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. 

If 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):

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.”