I have sarcoidosis, a disease that causes immune system cells to cluster to form lumps in various organs in the body, and it has been active for a little over three years. I’ve gone in and out of remission but currently I’m in an active phase. I have a wonderful rheumatologist who began treating the sarcoid rather aggressively because it no longer merely resides in my lungs but has found its way into my liver. So to give you a sense of what aggressive means, the prednisone that I take for it has been reduced from 60 to 40 milligrams over the last month.

Over the past three years, I have been under the care of a variety of doctors for various problems that have arisen as a result of this illness. As a result, I have gained some experience as a patient, but almost more importantly given today’s standard of care, I have experience as a customer of medicine and I would like to share how I am processing what I have learned–especially when it comes to paying medical bills.

One of the things that troubled me recently was a pre-registration call I received on Friday for an MRI of my brain that was scheduled for this coming Tuesday. I resented it when the woman who handled the call ended it by asking me how I would be addressing the $479 dollar “responsibility” that I would have after my insurance paid its portion of the test. It wasn’t quite in the moment that I understood that she had limited the notion of being “responsible” to an economic construction–that came later–but I knew that I did not like her question. I trusted myself to resolve what disturbed me about her construction another time so I responded quite practically at first. Thus, with the practical understanding that I was not going to pay $479 on Tuesday, I told the clerk that I would be canceling that appointment because I had an MRI administered at another facility and they did not require any money at the time of service so I would be contacting that facility. She then sent me to a scheduler who canceled the appointment. Approximately 30 minutes later, someone else from that hospital called with the same question about my debt and how I would be taking “responsibility” for it to which I responded, “by canceling my appointment and going with another facility.” “So you did cancel?” he asked. “I most certainly did,” I told him.

By the time I confirmed the canceled appointment, I had figured out that I didn’t like being forced to accept the terms that someone else had established for what it meant for me to be “responsible.” There are more ways of understanding being “responsible” than through a discussion of resolving one’s debts. While I think it is “responsible” to pay one’s debts, it is also the case that being responsible involves being reliable and making rational decisions. When the hospital clerk called my house, she wasn’t interested in talking to me as a reliable, rational person, she was only interested in talking to me as someone with debt. It felt hostile to have someone call my home and force me, as a responsible person, to answer questions about an anticipated debt. Thus, I felt as if that woman, through the authority of the hospital, was trying to bully me.

I think that hospitals rely on having an aura of mysteriousness regarding the power of healing, the seemingly high quality and expense of the technologies currently available, and the dynamics of bringing those things together to help a single individual as a force operating in the cultural imagination to bully and exploit people. Instead of making itself appear less imposing, those working the business side of medicine (and sometimes even bit players) try to use the seeming impenetrability of their bureaucracy to intimidate you into acting in accordance with their practice. For example, if you have an MRI performed, theoretically, you can’t make the appointment yourself. This is something that gets done mysteriously through phone calls between people who make more phone calls and give authorizations and pass along codes that you apparently don’t have access to. You are supposed to provide your dates and times of availability and then someone calls you with an appointment. Thus, this all confirms how passive you’re supposed to be in this process. The business side of medicine tries to turn your balance, your bill, into the most significant moral aspect of the interaction but it seems immoral to me to exploit a person’s ignorance of a bureaucratic process. Morality at the doctor’s office gets conveyed mostly in terms of the bill.

I notice this as I have a PPO, which I chose because I was willing to pay for the choice to select my own doctors. I pay 10% of the cost until I have met my deductible. Most times, I’m billed after the service. But more and more, I’m being asked to pay what the medical practice doesn’t find insurance companies typically paying. So you get provided with notices and forms from the medical practice about your “obligations” and “responsibilities” regarding your bill before the first appointment is scheduled. I read these forms as impending bills being cast in moral terms. When I was new to the game, I was moved by it. I agreed that I owed it to the doctor to take care of my “responsibility” given that they had provided me with their expertise. I have since moved away from this position and one of the reasons for this involves my awareness of how my bureaucratic ignorance gets exploited–especially as someone who is a professional outsider, but also as an unique customer, an unwell person needing relief. No one tries to clear up any mis-understanding that I might have about the policies of one medical office being a standard practice for them all. Thus, the first time that I had a endoscopy performed, the hospital where my doctor worked required that I pay a portion of the bill up-front. The second time I had this procedure done with a different doctor, that hospital billed me. Had I known that there was a different way of handling the business of paying for the procedure, that might have influenced my decision to take on the first pulmonologist as my doctor.

