Like a lot of other young people, I never thought about health insurance until I got sick. I was 22, and my adult life was just beginning. But less than a year after walking across the stage at my college graduation, I received an unexpected diagnosis — acute myeloid leukemia — and with it came a flurry of consultations, tests and appointments. From early on, my doctors told me I would need chemotherapy and a bone marrow transplant.
But before the shock of the news could settle in — before I could consider where and how I would be treated — I did what most Americans must do when beset with a medical crisis: I called my insurance provider.
Before I made that first phone call, I confess I didn’t know exactly what the word “premium” meant. And “co-pay” sounded to me like what happens when friends split the bill at dinner. Certainly, the term “lifetime limit” had no meaning to me yet. The last time I could remember getting sick had been a two-day bout of food poisoning during my junior semester abroad in Egypt. Now, I was facing cancer — and I was beginning to get worried about coverage from an insurance plan I knew virtually nothing about.
If you have a chronic illness in America, there’s a good chance you also hold a degree in Health Insurance 101, whether you want to or not. The first thing I learned was how lucky I was to have health insurance at all. (An estimated 49 million Americans, and nearly one-third of Americans 18 to 24 years old, are uninsured.) I was on my parents’ insurance, a plan provided through my father’s employer. It’s a comprehensive plan that will cover me until age 26 — two years from now.
I’ve been fortunate to be treated by excellent doctors at world-class hospitals. In the last year alone, my insurance has covered over a million dollars in medical expenses, including a bone marrow transplant and 10 hospitalizations amounting to a combined five months of inpatient care. It all sounds straightforward when I explain it like that. But even if you have insurance, the cost of health care — in dollars as well as in time and stress — is incredibly high.
As health care was debated around the country leading up to the Supreme Court ruling on the Affordable Care Act in June, my bills kept coming in. Every time I see a doctor, get a CT scan, receive chemotherapy or pick up a prescription, insurance covers only part of the transaction — and there’s always a bill on top of it. For a cancer patient like me who visits the hospital on a weekly basis (and that’s when things are going well), every few days I owe another payment. Keeping track of how much I owe, and for what procedure, and why, can make my head spin. Just learning the ins and outs of my plan’s coverage takes sustained, persistent attention and energy, things that sick people have in short supply.
And no matter how closely I keep track of the bills, there are always surprises and unexpected charges. During a six-week hospitalization for intensive chemotherapy, teams of doctors trickled in and out of my hospital room every few hours: my primary oncologists, the palliative care unit, gastroenterologists, X-ray technicians, infectious disease specialists and on and on. Most of the time I was too tired, too nauseated or too looped on pain medicine to remember who was who or what they were doing in my room. But my insurance company kept track. Even though my hospitalization was covered, many of the doctors who visited me were not part of my health plan, which meant that for every time they set foot in my room I would receive a steep out-of-pocket bill. After all, what was I going to do: tell the doctor prescribing my anti-nausea medication to skip my room because he happened to be out of network?
Another cost of health insurance is time. Time is money, as the saying goes, but when it comes to cancer and health insurance, to save money takes up a whole lot of time. My mother graciously took on the task of disputing claims, keeping track of bills, requesting approval for a procedure or a drug, and spending countless hours on the phone with my provider. While it may be a labor of love for my mother, in practice, working out insurance questions is just a lot of labor. Between the long hours spent taking care of me and dealing with our insurance, my health care became my mother’s full-time job.
So far, the out-of-pocket costs associated with my cancer care — co-payments, out-of-network charges, the costs of moving to a new city for treatment, fertility treatments not covered by insurance — have reached tens of thousands of dollars. The financial burden of cancer has not yet meant that my parents will need to get second jobs, or that we will have to sell our house — though I know of fellow cancer patients with and without insurance who have had to consider such options. But my mother has had to take the last year off work, a financial and professional sacrifice that’s due in part to the time required to manage my health insurance. What do others do who don’t have full-time help from a caregiver? My mother would do anything for me, but I wish she would be able to spend less time with my bills and more time with me.
In two years, I’ll graduate from my parents’ insurance. What will I do about insurance then? Perhaps I’ll gain coverage through an employer — though holding a job seems like a tall task if I’m still in treatment. Isn’t it a contradiction that insurance is often tied to employment, but that the sick people who need it most are the ones who have the hardest time staying employed? If the Affordable Care Act remains in place, at least I won’t be denied coverage because of pre-existing conditions. That’s a huge victory, but what will the cost of that coverage be, and will I be able to afford it?
When I’m lying in bed at night, I often worry about how cancer may affect my future: my career, my relationships, my dreams. Sick people don’t plan on getting sick. We shouldn’t have the added worry that someday insurance coverage may not be there. Or that a medical crisis could become a financial one too.
Over the coming weeks, Well will explore the reasons behind our troubled health care system from the perspective of the patient. The series is part of a larger New York Times project called The Agenda, which focuses on critical issues facing the next president and Congress. Join the conversation at The Agenda
By SULEIKA JAOUAD AUGUST 9, 2012
Suleika Jaouad (pronounced su-LAKE-uh ja-WAD) is a 24-year-old writer who lives in New York City. Her column, “Life, Interrupted,” chronicling her experiences as a young adult with cancer, appears weekly on Well. Follow @suleikajaouad on Twitter.