“A cure for type 1 diabetes? For one man, it seems to have worked,” read the headline in the New York Times on November 27, 2021.
It may have reminded oldtimers 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 predictions that a cure for cancer was imminent in 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, just as cancer research was reported 3 decades ago.
But it is the framing and emphasis of the journalism of a leading science journalist on a leading newspaper that requires scrutiny. It has an impact on readers and on sick people that can cause harm by promoting false hopes of extremely preliminary research.
Kolata sometimes acts as the Times ‘science journalistic version of the Times’ former weapons of mass destruction storyteller Judith Miller.
In the history of diabetes, as in other Kolata stories, there is a bid for 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 who dare to hope that help can come to many of the 1.5 million Americans who suffer from Type 1 diabetes. “
Before projecting 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 experiment. There were no such details in the story, nor will there be pervasive details for others to scrutinize for some time, as the proclaimed result has not been published in a peer-reviewed journal.
First, deep down in the story, there was some meaty caution focusing on the effect 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 a break. “We need to carefully evaluate the balance between the burdens of diabetes and the potential complications of immunosuppressive medication.”
These two small sentences appeared 1,700 words deep in a 2,000-word story – hardly a place where the author or her editors highlighted them.
Twitter went crazy with the news. Understandably, people with type 1 diabetes were thrilled. Warnings were tossed aside on social media by patients, doctors, researchers and other journalists who helped spread the Times story. Just a few examples of Twitter comments:
- Amazing.
- That’s pretty incredible news.
- All of this is the potential cure that T1 diabetics have been dreaming of for decades.
- This is the closest science has ever come to a cure.
- What a relief this will be for the 1.5 million people with type 1 and their loved ones.
- THIS.IS.HUGE (from an MD)
- Potentially 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 have been told that there is a cure on the horizon every year for the last 25 and when you get a price on the insulin you need to live.
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Sorry I’m not more hype about the “cure” – you’re free to celebrate, but I’m busy fighting to make sure I can live to tomorrow.
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Bottom line – do not spread misinformation that there is a cure for an incurable disease @nytimes et al. Not for clicks, not for Vertex PR. The psychological damage for those of us with diabetes is incalculable.
Other skepticism from others on Twitter:
– I have only been dealing with my son’s diabetes for 3 years and I am already tired of the ‘cure’ on the horizon.
-There is no cure for type 1 diabetes. However, there is ample opportunity for clickbait. (from a registered dietitian)
-I have avoided that article and my family has apparently been told that I will not believe anything from non-medical publications. So I only learned today that it was one of those lifelong immunosuppressive “cures”.
-I have been fed the same hook of “a cure is just around the corner” followed by another line since I was first diagnosed in the early 90’s.
There is a better way for journalists to tell the story of this important research. Better journalism may help readers and sick people find a better way of thinking about research, its potential and restrictions, and to launch a better public dialogue on research.
Journalists and editors of the New York Times could / should be leaders in that direction. They should listen to and act on the criticism that arises from the patient’s voice. Or they could continue their pattern of sometimes harmful hype, a long-established pattern that is not hard to change. Kolata has undoubtedly worked with several editors over the years. She and they must work together to get better – continuously.
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