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The real cost of cancer treatment

The real cost of cancer treatment
Jennifer Graham, Deseret News

Chemotherapy, the most common treatment for cancer, has famously unpleasant side effects, including nausea, fatigue and hair loss. Less known is how much all that misery costs.

Although costs vary by the type of drug and cancer, a month of chemotherapy by infusion typically costs more than $10,000. And for many people, that’s just the beginning of a grueling course of treatment that may involve months of chemo, radiation, surgery to remove tumors and drugs.

“Cancer is extraordinarily expensive,” said Lisa Goldman, a 43-year-old California mother of two who has advanced lung cancer and takes medicine that costs her insurance company more than $14,000 for a month’s supply. “But it’s ever-present in our lives and there’s not a whole lot I can do about that.”

Even if you’re well-insured like Goldman, the cost of treatment can empty a family’s bank account. Goldman has insurance through her husband’s job, but she has to pay the first $6,000 of her medical bills each year, which makes balancing the budget in January and February especially difficult.

More Americans die of heart disease than cancer, but cancer is more expensive with out-of-pocket expenses that are greater than those paid by patients with other conditions, like Alzheimer’s disease or heart disease, according to researchers at Duke University School of Medicine in Durham, North Carolina. They’ve been studying what they call “financial toxicity” — the toll that accumulating medical expenses exact on people with cancer.

“The financial burden on a patient can be overwhelming,” said Dr. Yousuf Zafar, an associate professor of medicine and public policy at Duke Cancer Institute.

It’s estimated that about 60 percent of bankruptcies in the U.S. — more than half a million cases — are due in part to medical debt. Americans and their insurers spent $37.8 billion on cancer drugs in 2015, and the cost is predicted to rise between 7.5 percent and 10.5 percent each year through 2020.

The average cost for a year of treatment in 2014 was $58,097, according to the IMS Institute for Healthcare Informatics. That’s more than the average American family earns.

Although in one study only about 1 in 5 cancer patients discussed the cost of their treatment with their doctors, Zafar believes doctors should talk to their patients about how cancer will affect their family’s finances and guide them to resources that might help.

There are nonprofit organizations that offer assistance, from paying mortgages and other expenses, to providing house cleaning, transportation and meals. Even so, many families still find their standard of living changes for the worse after a cancer diagnosis.

Another side effect

According to the American Cancer Society, nearly one-third of cancer survivors suffer financial hardship after their diagnosis, and they’re more likely to skip or delay treatment if they think they can’t afford it.

Those who borrow money or declare bankruptcy have the worst physical and mental health quality of life, according to Kari Dahlstrom, a spokeswoman for the Cancer Society.

This confirms research by Zafar and his colleagues, who found that 42 percent of cancer patients reported a “significant or catastrophic” financial situation caused by their illness.

People who were young or have large families were more likely to struggle financially after a diagnosis, the researchers said.

To cope, one-quarter didn’t fill prescriptions because of finances, and nearly 20 percent took less than the amount prescribed.

Despite this, a study published in The American Journal of Managed Care in 2015 found that only 19 percent of cancer patients had discussed their financial situation with their doctors, although more than half said they wanted to have this conversation with their doctors and wanted their doctors to consider the cost when offering treatment options.

Although figuring out how to pay for treatment is not part of an oncologist’s job description, the impact of financial toxicity should matter to doctors, since financial stress can worsen a patient’s health and inhibit recovery.

“As an oncologist, I’m very concerned about physical side effects, and this (financial toxicity) is another side effect of treatment,” Zafar, the lead author of both studies, said. “If we ignore the cost to patients, there’s a very good chance they may not be adherent to treatment.”

The limits of insurance

For Goldman, of Mountain View, California, the sticker shock of cancer treatment was secondary to the shock of learning she had Stage IV lung cancer at age 41 since she’d never smoked and had always been healthy until a nagging cough sent her to the doctor.

