"So how much for that surgery to remove my breast and possibly save my life?" Cancer patients seldom ask that or other cost-related treatment questions in an oncologist's office. And, even if they did, many oncologists wouldn't know the answer or would want to separate treatment from expenses.
But a study released earlier this month found that even cancer patients who have health insurance are seeing their expenses mount as deductibles and cost-sharing continue to rise each year. And an earlier study found that about half of all personal bankruptcies are the result of heavy medical debt -- most declared by people with insurance. For those with no insurance, the situation is much more dire.
Such trends are pushing patients, doctors and oncology support staff to talk frankly about costs, make some treatment decisions with expenses in mind and look for government, national and community organizations that may be able to help with some expenses. A Harvard School of Public Health survey two years ago found that 22% of cancer patients with health insurance used up most or all of their savings on cancer-related costs; 5% decided to forgo some care because of costs.
"Recent research shows that the cost of cancer care is increasing at a rate of 15% per year -- nearly three times the rate of increase of overall healthcare costs in the country," says Dr. Richard Schilsky, president of the American Society of Clinical Oncology. "In addition," he says, "the newest cancer drugs can cost thousands of dollars per month of treatment, and many families report problems paying their cancer care bills."
The organization even recently released an online guide to managing cancer expenses. (Go to www.cancer.net and look under "New.") The guide includes a glossary of cost terminology (such as "co-pay" and "out of network care"), recommended cost-related questions (such as "If I cannot afford this treatment plan, can we consider other treatment options that don't cost as much?" and "Are there ways to change my treatment schedule, if necessary, to work around my job or child care?") and links to organizations that may be able to help with expenses. (See resource box for additional links.)
Doctors shy from topic
Neal Meropol, an oncologist at the Fox Chase Cancer Center in Philadelphia who helped produce the online guide, says he'd like to see physicians begin to weave cost into their knowledge of cancer care while in medical school. If that happens, it could be a boon to patients. A survey of just over 160 oncologists, published two years ago in the Journal of Clinical Oncology, found that 31% felt uncomfortable discussing costs with patients. Also, 42% said they always discuss treatment cost, 32% sometimes did and 26% said they rarely or never did.
The growing need for frank conversations about the high cost of cancer care was underscored by the report published in early February by the Kaiser Family Foundation, a nonprofit health research group based in Menlo Park, Calif., and the American Cancer Society. The report found that even cancer patients who have insurance can find themselves bearing costs that are difficult to pay off.
Thomas Olszewski, 62, of Graham, Texas, was treated for prostate cancer in 1999 and needs yearly tests so that any recurrence can be detected early. But his insurance comes with an annual $3,750 deductible, and he still owes $500 from his last checkup. He now has his cancer checkups every other year, instead of annually. "I am afraid to go to the doctor," Olszewski says, "because I never know how much it will cost me."
Schilsky, also an oncologist at the University of Chicago Medical Center, says that, difficult as it is, some patient-doctor conversations should include whether the patient wants to continue care that could be a long shot and leave patients or their families saddled with debt -- particularly when the prognosis is poor and many treatment options have already been exhausted.
"The decision is up to the patient, but the doctor should facilitate that conversation. We treat whole patients, not just an isolated cancer," Schilsky says.
Along those lines, Meropol says a chemotherapy patient recently told him that a prescribed anti-nausea drug was just too expensive. The doctor then prescribed a less expensive but also somewhat less effective drug.
Resources are available
Arash Naeim, head of the geriatric oncology program at UCLA Medical Center, says he hopes that by having the physician bring up cost, patients will feel more comfortable discussing their needs and concerns, and doctors can then refer patients to financial and social work staff to see if resources might be available or if a payment plan can be worked out. Paying at least something regularly shows good faith that could garner added assistance from the billing office.