Livestrong's "cancerhacks" hashtag delivers terrible advice

The cancer organization dishes out buzzy, useless tips for people with cancer

By Mary Elizabeth Williams

Published November 20, 2013 8:23PM (EST)


If you were surveying Twitter's trends Wednesday, there at the top of the usual goofball list of topics like #youknowyoureamericanwhen, you'd have seen an unusual hashtag -- #cancerhacks. You may have thought, "This won't go well." And you'd have been correct.

In a misguided social media effort rivaled lately only by Lululemon, Livestrong decided to roll out its newest initiative in a breezy, buzzy manner. The concept itself is actually not bad: Asserting that "the focus on a future cure has held the cancer community back from finding needed solutions today," the charity is hoping to move focus toward creative, practical solutions for "improving day-to-day quality of life" for people living with cancer right now. That's a necessary and useful idea, because cancer, for the millions of us who've experienced it, is no abstract idea. It's exhausting, painful, isolating and often incredibly confusing terrain -- which is why it's heartening that some of the suggestions on Livestrong's CancerHacks page are genuinely helpful. Did you know there's an organization that offers free fly-fishing retreats for men recovering from all forms of cancer? Very cool. Have you considered recording your conversations with your doctors, so you don't miss any important information? Good idea. That Livestrong is sharing this kind of information is great. But I wouldn't go so far as to blithely refer to it as "daily cures," as Livestrong does, because I believe if you're a cancer organization you should know better than to rather arrogantly throw around the word "cure." It makes it seem like maybe Livestrong doesn't know what the word really means.

More distressingly, both the CancerHacks site and the #cancerhacks Twitter hashtag have quickly become a repository of bunkum, half-truths and flat-out insanity. Livestrong's No. 1 "cancer hack" is "Myth: You may get a placebo during a clinical trial Fact: You will receive the life-saving medicine you need." Oh, OK, I'll take the lifesaving medicine then! It's only when you click more deeply that Livestrong mentions little stuff like unknown outcomes and potentially dangerous side effects and the possibility of protocol randomization. And this gets my stabby feelings going because I am a runaway clinical trial success. I spend a lot of my time telling people about the incredible potential of clinical trials. And precisely for those reasons, I know that boiling the trial experience to an easy, seemingly sure-thing "hack" is grossly insulting and irresponsible. Other helpful hacks include platitudes like "Find the inspiration to beat cancer that works for you" and "Avoid letting cancer be the center of every conversation." What, no "Don't get cancer"?

Predictably, the helpful advice on Twitter is even more erratic. There's an awful lot of "advice" about prayer, marijuana and GMOs, as well as questions like "i herd if u have cancer and then u get aids the aids sells and the cancer sells will kill eachother off is this true." For its part, Livestrong is meanwhile retweeting ideas like "You have to be willing to exhaust everything. All your money & time. Beating it has to be your full time job." Well, thanks for the endorsement of that worthless, twisted sentiment, guys. Now people with cancer – very many of whom already have very little in the way of money and time – will finally have the incentive to finally just try. And then if they don't get better, at least they'll know it's because they didn't put in enough effort. Frankly, I far prefer the suggestion from other user to "transfer consciousness into unstoppable robot body" because at least that hack sounds exciting.

Livestrong has in the past year had more than its share of negative attention, thanks largely to its founder and former chairman, disgraced Tour de France hacker Lance Armstrong. It has lost corporate sponsors and struggled to win its community's trust. And the way to establish credibility isn't through half-assed hashtag promotions or uncurated, crowdsourced bad advice.

Earlier today, Livestrong said on Twitter, "We'd like to understand how to make more useful for you & others." All right, then, here's my advice for you, Livestrong. Engage with your community but moderate it as well. Understand that cancer is not something that gets a cutely named "daily cure" or easy "hack," and people living with it sure as hell don't need quackery with your apparent stamp of approval on it. Yes, cancer is an experience that is vastly improved when we share our collective knowledge, but "knowledge" is the operative word here. And that's the one weird tip I hope you learn.

Mary Elizabeth Williams

Mary Elizabeth Williams is a senior writer for Salon and author of "A Series of Catastrophes & Miracles."

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