My Expirence with Privilege and Healthcare

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)

Ode to Éire

I suppose before I start, I should disclose the following: I’m not actually that Irish, I’m pretty Irish, but not very, anyone familiar with etymology could tell you “Illis” is not an Irish surname. While I’m not sure exactly how the percentages break down, I know I hail from three main areas, Hungary, Ireland, and Scotland. My maternal family’s presence on this continent predates the United States by a half-century or more. My paternal family was early 20th century immigrants for the most part. Understandably, my exact ancestry is a bit muddled underneath 300+ years of war, immigration, migration, and relocation. My skin tone and freckles alone however should attest the fact that I’ve got a little more than a touch of Irish blood in me. Regardless, today is St. Patrick’s Day, a day in which even full-blooded Italians feel a particular connection to the Emerald Isle, and I am no exception.

The Irish are in fact a quite remarkable people. British writer GK Chesterton says of the Irish,

The Irish are not only practical, but quite painfully successful. The poverty of their country, the minority of their members are simply the conditions under which they were asked to work; but no other group in the British Empire has done so much with such little. [Irish] Nationalists were the only minority that ever succeeded in twisting the whole British Parliament sharply out of its path. The Irish peasants are the only poor men in these islands who have forced their masters to disgorge. These people, whom we call priest-ridden, are the only Britons who will not be squire-ridden.

No other group has done so much with so little”. The Irish took a rocky, damp, island, and created a culture, producing individuals who have in a very real way, dominated world events for the past 200 years. Irish-American’s have played a disproportionate role in the creation of America[1], as we know it today. From military leaders to politicians to writers, the Irish can be found to have at least one finger in anything quintessentially American. The Irish are as American as America is American, the two peoples are quite inseparable. It was said of Irish-American settlers in the American west that: “[The Irish] settlers were described as a fun loving, kindly people, who would give someone the shirt off their backs, but were also known for shooting anyone who meant them harm.“[2]

I have since I was a child, loved Ireland. I love Ireland much as I love my native country, that is, I love it for reasons I cannot articulate. Ireland, more than any other place I have traveled to outside of The States, feels like home. Chesterton says this type of love is the highest form for, “The man who is most likely to ruin the place he loves is exactly the man who loves it with a reason.”, and as he goes on to say,

My acceptance … is not optimism, it is more like patriotism. It is a matter of primary loyalty. The world is not a lodging-house …, which we are to leave because it is miserable. It is the fortress of our family, with the flag flying on the turret, and the more miserable it is the less we should leave it. The point is not that this world is too sad to love or too glad not to love; the point is that when you do love a thing, its gladness is a reason for loving it, and its sadness a reason for loving it more.

I love the Irish like I love my family. Often when I am faced with adversity or a bout of depression, I’ll return to the one place the has always felt like home no matter where I am. There are no higher highs, or lower lows, then can be expressed by the Irish. Folklore, music, literature, this is my security blanket against a world of adversity and uncertainty. As the blessing goes;

I believe in the sun when it’s not shining, I believe in love even when I feel it not, I believe in God even when he is silent.

The Irish practice of melancholy acceptance of the world as it stands is one which I have tried to imitate throughout my life, and a trait I have always much admired. A humorous Irish toast goes “Here’s to a long life and a merry one. A quick death and an easy one. A pretty girl and an honest one. A cold pint– and another one!”. The Irish themselves are a contradiction in terms. At once friendly yet pugnacious, melancholy yet cheery, pious yet fickle. The Irish culture reflects the variety of life, the struggle within all of us, and the tenacious resiliency that makes the Irish Irish.

The great Gaels of Ireland,
are the men that God made mad
For all their wars are merry,
and all their songs are sad.[3]

Australian writer Beau Taplin said of the concept of home, “Home is not where you are from, it is where you belong. Some of us travel the whole world to find it. Others, find it in a person.” Éire is a place that lives in the heart of any man with a drop of Irish blood in his veins. I am forever blessed to carry a piece of home with me, something that no matter how dark my surroundings can never be taken from me. Even if the island itself fell off the face of the earth tomorrow, Ireland would live on. In every Irish Pub, in every glass of whiskey, in every folk song, in every green field, in every Irishman, there lives a piece of that island, and the ideals that sprung from it. I wish everyone, especially those of us with some Irish ancestry, a safe and merry St. Patrick’s Day.

May the road rise up to meet you,
May the wind be ever at your back.
May the sun shine warm upon your face
And the rain fall softly on your fields.
And until we meet again,
May God hold you in the hollow of his hand.

[1] For further reading on this I’d recommend The Other Irish and How the Irish Saved Civilization
[2] Quote from The Other Irish
[3] Quote from GK Chesterton, The Ballad of the White Horse

The copyright for the image in this post is fully owned by the author.

1300 Miles, 13 Cups Of Coffee, and a Few Thoughts

This past weekend I went on a short 1300-mile road trip with two of my friends. One of my friends had a college visit at the University of Southern Carolina scheduled on Friday afternoon. The plan was to leave at 7 pm on Thursday, drive through the night, arriving at 5 am. We would sleep for ~6 hours at a hotel, Shane would go to his visit, and then we would drive back to PA. Estimated travel time from Center Valley PA to Columbia SC was about 9 hours. We took my car, and I ended up doing all the driving. 

