By Amber Smith

Betsi Olmstead was grappling with her own mortality‚ recovering from a double mastectomy and planning for nipple repigmentation. Her plastic surgeon’s office canceled the procedure‚ the last step of her reconstruction. Her health insurance plan had only paid $2‚985 of the $29‚870 bill from her previous procedures six months before.

Olmstead was embarrassed. After all‚ she had insurance. She couldn’t blame her surgeon for wanting to be paid. She got angry with her health insurer—and fearful that she would ultimately be responsible for the bill because her surgeon was not in her healthcare network.

“Normally I’m not the type of person to do this‚ but I got scared‚” she confides. “It was a lot of money.”

Olmstead‚ 48‚ found herself at the center of a financial morass. She watched bills for her care climb higher than car payments‚ learned about caps on her insurance plan‚ tried to file complaints with the state insurance department‚ fielded letters threatening collection action for unpaid bills—all while worrying about whether she’d survive breast cancer.

Her situation is far from unusual. Olmstead even worked in healthcare as director of enrollment for an assisted living facility in New Jersey‚ but that didn’t give her a leg up in navigating the system. Everyone is vulnerable to the fiscal stress that accompanies a cancer diagnosis.

“For a cancer patient‚ there’s a ton of information out there about treatments and how to exercise and what to eat‚” Olmstead says‚ “but there isn’t much information out there about the financial side.”

Finding an Advocate
Olmstead’s savior was the Patient Advocate Foundation (800–532–5274, www.patientadvocate.org)‚ a nonprofit group based in Newport News‚ Virginia‚ started in 1996 to help cancer patients. Last year‚ 82% of the people who called for help were fully insured.

“That‚ to me‚ is a statement on where we are in American healthcare‚” says founder Nancy Davenport–Ennis. “Even if you’ve got it‚ you don’t understand it.”

If you’ve got insurance‚ you still may not get the care you need. Without it‚ you’re in a worse predicament. And don’t count on a safety net. The notion that Medicaid or risk pools or state hospitals will take care of you if you fall terribly ill and are unable to pay is largely a fallacy‚ says Davenport–Ennis. While some states offer risk pools for the uninsured to procure coverage‚ many of those pools are closed. Many of the cancer centers that care for the poor have income and asset qualifications‚ putting their services out of reach of the middle class and the working poor.

So it’s not surprising that many of the calls to the social workers at Cancer Care‚ Inc. (800–813–4673, www.cancercare.org) are from people “in a state of being overwhelmed and feeling that there is chaos all around them‚” says Priscilla Hartung‚ director of social services for the nonprofit group based in New York City. “What we do is help them set their priorities‚ and then we start working with them one by one.”

Cancer Care gave away $4 million in grant money this year to people with a variety of needs‚ including cab and bus fare to and from treatment.

Susan Howard of Cocoa Beach‚ Florida‚ couldn’t afford a mammogram. Howard‚ 37‚ has health insurance with a high deductible‚ so when she felt a lump in her breast and her doctor suggested a mammogram‚ she hunted for ways to pay for it. She found Cancer Care‚ which is picking up the $63 cost of the mammogram and $87 for the accompanying ultrasound.

Howard is grateful for Cancer Care‚ but also for the results of her mammogram. “I just went yesterday for it‚” she says‚ relieved. “It’s just a cyst.”

Grants‚ such as those provided by Cancer Care‚ are not plentiful.

A Costly Battle
More often‚ patients are stuck between their insurers and their healthcare providers‚ with huge amounts of money at issue. It’s such a confusing venture that 60 of the 220 employees in the business office at M. D. Anderson Cancer Center spend their days trying to collect payments from insurance companies‚ says Ben Melson‚ chief financial officer for the center in Houston.

Texas now requires insurance companies to pay “clean claims” within 45 days‚ but‚ Melson says‚ “Now we’re haggling over what’s a ‘clean claim.’” Melson expects his center to bill for $1.4 billion of care this year. About $130 million will be written off as charity care.

Not every state has a cancer center that’s part of a state–run healthcare system‚ but children living anywhere qualify for treatment at St. Jude Children’s Research Hospital (800–822–6344, www.stjude.org) in Memphis‚ Tennessee. The hospital accepts patients up to age 18‚ regardless of their family’s ability to pay‚ but they must have a disease that’s under study at the hospital.

Spokeswoman Bonnie Cameron says the hospital files insurance claims for families who have coverage. “If a family has no insurance‚ they’re never asked to pay.” St. Jude also pays for housing‚ meals‚ and transportation for the child and one guardian for the duration of treatment and follow–up.

Claudia and Ricardo Duran from Bogotá‚ Colombia‚ have been living at Target House near St. Jude for a year while their 11–year–old daughter‚ Ana‚ undergoes treatment for acute lymphoblastic leukemia. They will be there for the duration of Ana’s treatment. When they discovered Ana had leukemia‚ friends told them about St. Jude.

“We just came‚” says Claudia Duran. “It was our risk. We bought tickets and we came. They could have told us‚ ‘No we cannot accept her‚’ and we would have had to go back‚ but it was a miracle.” Ana is now in remission.

Joining a clinical trial may sound like the perfect way to get free medical care in return‚ but beware. You’re liable to have to pay for your travel and lodging‚ even if the trial covers the cost of medications‚ appointments‚ and tests.

Andrea Denicoff‚ RN‚ a clinical trials specialist at the National Cancer Institute‚ says insurance companies expect some bills for patients with cancer but often don’t discern whether the care is part of a study. “Many times patients will get their care covered without their insurance knowing because no one has put all over their bill that this patient is in a trial‚” Denicoff says.

As for Olmstead‚ she’s in the midst of gathering documentation. Since she switched jobs after her breast cancer diagnosis‚ she needs to prove there has been no gap in her insurance coverage.

“I’m just anticipating a problem‚” she says.

Once her new insurance plan receives her proof of continuity‚ Olmstead will schedule her surgery for repigmentation. Her resolution is in sight. "Now I can finish the process."