Kathleen Kolb is a home care physical therapist, artist, and writer. She was diagnosed with Ductal Carcinoma in Situ (DCIS) in May of 2008 and began writing a blog about breast cancer about six months later called The Accidental Amazon. Kolb’s blog received the 2011 Royal Purple MAAM Award, in which her nominator wrote that, “The Queen of Snark is ‘informative, funny beyond words and just the most beautiful person, evah!'” Sure enough. Her motto: “A little skepticism is healthier than a lot of disillusionment.” Pink Ribbon Blues echoes the sentiment, and republished two of Kathi Kolb’s essays: “Hubris for the Cure” about the Komen trademark feuds and “Whose Life Is It Anyway?” about the untidiness of breast cancer, the power and emptiness of symbolism, and the realities of living and dying with the pink ribbon disease. In “Daring to be Powerful” Kathi described the influence of feminist author and activist Audre Lorde, and the legacy she left to other women, and she’s got a Pink Peril archive on her website that documents various aspects of cause marketing and “ill-informed malarkey” disguised as awareness. The essay here, “Broke: The Cost of Breast Cancer,” considers the far-ranging financial and other tolls stemming from a cancer diagnosis.
The real cost of having breast cancer — any cancer — is incalculable. It changes your body, mind and soul. But the financial impact can last long after acute treatment is done, changing your life in ways you could never anticipate.
First, there is our inherently inequitable system of employer-based health insurance. And social ‘safety nets’ like Medicare, Medicaid and Disability Income, that provide healthcare to the unemployed, are under renewed political attack in the current economic climate. Nonprofit organizations (NPOs) can help, but do not begin to make up for the economic shortfall that low-income and uninsured cancer patients face. Nor do NPOs make it easy for people to find their services at all. Without simple, straightforward access to screening, treatment and financial assistance, the most vulnerable people are often the ones that have the hardest time getting what they need and staying alive to get it. To paraphrase a quote by Jacqueline Novogratz, “The problem with philanthropy is that none of the rich people know [any] of the poor people.”
Scraping By
Since having cancer, my own financial concerns have become much more urgent and complex. And yet, I consider myself lucky. When I was diagnosed, I had a job that came with insurance for health, cancer, and disability. I had an affordable roof over my head. I had a car. I had a savings account. I had been contributing to retirement savings for several years. The scary part was being a ‘single head of household.’ It’s just me and my paycheck — and my ability to earn that paycheck. I have no living immediate family. I have no rich aunts who might leave me a trust fund. Whenever I get sick or injured, one of the first things I worry about is whether I can afford it. Frankly, that scares me more than illness or injury itself.
Still. I’ve been lucky. So far. Relatively speaking.
I was diagnosed with non-invasive breast cancer. My health insurance paid for screening, doctor visits, surgery, radiation, oral chemotherapy. I had paid sick time. I got temporary disability income. The cancer insurance provided funds to help cover expenses like copays, gas money, and paying others to help maintain my home while I couldn’t do anything but sleep. I was able to drag myself back to work eventually and do my job. But I still went broke, spending my savings on necessary extras just to get by.
Not long after I returned to work, I couldn’t keep up. Lasting post-treatment side effects plagued me, and I had to cut back my hours to half-time. For awhile I made up for the lost income using sick and vacation time. When that ran out I worked at 80 percent of full-time and changed my status to “long-term partial disability.” That way, I could accumulate sick and vacation time again, but it meant my paycheck was 20 percent less for the forseeable future. To manage, I cut expenses and resigned myself to living on less money — one-fifth less. Since then, if I want to buy a book or have dinner with friends, I calculate whether or not I can afford it. And larger expenditures — fuel-oil, new tires, car insurance — make me cringe. I readily admit that I’m better off than a lot of folks. I was lucky I could work at all, that I still had my job and my home. But cancer has cost me a lot. I still wake up with pain every day due to scarring from surgery and radiation. I still have trouble concentrating and finishing paperwork. My fatigue is much better than it was, but even a mildly stressful event sets me back. The fear of recurrence is ever-present especially when I get a check-up. My house is still a mess, my garden neglected, and compared to those innocent days before cancer, I am still out of shape. And yes, cancer continues to cost me financially. Every paycheck. Every day.
