What the media got wrong about Jimmy Carter’s cancer “cure”

The following guest post is by Harold DeMonaco, a long-time contributor to the blog and one of our most prolific story reviewers. 


Jimmy And Rosalynn Carter Take Part In Habitat For Humanity Carter Work ProjectIf you watched or read the news this week, you probably heard a story about former President Jimmy Carter’s ongoing battle with metastatic melanoma. He was diagnosed this summer with lesions in his brain and liver. Since his announcement, he has undergone surgery to remove the lesion in his liver, brain irradiation, and treatment with a newly approved immunologic drug called Keytruda. On Sunday morning, he told his bible class, “My most recent MRI brain scan did not reveal any signs of the original cancer spots nor any new ones.”  For Mr. Carter and his family, this is wonderful news. His cancer was caught early with the detection of a single lesion in his liver that was operable and several small brain lesions. Technically, Mr. Carter is in remission. We can all hope that his continued treatment with Keytruda will prevent additional lesions from appearing. Importantly, Mr. Carter did not use the word “cure.”

The media picked up on the news very quickly and with the usual unfortunate headlines. “How a new therapy kicked Carter’s cancer “ from CBS News, Here’s a look at Keytruda, the drug Jimmy Carter said made his tumors vanish from NBC News, “Jimmy Carter is ‘cancer free’: Miracle or just science?” from CNN, and former President Jimmy Carter Says He Is Free of Cancer from The New York Times.

These three are just a sample of the media’s attempt to characterize what Mr. Carter said. NPR was one of the few media outlets that provided some semblance of realism to the otherwise over- the-top headlines with “Why cancer is gone discourse does not help cancer patients.” Similarly, Time provided its readers with a wonderful clarification on what it means when the cancer is undetectable. But our friends from the other side of the pond at The Guardian had perhaps the most outrageous headline, New immunotherapy drug behind Jimmy Carter’s cancer cure. Admittedly, some of the reports did provide a bit of clarification in their body text, The Guardian included. But the question I have is, Why write a headline that doesn’t really match the facts?

Keytruda was fast-tracked and approved by the FDA in 2014 for the treatment of melanoma. Melanoma is the most lethal form of skin cancer, killing approximately 10,000 Americans annually. Here is part of the FDA news release discussing Keytruda’s approval from September 2014: “Keytruda’s efficacy was established in 173 clinical trial participants with advanced melanoma whose disease progressed after prior treatment…In the half of the participants who received Keytruda at the recommended dose of 2 mg/kg, approximately 24 percent had their tumors shrink. This effect lasted at least 1.4 to 8.5 months and continued beyond this period in most patients.”

I have underlined a couple of important parts of the statement in the preceding paragraph. The first is that the drug was used in the clinical trials in only 173 subjects — a very small sample — prior to approval. The second point is obvious. The follow up was rather brief ranging from 1.4 to 8.5 months. But there is more to the story. The Keytruda website provides the following statistics on 89 additional melanoma patients (click for a larger view):

keytruda

 

 

 

 

 

So, the bottom line is that 18/81 subjects in this clinical trial had a response (partial or total) that lasted from 6 to 36 weeks. Seventy-six percent did not respond. The results that Mr. Carter has achieved, unfortunately, are not necessarily representative of what the typical patient can expect.

What’s more, as NBC pointed out in its coverage, there’s no way of knowing whether it’s the drug or the radiation therapy and surgery that cleared all detectable traces of President Carter’s cancer. MedPageToday drove this point home with a number of quotes from cancer experts, including this one from Vernon K. Sondak, MD, of Moffitt Cancer Center in Tampa, Florida.

“If I had a patient of my own with four small brain mets [metastases] undergoing [stereotactic radiation therapy], I would tell them that I fully expected the radiation to take care of those four lesions. The fact that President Carter reports that it has done just that is not a surprise to me at all.”

Keytruda deservedly obtained fast track approval for melanoma, a disease that has defied standard treatments. The results in the clinical trials are important as they provide a potential new approach to an otherwise devastating disease. There is really no need for hyperbole, and yet the media seemed insistent on highlighting Mr. Carter’s “cancer-free” status and attributing that status to the new wonder drug. The reality is that while Mr. Carter’s cancer is not detectable, it’s certainly possible if not likely that traces of the cancer remain and could return.

Perhaps the difference between “cure” and remission is just not well understood in the media?   If that’s the case, here’s how the National Cancer Institute clarifies those two terms:

  • “Cure means that there are no traces of your cancer after treatment and the cancer will never come back.”
  • “Remission means that the signs and symptoms of your cancer are reduced. Remission can be partial or complete. In a complete remission, all signs and symptoms of cancer have disappeared.”

Of course, it’s also possible that some of these headlines represent a willful misrepresentation of the truth by the media in order to boost readership. Nigel Hawkes, a freelance health reporter, hinted as much when he spoke at  The Lancet Health of the Nation Summit in 2009.

“It is not our job to satisfy you [meaning those on the podium representing medicine] but to keep our readers reading and our viewers viewing,” he said. “The more responsible the press becomes, the less readers seem to like it.”

The NPR commentary by Barbara King referenced earlier should be read by every journalist who posted a story about Mr. Carter’s treatment and by every editor who insisted on a using a headline that did not match the reality.

