Breast Cancer's Financial Toll: The High Cost of Fighting for Your Life
"The first doctor I saw told me that it was not life threatening, probably a cyst, and that I am too young to worry. I was 33 at the time," recalls Marci. But when she went for her annual gynecologist visit in late May, that doctor examined her breast and sent her for an ultrasound and mammogram. Those lead to a biopsy of the lump and lymph nodes, both of which came back positive. In June, she was diagnosed with Stage 3 breast cancer.
Marci had worked in the finance industry for 15 years. "I 'thought' I had insurance which was provided by my company," she says. However, after her biopsy, she realized her insurance had a cap of $10,000 a year. "Who reads the small print on that sort of stuff in an 18-page addendum?" asks Marci. "Before I had my first treatment, I was over the maximum benefit."
She went uninsured for two months until she got coverage through the Ohio High Risk Pool.
"Thank God for some health care reform. In those two months, I paid $8,000 out of pocket and about $3,000 so far this year. I pay monthly on a $20,000 bill through my treatment center," says Marci, who lives in Columbus, Ohio.
The financial toll has been huge. "I had to sell my pride and joy -- a beautiful red corvette. I was able to use some of the cost as a tax deduction last year, but that doesn't come close to helping very much. For someone who is single, with no children, you don't get many write-offs. I was told I did not qualify for most financial aid -- because I was employed," says Marci.
"I am thankful for my life and in the grand scheme of things, I feel I'm worth the money," she says. "But going through this experience -- I feel bitter that folks living on the system, with no job, are entitled to better health care benefits than I have. Because I am in the financial industry, I feel I would be a hypocrite to turn my back on my financial obligations."
The High Cost of Breast Cancer
According to the American Cancer Society, breast cancer is the second most common cancer among American women after skin cancers: A woman in the U.S. has about a 12% chance of developing invasive breast cancer at some time in her life. The American Cancer Society estimates that 230,480 new cases of invasive breast cancer will be diagnosed in women in the U.S. this year, and nearly 40,000 women will die from the disease. It's the second leading cause of cancer deaths in women, exceeded only by lung cancer. According to the National Cancer Institute, cancer care cost the American public $104.1 billion in 2006, and the largest chunk of that was for breast cancer -- $13.9 billion.
While these women are waging a fight for their lives, they often must battle on a second front as they deal with multiple threats to their finances. Jenny Saldana says she had a great corporate job at Procter & Gamble, but was forced to go on short-term disability due to breast cancer. "I was able to make my road to recovery my full-time job, but I earned 40% less, with 100% of the same bills." She says she was scammed by a debt consolidation company, which cost her both money and a potential job at Bergdorf Goodman (she says the consolidation company ruined her credit). Then she had to file for bankruptcy. Five years later, she says, "I'm still broke, but have gone back to my passion of acting and writing."
Ellen Baker estimates that her treatments for breast cancer, including chemotherapy, mastectomy and reconstructive surgery cost about $100,000, and her share after insurance was about $20,000. In addition, she shelled out $200 a week for "complimentary things, like acupuncture, hypnosis and Reiki, energy healing," which helped get her through the ordeal.
But what really proved costly was what she called the collateral damage of breast cancer -- divorce. "My husband of 22 years left after my last surgery," says Baker, whose two daughters were teenagers at the time. "I wasn't working and suddenly my husband's $300,000 salary was gone. I faced foreclosure on our home and had cars repossessed. It's because I contacted my senator, governor and others that I was able to save the house," says Baker.
Five years later, she has not recovered financially. "I'm uninsurable now, and I have until July of next year to use COBRA from my husband's company. COBRA cost me $1,000 a month, so along with my out-of-pocket expenses, health care costs me about $23,000 a year," says Baker who sees an oncologist every three months.
Baker, an executive coach, still needs two more surgeries to complete the breast reconstruction process, but because doctors want $12,000 to $20,000 up front -- which she would have to pay, then wait to get reimbursed from the insurance company -- she continues to postpone them. She remains positive though. "What doesn't kill you makes you stronger," she says. "Every day is a gift. I'm starting my life over at 59."
Know What Your Insurance Covers
C.J. just finished seven straight weeks of radiation. "I am waiting for the boom to fall and a giant bill to appear," says C.J., who says her co-pay on an MRI is $250 each time. "I felt like I got mugged with the co-pay the day of surgery -- $450. I call it breast cancer Mardi Gras -- every time I flash the rack, I don't get beads per se, but I do get co-pays."
Baker says her insurance company wouldn't pay for the anesthesia when she had her mastectomy. "I fought them for nine months before they paid."
Similarly, Heather St. Aubin-Stout, says her insurance company refused to pay for her MRI last year, which was how she found that her cancer had recurred. "I've been making payments on that bill for the last six months and I'm only halfway through," she says. "Financially, we are struggling."
With experiences like these all too common, it's important to know what's in your insurance policy -- what's covered, what's not -- and get an estimate about the price tag for your out-of-pocket expenses. "Experimental treatments are not covered," explains Dr. Daniel Fass, a radiation oncologist in Rye, New York, and professor at Cornell Medical School. "For example, 10 years ago there was some use of bone marrow transplants for breast cancer. Insurance carriers considered this experimental and did not cover it. This treatment was eventually deemed ineffective and is no longer used. Also, patients participating in a clinical trial are not covered by insurance. Patients need to determine their coverage before proceeding with treatment."
