Cost Awareness Anecdote: The Cost of Apples

The following anecdote is by Samuel Yang, a patient from Maryland.

Up until last May, my experience of medical costs was limited to the $100 per month premium I contributed towards my employer-sponsored insurance and the nominal co-pays associated with well-child checkups and generic prescriptions. There was never any hesitation in seeing a doctor or filling a prescription. That all changed when went I back to school.

I blindly signed up for the school-recommended family insurance and naïvely assumed myself, my wife, and my two young children would receive whatever health care we needed at a relatively small co-pay. The upfront premium of $10,000 was high, but I believed that this would cover whatever life threw at us. However, two experiences woke me up from my ignorance: my wife's endoscopy and a visit to the pediatrician.

In July, my wife was sent by her doctor to get an endoscopy to determine the cause of her stomach pain. In the weeks following her procedure, we started receiving statements from our insurance company. The statements declared that we were responsible for the full amount. We received the following explanation from our insurance company, “We don't cover preexisting conditions.” As we argued with the insurance company, the hospital bills started trickling in: $1200 from the outpatient center, $200 from our family physician, $400 for the anesthesiologist and $200 from the lab. We received six bills demanding $2600 for one procedure. As I examined the bills I was shocked by the redundancy—why is the cost for the anesthesiologist not included in the outpatient center bill? Why do I need to pay my family physician twice (the initial visit and the follow-up) for a procedure she ordered us to do? Besides feeling hung-out-to-dry by my insurance company, I felt taken advantage of by the medical system. It seemed as if everyone in that hospital wanted to include something for our visit. After fighting tooth and nail to get our insurance to cover my wife's endoscopy, they finally relented. Still, we were left with $700 to pay. For an unemployed student, $700 is not a small co-pay.

I studied the coverage booklet put out by my insurance, and I still do not understand what is covered and what is not. What I found was something similar to how we were billed for my wife's endoscopy: the procedure itself is covered one way, labs are handled another way, and prescriptions are an entirely different matter. How am I supposed to know what labs or prescriptions are associated with an endoscopy?

Compared to my wife’s endoscopy, my daughter’s first visit to the pediatrician should have been straightforward. A fever that lasted three days followed by a rash was a simple diagnosis for her experienced pediatrician. What is not simple is the billing and insurance struggles we are facing. Our insurance company decided that my daughter's fever was a preexisting condition, and as we fought with them to fulfill their responsibility, the pediatrician's office contacted us that the $115 fee is actually $321. Again, the feeling of being taken advantage of is overwhelming. It could be that our doctor's office is honest in their error, but I have never received services or products charged to me like this. In other words, when I go to the store, I know exactly how much a pound of apples will be long before I get to the cashier—and there are no “preexisting” conditions that add hidden costs at the register.

I've learned a lot about medical cost of care; that is, care costs a lot and it's not straightforward what the cost is. I know that we have paid $11,021 for an endoscopy, a visit to the pediatrician and spotty coverage for the rest of the year. It’s not merely that medical care is expensive, it’s also that I have no estimate of what my costs will be. Getting new brakes on my car is expensive, but the mechanic is very careful to give me an itemized estimate before the repair is made. Recently, my wife, after a particularly exhausting week, started experiencing pain in her chest and a tingling sensation in her arm. Being a nurse, she knew exactly the tests that would be ordered if she went into the hospital.

Despite my attempts, she refused to go to urgent care knowing that the cost of the visit, even if our insurance company cooperated, would be enormous. There's now a hesitation to use our medical resources that was never there before.

Cost-awareness anecdote: Ultimate Sacrifice

The following anecdote is from Dr. John Maa, Assistant Professor of Surgery at the University of California, San Francisco

An estimated 60% of American bankruptcies result from overwhelming medical costs. My uncle’s tale illuminates the dual tragedy of suffering catastrophic illness and being uninsured.

The 2008 recession claimed my uncle’s job, health benefits, and assets, except for a small inheritance. By 2009 he found work (but not health coverage) as a consultant.

One day he noticed that his eyes were yellow. He emailed a photograph, and I immediately recognized jaundice. I calmed him by suggesting benign causes such as hepatitis, gallstones, or liver cirrhosis. But I secretly dreaded a liver or pancreas cancer, given his recent weight loss and itching.

Laboratory and x‐ray tests, which he charged to his credit card, all suggested cancer. His doctor in New Jersey indicated urgent surgery was necessary. An appointment was unavailable for weeks at the county hospital, and private surgeons wouldn’t see him without a cash deposit. Time was ticking. Cure was already unlikely, and delays were allowing the tumor to grow. He decided to travel to the West Coast to expedite surgery.

My uncle arrived around midnight, glowing yellow; he had worn sunglasses to avoid frightening other airline passengers. He was immediately admitted to undergo a procedure to identify the site of blockage and insert a plastic stent to drain bile externally. While awaiting the outcome, I had a premonition that the worst was yet to come. The doctors brought dreadful news that a massive tumor, too large to remove surgically, lay centrally in the liver. The remote possibility existed of a benign condition masquerading as cancer. The aggressive option was upfront chemotherapy and radiation to shrink the tumor, for possible surgery afterwards. But several surgeons deemed the case hopeless, and estimated my uncle had only 6 months to live. They recommended hospice, and a more comfortable internal metal stent. My family chose not to share these findings with my uncle until he recovered from anesthesia.

The crushing blows continued. Within 36 hours, my uncle lapsed into a coma from kidney failure induced by bile toxins. Knowing the costs, we refused transfer to the ICU. Dialysis was necessary, but the nephrologists regarded the situation futile and refused treatment, comforting us that dying from kidney failure was painless. Miraculously, he rallied. Seeing improvement, the nephrologists started dialysis. We could finally share with my uncle the difficult choices ahead.

He responded “It’s hopeless. Why risk money that could provide my daughters’ education?” He asked to be made “do not resuscitate”, and declined surgery. Two weeks of recuperation made transfer to less expensive skilled nursing care possible, but here I learned it takes money to save money. Ambulance transport was mandatory, costing $1700. As I read the dispatcher my credit card information, I wondered if I could have driven him myself.

In the following days, we tried everything to minimize costs. My uncle had a fever, but refused evaluation in the ER, and was treated with blankets and oral antibiotics. His fever broke, as did the stitches on his stent, which I re‐sutured at the bedside.

In the end, my uncle made the ultimate sacrifice for his daughters by rationing his care. Death came swiftly, only 72 days after he became jaundiced. He never received metal stents, or saw New Jersey again.

His final medical bills totaled over $250,000. Charity care was denied, and MediCal unavailable since he was from out of state. After receiving a 20% discount for paying in a lump sum and in cash, we negotiated a final 40% discount.

The costs of his care can be translated as follows. Each session of dialysis equaled a month of private college tuition. Each day’s blood work would have provided a year of textbooks. The daily hospital room charge would pay for a half‐year in the dormitory. The anesthesia fee would have purchased a full year’s meal plan.

My uncle’s cause of death remains unknown. Weeks into treatment, his tumor markers came back normal. Surgery might have been curative, or confirmed a hopeless situation. The cost to know with certainty would have consumed his inheritance. The World Health Organization recognizes this universal tragedy worldwide: “The poor are treated with less respect and given less choice of providers. In trying to buy health from their own pockets, they pay and become poorer.”

Whenever someone faults the medical system for the epidemic of bankruptcies, I ask instead: My uncle was 59, and for decades had contributed to the system by paying health insurance premiums while employed. Did the system treat him fairly when he needed care?