Lorenzo's Oil

Zach and I were really engrossed in a movie we've heard about and always wanted to see, but haven't- Lorenzo's Oil. Aside from the general drama, we were also enjoying it because of the Italian and Zach's research participation in one of the few centers with active clinical trials in gene therapy.

We were curious about the outcome for this family and found out, thanks to the beloved Wikipedia, that Lorenzo died less than two months ago; one day after he turned thirty- (five days after I turned thirty.)

During the movie Zach was particularly disturbed by the irresponsibility of Hollywood's portrayal of the situation. The Wikipedia article expounded on his thoughts:

"Hollywood found the idea of intuitive leaps of faith more appealing -- and the movie strongly suggests that the only thing keeping brilliant cures from the public is the stubbornness of scientists who insist on their plodding ways. In the movie, the Odones accuse Moser's character of being more interested in scientific accolades than in helping their son. In one climactic scene, Lorenzo's mother, played by Susan Sarandon, accuses the neurologist Nikolais, played by Peter Ustinov, of being a callous coward.

"The life of one boy," Michaela Odone venomously tells Nikolais, "is not enough reward for you to risk the reputation of the institution and the esteem of your peers."

Parents and scientists do have conflicting motivations, but the movie's narrative failed to see two things. Moser's methodical steps masked a passion and determination that would far outlast those of families focused on a single patient. Hollywood also failed to see how the separate motivations of parents and scientists could work well together, and it was left to real life to provide that happier ending."

Zach mentioned that the reason gene therapy has come to such a crawling pace is because human testing caused unfavorable results: leukemia and an actual death. I thought it was interesting that the relative stand-still occurred not because the research itself can't go forward, but because scientists are working with a society that is very tentative to affiliate with or fund anything related to medical mishaps. Researchers must defend and worry about their reputations, or they can't get anything done.

Atul Gawande put it bluntly in his book Complications.

"To much of the public- and certainly to lawyers and the media- medical error is fundamentally a problem of bad doctors. The way that things go wrong in medicine is normally unseen and, consequently, often misunderstood. Mistakes do happen. We tend to think of them as aberrant. They are, however, anything but."

I wonder if doctors like Gawande and someday, Zach, who aren't just "in it for the money" could somehow dispel the stereotype, the community could work together with those who have entered the scientific field to produce results unhindered by the tip-toeing we cause as a society. Which moves haven't been taken in the field of research because "bold" is commonly and ignorantly mistaken for "reckless?"