Genzyme, hardly what one could call a robust competitive market), and the lack of competition means those individuals will be victim to the pricing whims of a for-profit company for eternity (ironic, considering insulin has been around since 1921, just a handful of global companies make the stuff even today). Welcome to the world of chronic disease, Mr. Crowley … it’s better than death, but its still not a cure ….