Decoding Health Care

Part 32: The media and medicine

When I was in practice, I hated going to the office on Monday. Why? It signaled the end of the weekend. It was always overbooked. Patient problems that had simmered all weekend needed to be addressed. And 60 Minutes had aired Sunday night.

I like 60 Minutes. My wife and I watch it most every Sunday night. As many of you know, medical segments are fairly common, particularly segments concerning cancer. And hyperbole is the order of the day. When patients see these segments they naturally want to discuss them.

60 Minutes’ treatment of cancer topics is emblematic of what’s wrong with how the media approaches cancer. Let me give you a concrete example. In 2015, 60 Minutes aired a segment about a breakthrough therapy to treat glioblastoma using the poliovirus (https://www.cbsnews.com/news/polio-cancer-treatment-duke-university-60-minutes-scott-pelley/). In its typical breathless style, it portrayed a novel therapy as all but vanquishing this difficult to treat brain tumor. What it failed to adequately explain was that this was an extremely early stage trial. The segment described heartwarming anecdotes of the successes. If you were a glioblastoma patient, this could only be viewed as a godsend. But it really wasn’t.

Ten years later poliovirus hasn’t been approved to treat glioblastoma. In fact, only a year after the 60 Minutes episode, Forbes called 60 Minutes out for the inaccuracy of the report (https://www.forbes.com/sites/arleneweintraub/2016/05/16/what-60-minutes-still-isnt-saying-about-the-miracle-glioblastoma-drug/). There are still ongoing trials of poliovirus (among other viruses), some combined with immunotherapy. In all fairness, this treatment was given “breakthrough designation” by the FDA, which is a particular regulatory pathway to FDA approval, but that doesn’t mean it’s a breakthrough for patients.

In my clinic the next day there was a lot of talk about this “breakthrough”, and it wasn’t just about brain tumors. I did not take care of many glioblastoma patients but I imagine what the discussion with them might have been like: Can I go to Duke? Can I be cured? Why didn’t you tell me about this?

Every week the mainstream media is full of articles about the newest and greatest information concerning common and often fatal diseases. These reports are invariably short on details. But they are big on promises. They do not require much in the way of medical sophistication. All they require is a medical unmet need. And hope.

With respect to medical topics there are four basic types of media reports. The first is the “press release”. Press releases basically regurgitate some “facts” that have been fed to the mainstream media. These might come right after a big medical meeting, for example. The American Society of Clinical Oncology holds it’s national meeting the first weekend of June each year and after each day of that meeting issues a quantum of press releases. It’s not because we had a good weekend fighting cancer. It’s because these stories grab the public’s attention.

Some of these press releases come from the pharmaceutical industry at predetermined evaluation time points in a drug’s development. They frequently trumpet “promising results”. In many ways, these are designed to satisfy the investor community. They usually have little or no scientific merit. There is certainly no peer review. They may or may not stand the test of time. But I assure you that both patients and doctors watch them closely and grant them unwarranted significance.

The next category of media focus involves causes of cancer. These reports usually attach a certain risk to environmental factors. They are usually very large observational studies. Recently the impact of alcohol intake on cancer risk has received an insane amount of attention. These reports can be very disturbing, especially if you are someone who has cancer. Did that glass of wine with dinner cause my breast cancer? Of course the interpretation of these studies is complex and nuanced. The impact of alcohol consumption and cancer risk has been studied (and debated) for decades. But you are not likely to get that from these press reports.

I remember a particularly and spectacularly flawed report from 1981, when I was in medical school. It was reported that drinking coffee increased your risk of pancreas cancer (https://www.nejm.org/doi/full/10.1056/NEJM198103123041102#:~:text=Since%20no%20association%20was%20observed,not%20differ%20significantly%20from%20unity.). That report certainly caused quite a stir. It was a newspaper headline and made the evening news. But it was wrong. The study was retrospective and did not control for a number of other important risk factors. Many subsequent studies have refuted those findings. The incorrect conclusion was directly a consequence of limitations of the study design. As Rosanne Rosaneadanna might say, “Never mind”.

Patients often get extremely upset by these reports. They are a topic of frequent conversation in the exam room. Many of my patients with breast cancer would ask me if they should stop drinking. I attempted to be practical. I answered that alcohol probably increased cancer risk a little, that less is better than more, but that the impact on any individual person’s risk was probably very small (and often influenced by many other factors). But I always added that nobody knows for sure. You don’t get that kind of nuance from the popular press. And there will certainly be a proliferation of reports on what causes cancer in the era of artificial intelligence.

The third type of media report focuses on a single individual’s cancer journey. Sometimes these are stories of people who live around the corner. They are often either very sad or very uplifting. The grind of being a patient with cancer isn’t usually captured. But sometimes the patient in question is a celebrity. These stories can be either very inspirational or maddeningly inaccurate or confusing.

For example, the story of North Carolina State basketball coach Jim Valvano and his struggle with lung cancer was inspiring. And his legacy is the Jimmy V foundation, a well known cancer research organization supported by folks who may not usually think a lot about cancer, i.e. athletes and sports fans. Another great example is Jimmy Carter and his courageous acceptance of his mortality from advanced melanoma and his enthusiastic support of palliative and hospice care. Jimmy Carter did more for hospice than anyone since Dame Cicely Saunders.

Unfortunately, there is a not so great side to the celebrity cancer story. The number of times a celebrity is found to have incurable cancer states publicly, “I am going to beat this” is mind numbing. My patients with the same diagnosis (after getting a totally different prognosis from me) would ask why that celebrity was winning and they were losing the battle. I understand it is human nature to be hopeful. But it doesn’t warrant national coverage.

What’s more, those celebrities who reject conventional therapy in favor of an untested cancer treatment and then shout about how effective that therapy was and how well they are doing do not, in my opinion, deserve the time of day. They are free to choose whatever treatment they like. They do not have the right to create doubt in those who choose a more conventional course. The media should recognize that there are never adequate details about that celebrity’s case to allow anyone to draw a conclusion about its effectiveness. Better not to give them a podium.

The final category is “investigative journalism”. I would probably put the 60 Minutes pieces in this category. These pieces do (to a greater or lesser extent) some degree of research on the topic. As a consequence, they wish to be perceived as authoritative. They scream “We are legitimate”. Sometimes they are and sometimes they are not. Sometimes they are driven by an agenda (which becomes problematic).

The best examples of high quality investigative journalism include the coverage of the opioid crisis and the Theranos fraud. Patrick Radden Keefe wrote an article in 2017 for The New Yorker entitled, “The family that built an empire of pain” about the Sackler family and their role in the opioid crisis. He subsequently wrote a book about this subject, “Empire of Pain”. This book is an amazing narrative of the origins of the opioid epidemic. It is, in my opinion, a must read. It sets the standard for investigative journalism.

Equally compelling was the reporting by John Carreyrou of the Wall Street Journal which uncovered the scam perpetrated by Elizabeth Holmes and Theranos. In a series of articles and then a book, “Bad Blood: Secrets and Lies in a Silicon Valley Startup”, Carreyrou methodically tells the story of Theranos through the lens of the distorted world of Silicon Valley startups. In my opinion, this is another must read.

The findings of both Keefe and Carreyrou literally appear in the civil and criminal court documents of trials against Purdue and Theranos. Both are fascinating stories. Both are meticulously researched. Neither is overtly biased. But all investigative journalism isn’t quite so thorough, and I recently read a piece that failed because it was clearly agenda driven. It aggravated me because it discussed a topic I know a little about, the controversy around the use of erythropoietin in cancer patients. This is where we will continue the discussion in part 2.