"Extraordinary Measures" Movie Tells The First Half of a Longer Story

Last weekend, (according to most reviews) a mediocre movie called "Extraordinary Measures" opened. It was the story about a motivated businessman (played by Brendan Fraser) who teamed up with a scientist (played by Harrison Ford) to, in the words of most news articles and reviews, to 'cure' a disease that fatally affects a tiny number of children, including his own children. That story was based upon the real-life story of a man named John Crowley, whose kids have a very rare condition called Pompe disease. In 2003, The Wall Street Journal featured a story on the front page about Mr. Crowley, and the same WSJ author Geeta Anad who also wrote a book entitled "The Cure" about the same thing -- now there's with a film based on her book. But Greeta's title uses poetic license quite liberally, because the reality was that Mr. Crowley accomplished pretty much what Frederick banting did in 1921, transforming the disease from a rapidly-fatal disease into a chronic disease, but stopping short of actually curing it. Mr. Crowly only partially succeeded.

Have a look at the following video:



Now truth be told, I don't know a lot about Pompe disease, and frankly, I have very pretty limited interest in learning more about the disease because it doesn't affect me. Much like people who do not have diabetes tend to have pretty limited interest in learning more about those diseaseS - I hope people will note the plurality - in fact, most people already assume they know far more about diabetes then they actually do, in fact, studies have proven that many people mistakenly believe that insulin is a CURE for diabetes, see here for details. There are plenty of know-it-alls out there whose entire knowledge of diabetes is based on incomplete or even inaccurate information, yet feel at ease sharing their lack of knowledge with people who know boatloads more than they do.

But as I suggested before, from what I can tell, Mr. Crowley achieved only a partial victory. Two of his children have Pompe disease, and although his kids have not died, they nevertheless will require treatment with a biotech medicine known as Myozyme as long as they live. Crowley's kids aren't cured, and long-term treatment will be subject to the wonders of the U.S. Healthcare "system" (a term I use very loosely). But the story is only a partial victory, I'm afraid. And right now, they have a pre-existing condition, meaning outside of Massachusetts, these kids will never be able to buy a healthcare policy at any price, barring some kind of healthcare reform legislation in Washington, which looks increasingly doubtful. Whether they realize it or not, Mr. Crowley's kids' life options will be limited due to that pre-existing condition, as they can't live the carefree lifestyles or vagabond through remote parts of the world the way some kids have the luxury of doing.

Along with that are sentiments that people with type 1 diabetes deal with all the time, like statements such as "be thankful it wasn't something worse" and "they'll get used to needles", the Crowley kids will deal with these things forever, just like people with type 1 diabetes have to do -- and they may need to fight to get Congressional funding for truly curative therapies. I don't mean to be insensitive, but these are the kinds of things people say to people (like me) as a person with type 1 diabetes all the time.

Right now, only one company makes Myozyme (that company is Massachusetts biotech company Genzyme, which has had a number of problems expanding production of that biotech medicine), and it's pricey (putting it mildly), but competition will NOT be forthcoming any time soon, and at times, it will feel like the company that makes your life-saving medication is sucking every penny from them because the company can. Genzyme has expanded rapidly by acquiring companies such as the one Mr. Crowley started. But even when the patents expire, competition may not rush in, and one look no further than the recent history of insulin as an example.

In the case of diabetes, after nearly 90 years, there are still just 3 companies selling insulin in the U.S., and indeed, throughout much of the world. And at least one of the companies involved (Eli Lilly and Company) now outsources much of it's manufacturing to third-party manufacturers like Hospira, Inc. (see more on that story here), but could theoretically decide upon a lower-cost player if they wished. The cost on an inflation-adjusted basis has increased dramatically, largely due to the lack of true competition, and innovation has been slow. All I can say to Megan and Patrick Crowley is welcome to the world of life with a chronic illness. Increasingly, medicine does not CURE any diseases (the last cured disease was polio, FYI), merely ameliorates the impact with costly ongoing treatments. Unlike type 1 diabetes, these kids probably will not take blame for the long-term impact of their disease, but I would venture to guess that over time, they probably WILL have to deal with that, too.

Human beings were not meant to maintain homeostasis with ongoing disease treatment, and by some estimates, 75% of all U.S. medical spending is now spent on treating chronic diseases, a figure that is forecast to grow in the coming years. What's more, the U.S. ranks relatively low compared to most other industrialized countries in treatment for chronic ailments (see here for more information on that). Instead of promoting Mr. Crowley as providing a CURE, I wish the author and the filmmakers had chosen to address the fact that in spite of his extraordinary measures, he only scored a partial victory over his kids' disease.

Another blogger who formerly had type 1 diabetes (one who is now insulin-free thanks to an islet transplant) Alex O'Meara, had a different perspective on the "Extraordinary Measures". He views it as an example of the emotional side of clinical trials are undertaken in the U.S. today, and something would-be trial participants should consider before enrolling in a trial themselves. Catch his perspective here.

For me, I may wait on this film and order it on Netflix when it's released on video, but what does anyone else think ... have you seen the movie, or is there any interest in seeing it? I'd love to see your comments!