Illustration by Peter Arkle
Illustration by Peter Arkle

The next time I see my oncologist, my main complaint will be not the side effects of my cancer treatments, though I have plenty of those, but the impossibility of finding out how much those treatments will cost before I have them.

In 2006, I was diagnosed with breast cancer. I was 29. The cancer was small and, in terms of surgery and immediate recovery, things went well.

But my five-year follow-up treatment has been an endless loop of side effects that generate their own costs and -- often just as stressful -- a dizzying accumulation of medical debt.

Repeatedly I have been stunned by bills I didn’t expect because no one -- not doctors, hospitals or insurance companies -- could tell me in advance how much their services would cost.

This problem is getting worse as more people are forced, as I have been, into high-deductible health-insurance plans. As a freelancer -- I am a singer, an actress and a yoga teacher, among other things -- I have no other affordable option for medical coverage. But such plans are increasingly favored by employers, too, to help contain costs. Eighteen percent of insured adults had deductibles of at least $1,000 last year, up from just 10 percent in 2005, according to the Commonwealth Fund’s 2010 Biennial Health Insurance Survey.

By 2010, more than 54 percent of large employers offered their employees at least one high-deductible health plan, according to a Rand Corporation survey. The 2010 health-care reform law will probably expand the use of high-deductible plans because they will be a key component of the health-insurance exchanges being set up by the states, according to Rand.

Patients Don’t Decide

This kind of insurance is expected to help reduce health costs. Given a need to make higher upfront payments, patients may be more selective about the services they buy and keep spending low. But there is a significant flaw in this reasoning: Patients aren’t the ones who make the decisions about which tests and procedures to purchase. Doctors are. And doctors, along with hospitals and insurance companies, don’t let on how much the services cost.

In December, I needed an injection of Lupron as part of my cancer treatment. It would cost about $2,000 at my local pharmacy, but if I bought it there, my payment wouldn’t count toward my insurance plan’s $5,000 deductible. So I wanted to find out how much the shot would cost at the oncologist’s facility, where it would count toward the deductible.

The people managing my doctor’s office didn’t know the price of the injection and sent me to the cancer-center billing office. There, the staff took the procedure code and insurance information, and said they couldn’t tell me how much the shot would cost until after I had it. (Yes, you read that correctly.)

When I called my insurance company to see if anyone there could tell me what the price would be, I was transferred to the pharmacy department, which determined that my shot didn’t qualify for reimbursement in that category and transferred me back to medical benefits, which again suggested I contact pharmacy.

Finally, I went back to my oncologist’s office and waited until someone would help me. A nurse promised an answer -- and a week later I got one. The shot, she said, would cost $900 to $2,000.

I knew that it wouldn’t be a simple charge. Rather, the cancer center would bill my insurance company a far greater amount, and later on, based on its contract with my insurer, adjust the cost. I asked my insurance company what the final amount would be. In an e-mail, I learned that its “allowance” for the shot was $2,600.

OK, cool. That wasn’t much more than buying the medication at the pharmacy, and it would count toward my deductible. I had the injection at the cancer center.

The Actual Charge

Three months later, my bill arrived in the mail: $4,099.51. When I phoned the cancer-center billing office, I was informed that the price the nurse had quoted had been only an “estimate.” The insurance company, for its part, explained that the procedure cost more because it was done in a hospital facility, rather than a doctor’s office. The person on the phone acknowledged that the service had been billed with a “J code,” the kind that designates a doctor’s office rather than a hospital. Nevertheless, he said, Lupron costs more in hospitals. I still don’t understand how the company could use the doctor’s-office code and come up with a hospital price.

Doctors are little help in such situations. Most have no idea how much their services, tests and prescriptions cost. A 2010 study in Spokane, Washington, found that only one in 10 doctors who work in hospitals could say with even 10 percent accuracy what their services cost. When asked to name the price for a CT scan, for instance, their estimates ran from $150 to $1,800. The actual price in their area: $2,200.

Asked to price an overnight stay in the intensive-care unit, which costs $1,100, they guessed anywhere from $750 to $6,000.

Stress and Health

Many doctors seem to have no interest in finding out what services cost, even though their patients’ anguish over medical debts is profoundly stressful and unhealthy.

Very often, doctors and other health-care providers insulate themselves from their patients’ financial realities by hiring outside agencies to manage their billing.

When the cost of medical services is a mystery, it is difficult for a doctor and patient to discuss options for care. We are asked to be medical “consumers,” to choose the best treatments at the best prices from among competing providers. But we lack the information that requires. I wouldn’t buy an iPad without knowing what it costs, but I’m expected to pay whatever the medical bill demands months after I have treatment.

Decoding the serpentine systems and attitudes that keep patients in the dark about medical costs will not be easy. It will require that either doctors or insurance companies step up and take responsibility for providing the transparency that patients need.

But patients can start by demanding accountability from doctors, hospitals and insurance companies. We can and should, before doctor visits and treatments, request -- in writing -- lists of anticipated procedure codes and their costs based on whatever contracts the insurance companies have with the doctors or facilities.

If your experience is anything like mine, you will be told this is impossible. But making this question a regular part of the conversation -- affirming it as a patient’s right -- will force change. After all, we are consumers.

(Mimi Ferraro, a singer, songwriter and actress, is writing a rock-soul musical about young adults with cancer and teaches yoga in Brooklyn, New York. The opinions expressed are her own.)

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To contact the author of this column: Mimi Ferraro at mimiferraro@gmail.com

To contact the editor responsible for this column: Mary Duenwald mduenwald@bloomberg.net