Soon after Valerie Berry was diagnosed with breast cancer, her thoughts turned to money.
Even with private health insurance covering 80 percent of her costs, the bills soon stacked up. Her out-of-pocket share for the first three months of treatment added up to $8,000.
“It was scary,” says Berry, 45, a Chicago administrative assistant who was diagnosed with Stage 2 breast cancer in April.
“It got to the point where I had to stop opening bills because I was getting one every day, sometimes two.”
Paying for treatment is among the top concerns many Americans have about a cancer diagnosis.
Most people say they cannot afford the cost of cancer care not covered by insurance plans, according to a survey conducted last year for Community Oncology Alliance, a nonprofit organization of cancer treatment providers.
Only 37 percent said they could afford paying an extra $1,000 a month; for $2,500 a month, the figure dropped to 16 percent.
Seven in 10 people said they were “very concerned” about paying for medical care if they developed cancer – the same proportion as were very concerned about dying of the disease, the survey found.
And while patients and their advocates expect federal health care reform will ease the financial burdens, some cancer experts say the changes won’t fully solve the problem.
People who can’t afford medical care are more likely to delay treatment, which can have catastrophic consequences. A study in the journal Cancer in 2007 found that uninsured cancer patients were almost twice as likely to die within five years as those with private coverage.
Louisa Wilson, 63, of Bartlett, Ill., underwent surgery, chemotherapy and radiation after she was diagnosed with Stage 3 breast cancer in 1996.
She was prescribed the drug Femara to prevent recurrence but stopped taking it after three years because, she said, it was unaffordable. She also didn’t follow up with an oncologist for several years afterward.
Today Wilson is battling cancer that has spread throughout her body. Her current drug has a $318 co-pay, which she says she can’t afford on her small pension and Social Security, even with her Medicare replacement insurance. She also still owes for a $200,000 hospital bill.
“It bothers me terribly that I can’t pay,” Wilson says. “I’ve been divorced 30 years and handled everything by myself. I’ve had to ask my daughter for help, which I don’t like doing.”
Payment issues vary depending on the patient’s insurance status, and co-payments and deductibles also vary. But uninsured and underinsured patients alike face the prospect of mounting debt and even bankruptcy.
To help pay for treatment, patients have enrolled in clinical trials, sought out pharmaceutical companies’ assistance programs and used patient navigators, who help connect patients and their families with information, health care and other services.
Wilson found financial assistance to cover her drug co-pay through a counselor based in her doctor’s Winfield, Ill., office. The medical practice is an affiliate of US Oncology, a national company that supports physicians who provide cancer care.
“Most of our patients can’t pay hundreds of dollars a month” for out-of-pocket costs, says the counselor, Anne Marie Mohr, who works at Cancer Care and Hematology Specialists of Chicagoland.
“Many are taking other medications as well.”
Diane Collias, a patient navigator with the American Cancer Society, says it’s not just medical bills that patients are worried about.
“Some are concerned about not having an income and how they will keep their job while they are undergoing treatment,” says Collias, based at the University of Illinois at Chicago Cancer Center.
Berry says she fell behind as she juggled bills. Her patient navigator referred her to the American Cancer Society, which paid a portion of her $700 electricity bill through one of its charitable funds.
She also enrolled in a clinical trial so she could get a free chemotherapy drug.
Patients who delay cancer care risk not only their health but also higher costs. Breast cancer that has spread beyond the breast is two to three times more costly to treat than cancer confined to the breast at the time of diagnosis, says Matthew Moore, government affairs director for Susan G. Komen for the Cure Advocacy Alliance.
The rollout of health reform’s Affordable Care Act will bring changes; the law prohibits lifetime benefit limits and will ban annual benefit caps by 2014.
“Millions of people are going to have access to affordable health insurance they didn’t have before,” says Moore.
But problems with underinsurance will continue, says Dr. David Eagle, president of Community Oncology Alliance.
“More people will have coverage,” he says, “but it will be inadequate.”
Eagle, an oncologist in private practice in North Carolina, and other cancer specialists also say Medicare’s physician reimbursement rates remain too low, affecting the rates paid by private insurers as well as access to care.
The low rates lead some oncologists to limit the number of Medicare patients they accept and others to close their practices, the specialists say.
About half of all Americans with cancer are Medicare patients, and that number is expected to increase as cancer rates rise and the population ages.
“Because Medicare patients make up such a big part of the practice, when Medicare doesn’t pay enough, it leads to practices dying,” Eagle says.
Ted Okon, executive director of Community Oncology Alliance, praised efforts to raise awareness and funding during breast cancer awareness month in October but said a vital piece of the activism is missing.
“We are worried about finding the cure and increasing awareness and screening for women and even men, which we all support,” Okon says.
“But we have to increase awareness that there is a crisis brewing that a lot of people just aren’t aware of and some policymakers are turning their backs on.”