How to Reduce Expenses
Even with insurance, there can still be a huge hole in what you need to cover your expenses. Just as women successfully battle breast cancer, they can also claim some measure of victory by reducing their out-of-pocket expenses.
Rose Greene, a certified financial planner and president of Rose Greene Financial Services, is a breast cancer survivor. She says "Consider an HMO. They are not what they were decades ago. They have evolved. Co-pays and premiums are significantly lower with HMOs."
Greene compares HMO and PPO (Preferred Provider Organization) tax deductions, "PPOs have much larger out-of-pocket expenses than HMOs. Out-of-pocket medical expenses are tax deductible only if they exceed 7.5% of a person's adjustable gross income, and that threshold is hard to meet. Even with chemotherapy, exams and other treatment, high-income earners are rarely able to take advantage of tax deductions if they use a PPO."
For example, a family with an AGI of $100,000 and $10,000 in out-of-pocket expenses would only be able to deduct $2,500, explains Rob Seltzer, a certified public accountant and personal finance specialist. The poor and elderly are more likely to exceed the 7.5% threshold, he says.
What kind of expenses are likely to get you a deduction and which won't? "Generally, things that are medically necessary, say breast construction," says Seltzer. But something cosmetic like breast implants would not be."
If you want to contend that complimentary services like acupuncture or meditation, for example, are necessary for your healing and recovery, be sure to get backup -- a letter from your doctor saying that he or she recommends them for your recovery. "That way if you claim it on your taxes and you get audited, you have something to hang your hat on," says Seltzer.
Make a Case For Your Unique Needs
"My wife has cancer in one breast," says Michael Kalscheur, senior financial consultant with Castle Wealth Advisors. "Our health coverage company will pay for everything for this cancer, but does not routinely cover preemptive surgery on the other side. 'Routinely' is the key phrase. We have already started to build the case that she must have surgery on both sides and that this is the best thing long-term. Otherwise, paying for it out-of-pocket would cost tens of thousands of dollars."
How you manage your health care experience absolutely determines the quality of care you get, says Greene. "In a support group I was in, I saw that a lack of being proactive and frustration with HMOs led one woman to her death, while another woman loved her HMO because she made it her mission to take control of her medical care. She got as good of care, or arguably better care, than someone with a PPO."
Medical debt one of the leading causes of personal bankruptcy. "Ask for a payment plan," says Baker. " There is usually no interest and it is a lot better than charging your medical bills on your credit card."
Get Family and Friends Involved
Don't just rely on family and friends for emotional support -- get them on board to help you navigate the claims process. "It's overwhelming. They will try any way they can to keep from paying you. You will have to fight," says Baker.
Enlist them too, to help research doctors, treatment centers, etc. Good information can save you money. "Don't be complacent about shopping and comparing medical costs," says Jorie Johnson, a certified financial planner with Financial Futures. "I called three local radiology centers to compare prices and age of equipment. It took each center anywhere from 15 minutes to 3 hours to give me a quote for a simple mammogram and the quotes ranged from $750 to $1400! In addition, the center using the most up-to-date scanning machine was the least expensive price."
Explore All Options
Find out whether your state offers a high-risk insurance pool. It may not be cheap, but at least you can get coverage. Baker says in her state, coverage is $500 monthly with a $5,000 a year deductible or $1,000 a month and a $1,000 a year deductible.
Ask your doctor about whether you can take generics, and if there are natural, less expensive herbs and supplements that might work instead of more expensive medicines.
"Talk to the drug companies if the drugs are too expensive," recommends Kalscheur. "Due to our income and family size -- we have 8 children -- we were qualified for free or reduced cost drugs from two separate companies: Merck (MRK) and Genentech (RHHBY). This saved us thousands of dollars."
Baker also advises getting long-term disability coverage while you're healthy. "Don't wait until you are diagnosed. Having disability issuance can make the difference between financial ruin and not."
Keep cost-cutting in perspective, however. You don't want to deny yourself what is best for your recovery and healing, says Faina Sechzer, a cancer recovery coach and CEO of Health Recovery Strategies. For example, do get a second or even a third medical opinion, and don't skip important tests just because they might not be covered by insurance. When it comes to alternative, complementary care, she says don't pass up yoga, massage or mediation because of the price. And she advises against buying cheap, unattractive wigs.
"When I had breast cancer three years ago, I was looking for a plastic surgeon to do reconstruction," says Patricia Buchanan. "I was horrified to find that in my area of New Jersey, there were basically no breast reconstruction experts who were in-network for my health plan [Blue Cross, Blue Shield]. I went to see a fancy plastic surgeon in Morristown, and after evaluating me, his finance woman said the most they'd charge me would be $5,000, outside of what my insurer gave them."
"I was literally having a meltdown -- how much is a new boob, seriously? I didn't think I should have to pay a penny beyond my co-pays. This was no voluntary boob job, after all. Mine had been cut off to save my life. All I really wanted was to replace the one I'd lost. Luckily, a friend suggested I go in to Sloan Kettering, which is in-network for BCBS. You have to be adamant about not letting a breast cancer crisis ruin you financially."
This is the first in a two-part story on breast cancer and finances. The next article will examine where breast cancer patients can go for financial assistance