The Cost of Doing Business

Having breast cancer - or any serious health problem - can have enormous costs, everything from the existential right on down the line to the physical, emotional, relationships, time, lifestyle, and financial costs. I've written about some of the others, but I haven't written about the financial costs because I am one of the fortunate few who have both excellent health insurance and the means to cover the out-of-pocket expenses. Even so, when we were working on our tax preparation recently, I was shocked to find that we had about $5,000 of unreimbursed medical expenses in 2014, and I expect that we'll have at least that amount, if not more, in 2015. That, despite having every cent of the hundreds of thousands of dollars of chemotherapy drugs I've received paid for by Roche, and hundreds of thousands of dollars of other costs covered by my insurance. My hospital bill for my surgery was $137,000, and that was only the hospital - it doesn't even cover the services of the two surgeons and the anesthesiologist, which came to about $25,000. My brain MRI was about $20,000 and my recent PET scan was $9,400. The genetic testing that I had when I was diagnosed was $5,000. Looking at these numbers, it seems amazing that my out-of-pocket expenses are as low as they are - even though it's still a lot of money.

To me, the financial burden is an annoyance, because that's money that we would have otherwise spent on having fun, like travel, dining, and entertainment. I hate that my illness has prevented us from experiencing this fun - but it would have been just that, fun. For so many others, this is money that is a necessity for things like rent, groceries, and electricity - and so they simply can't cover the costs. Furthermore, I've mostly been able to continue working - and therefore receiving a paycheck - and for the month that I didn't work after my surgery, I received surprisingly generous payments from both the state and my company's private short-term disability insurance policy. But of all the women I've met through my support group, I am the only one I know of who has been able to work through treatment. Regular (non-targeted) chemotherapy is too exhausting - it's a full-time job just to get through it.

Most people aren't as fortunate as I am. In one study in 2012, 41% of adults (or an estimated 75 million people) reported that they had a hard time paying their bills, even with health insurance, and had been contacted by a collection agency or had to change their way of life in an effort to pay their medical bills. According to another poll, 28% of middle-income families (annual family income between $30,000 and $75,000) stated that they were currently having a serious problem paying for healthcare or health insurance. And approximately 50% of personal bankruptcies are due to medical expenses.

Though we've escaped it ourselves, Seth and I have seen the human face of this phenomenon in our neighbor, whose cancer has recently aggressively recurred. He is now selling his house, which has been in his family for 70 years, to raise money because he can no longer pay his bills. One of the terms of sale is a non-negotiable six-month lease-back agreement so that his wife and small children will be able to remain in their home for at least a little longer while they find somewhere else to live. He himself must be wondering if that six-month lease will allow him stay there until the end of his life. It's heartbreaking to know that someone just a few feet away from us is having to grapple with financial hardship at the same time he is dealing with a terminal illness.

You don't have to be sick for very long to see that our health care system is terribly broken. How to fix it is not so easy to see. There are many reasons for the meteoric rise of health care costs in this country, ranging from the consolidation of the hospital industry, to the costs of new technologies, to an increase in chronic diseases (many of which are preventable, such as obesity and diabetes), to an aging population, to plain old wasteful spending (PricewaterhouseCoopers calculates that up to $1.2 trillion, or half of all health care spending, is the result of waste). All of these factors could and should be addressed.

But there is an underlying issue, something that is at the very core of the health care industry and perhaps even our national economy - and that is the awesome power of for-profit companies, including hospitals, insurance companies, and pharmaceutical makers. I have come to believe that it is unethical, even immoral, that these businesses are profiting from individuals' illnesses and suffering. The people who work for these companies, including doctors and nurses, hospital administrators, researchers, biomedical engineers, and so on, absolutely deserve to make good livings that are commensurate with the enormous service that they provide to society. However, Citizens United notwithstanding, corporations are not people, and there is no reason why corporations need to make money on the backs of the sick. If we could take the profit motive out of the health care industry, perhaps it would no longer be an industry at all, and instead would simply be care.

Information from Aetna.com, Forbes.com, and healthcareproblems.org.