Over the past 18 months, I’ve had my first real foray into the American medical system as an adult. Throughout my life, I’ve been healthy, nothing much outside of yearly checkups, one broken bone, and a sports injury. But over the past year and a half I’ve seen my general practitioner and three specialists. I received two misdiagnoses, a full battery of increasingly obscure tests, culminating in a surgery from which I am almost recovered as of writing this. I handled most of this on my own (you know you’re an adult when you start making your own doctor’s appointments). What I’m going to talk about today is “privilege” in the healthcare system.
The term “privilege” is bandied about quite a bit in modern American discourse. If you’re my age and you haven’t at least seen an argument over “white privilege” you must have been living under a rock. But the “privilege” I’m talking about today has nothing to do with my skin color. Rather my (my parent’s) economic status, but I’ll circle back around to that in a minute.
Some background: Without going into too much detail, I had what turned out to be a rare condition in people my age. It was not life threatening, just something I had lived with for my entire life, but finally asked my doctor about, and got fixed. This started with my general practitioner, who misdiagnosed me and referred me to a specialist. This first specialist who is located in my town, took a step in the right direction towards a correct diagnosis. He told me that my best option was surgery, but that he was “not comfortable operating on me” because he was “unfamiliar with this condition in individuals my age”. He told me he would do some research, make some calls, and find someone in the area more experienced.
This if I’m being honest, scared the living hell out of me. I had grown up looking up at physicians as people who always knew what to do. Now I had a respected specialist sitting in front of me telling me in the same breath that “you need surgery” (which I had never had before) and that “he wasn’t comfortable operating on me”. I am, beyond happy, that he had enough humility to admit to me that he was not experienced enough to give me the best treatment. Never the less, I left that office concerned, since I now needed to track down a specialist’s specialist. I spent the next week doing my own research. I found, the guy on the east coast for what I had. He published many papers on my condition, and sat on advisory board for the patient’s association for this condition. He practiced out of Memorial Sloan Kettering in New York City, which is by any measure, one of the best hospitals in the world, and was a department head. I decided, this was my guy, this is the physician I wanted. So I called and made an appointment.
After a series of appointments, it turned out that the first specialist had also misdiagnosed me. He had gotten the symptoms right, but misunderstood the cause. This was in fairness to him understandable given his experience and the symptoms I presented as a patient. Surgery was still my best option. I decided to go ahead with the surgery, which I received at the beginning of January. I took a full week off school, since the surgery required a few days of bed rest. After I returned to school, I was on painkillers and light duty for 4 weeks. After 4 weeks, I went back to NYC for the post-op. I was cleared to return to all normal activities, and told my scar should heal in 3-6 months.
I made the trip from Center Valley PA to New York City (2-3 hours each way), a half dozen times through the course of my treatment. Initial appointment, tests, followup to review test results, consultation with the surgeon, pre-operative tests, the operation itself, post-op followup. I took a full day off classes / work each time. I paid for parking in the city, which in one case was $60 for an hour. Gas, food, lost earnings, opportunity cost. This was all before you even touch the costs of the appointments themselves.
I am covered under my parents insurance, which is generous. Initially, we weren’t sure if this physician at MSK was going to be covered by insurance, but I went anyway. This, in my mind, is the real privilege in the healthcare system. I’d gone to two doctors, wasn’t happy with the care I received. So I in my free time, researched, and found one of the top guys in the US (and extension the world) to operate on me. I decided that that was where I wanted to receive care, and I went. If it wasn’t covered by insurance (which it was), my parents would pay out of pocket, but MSK was going to be where I went. This cut out quite a bit of waiting and delays in me receiving care. I never had to wait to schedule an appointment until the hospital sorted out the billing with the insurance company. I just scheduled the appointment and if it had be paid out of pocket, it’d be paid out of pocket.
A family without the financial resources to pay out of pocket, or without private insurance, would have waited. This was, at the end of the day, an elective procedure, and could have been delayed indefinitely. Patients on public assistance can access this level of care. There were Medicare and Medicaid patients in the MSK waiting room who I spoke too. But would they have been able to google the office number, call, and make an appointment, just like that? Probably not. That’s not the way Medicare works. What I had done, in retrospect, is bought my way to the top. I wanted the best care, and my family had the financial resources to pay for it either way, so I got the best care.
