James Mannett rarely thought about medical bills or insurance during 41 years of near-perfect health. Then he got cancer and became an expert.

 

Cancer Patient Struggles With Health Coverage

3:08

Cancer Survivor James Mannett talks about his struggle with his insurance company when seeking coverage for his cancer treatments and medications. Now an industry expert, he shares the lessons he's learned when dealing with insurance companies.

Mr. Mannett was a fitness buff during his decades as a sales executive for General Electric Co. and other companies. He owned a four-bedroom home in Southern California's tony Laguna Niguel, three cars and a Cessna plane that he flew for fun. After moving to Phoenix, he quit GE in early 2004 and used his savings to get into real-estate investment.

The next year, he was diagnosed with a rare, aggressive form of carcinoid cancer that affected his small intestine and liver. Mr. Mannett, now 45, has so far had six surgeries and dozens of pricey lab tests and imaging scans. He's been to three hospitals and seen experts at several more. He estimates that his treatment so far has cost around $600,000, including travel and other expenses, with about $100,000 of that coming from his own pocket. Mr. Mannett, who now lives in a recreational vehicle and is supported mainly by federal disability benefits, continues to receive periodic chemotherapy to contain the cancer in his liver.

The ordeal has given Mr. Mannett an education on navigating the financial straits of being treated for a major disease. It's an experience that can provide lessons for all of us about how to defend our own interests, even when we're at our most vulnerable. The bottom line: Smart medical consumers can save money if they track their bills as closely as they monitor their health.

When his insurer disputed some doctors' bills, for instance, Mr. Mannett got both parties together on a conference call to work out a compromise. By getting acquainted with a case worker at his insurance company, he learned how to negotiate lower fees from surgeons before an operation took place. And by becoming friendly with financial clerks at doctors' offices, he has been able to secure discounts on some services.

Michael Schennum for The Wall Street Journal

James Mannett has cajoled and pleaded his way to more affordable treatment.

"Unless you go through something like this, you don't understand this stuff," says Mr. Mannett, whose computer contains dozens of his appeal and complaint letters about health-care charges and coverage decisions. Before, "I just assumed that when you have insurance and you have a bill, they pay it," he says.

After becoming self-employed in 2004, Mr. Mannett decided he needed health insurance. He chose a policy from Assurant Inc. that an agent said would cover all his expenses after he met an annual deductible of $4,950. Mr. Mannett, who had never bought his own insurance before, says he didn't notice that the plan included an additional $500 annual deductible for seeing doctors out of the insurer's network, or that its payments for such doctors would only add up to 80% of what Assurant deemed customary charges, not the actual billed amount.

In September 2005, Mr. Mannett felt a sharp pain in his abdomen. At the emergency room of Phoenix's St. Joseph's Hospital and Medical Center, a scan revealed a five-centimeter tumor on his small intestine, and three tennis-ball-size tumors in his liver. The doctor told him he likely had only two years to live. "It was very surreal, I couldn't believe I was hearing what I was hearing," says Mr. Mannett.

Doctors removed the tumor on his small intestine and a third of his colon. He went home a week later, accompanied by his mother and a cousin, a nurse, who had come to care for him.

As Mr. Mannett recovered, the bills stacked up. Assurant wasn't making any payments, he says. Instead, the insurer demanded from Mr. Mannett the names and addresses of every doctor he'd seen for the previous five years, so it could verify that he hadn't concealed his cancer when he bought the policy. The investigation dragged on for months, until, according to Mr. Mannett, he called the insurer and warned that the next contact would be from his lawyer. Soon after, he says, Assurant paid the hospital more than $29,000, as well as several other bills.

Assurant said it couldn't comment on Mr. Mannett's case due to privacy concerns.

Still, Mr. Mannett spent more out of pocket than he expected. Beyond his deductible, he owed several hundred dollars to some doctors who charged more than his insurer paid. He hadn't realized that even though the hospital was in his insurer's medical-provider network, some physicians working there were not.

In a statement, St. Joseph's said, "We have been working hard to provide additional information to patients to try and make our charges (and how people pay for them) more understandable."

Mr. Mannett spent the next few months seeking doctors' opinions about how to treat the cancer in his liver. During this time, he also became familiar with the intricacies of the medical-billing system. Before writing any checks, he double-checked calculations on his insurer's explanations of benefits. He also learned that, before Assurant would pay for expensive medication to control his digestive problems and other symptoms, he needed to obtain letters from his doctors explaining the need for the drug and pre-authorization from the insurer. He says he found a helpful case worker at Assurant, whom he began consulting about coverage.

In early 2006, Mr. Mannett settled on a dramatic surgical procedure at Los Angeles's Cedars-Sinai Medical Center. The surgeon would remove half of his diseased liver, hoping the organ would regenerate itself. On the advice of the insurance case worker, Mr. Mannett got the offices of the Cedars oncologist and surgeon, who weren't in the insurer's network, to agree in advance to accept Assurant's usual rate as their full payment. He believes the move saved him thousands of dollars.

But when Mr. Mannett awoke in the recovery room, he learned his liver had proved too damaged for the surgery. The incision then became infected and had to be re-opened and cleaned. He went home a week later, and a nurse came regularly to dress the open wound.

Then the bills started arriving. Mr. Mannett says he was surprised to learn that his agreements with the oncologist's and surgeon's offices didn't include the cost of imaging scans and lab exams. When his head cleared between doses of painkillers, he convened three-way conference calls between those doctors' billers and his insurer to hash out some disputed fees. He also got a few charges reduced by appealing to a friendly staffer in one of the billing offices. And he wrote letters asking for other charges to be waived because of "severe financial hardship." Mr. Mannett estimates his efforts saved him more than $10,000 on the cost of the scans and lab exams.

Cedars-Sinai said it couldn't comment about Mr. Mannett because of privacy laws. Generally, the hospital has a variety of programs to help patients in financial need, it said.

Once his surgical wound healed, Mr. Mannett decided on a risky procedure that would pump chemotherapy drugs directly into his liver. The goal was to blast the cancer, but it risked destroying Mr. Mannett's liver or causing a heart attack from the shock. Aubrey Palestrant, an interventional radiologist in Phoenix, agreed to do the surgery, which would have to be performed more than once.

Desperate to get a treatment that he figured was his last chance to survive, Mr. Mannett chose to not raise the billing issues in advance with Dr. Palestrant, who wasn't in Assurant's network. After two rounds of treatment in 2006, Mr. Mannett was told that all of his visible tumors appeared dead or dying, though the cancer was likely to reappear. Since then, Mr. Mannett has had two more chemo treatments, for a total of four.

Later in 2006, Mr. Mannett got a bill from the radiologist's office that said he owed nearly $8,200 after insurance payments of about $1,100. Additional bills followed. A financial-hardship letter to the doctor's office didn't win a discount. Mr. Mannett says he then called Dr. Palestrant personally to plead his case and the doctor agreed to accept the insurer's rate as his full payment, forgiving Mr. Mannett's portion. Relieved and grateful, Mr. Mannett says he choked back tears.

Dr. Palestrant didn't return calls seeking comment.

Write to Anna Wilde Mathews at anna.mathews@wsj.com