Here is a movie that looks and feels better when you watch it than it does when you research it afterwards and give it more thought.
John Crowley (Brendan Frazer) is an executive and father of three young children, two of which have Pompe disease, a progressive, multisystemic, debilitating, and often fatal neuromuscular disorder, occurring in about 1 in 40,000 births worldwide. Many children who suffer from it eventually die, usually at a very young age. There was no cure at the beginning of the movie.
Dr. Robert Stonehill (Harrison Ford, who is also the executive producer of the movie) is a medical scientist working on a controversial cure at the University of Nebraska. Crowley finds Stonehill on the Internet as a leading scientist in his field. Stonehill is an excentric, twice divorced, and has no life other than his work and going fishing very occasionally. He drives a beat-up pickup truck and listens to cranked up classic rock music while he works, day and night.
Crowley and his wife, against all odds, decide to take measures in their own hands when they realize that their children have less than a year to live. They contact Stonehill and through a series of deals with investors and pharmaceutical companies get involved with a drug company and eventually, by taking on the system controlled by power and money, create a working drug that saves the lives of their children.
This movie has all the elements of an emotional experience. Very sick children who have a better attitude about their situation than all the adults around them. This seems to be a common theme in the genre. We have a very excentric and gruff scientist with no people skills who sabotages his own success and clearly needs somebody to do the mundane stuff for him, like run the business. We have dedicated and devoted parents on a mission to save their children. As I watched I shed a few tears and felt rewarded when Stonehill at the end cashed his check and set up a research practice of his own, the Crowley children’s lives were saved and a medicine was provided for all the other Pompe children in the world. A good, rewarding and thought-provoking movie experience in all.
As the credits rolled, I wiped a few tears off my cheeks. I was entertained. I learned about what it takes (and how hard it is) to create and eventually market a new drug. I agreed that it is hard to make any business work and be successful.
At the beginning of the movie, the statement “Based on True Events” was on the screen, so it set us up, and here lies the rub. Yes, there were true events. There was a Crowley family whose initiative, dedication, creativity, risk taking, braveness and stamina saved the lives of their children. There was no cantankerous Dr. Stonehill in Nebraska. The Pompe cure was developed by Dr. Yuan-Tsong Chen and colleagues at Duke University. Unlike represented in the movie, a university actually did care enough about one of its researchers to make the efforts for a cure. Dr. Chen is now director of the Institute of Biomedical Science in Taiwan. He has been recommended for the Nobel Prize. Apparently Dr. Chen was not colorful enough to craft into a movie, and Harrison Ford could not play a Chinese scientist very credibly. The story had to give and Chen does not get credit.
What the story does not clarify is that the medicine for Pompe costs $300,000 per year in the United States and many insurance plans do not cover it. This will certainly limit the number of children in our system that can get saved. The medicine appears more accessible in nations with universal health care systems. Here is an article that shows how the Australian government funds the medicine, at a cost of AU $600,000 a year.
Obviously, I am not informed sufficiently about the drug industry, and the enormous costs involved. I am, however, astonished how a drug can cost $300,000 a year for anything. Could we not work on a more efficient system? Are we paying for extremely difficult to obtain raw materials? Are we paying for profits? Are we paying for recovery of immense costs to develop such a drug in the first place?
Watching Extraordinary Measures woke me up to these issues and had me do more thinking and research. That alone was worth watching the movie. Since it had that effect on me it gets an extra star.