The sense of abandonment from my society

“You look nice today. People don’t come to chemo in suits very often.” The friendly and familiar receptionist mentioned as I was checking out, the always full jar of lemon flavored hard candy on the shelf between us. As I pocketed a few of the candies, I managed to swallow the nausea and metallic taste just enough to say, “Thanks. I have a job interview today.”

During my senior year in college, with medical school acceptance letter in hand, I was diagnosed with metastatic testicular cancer. Initially, life became planning surgery and meeting doctors, but early in my treatment course I received a letter that my health insurance had been exhausted and I would no longer receive any health benefits. This was after my first of four chemo cycles, with a major surgery still to come. Needless to say, this was a problem. My parents were both well educated, a lawyer and a chemist-turned-teacher, but this took everyone by surprise and presented a new crisis.

We responded by dividing up tasks. My parents quickly inventoried all the assets, including the family home, and my sister called around to all the hospitals to see what could be done.  She called the local and state governments asking for advice while I simply tried to eat food and get to class to graduate on time; I couldn’t have another tuition bill on top of my health expenses. I also started to look for a job, with a job came insurance — this much I knew.

I went to the interview, a job as a management trainee in a car rental agency, with hopes that this job would be something I could get, could do during treatment, and would provide the insurance that would save my family from financial ruin at my hands — my disease. I went to a Jesuit college and learned that truth and honesty are paramount.  So, I told the recruiter that I had cancer, I was in treatment, and that I would likely be done soon — all true.  I didn’t get the job. I still didn’t have insurance and my next chemo session, with its massive bill, was coming very quickly.

My sister learned that this would not be fun. One hospital said to her that they would treat me and then take us to court to get paid. Thankfully, I went to school in Massachusetts where a law was on the books that allowed me to enroll in health insurance without a pre-existing condition exclusion because my insurance being exhausted counted as a special qualifying event. I enrolled in an individual insurance plan, my care went uninterrupted, and I graduated on time. To this day, my sister and I remain grateful to Massachusetts for that single law, which is as much a part of my success as cisplatin and etoposide, the chemotherapy agents I received.

The bills still mounted, but were manageable. I survived, personally and financially. I pushed off medical school for a few years to get my life back in order, and moved on. I had many scary moments during my treatment, from the plastic surgeon telling me my arm might need amputation to my neutropenic fever to being discharged just in time for my college graduation.  However, what bothers me the most was, and still is, the sense of abandonment from my society when my insurance ended.

I had insurance, my parents had good jobs and were highly educated, so how was I left in the breeze?

Now that I’m well past treatment, married to my then-girlfriend with two beautiful children, and currently a practicing physician at a major university, I still find myself troubled by the “Fogerty insurance debacle of 2002.”

With all the talk about health reform, I always kept quiet in the back as those around me in residency (which I completed in 2011) offered their opinions, and I realized that most of my colleagues were blissfully ignorant as to the financial burden of major illness. Between my own illness and my residency graduation, I also lost both my parents, got married, and had my first child.  By my early 30s, I’d experienced healthcare as a provider, patient, son, husband and parent. Generalizations are always dangerous, but I felt as though nobody around me understood the financial impact of this massive industry.

This gap in knowledge bothered me, so when I finished my training and joined the faculty, I dusted off my economics degree and did something about it.

Residents and medical students that are still in-training are entering a new world of healthcare, one where financial ignorance is no longer permitted. My small part is to begin and remove the blinders, to expose them to the other stress in their patient’s experience. There are safety issues and financial waste throughout our system. Bringing these to light in an educational sense provides me with personal and professional satisfaction.

What did this Massachusetts law mean to me? When I recovered from my disease, my family and I had taken a physical and financial blow, but we could recover. Two years later, with my credit intact, I was able to borrow money to attend medical school. Without insurance, this never would have happened. There is more to surviving disease than outliving the pathology. The financial scars of medical care can be just as disabling to survivors of any disease, and as we grow and change as a profession, it is important that our providers of the future, today’s residents and medical students, have an understanding of the financial realities of their jobs.

Robert Fogerty is a hospitalist.

The sense of abandonment from my society

This post originally appeared on the Costs of Care Blog. Costs of Care is a 501c3 nonprofit that is transforming American health care delivery by empowering patients and their caregivers to deflate medical bills. Follow us on Twitter @costsofcare.

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  • Dave

    Wow. Should be required reading for everyone in healthcare. I’m glad you were living in a modern state and made it through ok.
    Out of curiosity, were you covered under a student health insurance plan when this happened? I ask because I’ve always felt that this was a huge gap in coverage – most student plans are written so that they have “per-illness” caps that in 2002 could have been as low as $10,000 in addition to woefully low annual limits. Thankfully, the ACA has put a stop to that although student plans currently being written are still allowed to maintain limits that regular policies do not have, at least until new policies written after 2014.

