Cancer Realities

By Heather Millar

Arijit Guha, 31, is a graduate student at Arizona State University. He’s working on a Ph.D. in sustainability. In February 2011, Arijit returned from a trip to India with a debilitating stomachache. After some tests, doctors told him that he had Stage IV colon cancer that had invaded his abdominal wall.

Since then, Arijit has had more surgeries and chemotherapy, or, as he puts it: He’s been “filleted, disemboweled, and bathed in hot poison.” All that costs money, of course. Arijit had been paying $400 a month for his student health plan. After a year of treatment, in February 2012, Arijit’s medical bills reached the $300,000 benefit cap set by his plan. So Aetna, the health insurance company managing his policy, discontinued his coverage.

Arijit’s cancer, alas, continued on. Treatments to keep him alive had cost $118,000 and counting by the end of last month.

But Arijit didn’t give up. With good humor and resourcefulness, he started a website called “Poop Strong” where he told his story, solicited donations to help pay for his treatment, and sold “Poop Strong” merchandise. My favorite items are the “Keep Calm and Poop Strong” t-shirts and infant onsies done in the style of the “Keep Calm and Carry On” World War II posters from England. You can read full accounts of Arijit’s story here and here. If I ever have Stage IV cancer, may I maintain the sort of humor that leads to designing leather bracelets embossed with “Poop Strong” and  irreverent “Arijit Loves Me” t-shirts.

In July, Arijit’s fundraising campaign and Twitter feed got the attention of Aetna. First, it seems, the Aetna tweets came from the public relations department, but then the CEO Mark T. Bertolini, @mtbert, got involved. A friend of Arijit’s posted the most salient exchanges on Storify, here.

My favorite excerpt:

“@Poop_Strong We care about our members. We want you to be empowered to be healthy and make informed decisions. (con’t) ^TS”

“.@AetnaHelp @Aetna That’s so sweet you want me to be empowered. Does @mtbert care to empower me by paying my $118k and counting in bills?”

Long story short: The public outcry on Twitter goaded Aetna into covering Arijit again as of the first of this month. The healthcare giant has also committed to paying the bills that accrued during the six months or so that Arijit was not covered.

So that’s a happy ending for Arijit. He’s going to donate the money he made from Poop Strong to The Wellness Community — Arizona, University of Arizona Cancer Center’s Patient Assistance Fund, and the Colon Cancer Alliance. Good for him. I hope he continues to respond well to treatment and that he succeeds in avoiding medical bankruptcy.

But there are so many things wrong with this story:

• At one point, Aetna’s CEO criticized Arijit for not questioning why his premiums were “only” $400. Maybe it’s been too long since CEO Bertolini was a struggling student trying to survive on a stipend. If memory serves, $400 is a fortune for a graduate student. Insurance works because the costs of illness are shared by the much larger pool of healthy, premium-paying people. My cancer treatment costs stand at $600,000 and counting for a plain vanilla case of breast cancer. Surely the student health plan cap of $300,000 is artificially low? Surely it wouldn’t bankrupt a huge company like Aetna to place caps at a more realistic level? Young people do get cancer, after all. Surely Aetna’s actuaries could figure that in somehow?

• It’s appalling that in a so-called “First World” country that a cancer patient has to sell merchandise and launch a charity appeal to pay for his treatment after less than a year.  I’ve written before about kids starting lemonade stands to try to help pay for a parent’s chemotherapy, not only here in the US but also in Britain. This is complete nonsense. As so-called enlightened societies, how can we allow this to happen? Lemonade stands make a good story, but they do not a healthcare policy make.

• Aetna CEO Bertolini noted on Twitter that the “system is broken.” I think we all know that. But it always annoys me when huge corporate bigwigs say such things. They seem to imply that some disembodied force—not them, not their corporation—broke the healthcare system. We all broke it: patients who want every test, big corporations, lawsuit-fearing doctors, researchers who devise ever more expensive ways of fighting disease, policymakers who fail to insist on rational pricing system for healthcare.

• We all need to take responsibility; that’s the only way we can have a rational healthcare system. Of course, that means taking personal responsibility. But Arijit could hardly be called irresponsible. He made sure he had coverage; it’s just that that coverage wasn’t very good. It seems that his most grievous mistake was to get diagnosed with cancer at a young age. He lost in the actuarial sweepstakes.

Illness is everyone’s fate, eventually. In my view, in addition to personal responsibility, taking responsibility means taking care of each other in health, and in sickness. Remember: You may be well today, but you might be a cancer patient tomorrow. Do you even know the coverage cap on your health plan?

• And what about cancer patients who aren’t as well-connected, well-educated, and savvy as Arijit?

As one angry Tweeter put it not long after Aetna relented in Arijit’s case, “@Aetna @Aetnahelp Great! Now what will you do for the thousands of sick customers who don’t have a vocal network like @poop_strong‘s?”

That’s a question we should all be asking, of ourselves, of our insurance companies, of our policy makers.

What do you think?