By the time we got back to PA at 3am Saturday morning, we had covered 1300 miles, 9 state lines, and I had spent 21 of the past 48 hours driving. We had burned through almost 100 gallons of gas, almost 400 songs, and I’d consumed 13 cups of coffee. This was the longest I had ever spent behind the wheel of a car. I regularly make relativity long drives, 1 hour from school to home, 2 hours from home to NYC, 2 hours from school to Philly, 3 hours from home to the beach, 4 hours from home to Albany. I’ve even made a few trips to Connecticut and Massachusetts for work, but 2 back to back 10 hour drives was more then I’d ever done before. 

20 hours behind the wheel of a car driving on interstates gave me a lot of time to think. While driving especially towards the end of both of the drives, I began to consider how adept yet awful people are at driving. According the NHTSA in 2013, 32,719 people died in motor vehicle collisions, and motor vehicle collisions are the leading cause of death for every age group from 3 to 34. Humanity has shown that we are terrible at operating motor vehicles. My own driving habits show this. When I’m driving long distances, I drive one of two ways: with the cruise control on, or with the cruise control off. Regardless of which I’m using, I have little “games” that I play while driving, which while they keep me fully engaged in the act of driving, I fully admit are not the safest way to drive. With the cruise control off, I keep myself engaged by continuously moving up and passing vehicles in front of me. Not to say I’m speed racer doing 95 in the left lane, I’ll often pass the person in front of me over the course of 15 minutes by going 1-2 mph faster than they are. With the cruise control on, I do the opposite, I keep myself engaged by trying to go as long as possible without altering my speed. I switch lanes to allow people moving faster than I am pass, or to allow people to pass who going slower than I am, but I try to avoid altering my speed, for no better reason than it’s something to do.

Neither of these are the optimal way to drive. The best way to drive would be to drive in the right lane, going to speed limit. However, I need these little games to keep me fully focused on the act of driving. My driving is goal orientated, “Im going to pass this guy in the left lane”, “Im going to get around this truck”, “Im going to drive another 30 miles before I stop for food”, “Im going to wait until I get to mile marker x to open my bag of chips”. I always need a short to midterm goal to focus on, and that fact alone makes me, and all people incredibly poor drivers. My singular focus while driving should be getting to my destination safely, but it’s not, I should never drive when Im tired, hungry, etc, but I do, I should always go the speed limit but I don’t, I shouldn’t get mad when someone else on the road is driving exceeding slow, fast, or generally not paying attention, but I do. A computer driving my vehicle would only focus on driving safely, avoiding wreaks with other vehicles, and navigating to its destination. Computers would not lose focus and start thinking about it has due next week, a computer would not dose off, a computer would not be thinking about what kind of food it wants to get.

That being said, it is frankly amazing that we humans are as good at driving as we are. Despite everything I talked about above, I’ve been driving since I was 17, put over 30,000 miles on my car in the last 2 years, and I’ve been in one motor vehicle collision since I began driving, a fender bender on a local road. When you think about what I actually did this weekend, it is astounding that driving is as safe as it is. I navigated a 4,000 lb metal enclosure at 70 mph for 20 hours across 6 states. I did this by keeping my piece of metal in between two lines with less than 1 foot on each side, while avoiding thousands of other people one the road. It amazes me that this system works as well as it does. If we were to propose the system we have today to someone living in the 1880’s, it would sound like a death trap. 

I’ve spend the majority of my life driving in Central Jersey/ the NYC Metro-area, places known for their aggressive driving. Around my home driving often seems like a competition with everyone else on the road, given the general unwillingness by drivers to do things like let others merge, move out of the way for fast moving vehicles, use turn signals, etc. I think this attitude is largely a product of the way NJ is structured. NJ has a very high population density, and being communing distance from Manhattan, during 7-9 am and 4-6 pm, it is very difficult to get anywhere. Where I grew up in Jersey is right around the intersection of almost every major highway in Central Jersey, Rt.s 78, 22, 287, 24, 95, as well as the Garden State Parkway and the Turnpike. Traffic patterns are a mess, and constantly changing. Once you get past my town and closer to Manhattan, if you miss one off ramp you just added 45 minutes to your commute. It is these crowed highway systems that lead to the driving style found in this area of the country.

Having grown up driving on roads where you have to constantly be on the look out for guys in sports cars weaving in an out of traffic, as well as being fully willing to force your way on to an off ramp, giving other drivers the “You can let me merge, or you can hit my car, your choice” look, driving below the Mason/ Dixon was refreshing. The other drivers on the road in the south were almost suspiciously courteous, driving on 81 through Charlotte NC during rush hour I was cut off twice, to put that in perspective, making my 25 minute commute on Rt. 78 and the GSP I can expect to be cut off 4-5 times. I was amazed by the level of cooperation between drivers. When I needed to switch lanes, I put my blinker on and almost immediately, a space would open for me to merge into. The cooperation between normal drivers and truckers I also found interesting. In Jersey, trucks are regarded typically as annoyances to be passed as soon as possible, and if a truck is trying to merge into your lane, you should make sure you get past them and let someone behind you let them in. Driving down 81 however, drivers worked with truckers to make driving an easy experience for all. When a truck would want to switch lanes, the car behind them would slow down to make room for the truck. When there was enough space for the truck to fit, the car would flash its brights, the truck would move over and flash it’s brake lights as a thanks. First time I saw this I thought it was a coincidence, the second time I thought it was just a particularly nice driver. By the fourth and fifth time, I finally decided that was just a thing people do down there.