Soon, however, she found herself enduring eight-hour chemotherapy infusions that cost more than $15,000 each, and she had to have a session every three weeks for eight months.

The chemotherapy was so expensive that when she graduated to a twice-daily pill — its cost before discounts and rebates, $14,336 a month – this seemed reasonable by comparison.

Although she is an attorney in good standing with the California Bar, Goldman had been caring for their two children (now 10 and 13) full time, and she was insured through her husband’s university job.

Even so, they have to pay the first $6,000 of her treatment before they’ve had a chance to accrue the money in a medical savings account, and insurance doesn’t cover the auxiliary costs of cancer: child care, nutritional supplements, high-quality food and, in Goldman’s case, acupuncture, which can cost more than $100 a session.

She receives a monthly disability check from Social Security that helps to cover the extras, and her parents and in-laws have helped the couple with money for vacations.

“I feel really fortunate in that I’ve had more support than a lot of cancer patients have,” said Goldman, who has been writing about the ordeal on a blog called “Every Breath I Take.” But her case illustrates what many other families know: Cancer can affect not just the patient’s finances, but that of the extended family as well.

Molly MacDonald of Beverly Hills, Michigan, is the founder of The Pink Fund, a nonprofit group that helps pay the basic expenses for women experiencing extreme financial hardship because of breast cancer. She knows of one man with cancer who had to borrow $300,000 from his mother to pay for his treatment, and her mother paid her mortgage for six months when she was in treatment and broke.

MacDonald identifies with the 63 percent of Americans who say they wouldn’t know how to cover an unexpected $500 bill. She was diagnosed with breast cancer in 2005 at age 54, seven years after a divorce that left her with five children under the age of 13 and no savings.

She was also between jobs, so her priority was to pay the COBRA premium, which was $1,274 a month.

After paying that, and buying food for her children, there wasn’t much left. She had to beg creditors not to repossess her car, and even with her mother’s help, her house went into foreclosure. She began to think that her children would be better off if she died and they could collect on her life insurance.

In waiting rooms, she talked to other women in similar predicaments and got the idea of a financial bridge to help women over the dark waters of treatment. Since incorporating in 2007, The Pink Fund has distributed more than $1.5 million to help nearly 1,500 women.

They include a single mother receiving treatment while her mother was dying of pancreatic cancer, and a woman who had only catastrophic insurance and couldn’t afford to pay the deductible and take time off work. (To combat potential fraud, The Pink Fund issues payments directly to creditors. Also, applicants must provide two years of tax returns and two months of bank statements.)

Cancer-free for 11 years now, MacDonald, 65, is a crusader for helping women in the circumstances she once endured. Like Zafar, the Duke oncologist, she encourages people to discuss their finances with their doctors, even though there is currently no medical coding that allows doctors to be paid for this time.

“Talking about personal financial issues is embarrassing and challenging, but it’s an important conversation,” she said. She encourages people to carefully read the explanation-of-benefits forms, and learn about medical coding, to be sure that your bills are processed correctly. If an EOB code is one digit or letter off, it could affect your co-pay.

Also, take your most assertive relative or friend to the doctor with you, and have that person ask the questions and demand the answers you need, she added.

If you still can’t afford treatment, look into nonprofit groups that offer assistance (such as the HealthWell Foundation and the Cancer Financial Assistance Coalition), apply for co-payment help from groups funded by pharmaceutical companies (a website called Rxassist shows options), or ask your hospital for a payment plan, MacDonald said, but get it in writing, and don’t miss a payment, or you’ll be in trouble again.

Although The Pink Fund only helps people with breast cancer, MacDonald hopes others start similar funds for other types of cancer; someone recently inquired about starting a Blue Fund for prostate cancer, she said.

“My goal is to help people get what they need and to encourage other people who want to make a difference. If I could start this while standing in line at the food bank, they can, too.”

EMAIL: jgraham@deseretnews.com

TWITTER: @grahamtoday

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