Cure for Type 1 diabetes? We’ve been down this road before with NY Times

Gary Schwitzer is the founder and publisher of HealthNewsReview. He has covered health care news almost exclusively since 1973. Here is his online bio.  He tweets as @garyschwitzer or as @HealthNewsRevu.

It may have reminded old-timers of another story by the same reporter, Gina Kolata, on the front page of the Times 23 years ago, on May 3, 1998, which included unchallenged projections that a cure for cancer was imminent within two years. At the time, the National Association of Science Writers published an analysis of her story, with this composite image of the Times headline and others.

I emphasize that the diabetes research in question is fascinating and important, as was the cancer research reported 3 decades ago.

But it is the framing and the emphasis of the journalism by a leading science journalist at a leading newspaper that demands scrutiny.  It has an impact on readers and on sick people that may cause harm by promoting false hope about extremely preliminary research.

Kolata sometimes seems like the Times’ science journalism version of the Times’ former weapons-of-mass-destruction storyteller Judith Miller.

In the diabetes story, as in other Kolata stories, there is a suggestion of an imminent weapon of mass destruction against a widespread disease.  She wrote that the first subject in a small 17-person five year trial “may be the first person cured of the disease with a new treatment that has experts daring to hope that help may be coming for many of the 1.5 million Americans suffering from Type 1 diabetes.”

Before one should project from an early result in one person to the hopes of 1.5 million Americans, it would help to learn something about what has been observed in the other 16 people in the trial.  There was no such detail in the story, nor will there be reviewable details for others to scrutinize for some time, since the touted result has not been published in a peer-reviewed journal.

Not until deep in the story was there any meaty caution, focusing on the impact of the immunosuppression that is part of the treatment.

But Dr. John Buse, a diabetes expert at the University of North Carolina who has no connection to Vertex, said the immunosuppression gives him pause. “We need to carefully evaluate the trade-off between the burdens of diabetes and the potential complications from immunosuppressive medications.”

Those two little sentences appeared 1,700 words deep in a 2,000 word story – hardly a place of prominence or emphasis by the writer or her editors.

Twitter went nuts with the news.  Understandably, people with Type 1 diabetes were excited.  Caveats were cast aside on social media by patients, physicians, researchers and other journalists who helped to further disseminate the Times story.  Just a few examples of Twitter comments:

  • Amazing.
  • This is pretty incredible news.
  • y’all this is the potential cure that T1 diabetics have been dreaming about for decades.
  • This is the closest that science has ever come to a cure.
  • What a relief this will be to the 1.5 million people with Type 1 and their loved ones.
  • THIS.IS.HUGE (from an MD)
  • Potential major breakthrough (from a PhD)

But some strong patient voices breathed a different reality into the exuberant atmosphere.

Laura Marston, who has lived with Type 1 diabetes for 24 years, and who describes herself as an advocate for lower insulin prices, criticized the Times on Twitter.

In other Tweets, Marston wrote:

Hope is lost when you’ve been told there’s a cure on the horizon every year for the past 25, and when you’re price gouged for the insulin you need to live.

-0-

Sorry I’m not more hype about “the cure” – you’re free to celebrate but I’m busy fighting to ensure I can live til tomorrow.

-0-

Bottom line – don’t spread misinformation that a cure exists for an incurable illness @nytimes et al. Not for clicks, not for Vertex PR. The psychological damage to those of us with diabetes is incalculable.

Other skepticism from others on Twitter:

– I’ve only been managing my son’s diabetes for 3 years and I’m already tired of the ‘cure’ on the horizon.

-There is no cure for type 1 diabetes. There is plenty of opportunity for clickbait though. (from a registered dietitian)

-I have been avoiding that article and my family evidently has gotten the message that I won’t believe anything from nonmedical publications. So I only learned today that it was one of the lifetime immunosuppressant “cures.”

-I have been fed the same hook of “a cure is just around the corner” followed by a different line since I was first diagnosed in the early 90s.

There’s a better way for journalists to tell the story of this important research. Better journalism might help readers and sick people find a better way to think about the research, its potential and limitations, and to start a better public dialogue about the research.

Reporters and editors at the New York Times could/should be leaders in that direction. They should listen to, and act on, the criticism that concerned patient voices raise. Or they could continue their pattern of sometimes harmful hype, a long-established pattern that is not difficult to change. Kolata has undoubtedly worked with multiple editors through the years. She and they must work together to improve – continuously.

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