"Extraordinary Messiness"



Publish date

Tag(s): Archive post Legacy post
Topic(s): Research Ethics

Hollywood has taken up orphan diseases before–remember “Lorenzo’s Oil”? And bioethics movies generally have been increasingly common, even just in the last year. Think “My Sister’s Keeper”. So why all the fuss about “Extraordinary Measures”?


But maybe its the star power, maybe it’s actually that it’s a decent movie (although very few have said so except New York Magazine), but Extraordinary Measures is getting a great deal of attention as the father-turned-biotech startup investor-turned underdog against the pharmaceutical industry story has hit the big screen.

The only part that is of interest to me about this movie is that it has put a bright light on the path to drug development–and that it is anything but smooth and fraught with politics, financial calculations, and very little to do, ultimately, with saving the most vulnerable and sick among us.

For those of us in bioethics, you are probably saying “Um, yeah, tell me something I don’t know,” but for the general public who often rarely think about where their medications come from any further beyond the pharmacists counter, I would hope this film would be an enlightening view into the (sometimes dark) underbelly of R&D.

Moreover, the notion that even in this day and age, with all of our medical technology and the trillions we spend on healthcare each year, that there are (even very small) populations of children or adults whose conditions are “orphans” because developing treatments for them will not have significant enough return on investment, I’m guessing, would be as shocking to many Americans as it was to John Crowley when he learned that his children had the obscure “Pompe disease”.

Ultimately, this movie is likely to join the ranks of other bioethics and pharma movies for the purposes of teaching and discussion, but one hopes that it will be remembered for offering a unique perspective on the extraordinary complications and messiness in pharmaceutical research and development involving orphan diseases.

Summer Johnson, PhD

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