Adding Insult to Illness
A recent story in USA Today examined cancer’s financial toll. In Cancer’s Growing Burden: The High Cost of Care, journalist Marilyn Marchione reported, “Forty years after the National Cancer Act launched the ‘war on cancer,’ the battle is not just finding cures and better treatments but also being able to afford them.” New and arguably more effective diagnostics and treatments are expensive, driving up the cost of insurance premiums, deductibles and copays. Said Marchione, “The financial strain is showing. Some programs that help people pay their bills have seen a rise in requests, and medical bills are a leading cause of bankruptcies.” A study presented by Scott Ramsey, Ph.D. at the 2011 annual meeting of the American Society of Clinicial Oncology (ASCO), found that “compared to the general population, bankruptcy rates were nearly twice as high among cancer patients one year after diagnosis.”
We all know what the last few years have been like for the national and global economy. I have friends who are unemployed. Who don’t have health insurance. Who never had cancer but suddenly find lumps in their breasts and have to scramble to pay out of pocket for a breast exam. Who are disabled now and can’t work because of what cancer and cancer treatment has done to their bodies. Every week it seems, someone I know is going broke because of a new cancer diagnosis or the lingering effects of an old one.
A survey of 216 cancer patients by oncologist Dr. Yousuf Zafar, MD, also presented at last year’s ASCO meeting, found that cancer patients spent an average of $712 per month for out-of-pocket expenses. Dr. Zafar reported that “Twenty percent [of these patients] took less than the prescribed amount of medication. One in four patients didn’t fill at least one prescription at all. Nearly half of those surveyed said they used all or part of their savings, and more than half cut spending on food and clothing.”
Getting financial help is far from easy. ASCO provides a downloadable planning resource, Managing the Cost of Cancer Care, as well as a list of organizations that provide financial assistance, Financial Resources for Cancer Care. Additional resources are listed by the Breast Cancer Care Foundation, and a financial resource directory is provided by the Patient Advocacy Foundation. In fact, the number of NPOs that offer financial help for cancer patients is literally dizzying. But the caveat with most of them is that their funds tend to be dispersed for small, specific needs, like helping provide low-cost drugs and drug copays, transportation, wigs and prostheses. However, when you are feeling overwhelmed by the shocking reality of a cancer diagnosis, the task of finding, contacting and using these resources can be an added burden. Nor do they help with the fundamental burdens of being unable to work or keep a roof over your head.
I remember helping to raise emergency funds for a friend whose husband lost his job while she was still undergoing acute treatment. Their mortgage was already astronomical thanks to the housing bubble and they were in danger of losing their home entirely. We scraped together enough money to help them pay the mortgage for a few months. Eventually, they found a local, government-assisted program to help them refinance their home and her husband found other work.
Meanwhile, as vulnerable individuals struggle, the political debate about how to fix the system rages on. The Affordable Healthcare Act continues to elicit heated argument across the political spectrum, some specious, some legitimate, about its impact, leading to the recent Supreme Court ruling on its constitutionality. The outcome of this ruling and the ongoing debate could impact not only future access to healthcare but the current status of funding for Medicaid, the program that, among other things, administers the National Breast and Cervical Cancer Early Detection Program, started by the Centers for Disease Control to provide “low-income, uninsured, and underserved women access to timely breast and cervical cancer screening and diagnostic services.”
Without adequate social safety nets, NPOs will have to play a role. Indeed, much of our healthcare system is already operated and funded by nonprofit entities. The Alliance for Advancing Nonprofit Healthcare outlines them, and the justification for their continuing role, in its report The Value of Nonprofit Healthcare. But these entities are community hospitals and health centers, nursing homes, home health care agencies and even nonprofit health plans. Some of them provide navigators for cancer patients or social workers who may help patients find housing assistance and disability income. But the financial shortfall is still significant. The studies cited above suggest that the millions of dollars raised by breast cancer NPOs often do not find their way to the people who need them. And even when they do, they don’t address the loss of wages, homes, careers, or quality of life.
How all this will play out is anyone’s guess. But during the month of October, it casts the pinkwashing of breast cancer in a less than rosy light.
