The real cost of having breast cancer — any cancer — is perhaps incalculable. And there is no doubt that having cancer changes your life forever, emotionally and physically. But the financial impact can last long after acute treatment is done, changing your life in ways you could never anticipate.
I am hoping that this post will be the first of a number of them to examine various aspects of these costs — the obvious ones and the hidden ones. The purpose of this post is to start the discussion, starting with a look at how much cancer has cost me personally, and expanding it, here and in future posts, to look at how it can affect any of us, as individuals and as members of society as a whole.
The costs of cancer are buffeted by so many factors — political, socioeconomic, scientific, spiritual — it would take several books to consider them all. But my motivation comes from discussions I used to have with Rachel, of Cancer Culture Chronicles about what a largely miserable job we do in this country addressing and providing for the real costs of cancer. Because our healthcare access is rooted in a system of employer-based health insurance, it is inherently inequitable. Meanwhile, our so-called social ‘safety nets’ — like Medicare, Medicaid and Disability Income — are under renewed political attack in the current economic climate.
Nonprofit organizations can help, but do not come close to making up the economic shortfall that faces low-income and uninsured women and men who are facing cancer, and often do an inadequate job — or no job at all — providing access to their services. Komen’s recent debacle over funding for Planned Parenthood illustrates the spurious politics behind many nonprofits and their stated missions. However you look at the big picture, without clear, straightforward, and simple 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 Acumen Fund Founder and CEO, Jacqueline Novogratz, “The problem with philanthropy is that none of the rich people know [any] poor people.”
Back in December, I wrote a post about how to do estate planning, write a will, specify advanced directives for healthcare, and to plan how you want to leave things when you die. [See Exit Strategy.] I’ve been slowly making my way through the advice I outlined in this post. Just yesterday, I had my second appointment with a professional financial advisor, a good friend of a good friend, who is helping me figure out how to afford to retire someday. Retirement planning is something we all need to do something about. But since having cancer, this has become a much more complex and worrisome concept for me. And yet, I consider myself lucky.
I’m lucky because I had a job that comes with health insurance, cancer insurance, and disability insurance when I was diagnosed. I had an affordable roof over my head. I had a car. I had a savings account. I had already been contributing to retirement savings for several years. The scary part was that I was a ‘single head of household.’ It’s just me and my paycheck — and my ability to keep earning that paycheck — that keeps me off the streets. I have no immediate family members still alive. I have no rich aunts who might leave me a trust fund. Whenever I’ve gotten really sick or injured, one of the first things I’ve thought about is whether I can afford it. And frankly, that has often scared me more than the illness or injury itself.
However, I’ve been lucky. So far. Relatively speaking. When I was diagnosed with breast cancer, it was early cancer. It was non-invasive. My health insurance paid for screening, doctor visits, surgery, radiation, oral chemo. I had paid sick time. I was able to get temporary disability payments. The cancer insurance provided extra funds to help cover unexpected expenses — office visit and drug copays, gas money, paying other people to help keep my house from falling down around me when I couldn’t do anything but sleep. And I was able to drag myself back to work eventually and still do my job. More or less. And I still went broke, ran through my savings, needed to spend money on extra things, extra help, just to get by.
Not long after I returned to work, I found I couldn’t keep up. Post-treatment long- and late-term side effects and complications plagued me. I had to cut back my hours to half-time. For a while, I was able to make up for the lost income by using up my sick and vacation time. When that ran out, I scrabbled and crawled my way back to working at 80% of full-time, and changed my status to long-term partial disability. That way, I could start accumulating sick and vacation time again, but it meant my paycheck was now 20% less for the forseeable future. I tightened my belt, cut expenses where I could, lowered a lot of expectations, and resigned myself to living on less — one-fifth less than I was used to. And still I considered myself lucky I could work at all, that I still had a job, and could mostly keep the wolf from the door.
Meanwhile, I still wake up with pain every day, caused by scarring from surgery and radiation. My brain still runs out of steam unpredictably. Although my fatigue is much better than it was, even a mildly stressful event can throw me right back under the bus at the drop of a hat. Then there is the ever-present fear of recurrence that whips itself up whenever I have to get a check-up. My house is still a mess, my garden is still neglected, and compared to those innocent days before cancer, I am still out of shape, although I readily admit that I’m better off than a lot of folks. Whenever I want to read a new book or have dinner with friends, I have to calculate whether I can afford it this week. And recent larger expenditures — to fill my fuel-oil tank, get two tires and a brake job for my car, and pay for car insurance — have left me cringing.
Cancer has definitely cost me a lot. And continues to. Every paycheck. Every day.
Adding Insult to Illness
Several of my friends have not been so lucky. I was diagnosed in 2008, a few months before the housing bubble burst and the economy crashed. I’ve lost count of the number of friends who lost jobs right before or right after they were diagnosed, or whose spouses did while they were undergoing treatment. I remember in those early days helping to raise emergency funds for an online breast cancer forum friend whose husband lost his job right before Christmas. She was still undergoing acute treatment. Their mortgage was already astronomical. Now they were in danger of losing their home entirely. We managed to scrape together enough money to help them pay the mortgage for a few months and buy a few Christmas presents for their two little boys. They managed to find a program to help them refinance their home. Her husband was able to find other work eventually. They scraped along by the skin of their teeth.
We all know what the last few years have been like for the national and global economy. I still have friends who are unemployed. Who don’t have health insurance. Who never had cancer but suddenly find lumps in their breasts. Who are disabled now and can’t work because of what cancer and cancer treatment has done to their bodies. Every week, someone I know is going broke because of new cancer or old cancer.
A recent news story in USA Today examined cancer’s financial toll. In Cancer’s Growing Burden: The High Cost of Care, journalist Marilyn Marchione reports, ‘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 diagnostic and treatment equipment, drugs and surgical techniques are expensive, driving up the cost of insurance premiums and copays for those of us who have insurance in the first place. And unanticipated, lifelong expenses impact everyone. As Marchione further states, ‘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.’
Meanwhile, getting help with the financial strain of having cancer is far from easy. When you have been diagnosed with cancer, it can be a daily challenge not to panic, let alone try to find and sort through getting help. The American Society of Clinicial Oncology provides a downloadable planning resource at this link: Managing the Cost of Cancer Care. Their list of info and links to organizations that provide financial assistance is here: Financial Resources for Cancer Care. But the reality of simply making use of these resources can be a burden in itself, at a time when you are feeling least able to take care of business.
While vulnerable individuals struggle with all this, the political debate continues to rage on about how to fix it, often freighted with far more rhetoric than constructive reasoning. Many people are probably unaware of how large a sector of our healthcare system is already operated and funded by nonprofit entities. The Alliance for Advancing Nonprofit Healthcare outlines the extent of this reality, and the justification for continuing it, in its report The Value of Nonprofit Healthcare. The Affordable Healthcare Act continues to elicit heated argument across the political spectrum, some specious, some legitimate, about its impact on our system. Later this month, the Supreme Court will begin to hear oral arguments on its constitutionality, the result of which could impact not only our 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.”
How all this will play out is anyone’s guess. But I predict that a lot of us will be wearing tighter belts — if we can afford belts at all — in the future.
How much has cancer cost you or someone you know? Please share your stories below or email them to me at email@example.com.