As a unique, patient customer, rarely does it seem that my position as an unwell person figure into anyone’s construction of morality. Thus, payment functions as the prism through which to engage the subject of morality but not my vulnerability as a sick person in need of care. That is to say, the relationship between illness, vulnerability, sound judgement, and payment seemingly are not a part of the negotiation of how the business of medical care should be morally approached with ill people. Thus, the $356 that my GI doctor asked for up-front was not a necessary condition for the bronchoscopy she performed; that was about business, not medicine. Interestingly enough, as a business decision, it worked for her but I overpaid by $26, which I learned when at the follow-up exam, there appeared to be a credit at the bottom of a form that the administrative assistant gave me to sign. When I inquired about it, she told me that she would research it and have someone contact me. About two months later, I received a check for $26. No one gave me that kind of grace period for paying the $356. So what I have learned to do is to create my own system for dealing with medical bills.

First, I always want to know about any up-front costs that I am expected to pay. If I don’t like the terms or the figures, I will call my insurance company and ask them to help me save money. So in the case of the MRI of my brain, CIGNA put me in touch with Medical Solutions who gave me the authorization code and the telephone number for the facility where I had gone before. When I contacted that facility, I told them that I was not willing to pay them $479 for the exam up-front. I explained that I would prefer to be billed if there was a fee but barring that I would accept a payment plan that could begin when I arrived for the test. Those terms were accepted and so I have an appointment scheduled for July 2.

In instances when I am billed, I never pay the bill according to when the bill states, which typically lists “upon receipt.” I don’t typically pay it “upon receipt” because it usually doesn’t arrive at the precise moment when I have worked out my monthly budget. Just like a hospital has billing, so does my household. Recently, I received a phone call from a doctor’s office about a bill that I had not paid. I explained to that woman that the bill had arrived very late in light of when I had been seen, but nonetheless, I would pay it after I made my new budget. Thus, I told her that she could expect to receive a check for half of the billed amount at the end of June and the other half at the end of July. She thanked me and that ended the call.

Honestly, I usually don’t begin making arrangements to make any of these payments until someone calls me because I’ve learned that insurance companies don’t always pay as quickly as you may be billed. Once you have paid a bill, however, you will wait months to get reimbursed and when you call about it, they will tell you, just as sweetly, about how their billing office only processes checks on various days and who has to approve the transaction, and whose office you might call to get a sense for when to expect the approval. Thus, I feel very little urgency about paying a bill merely because it arrived. I recently received a $40 bill from an opthamologist that fell according to my budget. About a week later, they returned the check because my insurance company had covered the cost even though the practice had not expected them to cover it.

One final thing that I’ll say about this involves prescription drugs, and one of my dearest friends pointed this out to me: ask your doctor for samples. When doctors tell you to “try” something, that could be an expensive gamble for you. I had a pulmonologist once who wanted me to “try” a sinus medication that cost me $63 because there was no generic form of it. The medicine didn’t work. Oftentimes, what they want you to “try” is experimental. So fine, let them experiment within reason but they need to do that with the samples that the pharmaceutical representative left. I go through this all the time with inhalers. Some of those don’t have generics and they can be very expensive. What I’ve learned to do is to say to the doctor that I will need samples until I at least learn how much this is going to cost me. I now use an inhaler that works. My pulmonologist knows that I’m all about the samples so he gave me an entire bag full and told me that “we have tons of these things in the closet” while writing out a new prescription for me.

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