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Can You Afford to be a Cancer Patient?

Picture from debt.org

America is the only country in the developed world that entrusts the healthcare of its citizens to a profit-making industry. Dealing with medical insurance was frustrating. As long as my yearly medical bills had been within the norm for a healthy person, things went smoothly. I was well insured through both my civilian employer and Tricare, the military’s medical insurer for retirees. The VA was also available.

But once my medical expenses began to exceed the norm, they started dragging their feet. Just when I needed to proceed as quickly as possible for the best chance at a cure, they began to delay. I spent an hour or more every day following up on the medical procedures and tests that needed to be approved and performed. It began to suck more and more time away from my job at work. People started to notice.

Ironically, having more than one insurance company only increased the delays as each would often insist that the other pay. Neither was in a hurry to accept responsibility for covering my mounting expenses. I spent many hours tracking down and talking to the decision makers, reminding them that a life was at stake and their delay felt like they were just trying to drag the process out until I died, and nobody would have to pay.

Often, the paperwork would sit on the desk of a nurse or administrator waiting for a doctor’s signature with the nurse afraid to reach out to urge the doctor to act on it. I had to plead for them to follow up or at least let me call the doctor for them and get some action.

Treatment options are advancing rapidly but the statistics lag.

My research led me to see that medical science was progressing rapidly. Most of the approved procedures had ten or more years of records to prove their efficacy. The newer and better procedures were not approved for coverage simply because they were so new. The good thing about that was that the morbidity and mortality statistics were probably unduly pessimistic. Treatments were getting better, but the statistics lagged by about a decade. The bad thing was that I was looking at the possibility of having to pay hundreds of thousands of dollars out of pocket if I wanted the most modern procedures and my life hung in the balance.

In this light, there was no question that I should opt for the best treatment, even if it cost me every penny and threw me deeply into debt.

In America, even being well insured is no protection against financial catastrophe.

I had two insurance companies, six doctors, four medical institutes, and more than a dozen labs and specialty imaging clinics to deal with. My medical bills eventually topped $360,000. Even though insurance grudgingly relented and reimbursed me for 90% of that sum over the ensuing two years, the immediate need for money wiped out my retirement 401k and maxed out my credit cards.

In addition, I lost my job and my primary insurance coverage along with it. (I know. It’s illegal. But companies do that a lot because it’s very difficult for seriously ill patients to defend themselves. Corporations often get away with firing people for medical issues and cancelling their insurance.) Because I was put on unpaid medical leave, I did not qualify for unemployment benefits and my disability insurance claim was denied because, although dying of cancer, I wasn’t technically disabled. Providing I could find a job, I could continue to work right up until my final few weeks.

It was financially devastating, yet I would do it again given the chance. It was clearly the only choice.

Tracking and correcting the billing errors

As I followed my bills, I discovered that most of them were wrong. Out of over 350 separate bills for doctor visits, lab tests, prescriptions, and the like, over half of them were incorrect. I was lucky in having worked in the medical industry managing my own medical practice. I understood things like CPT codes and diagnostic codes. I could read a bill and discuss them intelligently with administrators. But what must it be like for patients who have no knowledge of the arcane world of medical finance, having to accept and pay even the incorrect bills because they can’t understand them?

Every known disease has an ICD-10 (International Classification of Diseases, 10th Revision) code. Public health and insurance companies gather and analyze statistics about the prevalence of each disease and the cost. They need to know how many of their customers will get each disease and what it costs to treat it. From that they can determine how much they need to charge the customers — the cost of insurance premiums — in order to be able to pay out when they have to.

Each medical procedure has a CPT code (Common Procedure Terminology). The American Medical Association publishes a list of the amounts commonly charged for each CPT code by zip code each year in the RBRVS, the Resource-Based Relative Value Scale. From that list, an insurance company can determine what billing is reasonable and customary for each geographical area. Insurance companies set their premiums and the amounts they are willing to pay out based on these statistics. Indeed, when I was practicing medicine, I set the prices I charged my own patients based on this very information from the RBRVS.[1]

Insurance companies are not people, Citizens United notwithstanding. They are profit-making machines. It is the nature of the beast. Lions eat zebras; corporations make profits. If they don’t, they die. They have no moral or ethical conscience. They have to take in more money than they spend.

Look for the good in people

But corporations are run by people and many of them are kind and well-intentioned people who want to do good. So, whenever I received a refusal from the insurance company, I always tried to talk to the person who made that decision human-to-human. I usually found a sympathetic ear belonging to someone willing to help me find a way around the initial refusal to pay. It was a lot of time and work, but it was also intensely rewarding when I succeeded, and it bolstered my belief that people are basically good.

That attitude also helped me manage my stress and keep my immune system working.

Pay it forward in gratitude

It also created within me a personal obligation to pay the goodness forward. If I survived this, I would never fail to do what I could to help others going through similar tragedies. I would earn the days I had left on this earth.

[1] Resource Based Relative Value Scale. https://www.ama-assn.org/rbrvs-overview