The Washington PostDemocracy Dies in Darkness

Arijit Guha, student who battled Aetna over cancer coverage, dies

Arijit Guha was a doctoral student when, two years ago, he received a diagnosis of Stage 4 colon cancer. The disease has a 8.1 percent survival rate. After hitting a lifetime limit on his health insurance policy, he began selling t-shirts with the slogan "Poop Strong" to finance his chemotherapy—and drew the attention of Aetna CEO Mark Bertolini, who eventually agreed to help cover his costs. 

Guha's cancer had become "unsuspicious" enough last summer that he took a break from chemo. His condition, however, began to deterioriate in recent months and, last Friday, Guha passed away. He was 32. This is the profile I wrote of Guha last summer, after he began pressuring Aetna to continue covering his health care costs.

Arijit Guha is a 31-year-old doctoral candidate at Arizona State University. He recently got married. And, since February, he has sold T-shirts to pay for his chemotherapy.

Guha has Stage 4 colon cancer, a diagnosis that comes with an 8.1 percent survival rate. Although he has health insurance, a student plan through the university, it has a lifetime limit of $300,000 in medical expenses. Guha has spent all of that, largely on chemotherapy sessions that cost $11,000 each.

In February, he started a Web site called Poop Strong — a play on the Lance Armstrong cancer nonprofit Live Strong — where he has been raising money to cover his medical costs, selling T-shirts and items his friends donate, including concert tickets and hand-crocheted shawls.

“My friend once said what I’m doing seems like the world’s most important bake sale,” Guha says. “It sometimes feels like this weird joke, that I’m selling T-shirts to pay for chemotherapy.”

In late July, Guha discovered a much easier way to pay his medical bills. He sent a tweet to his insurance carrier, Aetna: “@Aetna’s 4th qtr profit up 73%: ‘it continued to benefit from low use of health care.’ Helps they can ensure low use.”

After he engaged in a back-and-forth with chief executive Mark Bertolini, the insurance company moved quickly to work out a solution. Within 24 hours, Guha’s 23-word tweet had done more than six straight months of fundraising ever could: It persuaded Aetna to cover all his outstanding medical bills, showcasing the power of social media to catalyze swift action from a major company.

Bertolini tweeted at the end: “ I am glad we connected today and got this issue solved. I appreciate the dialog no matter how pointed. I’ve got it and own it!”

Health insurance companies have often limited lifetime coverage to manage risk. By writing a policy with a firm cap, they reduce their exposure to the most expensive patients, such as Guha.

The Affordable Care Act changes that: It eliminated lifetime limits in employer-sponsored plans in 2010. That regulation kicked in for student health plans in July 2012. That means that when Guha renews his coverage in a few weeks, that upper limit will be eliminated — putting his insurer on the hook for a potentially higher bill.

“Although he reached the limits of his plan, Aetna care managers have continued to provide support and we have worked to develop a solution,” the company said in a statement. “We are pleased to have found a solution for Mr. Guha, but we recognize that there is much more work to be done to fix the problems in our health care system.”

Guha has come away with a similar conclusion. He was ecstatic about the result. But he also considers himself as an exception to the rule: Not every American struggling with medical debt gets into a Twitter exchange with a health insurance CEO and catches a lucky break.

“It’s great this all worked out,” he says. “The bigger issue is that it’s so absurd that I should have to be doing this. It speaks volumes to how broken our health-care system is.”

Guha never expected to worry about his medical insurance plan and its lifetime limit. He’s grew up in Columbus, Ohio, and graduated in 2003 from Carleton College, a top-ranked liberal arts college in Minnesota. He then pursued a master’s degree from Clark University in Massachusetts. He met his wife in 2005, when the two worked together at an academic journal in Washington.

They were on a trip to India to visit family when he started getting sharp stomach pains.

“It’s inevitably the case that you get some sort of stomach bug there,” he says. “But I remember telling my wife, ‘I should get this checked when we get back.’”

Test after test came up negative, until he visited a gastrologist who made his diagnosis: Guha had a six-centimeter tumor obstructing his colon. Even then, it didn’t seem that bad. Doctors thought they could go into the colon and cut it out. Guha was scheduled for surgery immediately. He joked about how this would be his “one week with cancer.”

The procedure did not, however, go as planned. Once surgery was underway, doctors saw that smaller tumors had overtaken Guha’s abdominal lining. Those tumors were too pervasive to be removed. So Guha began what would be 18 months of chemotherapy and additional procedures. When one doctor talked about the possibility of palliative care — focused on comfort rather than a cure — he found another one.

“The past year and a half has really been surreal,” Guha says. “There’s just been a lot of shock. When I went into surgery last February, I didn’t expect any of this stuff.”

Last summer, Guha looked over his spending and realized he was quickly coming up on his health insurance plan’s lifetime limit. A chemotherapy session in January finally exhausted his coverage.

“I was left with the rest of the bills since then,” Guha says. “Right now that adds up to $118,000.”

Back when he thought his cancer experience would last one week, he considered setting up a fundraising site for those fighting longer battles. Now he was having the longer battle — and needed the financial support himself.

Poop Strong, launched Feb. 15, was a quick success. Through word of mouth, Guha raised $20,000 in three days. He found himself at the post office a few weeks later attempting to mail 300 T-shirts across the country. The order crashed the post office’s computer system.

These days, boxes of T-shirts are stacked from floor to ceiling in the apartment he shares with his wife. Medical equipment is there, too.

“In every possible way, physically and and physically, all this stuff has taken up so much space,” Guha says.

The past two years have been tough. He has been in and out of surgery. Chemotherapy often leaves him dehydrated and tired; a half-hour walk to the farmer’s market can be exhausting. He needs five medications to control his nausea.

Recent months brought better news. A scan in May showed that his treatment was working. His cancer looked “unsuspicious” enough that Guha has been on a break from chemotherapy.

“My expectation, knowing what there is to know about Stage 4 colon cancer, is that it won’t last forever,” Guha says. “I would enjoy a long break, but I do suspect I’ll be back in treatment in the near future.”

In the meantime, he received the good news from Aetna — and found himself having to decide what to do with the $130,000 he had raised, which was meant to cover his own bills.

He decided to donate the money to the Colon Cancer Alliance, a patient advocacy group, and Wellness Community Arizona, which provides support services for cancer patients and their families. Guha will also leave some money in the University of Arizona Cancer Center’s assistance fund, to help other patients.

He’s returning to his original impulse, back when he thought his cancer would be vanquished quickly, and donating the money to those still struggling to pay their own bills.