Cancer Patient in Aetna Fight Dies

Arijit Guha, an Arizona State University graduate student who successfully tussled with health insurance giant Aetna over his medical bills last year, has died at 32, according to a close friend.

His wife, Heather Ehlers, created Facebook in tribute to this life, remembering him as a "rabble rouser, do-gooder, mustache enthusiast."

"His life was one of love, optimism, joy, humor, and compassion, and this page is to celebrate that life," she wrote.

Guha returned from a trip to India last year with a stomach ache and only one month later learned he had stage-4 colon cancer. Aetna agreed to full coverage for his treatment, but the aggressive cancer returned in the fall.

"He ran out of treatment options," the close friend said. "He'd been in hospice care for many months."

Guha died at home, Ehlers said.

"My heart is aching, but the pain is eased a bit knowing that he has the support of such an amazing community of people, so many of whom have never met him," she said on the tribute page today."

After getting his tough diagnosis, Guha faced hundreds of thousands of dollars in medical bills.

He had a policy under the university's health plan for which he paid $400 a month out of pocket, but its carrier, Aetna, had an annual ceiling on payouts. After surgery and chemotherapy, he had exhausted the lifetime $300,000 limit.

[The Affordable Health Care Act has since eliminated lifetime limits, but then, it did not include student health plans.]

Outraged, Guha turned to Twitter and other social media to make his case.

But in August, Aetna CEO Mark T. Bertolini, a former paramedic who has had his own share of medical crises, tweeted directly with Guha and agreed to pay "every last penny" of his bills.

"The system is broken, and I am committed to fixing it," Bertolini said on his Twitter account. "I am glad we connected today and got this issue solved. I appreciate the dialogue no matter how pointed. I've got it and own it!"

It turns out Bertolini and Guha had much in common.

In 2001, Bertolini's son, Eric, then 16, was diagnosed with a rare and deadly lymphoma, according to a profile in the Hartford Courant. And in 2004, when he was president of Cigna, Bertolini was disabled after being nearly killed in a ski accident. He also eventually donated a kidney to help save his son.

Bertolini admitted that the health care system was "broke" and tweeted, "There is a lot to do to make it right."

Meanwhile, Guha had raised $120,000 through T-shirt sales in his edgy campaign "Poop Strong," which riffed on cancer survivor Lance Armstrong's "Live Strong." And when Aetna stepped in, Guha said he would donate all of it to three cancer charities in Arizona.

Colorectal cancer is the second-leading cancer killer in the United States, according to the Centers for Disease Control and Prevention. In 2008, the last year for which there are statistics, 142,950 Americans were diagnosed with colorectal cancer and 52,857 Americans died from the disease.

Surprisingly, colorectal cancer is not that uncommon among younger people like Guha, especially those who have a family history of early-onset disease.

"It's not shocking at all," said Dr. Joel Levine, founding director of the Colon Cancer Prevention Program at the University of Connecticut.

Symptoms can include rectal bleeding or anemia, abdominal pain or occult blood in the stool.

Such was the case with Guha, who was diagnosed in February 2011. He had settled in Phoenix with his wife and was getting a doctorate in environmental sustainability. The couple returned from a trip to India to visit his relatives and Guha developed abdominal pain.

Woman Removes Colon to Prevent Cancer

What would you do to reduce the chance of dying of cancer? How far would you go if you had a 70 to 90 percent chance of contracting bowel cancer -- and your uncle, mother, father, and two of your brothers had died from it?

Lynne Fisher decided she would do almost anything.

So, even though she showed no signs of cancer at all, Fisher, 51, a former mental health worker, agreed to undergo what might sound like a radical surgery: doctors removed nearly her whole colon and rerouted her small intestine to perform the functions of her large intestine.

The side effects were horrific, she said. For a year, Fisher struggled to control her bowel movements. She fought depression, and she hated her large scars and the 28 staples that had been left in her body. Her Multiple Sclerosis returned. The woman she shared a hospital room with -- who'd had a similar surgery -- did not survive.

"When you're in it, it's like a dark tunnel," she told ABC News in a long phone conversation about her medical history.

But then, one day, she realized the surgery had helped saved her life. And since then, she's never looked back.

"What's a year out of your life compared to dying?" the 51-year-old said from her home in central England. "I get to watch my dogs grow up, my children grow up, my grandchild, I get to see my cherry blossoms in the tree, I get to see the sun shining in the morning, I get to go on holiday -- I get to see life."

Read: To Prevent Colon Cancer, Get Your Butt to the Doctor

Genes that cause breast cancer have been discussed widely for years. But less well known is Lynch syndrome, the gene mutation that Fisher and her much of her family inherited.

Roughly one in 370 people has Lynch syndrome, according to Lynch Syndrome International, an organization dedicated to helping people with Lynch syndrome and those who treat them. It's unclear how many Americans choose to have the surgery that Fisher had: prophylactic subtotal colectomy, which doctors describe as a major surgery that, while elective, can often save lives.

"A person will select the option of sub-total colectomy because the entire colon is at very high risk for cancer," said Dr. Henry Lynch, who discovered Lynch syndrome in the 1960s and is now the chairman of Preventive Medicine and Public Health at Creighton University and the director of Creighton's Hereditary Cancer Center. "Lynch syndrome goes from one generation to the next. And it has an early age of onset in colon cancer."

Fisher's battle with bowel cancer began more than 20 years ago. She said she has suffered unbelievable tragedy and found inspiration from some likely and unlikely places: her sons, a stray dog, and Sharon Osbourne.

'I Was Very Numb. I Couldn't Think'

Fisher's battle with bowel cancer began when she was in her early 30s. Long before she knew about her own susceptibility, her uncle got sick. He died in 1982.

Shortly after, her father got sick. She held his hand as he died from bowel cancer, almost exactly one year after his brother died.

Then, 10 years later, Fisher's brother Mickey was diagnosed with bowel cancer at 28. He was dead at 30, leaving behind two children and a pregnant wife.

"After Mickey died, I had a bit of a nervous breakdown," she admits.

Even though bowel cancer had taken three of her closest blood relatives, doctors "still didn't make a connection." Back then, few believed that bowel cancer was genetic.

One person who did was Dr. Lynch. Today, he is widely regarded as one of the fathers of cancer genetics. But when he discovered hereditary non-polyposis colorectal cancer -- known today as Lynch syndrome -- few believed him. He wanted his discovery to encourage people with family histories of cancer to get checked, but many experts argued against any link between family history and cancer.

March 22 is now recognized as Lynch Syndrome awareness day.