  • uDRAKSh2L5

    Hate to be harsh, but why did the author buy insurance that crapped out when it was needed? While it’s good that he made it through the ordeal, it cannot be denied that he, and only he, was responsible for that poor initial choice. The author is fortunate that the State of Massechusetts was/is willing to take responsibility for his poor choices, but there are a great many Americans who would prefer to maintain responsibility for their lives, and the consequences of the exercise of that responsibility. They realize that, as time passes, the consequences of allowing the state to claim responsibility will come to outweigh the benefits. Will the author be as pleased when the state decrees that, due to his advanced age, or the budget deficit, or the new union contracts, or the condition of the statehouse dome, or whatever, they will refuse to pay for treatment for his next cancer (or heart disease, etc…)? He has, in effect, given them the right to make that choice. What a short-sighted and dangerous decision.

    • SarahJ89

      Why? Well, gee maybe he wasn’t psychic? Or, as Dave points out above, his student health insurance–which is obviously sold for a reason and was the ONLY choice I ever had as a student–had a cap. Or perhaps he simply couldn’t afford better insurance on a student’s salary and was, you know, responsible enough not to want to suck off his parents. Or perhaps he was YOUNG and healthy and, being not psychic, made the logical calculation that this sort of disaster was actually highly unlikely to happen.

      Or maybe, unlike you, he simply wasn’t perfect.

      Be careful not to fall off that high horse of yours. Or if you do, make sure you have very expensive insurance. We wouldn’t want to have to fulfill our part of the social contract with you.

    • guest

      The problem I have with your reply is that before insurance reform any one of us could have had “great” insurance and have it terminated or limited at the whim of the insurance companies. Then, due to “preexisting conditions” we would have been unable to get more insurance. Then, while dying of cancer we would have to worry about our assets, bankruptcy, financial ruin and things no person should have to worry about while ill.

      I am all for personal responsibility and carrying your own weight. I think the ACA is a piece of crap. However, I disagree with your position about blaming the author for poor choices here.

  • SarahJ89

    Oh but reality just doesn’t provide the same satisfying buzz as self righteousness and judgement, Teresa.

    Thanks for your post.

  • querywoman

    Why the surprise? Private insurance companies are capitalistic entities in business to make money, not to serve the sick!

  • SarahJ89

    No, at the age of 18 I had *not* ever bought a car. I had never had a checking account and knew nothing about insurance of any kind. I had no idea how one bought it, actually. I jumped at the chance to buy the student health insurance. and yes, it was the only option I had at that age.

    What puts you on a high horse is your second-guessing ” why did the author buy insurance that crapped out when it was needed?” It’s good you’re so smart and prescient that you apparently make all the right choices and even know when and where to seek out information. You are blessed, not smarter than others and would do well to remember that.

    • uDRAKSh2L5

      The age at which you did or will buy your first car is irrelevant – it’s the research you do prior to buying it that matters. I built my first bicycle out of scrounged parts when I started college at age 23 (after years in the Army getting the GI Bill). I bought a motorcycle when I got my first job after graduating. I got my first car when I finished graduate school (paid for by my first job) at age 28.

      Student health insurance was _not_ the only option you had at that age, but it appears you never took the effort to seek out others.

      I worked very hard to obtain the things I got and I wanted to make sure I did all the “right” things to keep them and maintain them, so I did research, in the library (these were pre-internet days.) I’m smart enough to know it’s hard to say what “smart” means, and I assume I’m smarter than some, but not all. You may choose to believe that I’m blessed and I won’t argue with you, but I believe I worked harder, and, yes, smarter, than a lot of people to get where I am.
      Because of that, I don’t have a lot of sympathy for complaints. My experience has shown me that most people, most of the time, are pretty much fairly reaping their own harvest – The Ant and the Grasshopper is one of my favorite allegories. The original poster is one of the unlucky exceptions, and I do have some sympathy for him. But I don’t have much sympathy for the notion that society abandoned him, and I assert, again, that he made a bad choice (or took a calculated risk) and he’s lucky to have escaped the consequences.
      What “puts me on my high horse”, if you insist on phrasing my appreciation of the fruits of my labor that way, is that I know the value of facing reality head on, of taking full and complete responsibility for myself and the consequences of my actions, and of the value of understanding as fully as possible the ramifications of the choices I make, rather than relying on someone else (who may not have my best interests at heart) to make those choices for me.
      When you do let others make the important choices in your life, or you don’t put forth the effort to choose wisely on your own, you should not be at all surprised when those choices don’t work out so well for you when the chips are down.

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