Further, privilege allowed me to be in a situation where I could take off from all my responsibilities for days at a time. I wasn’t working full time, and nobody was relying on my pay. So I could take a week off from school for the surgery and recovery without too much trouble. I was concerned about a lot of things. Surgeries can go wrong, I had been two times misdiagnosed, how much was the recovery going to hurt. But never at any step, was I concerned about money.
I said above that I handled this on my own, which was, to be frank, a lie. I scheduled all my appointments, and made the decisions about my care, but my parents did a lot on the backend. Paid for everything, handled any extraneous paperwork, argued with the insurance company. They figured out how everything was actually getting paid for, they got me to and from the surgery when I was all drugged up. They made sure I ate when I was lying in bed high as a kite after the procedure. I could not imagine having handled that by myself. Healthcare is complicated, both of my parents, and myself are familiar with the system, through both professional and personal experience. We know how it works. We know at least enough to in the case of things like “is the insurance company going to pay for x” or “this bill is incorrect” where to start. I can’t imagine going into this process as someone without experience with the healthcare and insurance industries.
It’s important to note that, despite having every possible advantage, I was still waiting 2-3 months inbetween each appointment, that’s how far ahead they were booked. My condition wasn’t life threatening, so the waiting was annoying, but not terrible, or detrimental to my health. Further, it was a simple procedure. In the category of surgeries, having an outpatient elective procedure requiring very little followup, is a minor deal. It can be easy for cancer patients to rack up bills from a half dozen hospitals and private practice physicians. In the grand scheme of things, my experience as a patient in the healthcare system was minor and simple. Despite that however, and my parents helping, and my insurance company, one bill still slipped through the cracks and got sent to collections. We paid it, but if we lost track of the bills for such a minor procedure, I can’t imagine what it’s like for patients who are in and out of the hospital for months.
I’ve spent two pages, laying out a problem description. I for a variety of economic, social, and institutional factors, received some of the best healthcare available in the modern world. This same care, for a variety of factors, would have likely been inaccessible to someone poorer than me. The reasons this care would have been inaccessible extend beyond just financial means. Mechanisms exist for Medicare and Medicaid patients to receive healthcare like this. However, healthcare extends past the “health”, the care component is also important. The support I received from my family was invaluable from handling paperwork to ensuring I ate while I was recovering. Likewise, not having to have ever stress about money, wait on hold with the insurance company, or confusing paperwork, was important to my overall positive experience. The presence or lack of that kind of stress can have real impacts on health outcomes.
I don’t know what the solution is to this. It’s complicated, and no policy can exist in a vacuum. Medicare was a program designed to alleviate some of the problems relating to financial access. As someone who worked in the healthcare industry, Medicare has had unintended consequences, and introduced an additional level of complexity into certain areas of the system. That’s not saying it’s a bad program, or didn’t result in a net positive, but it did complicate the system in ways that were not foreseen.
My only thoughts on possible policy solutions are that we should be careful to not throw the baby out with the bathwater. As many problems with the health system as this experience opened my eyes to, I still consider this a blistering success for the healthcare system in my life. I say, without fear of contradiction, that I could not have received this level of care anywhere else. Despite all the benefits of universal healthcare, the rich and powerful from other countries travel here, to America, to get care. We shouldn’t throw out the baby of exceptionalism, with the bathwater of unequal access. I see a lot of politicians, calling for complete overhauls of the system, without ever considering “what is it that makes the best American hospitals, and the best American doctors, some of the best in the world?”. We don’t need to tear down our health system and build a new one. We need to find ways to make our health system work for more people. In an ideal world, I would like everyone to have access to the kind of care I received. What I do not want to see is a future where all Americans are equal in receiving mediocre healthcare because of well-intended, but poorly considered policies.
Id like to thank my doctor at MSK, and the rest of his team. The man was a raging Scotsman, and managed to make jokes during discussions of complicated medical topics, and as an added bonus, one hell of a surgeon.
(Cover Image: Wesley Wilson)