While I’m working on a grant proposal to keep this project alive, my publishing efforts have fallen off a bit. But it’s comforting to know that somebody else is doing some watchdog work – somebody like Paul Raeburn at the Knight Science Journalism Tracker.
This week he wrote, “Cystic fibrosis breakthrough, or Wall Street coup?”
The gist: a drug company releasing study results via news release…and via a restrictive agreement between a reporter and the company, restricting whom the reporter could talk with in order to get the data. The news drove the company’s stock up 40% on the NASDAQ. Raeburn estimates that the drugs in question could cost $250,000 per patient. He concludes:
“It’s clear that this research was a huge success for the company’s shareholders. What’s less clear, partly because of the restrictions on the reporting, is exactly how helpful it might one day be to the multimillionaire cystic fibrosis families who can afford it, or whose insurance companies pay for it.”
Recently, Raeburn also wrote – ” ‘Potentially offering the first new class of drugs…’ How often have we written that?”
In that piece, he questioned an approach that Gina Kolata of the New York Times took in a story, and reflected on the fact that he’d done the same earlier in his reporting career.
Kolata wrote about new findings “potentially offering the first new class of drugs to combat heart disease in decades, experts say.” He continued:
“Care to hazard a guess at where that prediction will be in 15 years?
She included the usual escape clause, writing that “experts caution that drug development takes years and that there are no guarantees that new treatments will work as hoped,” which I did in my story, too. That story ended with, “Of course, whether the success in mice will be repeated in human beings is an unanswered question.”
Both stories were accurate, at least with regard to their forecasts. We said the research might lead to new drugs, and we cautioned that it might not.
But is this good enough? What Gina and I did in these stories–and what many of us have done in countless other stories–is to promise and then immediately renege on those promises. …
I think we need to step away from the boilerplate promise-and-unpromise paragraph that we’ve written so often, and query researchers more carefully about exactly how and when their research might lead to new treatments. What problems remain to be solved? What are the potential side effects? How much might it cost? Would the FDA be likely to approve it? Does it raise ethical questions?
We have to report the news, of course, but we might spend a few paragraphs raising and attempting to answer these questions, with the aim of making a more meaningful prognostication than simply “might lead to new treatments.”
We owe our readers that.”
The suggestions he makes are some of the same we’ve made over the past 8 years of reviewing thousands of health care news stories. It’s nice to hear another voice regularly trying to improve the public dialogue.
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