[Update 7/3/2013: Bonnie Rochman of TIME magazine wrote a very nice story in February that not only scooped Today by months but also answered the questions I raised. If you were intrigued by this story, as I was, it's worth your time to go back to Rochman's piece.]
Even morning television has a tough time screwing up a story such as this one, but NBC's TODAY could have asked a few more questions than it did on what could have been a very good medical story.
Two boys, Max, 11, and his brother Austin, 14, have Duchenne muscular dystrophy, a fatal genetic disorder marked by muscle weakness that worsens as they age. But that's not the story. The story is that Max is part of a study of an experimental drug that is producing dramatic improvements in his ability to move and to walk. Austin is not, and without it, according to the boys' mother, Jenn McNary, he will die in six or seven years. Austin, the study's directors said, was too sick to get the drug.
"Each day brings Jenn McNary another dose of hope and heartache as she watches one son get healthier while the other becomes sicker," TODAY contributor Linda Carroll writes in a blog post backing up the broadcast segment by NBC's Janet Shamlian.
Too sick to get the drug? Where was the follow-up question? Do viewers understand that studies often exclude people who are "too sick," because such people might not serve the aims of the study?
Neither the broadcast nor the blog post explains the unusual genetic situation responsible for the boys' illnesses. Apparently they each inherited a different, new mutation from their mother, although it's hard to be sure that's the case from what the story says. The blog post uses a faulty metaphor to try to describe how the mutations interfere with normal development; the broadcast segment doesn't attempt to explain the genetics. Nor does it attempt to describe how the drug, Eteplirsen, corrects the problem. The blog post tries and fails.
The drug's maker has attracted interest from investors, but TODAY doesn't mention that. It says that McNary is fighting for accelerated approval of the drug, so it can be given to Austin. But Shamlian does not say anything about whether Wall Street's interest could speed approval or hinder it.
But the most important question the story does not ask is this: Why did the drug maker not arrange to give Austin the drug on a compassionate basis? The FDA provides for exceptions in special cases, and this case–in which one son improves while the other deteriorates–would certainly seem worthy of an exception.
Did anyone ask the FDA whether the drug could be given to Austin? What did the FDA say?
All TODAY seems to care about are the "heartbreak and hope" line, and the few seconds in which Shamlian asks McNary what will happen to Austin if he does not get the drug. "He will die," she says.
As I said, the raw elements of this story are so good that TODAY did not manage to completely make a mess of it. But it could have done so much more. NBC badly needs to replace retired science writer Robert Bazell.
-Paul Raeburn
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