I don’t review most of the movies I watch these days, but I do review some and I rate all of them on IMDB. Anyway, this isn’t my review, it’s Debi’s. If you’re familiar with the premise of Lorenzo’s Oil, you can skip to Debi’s review. If not, here’s the quick of it:

A boy named Lorenzo is diagnosed with adrenoleukodystrophy, a nuero-degenerative disorder that ultimately leads to death. His parents, who are not scientists, are frustrated by the lack of research and information on the condition, so they hit the books and come up with a special mix of oils that seem to help. The movie is based on a true story.

So, why the review? Well, Debi, as you may well know, is a genetic counselor. We picked up the movie because she wanted to know a bit more about this condition and had heard of the movie from some of her patients (the condition is genetic). Besides Nick Nolte’s awful portrayal of an English speaking Italian and Susan Sarandon successfully portray a real bitch of a woman, the acting isn’t too bad (especially the boy who played Lorenzo). But the movie has some serious, serious problems. With that introduction, here’s Debi’s review:

I had heard that Lorenzo’s oil was no silver bullet, but wanted to know for myself because it was referenced on a listserv of one of the patient support groups for a different genetic condition. Someone was using it to spur parents on to help find their own cures. The parent was frustrated and felt the doctors working on that condition didn’t care enough about the patients and were not doing anything to find a cure for the condition. The parent started giving her kids vitamin supplements and swore that they did amazing things. I understand parents’ frustration when there are no answers, but I don’t think it is fair to state that physicians do not care. What really bothered my about the statement from the listserv is that the parent was making an unfounded claim: I can’t say one way or the other whether the vitamins help because there have been no randomized controlled trials, which brings me to my first point about Lorenzo’s Oil:

  • I agree that Lorenzo’s oil is a “story of high hopes that a cure for an awful disease was at hand in Lorenzo’s oil… A side-effect was to make randomised trials impossible, so that a decade and more on we’re still guessing whether this treatment has any benefit for anyone with this condition. It is not possible to say that it does. It is possible to say that it does not, at least for patients with established neurological symptoms.€

Let me explain. Because of the publicity and approach of Lorenzo’s parents, the Odones, most kids diagnosed with adrenoleukodystrophy end up on the oil. Because it is not possible to compare their outcomes with outcomes of people not on the oil supplement, it cannot be stated for certain that the oil helps. It seems to, but without a double-blind, controlled, scientific study, that is not something you can say with 100% certainty.
This answers the question I had as to why Lorenzo’s oil has not been approved by the FDA. (Until it is approved, availability is limited and insurance often does not cover the cost because it is considered experimental). There is not enough clear evidence for how well it works. The limited research that has been done supports the following (for details see the link above):

  • Lorenzo’s oil rapidly reduces very long chain (C26:0) fatty acids in plasma to normal or near normal levels.
  • Very long chain fatty acids in the brain appear unaffected in postmortem studies (probably because of the blood brain barrier).
  • In patients with neurological symptoms, use of Lorenzo’s oil is not associated with any reduction of symptoms or delay in disease progression.
  • There is limited evidence that use of Lorenzo’s oil in asymptomatic disease carriers may (repeat MAY) reduce the onset of symptoms.

Now as long as something is not harmful (though there are many ways something can be harmful including physical harm, emotional harm due to false hopes, and even financial harm), I am not necessarily against it, even if it has not been rigorously proven. What I do have a problem with is that the movie Lorenzo’s oil vilified those people who raised concerns about the possible harm. This brings me to my second and final concern with the movie:

  • Lorenzo’s oil, the movie, is harmful to science and medicine because it vilifies people who are trying to protect others.

There are several scenes in the movie in which the Odone’s are portrayed as the heroes while the doctors and the people who are listening to the doctors are villified. The doctors are portrayed as being solely interested in studying the children with the disease and not curing them. Additionally, the doctors and scientists are portrayed as not working very hard on a cure and are hesitant to accept the findings of the Odones. This is particularly irksome because science is, by its nature, skeptical. That is what makes it such a powerful tool. It basically says, “I won’t believe what you say until you can prove it. And, you have to play by my rules – because these rules actually result in proof.” The movie presents a one-sided critique of that model without pointing out all of the amazing benefits to human society that have resulted from the scientific approach to studying our world and ourselves. Additionally, the doctors wanted to help and protect people and did not want to provide them with false hope, which is kind of what the Odones did with their approach.
In short, while the movie is both provocative and touching, it does a disservice to science by negatively portraying the standards employed by science in conducting research. Sure, it’s an interesting story, but it’s also misleading and disingenuous.