Charismatic megadiseases

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Here’s a scenario for you: let’s assume you’re someone who believes that global warming is an imminent threat facing our planet. You’re talking to someone who believes that global warming exists, but doesn’t think it’s that big a deal. Your job is to convince them.

Here’s the question: when trying to convince them, would you use this picture of a polar bear?

It’s a tough question. 

On the one hand, this is a dramatic picture. It’s hard not to feel a little sad looking at it. Polar bears are charismatic creatures, especially polar bear cubs. And it’s easy for a viewer to imagine themselves in that same situation, irrational as that might be. A lot of people do become passionate about global warming because they think humanity is going to have as much trouble as polar bears in the near future.

On the other hand, this picture is so dramatic and stark that it threatens to erase everything else. In reality, polar bears are one species affected by global warming. Interventions to improve the lot of polar bears might not be effective interventions for all species affected by global warming, and there might be a more rational way to think about a cost-benefit analysis with regards to how much money we should spend saving the polar bears. Last, it’s nice that people worry about polar bears, but the climate change dangers that face polar bears aren’t actually the dangers that face humans. Our food supply chains are much more resilient than those of the polar bear.

This is the dilemma of the scientific communicator. Polar bears are what’s known as charismatic megafauna (i.e. “charming big animals”). When used sparingly, charismatic megafauna are very effective ways of getting the public interested in otherwise uninteresting environmental problems, like using the plight of the orangutan to get people interested in deforestation caused by palm oil plantations. However, the focus on these animals risks making people mistake the map for the territory, and judge any solution to these problems on whether they solve the issue for the megafauna.

Diseases face the same issue. Without looking it up, what do you think is the deadliest form of cancer? Take a second, then look at the figure below.

Does this surprise you? Colon cancer, stomach cancer, and liver cancer are all deadlier than breast cancer.

Meanwhile, the only cancers that I personally have been warned about as a relatively young guy are testicular cancer and melanoma, both of which are way at the bottom of the list.

Some of this can be explained by cancer prevalence, which does have breast cancer at the top.

That still doesn’t explain why there are multiple videos on Youtube with millions of views showing young men how to check for testicular cancer, and no videos with more than 250k about stomach cancer.

The best explanation that I can come up with is that breast cancer and testicular cancer are more charismatic diseases than colon or stomach cancer, with more charismatic figureheads. When you think breast cancer survivor, you think of women dramatically posing with their scars. When you think testicular cancer survivor, you think of Lance Armstrong, and how his career was tragically cut short by him being a jerk. But, you don’t really get anything like that for colon cancer.

And so, if you’re an advocate trying to get the government or nonprofits to pay more attention to cancer (not that you really need to), you run into the same problem as the global warming advocates. Do you bring up breast cancer or testicular cancer?

On the one hand, breast cancer and testicular cancer advocacy drives a huge amount of attention and money to cancer research. On the other hand, these cancers are so charismatic that shady organizations (like Susan G. Komen) and questionable interventions (like universal mammograms) can flourish under the idea “if it just saves one woman from breast cancer”, to the neglect or detriment of other, better priorities.

For me, working as an entrepreneur in the health space, this is an issue I have to confront constantly. I’m developing extended-release versions of immunosuppressants, and immunosuppressants are drugs that have definitely positive effects on largely non-charismatic diseases (like immune-related hives a.k.a. chronic spontaneous urticaria) and potentially positive effects on very charismatic diseases (like dementia).

So, in my fundraising and public communication (like this one), I constantly have to balance these competing concerns. On the one hand, discussing dementia is exciting, and a good way to raise money. On the other hand, making a lot of my communication about a charismatic disease means that people might judge me by whether I cure that charismatic disease, whether or not I’m successful with the less charismatic diseases. This was a lesson that Moderna learned the hard way, as they repeatedly failed their targets prior to 2020 despite making real advances, and were subsequently publicly compared to Theranos.

Charisma is a double-edged sword.