As King, a cancer survivor, points out, the “celebratory responses built around Carter’s cancer being ‘gone’ are in real danger of swamping an accurate understanding of cancer biology and of what many patients experience as they cope with cancer or cancer recovery.”

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Comments (14)

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Charles F. Wetter

December 11, 2015 at 11:56 am

Having treated cancer patients for many years I often dealt with the question ” am I cured?”
My standard answer was that I will pronounce you cured when you die from somthing else.

Joe Rojas-Burke

December 11, 2015 at 4:41 pm

What’s crazy is we still don’t even have any evidence of a survival benefit for pembrolizumab. Its approval was based on surrogate endpoint, which is no guarantee that the drug improves survival or alleviates symptoms. The package insert even says: “An improvement in survival or disease-related symptoms has not yet been established.”

In a recent analysis of cancer drugs approved on the basis of a surrogate endpoint, Kim & Prasad were unable to find evidence of a survival benefit for 57 percent, even though many of the drugs had been in use for more than four years. (JAMA Intern Med. 2015;175(12):1992-1994)

Peter F. Garrett

December 13, 2015 at 2:52 pm

I direct communications at the National Cancer Institute, and appreciate your analysis of this widely covered news story. We strive to help journalists and the public understand the science behind this type of news. I welcome any ideas for how we can do a better job.

Laurence Alter

December 14, 2015 at 8:09 am

….and what is your NON-standard answer? (!)
Laurence Alter

Sandra Spivey

December 14, 2015 at 11:04 am

I’m glad that there is a group like “Health News Review” to examine how the media can misrepresent diseases and treatments. With any stage IV cancer, there is no cure – the best you can get is to have scans that don’t show tumors (cancer tumors have to have about a million cells to show up on scans), Although I’m sorry that President Carter was diagnosed with late stage melanoma, I wish the media would do their homework before writing articles like they did. For those of us with stage IV cancer, it’s very disturbing that our condition is misrepresented as it gives false hope to ourselves, our friends, and our families.

Elaine Schattner, MD

December 14, 2015 at 11:19 am

Appreciate the clarification of cure vs. remission. But I don’t think any physician would state, as said here: “His cancer was caught early with the detection of a single lesion in his liver that was operable and several small brain lesions.” That is an example of late detection, with mets.

Dr Dermot Stokes

December 14, 2015 at 4:20 pm

You say: “But the question I have is, Why write a headline that doesn’t really match the facts?”
Sadly, headlines are generally written by sub-editors who scan the article and look o fins a reader-oriented angle for the heading. They either can’t or don’t have time to understand what’s actually being said. Happens all the time and health and science reporting is often seriously distorted as a result.

Dr Dermot Stokes

December 14, 2015 at 6:14 pm

Corrected version! You say: “But the question I have is, Why write a headline that doesn’t really match the facts?”
Sadly, headlines are generally written by sub-editors who scan the article and look to find a reader-oriented angle for the heading. They either can’t or don’t have time to understand what’s actually being said. Happens all the time and health and science reporting is often seriously distorted as a result.

Tabitha Powledge

December 14, 2015 at 7:01 pm

About those headlines: The journalist who writes the story rarely writes the heds too. Which helps explain why heds are so often misleading even when the story is OK. And why we journalists so often cringe when we read what’s atop our stuff.

Peggy Zuckerman

December 14, 2015 at 7:20 pm

As a patient advocate, especially interested in immune therapies after my own return to “No Evidence of Disease” post a Stage IV diagnosis of kidney cancer with a large tumor and 100s of lung metastases, I both celebrate the reported success of Keytruda and caution that the celebration might be out of place! At the same time, I know that my own eleven years of NED are not considered a proof of a cure, but do know that the several years in which I grew my tumor and my metastases, I did not know I was ill! The language that most people speak and the language of the medical world are really different dialects, with the doctors having forgotten too often how to speak plainly and effectively with patients. THus, I am not surprised that both headline writers and reporters cannot properly tell this kind of story in any nuanced way.

But these announcements of miracle cure and silver bullets, quickly yanked away by the next breathless announcements cause a great rift in the trust patients have for the medical system.

Gary Schwitzer

December 15, 2015 at 7:23 am

Tabitha,

Thanks for your comment. Headlines were just part of the problem with much of this story coverage, as DeMonaco explained in his blog post. It was what was reported (or not) in the body of many of the articles that also failed to deliver important context. So much goes wrong so often when we start talking about cures, and especially, it seems, when it involves celebrities.

I especially appreciate Peggy Zuckerman’s patient perspective, left in a comment above.

Gary Schwitzer
Publisher

Will Wiegman

December 15, 2015 at 8:11 am

Everyone needs to get a grasp on the importance of Thiocyanate and how it’s metabolic precursor is being processed out of our food, and feeds too.
http://www.pnas.org/content/106/48/20515.long

Donald D'Angelo

December 24, 2015 at 7:55 am

I just completed a successful course of treatment for my melanoma with the yervoy/optivo combination. I am now in the “durable response” stage. Wouldn’t the Carter prognosis been better explained using this phrase?

Howard

December 27, 2015 at 12:35 am

Also take into account that the report comes from Jimmy Carter himself and not his physicians.