Cholesterol gene hype: “cure…stopping the biggest killer on earth”

Step outside pandemic news coverage for a moment and get re-introduced to incredible hype of non-pandemic news.

MIT Technology Review posted this headline:

In the article, the CEO of the biotech company doing the study was quoted saying:

“If this works and is safe, this is the answer to heart attack—this is the cure,”

Those are some mighty big IFs touted within the first 150 words of the story. Mighty big IFs in one breath to be talking in the next breath about cure and stopping the biggest killer on earth. Why should there be more caution up high in the story – and throughout the story?  Because it’s about the very start of a human trial. There are no results yet – about safety or efficacy.

The Boston Globe included some scientific skepticism in its story.  Excerpt:

Jennifer Doudna, the University of California Berkeley scientist who co-invented CRISPR in 2012, said that while base editing “works very well in research settings,” and could be fine for disrupting genes, she doesn’t think it currently has the precision needed to correct mutations. Base editors often edit other DNA letters around the single letter that you want to edit, she said. “So that means you end up usually getting more editing than you might want.”

But the hype didn’t simply begin on the first day the first experimental subject was injected  Two months ago – before the trial even began – Bloomberg Businessweek headlined a story about this research: “Putting an End to Heart Attacks by Editing Human DNA.”   With its business focus, the article included this economic projection:

So far, analysts forecast that Verve’s therapy will cost from $50,000 to $200,000 per patient. Companies rarely reveal much about pricing before their products hit the market, but (the company CEO) says the estimated range is “a reasonable starting point.”

And two years ago, the New York Times, which often seems to have a love affair with the cure word, headlined a story about this early research, “A ‘Cure for Heart Disease’? A Single Shot Succeeds in Monkeys.”

Some journalism is certainly fueling the flames of potential markets for such a therapy – if, indeed, it is ever shown to be a therapy – if it is ever shown to have any human therapeutic effect.

Just think about how many people with heart disease in their families have been calling their doctors about this barely-on-the-horizon hype or hope.  I hope for good things for them, but I feel for them if they are led down the boulevard of broken dreams. It doesn’t have to be this way. Patients should look for journalism that, among other things:

• Emphasizes the extremely preliminary stage of this research (e.g., that there is no evidence at this time of benefit or safety for humans);
• Reminds readers what a leap often occurs between laboratory research and animal research and human research;
• Places as much or more emphasis on what isn’t known – and where the uncertainties lie – as it does on projections of cures;
• Reflects an understanding of, and a sensitivity about, the impact of such news stories on people with serious illness.

This is a vitally important field of research.  Sound, replicable findings don’t require sensational descriptions; their data tell the story.  Such data doesn’t exist yet on this story.